Here are some pictures of our "trip." Caeden enjoyed his "big bed" and also the HUGE play structure. And Joel, as you can see, enjoyed the hot tub. I did too. :)
Wednesday, December 29, 2010
Pictures from our Staycation
Here are some pictures of our "trip." Caeden enjoyed his "big bed" and also the HUGE play structure. And Joel, as you can see, enjoyed the hot tub. I did too. :)
Laughing Joel
This video is an "old" one, and many of you have already seen it if you are on my Facebook, or if you live anywhere close to me. :)
I wanted to put it on here for those of you who only know Joel through my blog. This is my boy at his happiest and best. Not at his most "able" as by the time this video was taken, he had already lost most of his head and torso control, and was gt fed. But this is him in his top form of interacting and being happy.
The video was taken in March, and is 10 months old. While Joel still does smile, does even sometimes laugh and occasionally makes his "babble" comments, he has not been this interactive or animated since the summer. This is my favorite video, the most beautiful picture of who Joel is, but it is also very painful to me to watch, as it is a reminder of the sad changes that have slowly crept up on us. I hope when you see it, it helps you see and understand, and love my little boy.
Staycation
I can't believe it. It's come and gone. First Christmas, and now "Staycation." It was much too short. We all could have easily stayed for another night or two, but hotel rooms with hot tubs are pretty pricey and I don't think the budget would hold. Besides, everyone else was clearing out. But it sure was fun.
Caeden absolutely loved it. He swam in the pool for 2&1/2 to three hours yesterday. He played on the play structure. And when I say play structure, I mean a massive three story pirate playhouse with air cannons and nerf balls (need I say how much my boy loved this?) and tunnels and slides and all big enough to accommodate even an adult standing up. It seriously is incredible. His best friend was there too, and so many other children to play with. There even is a craft room where he made something. Yes, something. Not exactly sure what, though it had humanoid characteristics. The hotel is totally geared for families and it was lovely. Not to mention the excitement of sleeping on a pull out couch nearly did us all in. Caeden fell asleep after 10 both nights.
And Joel? Well, he is a lot harder to judge, because he wasn't in the most smiley or giggly mood to begin with. He did great, though. He seemed very comfortable for the most part and the hotel life made it easy. He slept as good as always. He tolerated the trip (about 45 mins) both ways pretty well. And yesterday evening he even had a fit of good humour with friends, Lauralee and Peter. He loves, loves, loves people. So he got cuddled and talked to and had his head stroked and he smiled and laughed and even babbled a bit. He really enjoyed it. It was great to take him to the restaurant and know that if he just got too uncomfortable, we could box the food and just head up to our room. It was also great to let him sleep in the morning and just order room service breakfast.
And it is absolutely for sure. If we make it to our "Make a Wish," we are absolutely getting a hot tub. He really enjoyed it. Unlike most children, he LOVED being in a tub of water at 100 degrees. He really seemed to like the jets and he just relaxed. I'm not sure how long a cycle of the jets lasts, but I think it must be 20 or 30 minutes and no tears or sign I needed to take him out, unlike a bath, where I get to the part where I rinse his hair and he is already unhappy. It was so nice to hold him in the water and let him enjoy doing something "physical" and stimulating, as well as being held and having some "mom" time too. We only got to go in twice, because he spends almost 8 hours a day hooked up to his tummy pump (which is not hot tub compatible). But it was still worth it to me. If we had a hot tub, we'd be in there every single day, I promise you. Money well spent, to give Joel his own special treat on "Staycation."
And Mommy and Daddy enjoyed it too, after the kiddies went to bed. It was nice to be with lots of friends, and have them drop in for a visit and to play some cards in the afternoon. It was nice to do something "normal" as a family. It was bittersweet and emotional. It was full of "what ifs" and of the feeling you have when you know you are doing something for what is likely the first and last time. It was very special. Our first vacation as a family of four. And if I can get the camera downloaded, I'll try and share a few pictures.
Caeden absolutely loved it. He swam in the pool for 2&1/2 to three hours yesterday. He played on the play structure. And when I say play structure, I mean a massive three story pirate playhouse with air cannons and nerf balls (need I say how much my boy loved this?) and tunnels and slides and all big enough to accommodate even an adult standing up. It seriously is incredible. His best friend was there too, and so many other children to play with. There even is a craft room where he made something. Yes, something. Not exactly sure what, though it had humanoid characteristics. The hotel is totally geared for families and it was lovely. Not to mention the excitement of sleeping on a pull out couch nearly did us all in. Caeden fell asleep after 10 both nights.
And Joel? Well, he is a lot harder to judge, because he wasn't in the most smiley or giggly mood to begin with. He did great, though. He seemed very comfortable for the most part and the hotel life made it easy. He slept as good as always. He tolerated the trip (about 45 mins) both ways pretty well. And yesterday evening he even had a fit of good humour with friends, Lauralee and Peter. He loves, loves, loves people. So he got cuddled and talked to and had his head stroked and he smiled and laughed and even babbled a bit. He really enjoyed it. It was great to take him to the restaurant and know that if he just got too uncomfortable, we could box the food and just head up to our room. It was also great to let him sleep in the morning and just order room service breakfast.
And it is absolutely for sure. If we make it to our "Make a Wish," we are absolutely getting a hot tub. He really enjoyed it. Unlike most children, he LOVED being in a tub of water at 100 degrees. He really seemed to like the jets and he just relaxed. I'm not sure how long a cycle of the jets lasts, but I think it must be 20 or 30 minutes and no tears or sign I needed to take him out, unlike a bath, where I get to the part where I rinse his hair and he is already unhappy. It was so nice to hold him in the water and let him enjoy doing something "physical" and stimulating, as well as being held and having some "mom" time too. We only got to go in twice, because he spends almost 8 hours a day hooked up to his tummy pump (which is not hot tub compatible). But it was still worth it to me. If we had a hot tub, we'd be in there every single day, I promise you. Money well spent, to give Joel his own special treat on "Staycation."
And Mommy and Daddy enjoyed it too, after the kiddies went to bed. It was nice to be with lots of friends, and have them drop in for a visit and to play some cards in the afternoon. It was nice to do something "normal" as a family. It was bittersweet and emotional. It was full of "what ifs" and of the feeling you have when you know you are doing something for what is likely the first and last time. It was very special. Our first vacation as a family of four. And if I can get the camera downloaded, I'll try and share a few pictures.
Sunday, December 26, 2010
Timing
Awhile back, I had a short conversation with someone where the words "early grief" came up. I mulled these words over quite a bit. It was much more than just that particular conversation that I was mulling. All through this whole "journey" with Joel, there have been comments and conversations that all combine to shape my thoughts here.
I have been told, well, let's just say quite a few times, to JUST enjoy Joel. I emphasised the "just" part, because if you leave it out or put it in, makes a big difference to the meaning of the phrase. Telling me to "enjoy Joel," means that Joel's presence in my life can bring me many good experiences if I actively participate. I think I can safely say that most of the time this encouragement is unnecessary. It's hard not to feel a bit... like I'm being condescended to? when I'm given this encouragement, as it seems like the sort of rudimentary advice that even the simplest of us could figure out, but I try and accept it when I hear it, in case I need the reminder. Though I think anyone who was around to watch how every single smile or giggle from Joel lights us up like a Christmas tree would stop worrying about if we enjoy him or not.
On the other hand, telling me to "JUST" enjoy Joel changes it up a bit. The implication here is that the only experiences I should participate in are the good and enjoyable ones. That somehow I should exclude any negative emotions or experience, or perhaps to be more accurate, that I should refuse to participate in them on an emotional level.
There might be people in the world who can achieve this "zen" attitude, but then again, I don't hold the same religious beliefs and I don't want to either. I'd prefer to experience the emotional level of all the experiences of life with Joel. Because with great love comes great sorrow. I could never have been a "Jedi," I think that God created emotions and I think He calls us to be emotionally involved with the people around us. If experiencing the incredible joy of seeing Joel mouth "MMMMM" means feeling the incredible heartbreak of when he can no longer do this, then it's a price I will pay. But I really can't see how I could do one, and exclude the other.
Of course, when people say "just enjoy Joel," I don't think they really mean that I should never experience sadness or pain or grief. I think the usually unexpressed part would end the sentence "for now." Meaning I should put off the negative emotional experience for as long as possible. Or maybe I should say that they mean "Don't grieve until Joel is gone," though of course "just enjoy Joel" sounds a lot more positive. I did once hear the phrase "early grief is selfish."
And perhaps that highlights the problem. It's a question of timing, isn't it? At least, that is what I hope that the people around me realize. This is really about timing, and about different opinions about when I should start the "grieving process." I said "different opinions" because that is what they are. Opinions. For each child and each family that is dealing with a terminal diagnosis has a different and separate sort of journey. And the "when" and the "what" of their grieving will be very individual.
This is one reason I've written an encouragement into my welcome to this blog, for readers to start at the earliest posts and read forward. I put that part in there, right from the beginning, because I knew even then that what I was recording in this blog would be a sort of "progression" or as I prefer, a journey. If you start reading in the middle you'll never understand where I'm coming from. And that part is important. You'd really be missing a big part of the story if you only read the last ten posts.
Grief is different depending what part of the journey you are on. The ironic thing about the comment on early grief is that, in my experience the "early grief" is the LEAST selfish. Oh sure, grief is self-absorbing. Lots of it is about one's own loss and pain. But the least selfish time of this process, at least for me, is the "early" grief. Because this grief is not solely focused on my loss. This part is where I also am grieving for all that Joel has lost. It's later on, once Joel is gone, that my grief is more absorbed in all I have lost.
In the beginning, we had our diagnosis. I grieved the loss of Joel's sight. I grieved that he'd be developmentally delayed. I grieved for how our futures would all be changed, how our dreams for our family would be different. All these things were real griefs. And this was the appropriate time to sorrow them. I mean, the healthy thing is to grieve what we lose when we lose it, no? Suppressing emotions doesn't really work out to well either, does it? Our grief was mostly limited to these things, the ones we were losing in the time we were losing them.
But at this time, also, things were going well for Joel. He was progressing and developing. I did feel sad about the lost future. Knowing his life would be shortened did make me sorrow. But it was very different from how I grieve and sorrow now. There was optimism about what Joel would do, what gains he might make. The memories that might be possible for us. Yes, this time was hard and sad, but I remember feeling optimistic too.
Then, as time went on, there were losses. We crested a hill, and now there wasn't much up, only more down. Joel lost his ability to eat orally. To hold his head up. To reach for a toy. I'm not going to list them all. Each of these things were a grief. Each of these were mourned. Some of this was about me. But a lot of it was about Joel. And how it hurt that he had lost something.
If you start from the beginning of my blog and read forward in time, I think you will see a slow change. As time goes on, and Joel's condition worsens, Joel's death slowly grows closer. And as this happens, the "colour" of my grief changes. This change is as inevitable to me as the seasons. I see the leaves changing colour. The air is getting colder out here. I could keep wearing my shorts and t-shirt, keep running through the sprinkler, but this will not stop the change in seasons. Eventually if I refuse to put on a warm coat, I will get frost bite.
And that is what part of this blog is. It is my warm coat. A safe place to explore and share thoughts and feelings. A warm coat will not stop winter, either. But it will make the cold more bearable. Survivable. Sometimes what I write here are my preparations, mental and emotional, for a long winter. It is true on one hand that nothing can prepare me. Yet it is also true that somehow this helps me come to terms with the things that are happening.
Through it all, though, I hope that I have also captured the beautiful and happy moments we have. I have tried to be honest about it all. And when I write about the pain and grief, I am trusting my readers to also keep in mind all the happy thoughts and feelings, so that no one will think I've become crippled with sorrow. And when I am brutally honest about the hard parts, you will realize that I am being transparent, and you will trust me that the joy and happiness I talk about are not faked, but as real as the difficulties I tell you of. I'm hoping my honesty will not scare you, but rather that you will learn to trust it. You'll realize that I am hiding as little as possible from you, and that I make it a rule to never lie.
It might be more helpful to talk about healthy grief, instead trying to put a time frame on it. Of course, even then, it is difficult to know what "healthy grief" looks like fore each person. Of course, healthy grief means that it is part of becoming healed, but when that is or what it looks like is also hard to figure out. Most of us would agree that grief that involves alcohol or drugs in order to cope with it, is likely not the most healthy way to deal. For me, if my grief kept me in bed all day and there was no one to look after my children, well, that would not be healthy. On the other hand, for people with no children to care for, I can't say that a few days in bed is "wrong." Obviously if grief keeps you from ever working again, there is a problem. On the other hand, it also makes sense that grieving people might need a few "sick days." It's not always clear, is it?
I'm trying to keep my grief as healthy as possible. It is a balancing act, to be sure, and it will only get more tricky as we go. So far, my family seems fairly happy and content. My marriage is actually in a good place, and I think Steve and I are as close as ever. Though at times my grief takes over the laundry and the dusting, it rarely takes over meal preparation and it NEVER keeps me from loving any of my three boys. I get out of bed every morning and keep the home together. Sometimes I can even spare a shoulder for someone else. That's the best I can do right now. I hope the rest of the world understands. To everything there is a season.
I have been told, well, let's just say quite a few times, to JUST enjoy Joel. I emphasised the "just" part, because if you leave it out or put it in, makes a big difference to the meaning of the phrase. Telling me to "enjoy Joel," means that Joel's presence in my life can bring me many good experiences if I actively participate. I think I can safely say that most of the time this encouragement is unnecessary. It's hard not to feel a bit... like I'm being condescended to? when I'm given this encouragement, as it seems like the sort of rudimentary advice that even the simplest of us could figure out, but I try and accept it when I hear it, in case I need the reminder. Though I think anyone who was around to watch how every single smile or giggle from Joel lights us up like a Christmas tree would stop worrying about if we enjoy him or not.
On the other hand, telling me to "JUST" enjoy Joel changes it up a bit. The implication here is that the only experiences I should participate in are the good and enjoyable ones. That somehow I should exclude any negative emotions or experience, or perhaps to be more accurate, that I should refuse to participate in them on an emotional level.
There might be people in the world who can achieve this "zen" attitude, but then again, I don't hold the same religious beliefs and I don't want to either. I'd prefer to experience the emotional level of all the experiences of life with Joel. Because with great love comes great sorrow. I could never have been a "Jedi," I think that God created emotions and I think He calls us to be emotionally involved with the people around us. If experiencing the incredible joy of seeing Joel mouth "MMMMM" means feeling the incredible heartbreak of when he can no longer do this, then it's a price I will pay. But I really can't see how I could do one, and exclude the other.
Of course, when people say "just enjoy Joel," I don't think they really mean that I should never experience sadness or pain or grief. I think the usually unexpressed part would end the sentence "for now." Meaning I should put off the negative emotional experience for as long as possible. Or maybe I should say that they mean "Don't grieve until Joel is gone," though of course "just enjoy Joel" sounds a lot more positive. I did once hear the phrase "early grief is selfish."
And perhaps that highlights the problem. It's a question of timing, isn't it? At least, that is what I hope that the people around me realize. This is really about timing, and about different opinions about when I should start the "grieving process." I said "different opinions" because that is what they are. Opinions. For each child and each family that is dealing with a terminal diagnosis has a different and separate sort of journey. And the "when" and the "what" of their grieving will be very individual.
This is one reason I've written an encouragement into my welcome to this blog, for readers to start at the earliest posts and read forward. I put that part in there, right from the beginning, because I knew even then that what I was recording in this blog would be a sort of "progression" or as I prefer, a journey. If you start reading in the middle you'll never understand where I'm coming from. And that part is important. You'd really be missing a big part of the story if you only read the last ten posts.
Grief is different depending what part of the journey you are on. The ironic thing about the comment on early grief is that, in my experience the "early grief" is the LEAST selfish. Oh sure, grief is self-absorbing. Lots of it is about one's own loss and pain. But the least selfish time of this process, at least for me, is the "early" grief. Because this grief is not solely focused on my loss. This part is where I also am grieving for all that Joel has lost. It's later on, once Joel is gone, that my grief is more absorbed in all I have lost.
In the beginning, we had our diagnosis. I grieved the loss of Joel's sight. I grieved that he'd be developmentally delayed. I grieved for how our futures would all be changed, how our dreams for our family would be different. All these things were real griefs. And this was the appropriate time to sorrow them. I mean, the healthy thing is to grieve what we lose when we lose it, no? Suppressing emotions doesn't really work out to well either, does it? Our grief was mostly limited to these things, the ones we were losing in the time we were losing them.
But at this time, also, things were going well for Joel. He was progressing and developing. I did feel sad about the lost future. Knowing his life would be shortened did make me sorrow. But it was very different from how I grieve and sorrow now. There was optimism about what Joel would do, what gains he might make. The memories that might be possible for us. Yes, this time was hard and sad, but I remember feeling optimistic too.
Then, as time went on, there were losses. We crested a hill, and now there wasn't much up, only more down. Joel lost his ability to eat orally. To hold his head up. To reach for a toy. I'm not going to list them all. Each of these things were a grief. Each of these were mourned. Some of this was about me. But a lot of it was about Joel. And how it hurt that he had lost something.
If you start from the beginning of my blog and read forward in time, I think you will see a slow change. As time goes on, and Joel's condition worsens, Joel's death slowly grows closer. And as this happens, the "colour" of my grief changes. This change is as inevitable to me as the seasons. I see the leaves changing colour. The air is getting colder out here. I could keep wearing my shorts and t-shirt, keep running through the sprinkler, but this will not stop the change in seasons. Eventually if I refuse to put on a warm coat, I will get frost bite.
And that is what part of this blog is. It is my warm coat. A safe place to explore and share thoughts and feelings. A warm coat will not stop winter, either. But it will make the cold more bearable. Survivable. Sometimes what I write here are my preparations, mental and emotional, for a long winter. It is true on one hand that nothing can prepare me. Yet it is also true that somehow this helps me come to terms with the things that are happening.
Through it all, though, I hope that I have also captured the beautiful and happy moments we have. I have tried to be honest about it all. And when I write about the pain and grief, I am trusting my readers to also keep in mind all the happy thoughts and feelings, so that no one will think I've become crippled with sorrow. And when I am brutally honest about the hard parts, you will realize that I am being transparent, and you will trust me that the joy and happiness I talk about are not faked, but as real as the difficulties I tell you of. I'm hoping my honesty will not scare you, but rather that you will learn to trust it. You'll realize that I am hiding as little as possible from you, and that I make it a rule to never lie.
It might be more helpful to talk about healthy grief, instead trying to put a time frame on it. Of course, even then, it is difficult to know what "healthy grief" looks like fore each person. Of course, healthy grief means that it is part of becoming healed, but when that is or what it looks like is also hard to figure out. Most of us would agree that grief that involves alcohol or drugs in order to cope with it, is likely not the most healthy way to deal. For me, if my grief kept me in bed all day and there was no one to look after my children, well, that would not be healthy. On the other hand, for people with no children to care for, I can't say that a few days in bed is "wrong." Obviously if grief keeps you from ever working again, there is a problem. On the other hand, it also makes sense that grieving people might need a few "sick days." It's not always clear, is it?
I'm trying to keep my grief as healthy as possible. It is a balancing act, to be sure, and it will only get more tricky as we go. So far, my family seems fairly happy and content. My marriage is actually in a good place, and I think Steve and I are as close as ever. Though at times my grief takes over the laundry and the dusting, it rarely takes over meal preparation and it NEVER keeps me from loving any of my three boys. I get out of bed every morning and keep the home together. Sometimes I can even spare a shoulder for someone else. That's the best I can do right now. I hope the rest of the world understands. To everything there is a season.
Christmas
It was a wonderful Christmas here at the Smith home. We were all together and all (relatively) healthy. We read the Christmas story, we sang carols, we opened gifts and we ate. A lot. More than we should have.
The aftermath is evidence of a celebration, shredded wrapping paper, empty boxes, cups hidden in odd corners of the house, fridge full of leftovers, a few remaining dirty dishes still soaking in the sink, sticky candy cane stuck to the end table, a few Christmas decorations the only things left lying under the tree, and a full recycling box.
These physical mementos of a celebration will soon be cleared away. (well, EVENTUALLY, anyway). I hope that there are less ephemeral "mementos" still hidden carefully in my heart. Some of them are memories too be sure, and they are precious. Still, I find that the day itself went so quickly and was so filled up, I didn't spend the time I wished too, talking with my family. I think I see a New Year's resolution shaping up in these words: spend more time with my family.
Joel wasn't feeling the best. He spent most of the day snoozing in his playpen, in the "middle" of the excitement, but not directly part of it. There was nothing particularly "wrong" with him, he had just had a series of seizures in the morning. When this happens, he usually sleeps a lot for the rest of the day, and since that is good for him, I don't disturb him. It does make me a bit sad, when he is not participating in much. But mostly I was just profoundly happy to have him there, with us, sleeping in his crib.
What I really love best about Christmas isn't the boxes, packages or bows, to quote the Grinch. It is the promise. Christmas is a celebration of something that happened long, long ago. It is, for me, a celebration of something in the present, the celebration of the Man whose coming made it possible to become God's adopted daughter. A celebration of family, yes. A celebration of the event that placed me irrevocably in God's family too.
But it is also a celebration of the future. It is a reminder that the events that started at the beginning of time are not done yet. A sequel is coming. One day I'll be at Jesus' birthday party, and he will actually be there in person. Christmas reminds me of God's promises for the future, and when there is a terrible, horrible day looming up in ours, it brings me such peace and hope to remember that after that terrible, horrible day, there are still many promises left in the future, and all of them are wonderful.
And so I hope to carry a bit of this Christmas "memento" around in my heart. A ward against the evil of the days that are coming when Joel gets sick, and when Joel leaves us. I wish to hold fast to these promises, they are a light in dark places. May the meaning of Christmas be kept in my heart every day of the year.
The aftermath is evidence of a celebration, shredded wrapping paper, empty boxes, cups hidden in odd corners of the house, fridge full of leftovers, a few remaining dirty dishes still soaking in the sink, sticky candy cane stuck to the end table, a few Christmas decorations the only things left lying under the tree, and a full recycling box.
These physical mementos of a celebration will soon be cleared away. (well, EVENTUALLY, anyway). I hope that there are less ephemeral "mementos" still hidden carefully in my heart. Some of them are memories too be sure, and they are precious. Still, I find that the day itself went so quickly and was so filled up, I didn't spend the time I wished too, talking with my family. I think I see a New Year's resolution shaping up in these words: spend more time with my family.
Joel wasn't feeling the best. He spent most of the day snoozing in his playpen, in the "middle" of the excitement, but not directly part of it. There was nothing particularly "wrong" with him, he had just had a series of seizures in the morning. When this happens, he usually sleeps a lot for the rest of the day, and since that is good for him, I don't disturb him. It does make me a bit sad, when he is not participating in much. But mostly I was just profoundly happy to have him there, with us, sleeping in his crib.
What I really love best about Christmas isn't the boxes, packages or bows, to quote the Grinch. It is the promise. Christmas is a celebration of something that happened long, long ago. It is, for me, a celebration of something in the present, the celebration of the Man whose coming made it possible to become God's adopted daughter. A celebration of family, yes. A celebration of the event that placed me irrevocably in God's family too.
But it is also a celebration of the future. It is a reminder that the events that started at the beginning of time are not done yet. A sequel is coming. One day I'll be at Jesus' birthday party, and he will actually be there in person. Christmas reminds me of God's promises for the future, and when there is a terrible, horrible day looming up in ours, it brings me such peace and hope to remember that after that terrible, horrible day, there are still many promises left in the future, and all of them are wonderful.
And so I hope to carry a bit of this Christmas "memento" around in my heart. A ward against the evil of the days that are coming when Joel gets sick, and when Joel leaves us. I wish to hold fast to these promises, they are a light in dark places. May the meaning of Christmas be kept in my heart every day of the year.
Wednesday, December 22, 2010
January is "Drop-in Month."
I'm declaring the month of January "Drop-In Month." Because I really want you to drop in for a visit. Even if I have nothing to offer you to eat, the dishes are piled in the sink, and I'm still in my jammies when you arrive. Maybe especially if that is the case. If you arrive to see this state at 4pm, perhaps I really, really need a visitor.
But though I might need a visitor, I'm not mostly the person I want you to visit. I want you to visit Joel. Please. It has suddenly become really important to me. I just want you to come over and see him. And hold him, too. I want to you sit and snuggle him, to talk in his ear, and even give him a kiss (if you have a note from your doctor declaring you are healthy). ;)
It's hard to explain this "sudden" urge. I guess I finally understand what my husband was all about last year when he wanted me to bring Joel to work so he could show his co-workers "his boy." I thought then that he was being a little wierd. (don't tell him I said that.) Now I suddenly feel it too.
It's like I want people to acknowledge Joel. Oh, I know that if you are a good friend, you know about Joel and all that. So what am I talking about? I want you to get to know him a little more. I want you to get to love him a little more. I want you to feel his soft cheek against yours. I'm hoping he'll burble for you. I'm hoping while you hold him, you feel him stiffen when he is about to "say" something to you. I want you to let him hold your finger in his clenched fist. I want you to interact with him, see his eyes move when you speak to him.
In a way, I suppose it is a bit cruel to ask you to do this. It's a bit of an emotional investment for you, and I know it's going to be painful for you when he dies. This is only going to make you feel sadder about it all.
But it means a lot to me. It's hard to put it into words or define it. I guess the best way I can say it is that when the day of Joel's funeral comes, I want the service to be full of his friends. Not MY friends. I mean, hey, I want you to be my friends too, and come to support me. But I want to look out and see people there who loved Joel. Literally. I want to look out and see you crying and think "She sat and rocked my boy." I want to see you standing in the crowd and think "He sang to Joel."
Don't get me wrong. I know lots of you have already done this, maybe even more than once. And I know you love Joel. But right now I just feel this need to have people come and pour down love on my boy. I wish them to affirm his value and the preciousness of his existence by coming over to hold him and cuddle him while you can.
Maybe I should offer people to hold him more often. I guess I never know if that's something people want to do, and then they might be thinking that I don't want to let them hold him. Nothing farther from the truth. I take him when he cries, because I want him the most comfortable as possible. But if he's not crying, then I love it when people ask to hold him. I love it when my friends come to visit and walk in and ask "Where's Joel?" straight off. And go over to see him for a minute.
I love it, and now I'm asking you to out do yourselves. Please come over and ask to hold my boy and snuggle him and love him. I promise if you call first, I'll even brush my teeth and put on relatively clean clothes. (am I being too honest again?) You will be giving me a wonderful gift, and I also really think that Joel likes it too. I see a difference in him, often, just when he hears another voice besides mine. He loves people, he really does, and sometimes I see him just "light up." So please come over and light my little boys face. And show me how precious he is to you.
But though I might need a visitor, I'm not mostly the person I want you to visit. I want you to visit Joel. Please. It has suddenly become really important to me. I just want you to come over and see him. And hold him, too. I want to you sit and snuggle him, to talk in his ear, and even give him a kiss (if you have a note from your doctor declaring you are healthy). ;)
It's hard to explain this "sudden" urge. I guess I finally understand what my husband was all about last year when he wanted me to bring Joel to work so he could show his co-workers "his boy." I thought then that he was being a little wierd. (don't tell him I said that.) Now I suddenly feel it too.
It's like I want people to acknowledge Joel. Oh, I know that if you are a good friend, you know about Joel and all that. So what am I talking about? I want you to get to know him a little more. I want you to get to love him a little more. I want you to feel his soft cheek against yours. I'm hoping he'll burble for you. I'm hoping while you hold him, you feel him stiffen when he is about to "say" something to you. I want you to let him hold your finger in his clenched fist. I want you to interact with him, see his eyes move when you speak to him.
In a way, I suppose it is a bit cruel to ask you to do this. It's a bit of an emotional investment for you, and I know it's going to be painful for you when he dies. This is only going to make you feel sadder about it all.
But it means a lot to me. It's hard to put it into words or define it. I guess the best way I can say it is that when the day of Joel's funeral comes, I want the service to be full of his friends. Not MY friends. I mean, hey, I want you to be my friends too, and come to support me. But I want to look out and see people there who loved Joel. Literally. I want to look out and see you crying and think "She sat and rocked my boy." I want to see you standing in the crowd and think "He sang to Joel."
Don't get me wrong. I know lots of you have already done this, maybe even more than once. And I know you love Joel. But right now I just feel this need to have people come and pour down love on my boy. I wish them to affirm his value and the preciousness of his existence by coming over to hold him and cuddle him while you can.
Maybe I should offer people to hold him more often. I guess I never know if that's something people want to do, and then they might be thinking that I don't want to let them hold him. Nothing farther from the truth. I take him when he cries, because I want him the most comfortable as possible. But if he's not crying, then I love it when people ask to hold him. I love it when my friends come to visit and walk in and ask "Where's Joel?" straight off. And go over to see him for a minute.
I love it, and now I'm asking you to out do yourselves. Please come over and ask to hold my boy and snuggle him and love him. I promise if you call first, I'll even brush my teeth and put on relatively clean clothes. (am I being too honest again?) You will be giving me a wonderful gift, and I also really think that Joel likes it too. I see a difference in him, often, just when he hears another voice besides mine. He loves people, he really does, and sometimes I see him just "light up." So please come over and light my little boys face. And show me how precious he is to you.
Gift
Today was a special day. I was able, through the love of my church, to give Joel a gift. A gift that he actually enjoyed.
And I really didn't have to do much. I baked some cookies. I made an invitation. I vacuumed, which needed to be done anyway, and I cleaned the bathroom, which REALLY needed to be done anyway. I gave Joel a nice bath and dressed him in his new, soft, flannel Winni-the-Pooh jammies and his little Gagou Tagou sheep slippers so he'd be at his best. I turned on all the Christmas lights and lit all the candles and dimmed all the lights. I set out tea, coffee, and hot chocolate.
And then at few minutes before 8pm, the arrivals started. People. More people. Even MORE people. More people that I had expected. I think it was just about the whole church. There were around 30 "children" depending on where you'd put teenagers. And there must have been around 30 adults. Our little bungalow was bursting.
And then the singing began and it was beautiful. I held Joel as we all gave him the most beautiful concert, complete with harmony and the amazing acoustics of people close together in a small house. We sang to him until 9pm.
And I for the first time in awhile, Steve and I were able to give Joel something he really enjoyed. His eyes were half closed, but this was because he was intently listening. His whole body was tense, which indicates his attention and concentration. It was amazing how his body tensed as soon as the singing started and how he stayed "on alert" until the concert was done. He never even smiled, but I could read his attention and interest and enjoyment in his face and his body.
It was a special night, with special people, with a special gift for a special boy. Merry, merry Christmas Joel!
And I really didn't have to do much. I baked some cookies. I made an invitation. I vacuumed, which needed to be done anyway, and I cleaned the bathroom, which REALLY needed to be done anyway. I gave Joel a nice bath and dressed him in his new, soft, flannel Winni-the-Pooh jammies and his little Gagou Tagou sheep slippers so he'd be at his best. I turned on all the Christmas lights and lit all the candles and dimmed all the lights. I set out tea, coffee, and hot chocolate.
And then at few minutes before 8pm, the arrivals started. People. More people. Even MORE people. More people that I had expected. I think it was just about the whole church. There were around 30 "children" depending on where you'd put teenagers. And there must have been around 30 adults. Our little bungalow was bursting.
And then the singing began and it was beautiful. I held Joel as we all gave him the most beautiful concert, complete with harmony and the amazing acoustics of people close together in a small house. We sang to him until 9pm.
And I for the first time in awhile, Steve and I were able to give Joel something he really enjoyed. His eyes were half closed, but this was because he was intently listening. His whole body was tense, which indicates his attention and concentration. It was amazing how his body tensed as soon as the singing started and how he stayed "on alert" until the concert was done. He never even smiled, but I could read his attention and interest and enjoyment in his face and his body.
It was a special night, with special people, with a special gift for a special boy. Merry, merry Christmas Joel!
Monday, December 20, 2010
Bits, Bobbles, and Updates.
Last week was a tough week for me, and I'm not even sure why. It just was. I felt like I was trying to swim in molasses. I felt emotionally exhausted. It seemed I could accomplish nothing but getting out of bed, keeping my family fed and Joel taken care of, and going back to bed. I tried to do other things. It was just like one of those dreams where you are running and running and not getting any where, only I was awake.
We are now almost to Christmas. I think that we might make it to that day without a hospitalization. I think we might even make it a couple more days until our "Staycation" at the hotel. I'm not superstitious, but I have to fight myself to put that down. Afraid that by thinking it might happen, I'll make it not happen. But I refuse to let such superstitious nonsense rule me. I think I am "rushing" the days until Christmas because if I can somehow make it come "faster" then there will be more chance Joel stays well. Crazy, huh? It's like, "Hurry up Christmas, before Joel gets sick!"
We are now almost to Christmas. I think that we might make it to that day without a hospitalization. I think we might even make it a couple more days until our "Staycation" at the hotel. I'm not superstitious, but I have to fight myself to put that down. Afraid that by thinking it might happen, I'll make it not happen. But I refuse to let such superstitious nonsense rule me. I think I am "rushing" the days until Christmas because if I can somehow make it come "faster" then there will be more chance Joel stays well. Crazy, huh? It's like, "Hurry up Christmas, before Joel gets sick!"
People ask how Joel is, and I continue to be unsure of what to say. While we have stayed amazingly healthy, Joel has not been as happy or active as he was last Dec. to July. He still has had his good moments. In fact, just Saturday he had a great day and was smiley and playful. Generally, though, I think he's just been sleeping more and also had more irritable times during the fall. In the big picture, it is to be expected that at this stage, the changes go downhill.
And then I think back a year, and last fall was very similar to this one. Yet in November he started to snap out of it, and really made a come back. So it's really hard to say exactly how he is. We never know if these changes are permanent. And whenever there is a change for good, I feel great. And whenever there is a change for the worse, I feel lousy. Hard to escape that.
I've also had a much harder time using the CPAP. I'm not sure exactly why, but there have been many nights in the last month where I just couldn't use it. Some of those nights I hooked him up and his O2 was just fine, but 2 or 3 minutes in he became restless, then started screaming. As soon as I took the CPAP off, he was fine. I wonder if it might be related to the water that the audiologist found in his ears about a month ago. The CPAP can cause ear aches, due to the pressure it creates, and I wonder if this is creating more immediate pain at times.
Only time will tell, but an increase in O2 use did not make me feel too happy. I'm hoping our visit to the ENT can help us solve some problems. We'll check out his adnoids again, as well as the water in the ears. Maybe there is something there we can fix.
I've made some new friends in the PBD "world" and that is nice, but it is sad too. Who doesn't like to make a new friend, and yet it is hard to see others face the same struggles you have gone through. I'd like so much to make it easier somehow and all I have to offer is electronic correspondence. I try to remember my own advice to you all, and just pray and be a friend.
Caeden is growing and changing. It's amazing to watch, but I feel a bit sad too. So much of his childhood seems obscured by the medical problems of his brother. I know every mother feels that their child's wee years slip by so fast they miss them, I think it just feels a bit more "slippery" for me. I'm trying to enjoy Caeden more in the good times, too, not just Joel.
Steve is doing ok. His term contract goes until the first week in February. We are hoping by then he can get another year term somewhere. His principal really seems to like him. Steve was in charge of the drama part of the Christmas program this year, with the music teacher in charge of the music, of course (Steve's not very musical, let's just say.) It turned out well, and I think Steve really enjoyed it. He's going to really miss the job, he has really enjoyed this position. It's too bad he can't get another term there, but I don't think there are any more expecting ladies, so now we hope his principal will put in a good word for him somewhere else.
That's about all I have to say for now. Thanks all for your prayers and Christmas wishes, love and support. Remember the sick this Christmas season. It's hard to spend Christmas sick or in the hospital, so remember to visit friends and neighbours who are ill. As long as it's not catching. ;)
Tuesday, December 14, 2010
Insecurity
You'd think I'd have my hands full thinking about Joel, without bouts of obsessive introspection and major infections of massive insecurity. You'd think.
But bouts of insecurity are a life-long struggle for me. And when they hit, they hit hard.
It's partly a weakness of my personality. I like people. I want them to like me. Every single one of them on the planet. Thing is, Jesus was perfect, and everybody didn't like him. So I'm pretty sure it is unreasonable and completely unattainable for everyone to like me, being much less than perfect and all.
That doesn't stop me from worrying over it like a bone, though. Gnawing on it over and over in my mind. Are there people who don't like me? Who are they? What did I do to cause them not to like me? And then there is all the introspection. Or sometimes the introspection precedes the "bone gnawing." By which I mean that I start thinking "I think I'm too outspoken... was I too outspoken yesterday at ________? Did I offend anyone? How about ______? This is the second time in a week where I was outspoken in front of them! Do they even like me? Are they just being polite....? Oh my, maybe when I left the room, people exchanged LOOKS! Maybe they have even been saying how I keep jabbering on to each other when I'm not around....??!!"
Do you see what I mean? And pretty soon I'm feeling absolutely lousy and wondering if all my friends are secretly annoyed and fed up with me for some personal flaw and they are just keeping pleasant with me because they feel sorry for me because of Joel. Is this just my own brand of crazy, or does anyone else struggle with this?
I mean, it is just crazy, isn't it? You are not secretly agreeing with my personal assessment, are you? I mean, you are not just being polite when you read this, but really you think I'm an annoying flake and you can't stand me....??? (weak ironic laugh)
Truth is, I'm just so human that sometimes I wonder how anyone really can like me. By which I mean that I prefer to be called determined, but sometimes I'm just stubborn. I prefer to be called lively and high-spirited, friendly and talkative, but sometimes I'm just attention seeking, loud, and obnoxious. I wish to be knowledgeable, but sometimes I'm just opinionated. I prefer to be seen as keenly interested in things, having a love for learning and the truth. But sometimes I'm that annoying kid in school who had to raise her hand for every single answer. I want to be known as a warm and caring person, but sometimes I end up putting an oar in where it doesn't belong. I hope I'm spontaneous, but often I'm just impulsive. I want to be honest and open, but sometimes I just talk too much about myself. (like right now!)
Are you getting my drift? Truth is, all the stuff I've mentioned is stuff that is a part of my personal make up. And every facet of it can be used for good or for ill... The tricky part is surrendering it all over to God so that He can take the "me" out of my personality and make it something beautiful. And too often I grab hold of it myself (impulsive!) and try and make things go in my own fashion.
Even more confusing, though, is sitting down and trying to sort it all out, where did I screw up, and all that. It's better to just let go of it all, (of course, still apologize if needed) and just stop worrying about myself and whether everyone likes me and just get on with the job of what ever God has put in front of me to do. Stop worrying about me and worry about someone else.
Because feeling bad about myself and how I might not be like able or how everyone doesn't think I'm the greatest, or maybe even a passable example of a human life form, all that sort of internal stuff is really just a form of narcissism. Oh, it's not the FUN version of it. Obsessive insecurity surely isn't enjoyable, at least to me. But it is narcissism all the same. (great, add to that big list narcissism!)
So, my friends, I'm going to try to keep speaking to my God about it all. I do hope that none of my personal failings and weaknesses have made you want to file me under "G." And for those of you who love me despite myself, thank you. And now I'm going to go get on with my day, speak to God, and remember that more important than the number of people we manage to get to love us, is the number of people that we are able to show love to.
But bouts of insecurity are a life-long struggle for me. And when they hit, they hit hard.
It's partly a weakness of my personality. I like people. I want them to like me. Every single one of them on the planet. Thing is, Jesus was perfect, and everybody didn't like him. So I'm pretty sure it is unreasonable and completely unattainable for everyone to like me, being much less than perfect and all.
That doesn't stop me from worrying over it like a bone, though. Gnawing on it over and over in my mind. Are there people who don't like me? Who are they? What did I do to cause them not to like me? And then there is all the introspection. Or sometimes the introspection precedes the "bone gnawing." By which I mean that I start thinking "I think I'm too outspoken... was I too outspoken yesterday at ________? Did I offend anyone? How about ______? This is the second time in a week where I was outspoken in front of them! Do they even like me? Are they just being polite....? Oh my, maybe when I left the room, people exchanged LOOKS! Maybe they have even been saying how I keep jabbering on to each other when I'm not around....??!!"
Do you see what I mean? And pretty soon I'm feeling absolutely lousy and wondering if all my friends are secretly annoyed and fed up with me for some personal flaw and they are just keeping pleasant with me because they feel sorry for me because of Joel. Is this just my own brand of crazy, or does anyone else struggle with this?
I mean, it is just crazy, isn't it? You are not secretly agreeing with my personal assessment, are you? I mean, you are not just being polite when you read this, but really you think I'm an annoying flake and you can't stand me....??? (weak ironic laugh)
Truth is, I'm just so human that sometimes I wonder how anyone really can like me. By which I mean that I prefer to be called determined, but sometimes I'm just stubborn. I prefer to be called lively and high-spirited, friendly and talkative, but sometimes I'm just attention seeking, loud, and obnoxious. I wish to be knowledgeable, but sometimes I'm just opinionated. I prefer to be seen as keenly interested in things, having a love for learning and the truth. But sometimes I'm that annoying kid in school who had to raise her hand for every single answer. I want to be known as a warm and caring person, but sometimes I end up putting an oar in where it doesn't belong. I hope I'm spontaneous, but often I'm just impulsive. I want to be honest and open, but sometimes I just talk too much about myself. (like right now!)
Are you getting my drift? Truth is, all the stuff I've mentioned is stuff that is a part of my personal make up. And every facet of it can be used for good or for ill... The tricky part is surrendering it all over to God so that He can take the "me" out of my personality and make it something beautiful. And too often I grab hold of it myself (impulsive!) and try and make things go in my own fashion.
Even more confusing, though, is sitting down and trying to sort it all out, where did I screw up, and all that. It's better to just let go of it all, (of course, still apologize if needed) and just stop worrying about myself and whether everyone likes me and just get on with the job of what ever God has put in front of me to do. Stop worrying about me and worry about someone else.
Because feeling bad about myself and how I might not be like able or how everyone doesn't think I'm the greatest, or maybe even a passable example of a human life form, all that sort of internal stuff is really just a form of narcissism. Oh, it's not the FUN version of it. Obsessive insecurity surely isn't enjoyable, at least to me. But it is narcissism all the same. (great, add to that big list narcissism!)
So, my friends, I'm going to try to keep speaking to my God about it all. I do hope that none of my personal failings and weaknesses have made you want to file me under "G." And for those of you who love me despite myself, thank you. And now I'm going to go get on with my day, speak to God, and remember that more important than the number of people we manage to get to love us, is the number of people that we are able to show love to.
Holiday
I'm afraid to write about this. I'm afraid that it's not going to happen. I'm afraid that Joel is going to get sick or something else and then it won't happen.
Because Steve, Caeden, Joel and I are "going away" for a holiday. It's the only one I can see us making, at this point. It's not much compared to some holidays, but I am very, very excited about it. I don't think Joel will make to or past the magical age of three when he'd qualify for a Make a Wish, and I don't know if he's still around if he'd be able to enjoy it anymore anyway.
We have booked two nights at a hotel here in the city. Quite a few of our friends with families from our church are going to stay there at the same time, so it's going to be quite a party. It's a family friendly hotel, with a huge, three story play area for kids, besides the pool. We have booked a suite with a two-person jacuzzi and I'm really hoping that Joel will enjoy that part of it.
It will likely be our one and only "trip" with Joel. I hate putting him in the car for any length of time other than 30 minutes. I just don't trust his breathing in that position for too long. I think it is too tiring for him. And taking a plane somewhere doesn't seem much better. It would be an ordeal for all of us.
Not to mention that the thought of a new hospital and strange doctors, in the case he became ill, just about throws me into fits. And all the rest of it, like the worry that his meds might get lost, or that his CPAP will break down, etc, etc, etc.
But this is a trip I can do. We'll throw the O2, the monitor, the CPAP, the meds, the pump and accessories, the formula, the playpen, the stroller, all of it in the car and we are only 30 minutes from home if we forget anything important. And only about 15 mins from emergency, where they know us very well.
And it's enough for us. Caeden will absolutely love it, playing with friends and sleeping in a hotel will be big, big excitement for him. It will be a change of scenery, and if Joel enjoys the jacuz, I intend to live there with him. We can eat in the restaurant, but if Joel is just not up to it, then we can order room service and let him sleep in his playpen. And room attendants will make my bed - :) Whooo hoooo.
I think I am looking forward to this as much as I am to Christmas. As long as Joel stays healthy. Which goes for both Christmas and the trip. It all depends on Joel keeping stable for the next three weeks. But I still can't help feeling excited. I hope I'm not going to be disappointed...
Because Steve, Caeden, Joel and I are "going away" for a holiday. It's the only one I can see us making, at this point. It's not much compared to some holidays, but I am very, very excited about it. I don't think Joel will make to or past the magical age of three when he'd qualify for a Make a Wish, and I don't know if he's still around if he'd be able to enjoy it anymore anyway.
We have booked two nights at a hotel here in the city. Quite a few of our friends with families from our church are going to stay there at the same time, so it's going to be quite a party. It's a family friendly hotel, with a huge, three story play area for kids, besides the pool. We have booked a suite with a two-person jacuzzi and I'm really hoping that Joel will enjoy that part of it.
It will likely be our one and only "trip" with Joel. I hate putting him in the car for any length of time other than 30 minutes. I just don't trust his breathing in that position for too long. I think it is too tiring for him. And taking a plane somewhere doesn't seem much better. It would be an ordeal for all of us.
Not to mention that the thought of a new hospital and strange doctors, in the case he became ill, just about throws me into fits. And all the rest of it, like the worry that his meds might get lost, or that his CPAP will break down, etc, etc, etc.
But this is a trip I can do. We'll throw the O2, the monitor, the CPAP, the meds, the pump and accessories, the formula, the playpen, the stroller, all of it in the car and we are only 30 minutes from home if we forget anything important. And only about 15 mins from emergency, where they know us very well.
And it's enough for us. Caeden will absolutely love it, playing with friends and sleeping in a hotel will be big, big excitement for him. It will be a change of scenery, and if Joel enjoys the jacuz, I intend to live there with him. We can eat in the restaurant, but if Joel is just not up to it, then we can order room service and let him sleep in his playpen. And room attendants will make my bed - :) Whooo hoooo.
I think I am looking forward to this as much as I am to Christmas. As long as Joel stays healthy. Which goes for both Christmas and the trip. It all depends on Joel keeping stable for the next three weeks. But I still can't help feeling excited. I hope I'm not going to be disappointed...
Saturday, December 11, 2010
More Mommy Guilt
Here I am, sharing yet another episode of "Mother Guilt" with you. Before I admit all about it to you, let me say that you might as well not waste your breath telling me I'm a great mother.
First of all, when it comes to the truth about the crazy stuff I'm going to share, I'm the first to be telling myself it's nuts to think this way. I just can't help the thoughts that try and take up residence in my mind, though I try not to let them make a comfy home there.
Second of all, I know very well that I'm also not mother of the year. I know the truth about that a little too well, for you to make me believe that I'm "great." I do ok. I love both my boys, and sometimes I'm even unselfish towards them. Sometimes. I don't think Caeden is going to have too many scars from my methods or behaviors, but I also can clearly see some places that need some work in my parenting methods. True enough.
But this episode of "Mommy Guilt" is not to do with Caeden. It's about Joel.
I don't even know where to start on this one. The fact that these thoughts strike me as pretty nutty does nothing to stop me from thinking they sound quite plausible at the same time. Only a person who has struggled with real sanity issues would likely understand this seeming contradiction.
And even worse, occasionally I wonder if there are any other people out there who think similar things about me. Do they think or believe the stuff I feel guilty about? This thought only lending credence to my own suppositions.
Because even though I can go over and over the decisions we have made about Joel and see clearly why we did what we did, at the same time...???
Now you are all baffled, wondering what the heck I'm blathering about, so time I told you the details.
You see, Steve and I decided way back last fall that we wouldn't do any more P/T and O/T that was aimed at skills acquisition. We still have our P/T come out and help us look at Joel's positioning and muscle tone and if there are any areas that are concerning that might need a brace or splint or stretches. But back a year ago we decided not to work with Joel to teach him to sit, or reach, etc, etc.
I can go over that decision and see what informed it. Joel often has bouts of irritability. Let's say, to keep it simple, that he really was no longer "interested" in this sort of P/T. There was a good time in his first year where the P/T and O/T would comment on what a hard worker he was... Those days were over for us. He wasn't enjoying it. But the real kicker was just that despite our efforts, Joel had only lost skills. It didn't make sense to make him do something that he no longer enjoyed and that wasn't "helping."
But last winter Joel still very much enjoyed getting an after bath massage and stretch and play time on the floor. And so I tried to do that. Now, though, after his bath he just usually wants to get dressed quickly and have a cuddle. He hasn't really played on the floor too much for awhile, though this summer he still lay on a blanket in the grass and enjoyed it as long as someone sat with him. Since September, though, we really have not done much play on a blanket.
Joel used to sit up on my lap a lot more and play. I'd also put him in his tumbleform chair from time to time or even sometimes in his high chair. I like to hold him sitting up quite a bit. Somewhere along the line of the summer, the sitting up position seems to have become uncomfortable for him. He will do it, on my lap, for short periods. If I keep him upright for longer than a few minutes, though, he starts pressing back on my hands, to tell me he wants to lie down. If I ignore this for too long, he cries. I don't ignore it anymore. I'm not sure how much the spinal compressions in his back might be uncomfortable or painful even when he is in this position for too long, and he really has to work harder to breathe that way too. So I let him decide.
I was also feeding him orally this summer. He seemed to like it. I would feed him up to a third of a cup at a time. It made me very happy. But I've just gotten more and more scared about doing it. This fall he seems to be more "chokey" with it, though he's never had an aspiration pneumonia. He also has not seemed to be as interested, when I've tried to offer him food. I haven't really tried very hard since our hospital stay.
And with each and every one of these things, it gnaws at me. If we would have tried harder and longer, would it have helped? I mean, I think, if we hadn't have stopped the P/T, would he have been happier still when he sits? If I would have kept up with the massage and playtime, would he be playing more now? In other words, even if these things couldn't stop the progression of his disease, were they maybe helping to delay it? By quitting, did we make it worse?
Crazy, because after that first regression and bout of irritability and all, we sort of decided that our aim was not to get Joel to sit or walk (which we knew was an impossible goal, anyway) but to make Joel's life as happy as we could for as long as we could. And not one of these decisions have taken any happiness from him. He has remained happy and contented through it all, other than bouts of illness, or that irritability which springs up with no pinpointed cause, though I suspect more and more that it is linked somehow to his bone trouble.
Still, despite our reasoning, despite knowing that we have kept Joel as happy as we can, still, the doubts can linger, like a bad aroma. Did I give up to quickly? Should I keep trying to do these things? Has Joel become "bored?" Did I stop these activities because it was hard for me? Was I too lazy to keep trying? Am I depressed, am I making these decisions due to being depressed? Do I really have what's best for Joel at heart, or am I taking the "easy way?" On and on they can come.
Even sometimes when he's sleeping a lot, then I wonder, "Is he sleeping so much because he is bored? Should I be trying harder to interact with him?" I think this, despite times like yesterday when I was singing to him. For the first 10 minutes or so he smiled and enjoyed it. Then he just listened. Finally, he cried. And I stopped. He quickly snuggled in and fell right to sleep. He was too tired to listen, he just wanted to rest. Despite evidence like this, I still wonder "Have I done enough to keep him stimulated?"
And these are the "biggies." I'm not even going into the guilt I can feel about if I wash his face enough, or if I swab him with toothies enough, or if I've left him in dirty clothes "too long" or not given him enough baths, or not changed his sheets often enough or gone too long before sterilizing his equipment, or didn't turn him enough....?? Never mind, he might be perfectly happy all day long. But these are the thoughts that crawl in through the cracks of my mind and scuttle about when I'm not vigilant about extermination.
I know I'm not totally the only one in this. I remember talking with a friend on this topic about a year ago. She was asking some of the same questions I'm mentioning here. I could clearly see that it was the terrible disease that was robbing her child of the interest in playing, or the ability to do certain things. She was still feeling badly about her role in stimulating him, etc, etc., as if anything she could do would change anything about it. As I know is the case with Joel right now, but it's so much harder to see when it is your own child.
Oh, I know that for kids who are not yet in this "downward spiral" they can learn to do things and be interested and need lots of stimulation. There are kids who are "in that place." As Joel was, waaaaaay back in his first year of life. But he's no longer there. For him, the disease will not let him develop much, instead it's slowly stripping him down. I am hugely thankful for the playful times he does have and the smiles and interest he does show.
Still, doubts will remain, the insidious and blighty buggers. I wish I had a can of mental "Raid." Well, I guess I do, in a sense. Taking some time to talk to God, and singing some worship music can clear em out pretty good. They just have a tendency to reinfestations. Like ants in your lawn. No matter how many nests you clear out, there is another one forming somewhere. Over time, perhaps a long time, they will eventually weaken until they are rarely noticeable. In the meantime, I keep swatting and spraying. Ah, "Mother Guilt."
First of all, when it comes to the truth about the crazy stuff I'm going to share, I'm the first to be telling myself it's nuts to think this way. I just can't help the thoughts that try and take up residence in my mind, though I try not to let them make a comfy home there.
Second of all, I know very well that I'm also not mother of the year. I know the truth about that a little too well, for you to make me believe that I'm "great." I do ok. I love both my boys, and sometimes I'm even unselfish towards them. Sometimes. I don't think Caeden is going to have too many scars from my methods or behaviors, but I also can clearly see some places that need some work in my parenting methods. True enough.
But this episode of "Mommy Guilt" is not to do with Caeden. It's about Joel.
I don't even know where to start on this one. The fact that these thoughts strike me as pretty nutty does nothing to stop me from thinking they sound quite plausible at the same time. Only a person who has struggled with real sanity issues would likely understand this seeming contradiction.
And even worse, occasionally I wonder if there are any other people out there who think similar things about me. Do they think or believe the stuff I feel guilty about? This thought only lending credence to my own suppositions.
Because even though I can go over and over the decisions we have made about Joel and see clearly why we did what we did, at the same time...???
Now you are all baffled, wondering what the heck I'm blathering about, so time I told you the details.
You see, Steve and I decided way back last fall that we wouldn't do any more P/T and O/T that was aimed at skills acquisition. We still have our P/T come out and help us look at Joel's positioning and muscle tone and if there are any areas that are concerning that might need a brace or splint or stretches. But back a year ago we decided not to work with Joel to teach him to sit, or reach, etc, etc.
I can go over that decision and see what informed it. Joel often has bouts of irritability. Let's say, to keep it simple, that he really was no longer "interested" in this sort of P/T. There was a good time in his first year where the P/T and O/T would comment on what a hard worker he was... Those days were over for us. He wasn't enjoying it. But the real kicker was just that despite our efforts, Joel had only lost skills. It didn't make sense to make him do something that he no longer enjoyed and that wasn't "helping."
But last winter Joel still very much enjoyed getting an after bath massage and stretch and play time on the floor. And so I tried to do that. Now, though, after his bath he just usually wants to get dressed quickly and have a cuddle. He hasn't really played on the floor too much for awhile, though this summer he still lay on a blanket in the grass and enjoyed it as long as someone sat with him. Since September, though, we really have not done much play on a blanket.
Joel used to sit up on my lap a lot more and play. I'd also put him in his tumbleform chair from time to time or even sometimes in his high chair. I like to hold him sitting up quite a bit. Somewhere along the line of the summer, the sitting up position seems to have become uncomfortable for him. He will do it, on my lap, for short periods. If I keep him upright for longer than a few minutes, though, he starts pressing back on my hands, to tell me he wants to lie down. If I ignore this for too long, he cries. I don't ignore it anymore. I'm not sure how much the spinal compressions in his back might be uncomfortable or painful even when he is in this position for too long, and he really has to work harder to breathe that way too. So I let him decide.
I was also feeding him orally this summer. He seemed to like it. I would feed him up to a third of a cup at a time. It made me very happy. But I've just gotten more and more scared about doing it. This fall he seems to be more "chokey" with it, though he's never had an aspiration pneumonia. He also has not seemed to be as interested, when I've tried to offer him food. I haven't really tried very hard since our hospital stay.
And with each and every one of these things, it gnaws at me. If we would have tried harder and longer, would it have helped? I mean, I think, if we hadn't have stopped the P/T, would he have been happier still when he sits? If I would have kept up with the massage and playtime, would he be playing more now? In other words, even if these things couldn't stop the progression of his disease, were they maybe helping to delay it? By quitting, did we make it worse?
Crazy, because after that first regression and bout of irritability and all, we sort of decided that our aim was not to get Joel to sit or walk (which we knew was an impossible goal, anyway) but to make Joel's life as happy as we could for as long as we could. And not one of these decisions have taken any happiness from him. He has remained happy and contented through it all, other than bouts of illness, or that irritability which springs up with no pinpointed cause, though I suspect more and more that it is linked somehow to his bone trouble.
Still, despite our reasoning, despite knowing that we have kept Joel as happy as we can, still, the doubts can linger, like a bad aroma. Did I give up to quickly? Should I keep trying to do these things? Has Joel become "bored?" Did I stop these activities because it was hard for me? Was I too lazy to keep trying? Am I depressed, am I making these decisions due to being depressed? Do I really have what's best for Joel at heart, or am I taking the "easy way?" On and on they can come.
Even sometimes when he's sleeping a lot, then I wonder, "Is he sleeping so much because he is bored? Should I be trying harder to interact with him?" I think this, despite times like yesterday when I was singing to him. For the first 10 minutes or so he smiled and enjoyed it. Then he just listened. Finally, he cried. And I stopped. He quickly snuggled in and fell right to sleep. He was too tired to listen, he just wanted to rest. Despite evidence like this, I still wonder "Have I done enough to keep him stimulated?"
And these are the "biggies." I'm not even going into the guilt I can feel about if I wash his face enough, or if I swab him with toothies enough, or if I've left him in dirty clothes "too long" or not given him enough baths, or not changed his sheets often enough or gone too long before sterilizing his equipment, or didn't turn him enough....?? Never mind, he might be perfectly happy all day long. But these are the thoughts that crawl in through the cracks of my mind and scuttle about when I'm not vigilant about extermination.
I know I'm not totally the only one in this. I remember talking with a friend on this topic about a year ago. She was asking some of the same questions I'm mentioning here. I could clearly see that it was the terrible disease that was robbing her child of the interest in playing, or the ability to do certain things. She was still feeling badly about her role in stimulating him, etc, etc., as if anything she could do would change anything about it. As I know is the case with Joel right now, but it's so much harder to see when it is your own child.
Oh, I know that for kids who are not yet in this "downward spiral" they can learn to do things and be interested and need lots of stimulation. There are kids who are "in that place." As Joel was, waaaaaay back in his first year of life. But he's no longer there. For him, the disease will not let him develop much, instead it's slowly stripping him down. I am hugely thankful for the playful times he does have and the smiles and interest he does show.
Still, doubts will remain, the insidious and blighty buggers. I wish I had a can of mental "Raid." Well, I guess I do, in a sense. Taking some time to talk to God, and singing some worship music can clear em out pretty good. They just have a tendency to reinfestations. Like ants in your lawn. No matter how many nests you clear out, there is another one forming somewhere. Over time, perhaps a long time, they will eventually weaken until they are rarely noticeable. In the meantime, I keep swatting and spraying. Ah, "Mother Guilt."
Wednesday, December 8, 2010
Could Whoever Has My Brain Please Bring it Back!
Even before Joel came along, I wouldn't say I was the most organized person. I NEVER have been good at remembering any birthday without some one helping me. My desk has always been one of the cluttered ones.
But this is just plain cruel. How can I function without a brain. Seriously, if you took it, I want it BACK. NOW.
Just when I really thought my memory and organizational skills couldn't get any worse, this week came along. I am almost ready to go to my doctor and ask for a brain scan, in case I'm developing a tumour. Has anyone noticed any personality changes? No, seriously, it really did cross my mind as a plausible answer, for a moment there.
Because I can't believe this sort of complete disintegration of my mental capabilities could be the results of turning 40 and the situation with Joel. I even sat down to make up a list of all the things I had forgotten this week, and you know what?? That's right. I couldn't remember any of them!
But they slowly rose to the surface of the sludge in my brain. Well, some of them, anyway. Like when I introduced myself to someone at church and then they told me we'd meet a few months earlier. Or how I went to Joel's endocrinology appointment (which is about his ADRENAL insufficiency) and then forgot to take his emergency cortisol replacement with me. (no, we didn't need it, but we are supposed to take it everywhere in case of emergency.) I forgot to phone a friend to confirm our plans for this evening. I actually remembered the plans. I just forgot to phone her about what time to meet. If I could remember the half of it all, I assure you the list would be pages long.
And that wouldn't be counting the times I walked into another room and forgot why I went. In fact, there have multiple times where I realized that I HAD gone into another room for something a while earlier, but hadn't actually done/gotten it. But I couldn't remember what it was that I had ended up doing there instead!! I mean, I thought, "Hey, I went to get some sausage from the freezer awhile ago... but there is no sausage?? I remember going to the laundry room....??? Hmmm, no sausage in the washing machine, so that is a good sign I guess.... but what DID I do while I was in here??"
I think the secret to feeling more organized is BEING more organized. Yeah. So no help there. Trying to get more organized at this point would be like taking a hair dryer to the snow outside in the hopes of clearing the driveway and sidewalk. It's a nice idea, but where would I start, and would I ever finish before I died?
And I'm feeling seriously lost. LOST. Like I'm living in this permanent foggy, fuzziness. I feel like I'm a purse that has dropped and scattered lipstick, credit cards, receipts, chewing gum, loose change, etc, etc all over the floor.
If only the brain was like a diamond ring. I could take it for a nice cleaning and get the settings tightened. It would come back all nice and sparkly, like brand new. Only in this case, the jeweler would be informing me that some of the diamonds had already slipped out of the settings... and maybe there's not enough gold left for it to be sized any bigger.
Because I have realized that my brain is like an answering machine that is now full. The only way to put a new message on, is to erase an earlier one. And I think that is what is happening. Every new thing I have to remember is just recording over top of something else. If that something else happens to be plans with you, a task I said I'd do, a common everyday word or phrase, or your name, I am sorry.
I promise I'll change. As soon as my brain is returned. Until then, no amount of effort on my part seems to be helping. For now, could you please phone me to remind me, wear a name tag, and pin my address and phone number to my jacket. And be very, very forgiving.
But this is just plain cruel. How can I function without a brain. Seriously, if you took it, I want it BACK. NOW.
Just when I really thought my memory and organizational skills couldn't get any worse, this week came along. I am almost ready to go to my doctor and ask for a brain scan, in case I'm developing a tumour. Has anyone noticed any personality changes? No, seriously, it really did cross my mind as a plausible answer, for a moment there.
Because I can't believe this sort of complete disintegration of my mental capabilities could be the results of turning 40 and the situation with Joel. I even sat down to make up a list of all the things I had forgotten this week, and you know what?? That's right. I couldn't remember any of them!
But they slowly rose to the surface of the sludge in my brain. Well, some of them, anyway. Like when I introduced myself to someone at church and then they told me we'd meet a few months earlier. Or how I went to Joel's endocrinology appointment (which is about his ADRENAL insufficiency) and then forgot to take his emergency cortisol replacement with me. (no, we didn't need it, but we are supposed to take it everywhere in case of emergency.) I forgot to phone a friend to confirm our plans for this evening. I actually remembered the plans. I just forgot to phone her about what time to meet. If I could remember the half of it all, I assure you the list would be pages long.
And that wouldn't be counting the times I walked into another room and forgot why I went. In fact, there have multiple times where I realized that I HAD gone into another room for something a while earlier, but hadn't actually done/gotten it. But I couldn't remember what it was that I had ended up doing there instead!! I mean, I thought, "Hey, I went to get some sausage from the freezer awhile ago... but there is no sausage?? I remember going to the laundry room....??? Hmmm, no sausage in the washing machine, so that is a good sign I guess.... but what DID I do while I was in here??"
I think the secret to feeling more organized is BEING more organized. Yeah. So no help there. Trying to get more organized at this point would be like taking a hair dryer to the snow outside in the hopes of clearing the driveway and sidewalk. It's a nice idea, but where would I start, and would I ever finish before I died?
And I'm feeling seriously lost. LOST. Like I'm living in this permanent foggy, fuzziness. I feel like I'm a purse that has dropped and scattered lipstick, credit cards, receipts, chewing gum, loose change, etc, etc all over the floor.
If only the brain was like a diamond ring. I could take it for a nice cleaning and get the settings tightened. It would come back all nice and sparkly, like brand new. Only in this case, the jeweler would be informing me that some of the diamonds had already slipped out of the settings... and maybe there's not enough gold left for it to be sized any bigger.
Because I have realized that my brain is like an answering machine that is now full. The only way to put a new message on, is to erase an earlier one. And I think that is what is happening. Every new thing I have to remember is just recording over top of something else. If that something else happens to be plans with you, a task I said I'd do, a common everyday word or phrase, or your name, I am sorry.
I promise I'll change. As soon as my brain is returned. Until then, no amount of effort on my part seems to be helping. For now, could you please phone me to remind me, wear a name tag, and pin my address and phone number to my jacket. And be very, very forgiving.
Tuesday, December 7, 2010
Editor's note
You may have noticed a few small changes here. I actually didn't even plan on this much of a change, but I really wanted to use more of the space on the sides of this blog, particularly as I wanted to put a few more pictures on the sides. And then, in order to do that, I had to choose a completely different template. So there you go!
I hope you don't mind! I must be getting old, because every time Facebook, Yahoo, or Google changes something, it irks me. I have to get used to it all over again. And usually the changes really don't make it better (in my opinion. See, I'm really old fashioned. I don't even say IMHO). I think sometimes they do it because they think if they change it, they will fool us into thinking they are constantly making it better, instead of just changing it. See, I must be getting OLD to even postulate such a scheme.
Anyway, I have resisted too many changes or adding too many "frills" to this blog. Not because I think they are bad. Not at all, I read some blogs that are very aesthetically pleasing and I enjoy it. Sometimes I'm even tempted to dress mine up a bit more.
But I haven't. Because I AM "dressing" this blog up, by keeping it simple. I'm attempting to be direct and honest and open in this blog. And keeping it all simple sort of sets the tone, I think. It's a bit bare. No distractions. I'm trying to keep my own focus on this road God is leading me down. There is a lot of interesting scenery, and I'm sorry that you have to miss that, but I sort of want the journey itself to be the focus.
So whether you like changes, and pretty pictures, or whether you like everything to stay the same and be familiar, I hope you will not mind the way I have used my artistic license in this blog.
I hope you don't mind! I must be getting old, because every time Facebook, Yahoo, or Google changes something, it irks me. I have to get used to it all over again. And usually the changes really don't make it better (in my opinion. See, I'm really old fashioned. I don't even say IMHO). I think sometimes they do it because they think if they change it, they will fool us into thinking they are constantly making it better, instead of just changing it. See, I must be getting OLD to even postulate such a scheme.
Anyway, I have resisted too many changes or adding too many "frills" to this blog. Not because I think they are bad. Not at all, I read some blogs that are very aesthetically pleasing and I enjoy it. Sometimes I'm even tempted to dress mine up a bit more.
But I haven't. Because I AM "dressing" this blog up, by keeping it simple. I'm attempting to be direct and honest and open in this blog. And keeping it all simple sort of sets the tone, I think. It's a bit bare. No distractions. I'm trying to keep my own focus on this road God is leading me down. There is a lot of interesting scenery, and I'm sorry that you have to miss that, but I sort of want the journey itself to be the focus.
So whether you like changes, and pretty pictures, or whether you like everything to stay the same and be familiar, I hope you will not mind the way I have used my artistic license in this blog.
Monday, December 6, 2010
Husbands
Yeah, I just thought I'd write a little tribute to someone important in this story. After almost a year, I thought it was about time. And I think the guy has earned it. He has had his fair share of a load to bear, not to mention all the guff he sometimes takes from me. Being the closest target, and being fairly vulnerable as I know him best of all, he has put up with his fair share of "guff."
Since he is married to me, he bears that label "husband" and sometimes he has the baggage that comes with the label attached to him. So there is an undercurrent in my tone that suggests that since he is the "husband" he is not as patient with the children. Or the doctors, for that matter. Somehow, I am "better" with things of Joel. Etc. Etc. If you are a married woman, you might know what I mean. That tiny attitude of slight superiority when it comes to things like dealing with emotions, and being comforting or whatever. Guilty as charged?
So, I'd like to get down from my slightly higher horse for a few minutes. I'd like to say that it blows me away how Steve goes to work five days a week and never calls in sick. I don't know how he has made it through this all, and still been able to deal with a job that has, in the past, been very, very stressful. When I have a bad day, when I'm just so overstressed, or when I'm just keeling over with the sadness of it all, Steve is still going on, business as usual. I really don't know how he does it. If I have a bad day, I can "take it easy." I can blog, or email a friend, or have someone over for coffee. He comes home and the laundry is PILED up to the sky. The house is not dusted (and no, he doesn't notice stuff like the dust, but he does notice the laundry). I can chill out until I feel like going on.
He can't. He's the source of income right now. And so no matter what has been happening, trips to the hospital with breathing trouble and all, no matter what, he goes out five days a week to do his job. He somehow takes the stress of being a sole breadwinner on his shoulders, and he really doesn't complain about it. It really amazes me how he keeps on going to work every day...
On more than one occasion, he has manned up when I could no longer pull my share of the load. Like the time just over a year ago when I told him I COULD NOT go to the doctor this time. And I COULD NOT sit in emergency either. He had not had any sleep either, but he just took over. He brought Joel to the doctor, and then later he sat in emergency for about three hours on his own, until I was feeling better enough to join him. He had no words of criticism or disappointment in my lapse. He just quietly accepted my weakness and went on (maybe he could recognize the "crazy" on my face.) And let me join him later on and step right back into my role as mommy.
He loves Joel so much and he kisses him and cuddles him. Mommy is, admittedly, usually best when Joel is fussing. But when I'm cooking supper or on the phone, or whatever, Steve is there to hold Joel and cuddle him. Every morning Steve takes off the CPAP machine and starts Joel's water. And gives him a few kisses.
And he is super good at giving Caeden some "Daddy time" and when he can't, Caeden sure misses it. Last week Steve had to stay late and do parent/teacher meetings. Caeden called me "Daddy." I told him I was NOT his daddy. "But who will play with me then?" he asked. See? Mommy = business, Daddy = play.
And Steve is the errand person of the house. He gets sent out a lot. He has to pick up prescriptions ALL THE TIME. And formula. In fact, a lot of the time he does the grocery shopping and I stay home with Joel. And if you don't know my husband, let me say that grocery shopping is not his favorite pastime. He rarely grumbles or complains, in fact, he usually calls me before he heads out after work, to pick up the instructions for errands on the way home.
And most of the time he puts up with my moods. He's changed a lot since I married him. (No, not thanks to me. I take no credit for it. The changes were due to God's hand and his willing heart.) He usually is very patient with my own grieving. He allows me to cry. Or even be grouchy. He tries to read this blog. He tries to talk to me about my feelings, even when it is late at night and he just wants to sleep. He is my support, and he loves me. I get a kiss every morning, and a kiss every night, and that makes my world a better place even when things are crazy.
I'm really grateful to God for putting him here with me. I'd never be able to do this without him. And in spite of my occasional fits of unfounded "womanly superiority," I often am in awe of what he does for us. So, here is a little tribute to the man we couldn't do without.
Since he is married to me, he bears that label "husband" and sometimes he has the baggage that comes with the label attached to him. So there is an undercurrent in my tone that suggests that since he is the "husband" he is not as patient with the children. Or the doctors, for that matter. Somehow, I am "better" with things of Joel. Etc. Etc. If you are a married woman, you might know what I mean. That tiny attitude of slight superiority when it comes to things like dealing with emotions, and being comforting or whatever. Guilty as charged?
So, I'd like to get down from my slightly higher horse for a few minutes. I'd like to say that it blows me away how Steve goes to work five days a week and never calls in sick. I don't know how he has made it through this all, and still been able to deal with a job that has, in the past, been very, very stressful. When I have a bad day, when I'm just so overstressed, or when I'm just keeling over with the sadness of it all, Steve is still going on, business as usual. I really don't know how he does it. If I have a bad day, I can "take it easy." I can blog, or email a friend, or have someone over for coffee. He comes home and the laundry is PILED up to the sky. The house is not dusted (and no, he doesn't notice stuff like the dust, but he does notice the laundry). I can chill out until I feel like going on.
He can't. He's the source of income right now. And so no matter what has been happening, trips to the hospital with breathing trouble and all, no matter what, he goes out five days a week to do his job. He somehow takes the stress of being a sole breadwinner on his shoulders, and he really doesn't complain about it. It really amazes me how he keeps on going to work every day...
On more than one occasion, he has manned up when I could no longer pull my share of the load. Like the time just over a year ago when I told him I COULD NOT go to the doctor this time. And I COULD NOT sit in emergency either. He had not had any sleep either, but he just took over. He brought Joel to the doctor, and then later he sat in emergency for about three hours on his own, until I was feeling better enough to join him. He had no words of criticism or disappointment in my lapse. He just quietly accepted my weakness and went on (maybe he could recognize the "crazy" on my face.) And let me join him later on and step right back into my role as mommy.
He loves Joel so much and he kisses him and cuddles him. Mommy is, admittedly, usually best when Joel is fussing. But when I'm cooking supper or on the phone, or whatever, Steve is there to hold Joel and cuddle him. Every morning Steve takes off the CPAP machine and starts Joel's water. And gives him a few kisses.
And he is super good at giving Caeden some "Daddy time" and when he can't, Caeden sure misses it. Last week Steve had to stay late and do parent/teacher meetings. Caeden called me "Daddy." I told him I was NOT his daddy. "But who will play with me then?" he asked. See? Mommy = business, Daddy = play.
And Steve is the errand person of the house. He gets sent out a lot. He has to pick up prescriptions ALL THE TIME. And formula. In fact, a lot of the time he does the grocery shopping and I stay home with Joel. And if you don't know my husband, let me say that grocery shopping is not his favorite pastime. He rarely grumbles or complains, in fact, he usually calls me before he heads out after work, to pick up the instructions for errands on the way home.
And most of the time he puts up with my moods. He's changed a lot since I married him. (No, not thanks to me. I take no credit for it. The changes were due to God's hand and his willing heart.) He usually is very patient with my own grieving. He allows me to cry. Or even be grouchy. He tries to read this blog. He tries to talk to me about my feelings, even when it is late at night and he just wants to sleep. He is my support, and he loves me. I get a kiss every morning, and a kiss every night, and that makes my world a better place even when things are crazy.
I'm really grateful to God for putting him here with me. I'd never be able to do this without him. And in spite of my occasional fits of unfounded "womanly superiority," I often am in awe of what he does for us. So, here is a little tribute to the man we couldn't do without.
Thursday, December 2, 2010
Early Christmas Gift
Today Joel had a hearing test, after going months and months without getting him tested. I went in fully expecting to hear that Joel now had a significant hearing loss, though not a total loss, as it still seemed to me he had some hearing (as I previously mentioned, he does now sometimes smile at my singing).
Joel was very sleepy, as the test was first thing this morning, and normally he likes to sleep a lot in the morning. In fact, he slept while I dressed him, he slept in the car, he slept in the stroller. He only briefly woke now and then when I'd take off or put on some item of clothing. I was relieved that he could do this, because otherwise I know I'd have had a very upset little guy. He HATES to be woken up (he must have fantastic dreams) and I avoid doing it at all costs.
So I was glad he was contented/drowsy/sleeping instead of awake/unhappy/screaming full bore. But I thought "Man, this hearing test will be a waste of time. He's either going to sleep through everything, or if we try and rouse him, he'll be a screaming mess." I was surprised and very happy when the audiologist offered to pass on her next appointment to a colleague (it was referral, so she could do that. ;) ) and give Joel an ABR test instead.
I trust ABR tests more than sound booth tests anyway, although she still really wants a sound booth test for the next time. The sound booth test seems so much more subjective. And of course, if Joel has an off day, he might not "perform" very well. The ABR test is done by putting sound into his ear and measuring how his cochlea is responding to the volume of the sound. Since Joel lay motionlessly drowsing or sleeping, the audiologist was able to do this test, which only works when the child is asleep.
I was not surprised to hear that he once again had fluid on his ears. But I was surprised to learn that he has no apparent hearing loss yet! It would be easy to be skeptical about these results, especially as he was not sedated for this ABR, and thus it would not be as accurate. Still she seemed really positive that she had gotten some good readings, all similar to the ones she got last winter when Joel was sedated. She went as low as 40 dbs and Joel was still fine. She didn't bother going down to 20dbs, as with the fluid on Joel's ears, she knew he wouldn't be hearing that right, as fluid on the ears will cause about 20dbs of hearing loss. There would be no way to tell if there were any hearing loss aside from the fluid, but since 40 dbs was still great even with the fluid, she felt he couldn't have a hearing loss that was more than slight to mild.
All of this was very good news. Such a relief. It's not that I dread hearing aids! Bring em on! It's just that I dread the approach of hearing loss, because eventually it will become total hearing loss. If that happens while Joel is still alive, I'm not sure how or what Steve and I will decide to do. I think Joel is in a pretty fragile state for the type of surgery that can give him his hearing back. And every month, he just gets more fragile. So I felt a huge feeling of relief to know that this was not the time I'd have to make such a tough decision.
And for me, it was my own Christmas miracle. When Joel was diagnosed, I prayed that he'd be able to keep his hearing, at least with aids, until he turned two. Which is the earliest they'll consider the surgery. I try not to be too general when I pray. I like to ask God for specific things, if I'm going to ask. I give Him details. Sometimes He says yes, sometimes He says no, and sometimes He says wait.
This time He answered yes, beyond what I even imagined. Joel hasn't even needed hearing aids. I had no idea that when Joel hit two years old, he be so fragile that Steve and I might not actually ask for a cochlear implant surgery. God knew though, and He's given us a minor (but so gratefully accepted) miracle in Joel's continued good hearing. He has little else, but he still has his hearing, and his big smile. And that is a pretty great Christmas gift.
Joel was very sleepy, as the test was first thing this morning, and normally he likes to sleep a lot in the morning. In fact, he slept while I dressed him, he slept in the car, he slept in the stroller. He only briefly woke now and then when I'd take off or put on some item of clothing. I was relieved that he could do this, because otherwise I know I'd have had a very upset little guy. He HATES to be woken up (he must have fantastic dreams) and I avoid doing it at all costs.
So I was glad he was contented/drowsy/sleeping instead of awake/unhappy/screaming full bore. But I thought "Man, this hearing test will be a waste of time. He's either going to sleep through everything, or if we try and rouse him, he'll be a screaming mess." I was surprised and very happy when the audiologist offered to pass on her next appointment to a colleague (it was referral, so she could do that. ;) ) and give Joel an ABR test instead.
I trust ABR tests more than sound booth tests anyway, although she still really wants a sound booth test for the next time. The sound booth test seems so much more subjective. And of course, if Joel has an off day, he might not "perform" very well. The ABR test is done by putting sound into his ear and measuring how his cochlea is responding to the volume of the sound. Since Joel lay motionlessly drowsing or sleeping, the audiologist was able to do this test, which only works when the child is asleep.
I was not surprised to hear that he once again had fluid on his ears. But I was surprised to learn that he has no apparent hearing loss yet! It would be easy to be skeptical about these results, especially as he was not sedated for this ABR, and thus it would not be as accurate. Still she seemed really positive that she had gotten some good readings, all similar to the ones she got last winter when Joel was sedated. She went as low as 40 dbs and Joel was still fine. She didn't bother going down to 20dbs, as with the fluid on Joel's ears, she knew he wouldn't be hearing that right, as fluid on the ears will cause about 20dbs of hearing loss. There would be no way to tell if there were any hearing loss aside from the fluid, but since 40 dbs was still great even with the fluid, she felt he couldn't have a hearing loss that was more than slight to mild.
All of this was very good news. Such a relief. It's not that I dread hearing aids! Bring em on! It's just that I dread the approach of hearing loss, because eventually it will become total hearing loss. If that happens while Joel is still alive, I'm not sure how or what Steve and I will decide to do. I think Joel is in a pretty fragile state for the type of surgery that can give him his hearing back. And every month, he just gets more fragile. So I felt a huge feeling of relief to know that this was not the time I'd have to make such a tough decision.
And for me, it was my own Christmas miracle. When Joel was diagnosed, I prayed that he'd be able to keep his hearing, at least with aids, until he turned two. Which is the earliest they'll consider the surgery. I try not to be too general when I pray. I like to ask God for specific things, if I'm going to ask. I give Him details. Sometimes He says yes, sometimes He says no, and sometimes He says wait.
This time He answered yes, beyond what I even imagined. Joel hasn't even needed hearing aids. I had no idea that when Joel hit two years old, he be so fragile that Steve and I might not actually ask for a cochlear implant surgery. God knew though, and He's given us a minor (but so gratefully accepted) miracle in Joel's continued good hearing. He has little else, but he still has his hearing, and his big smile. And that is a pretty great Christmas gift.
Tuesday, November 30, 2010
Another kind of loss list.
I've put two "loss lists" on this blog so far. I have another one in mind today. I'm not sure how to explain it. It's a list of the holes that Joel will leave, I guess. Many of the things on the list, are things I'd normally be so glad to get rid off. It would be a list of rejoicing if losing them meant Joel was well. But now the list leaves me in a very strange emotional landscape. Of course, right after I wrote the line about Joel being well, I gave a small laugh at the irony. Because of course, this list DOES mean that Joel is well. He's just well without me there to see it. And that is a big bummer.
So this list places me in a strange landscape of very mixed feelings. I'll just write the list. Maybe you will see what I mean.
Medications. When Joel is gone, I will lose a shelf full of meds. I'm pouring them straight down the sink with tears pouring down my face on the day he dies, and maybe you can see why I can't explain the feelings this gives me. But that is what I'm going to do. Pour bottle after bottle down the drain and throw the bottles in the garbage. Along with the oral syringes. I'll be losing three med times a day, morning, afternoon, and evening. 10pm will come, but there will be no need to go and get the meds.
Joey Pump with bags and IV pole. I'll be return this item, I won't throw it in the garbage, don't worry. When I return this item I will be donating the little stand my father made for me to the RRC for some other child to use. We'll be losing three "feeding" times and two "drinking" times a day. I won't have to mix up milk, or put suppliments in it. I won't have to clean the bag out and rinse it. No more formula sitting in my cupboard. The first thing I do every morning (after I kiss Joel) will not be to make up his milk and hook him up.
One CPAP complete with tubing and face mask and monitor. It will no longer sit on our dresser in our bedroom. I won't be cleaning it out once a week and soaking it in vinegar water. I won't be hooking up it Joel every night, probe on his toe, fresh water in the humidifier, placing the mask on his face and adjusting the straps. There will be no light flickering a heart rate in the darkness. There will be only silence, no hum of a machine.
Two playpens. I don't know what I'll do with these items, or the crib in our bedroom. Not something I can think about right now, to be honest. But they won't stay in our living room, downstairs family room, or bedroom for ever empty. Eventually they will have to go. And when they do, for months I will look at the chair or dresser or whatever happens to replace them with a sense of shock and surprise.
Appointments. I'll be losing those, and you all know that they are something I've been trying to lose for a while now. Just not this way. The calendar will be empty. I wonder if I will miss any of the doctors? I'll be losing the phone calls to the neurology nurse and the emails to the palliative care nurse. I'll no longer be walking into Children's Hospital as if it were my second home. Believe me, that gives me a VERY strange feeling.
My "housebound" lifestyle. What can I say about the freedom I will suddenly have gained? How we'll be able to go anywhere at any time and all together? How we can go on trips, even to PEI for a visit? I'll go out in the evenings with friends and be free of guilt. But only until I realize once again the cost of the freedom. For every time we go out, will we not feel guilty that we can go out, and sorrow too for the reason why? A vacation will be a very bittersweet thing, we will think of little else except how we wish we could have taken Joel on one.
The tension, the stress, the worry. Whatever you wish to call it. The constant monitoring that I do. Checking breathing, checking temperature, checking diapers. Worrying at least once a week over whether we are heading for the hospital. The whole thing. I'll be losing that. Oddly, for awhile I'll just be gaining it all back. As C.S.Lewis pointed out, there is that in grief which feels oddly like fear or anxiety. And the sudden loss of needing to check and monitor will leave me feeling anxious. There will be a hole in my existence, like a missing tooth, and my mind will keep going back there to "worry" at it. I'll have a constant sense of "something's wrong" as I keep reminding myself of what that is.
I could go on, but I think I have said the big ones, and certainly enough to give you the idea of what I mean. The landscape I'm talking about. The mix of relief, guilt, sorrow, longing, freedom, regret, the whole big mish mash. And other feelings I can't even begin to describe.
This blog has reduced me to a sodden mess. I've surprised myself with how much pain is in the loss of all these terrible things, and I've been weeping silently trying to keep Melanie from hearing me, as she's here for respite and keeping Joel happy right now.
Strange isn't it? All these tasks, all these hated interventions, all the chains they put on us. All of them are part of life with Joel. And when he's gone, they will leave a very large, if very strange, sort of hole in our lives. They are a different kind of loss list.
So this list places me in a strange landscape of very mixed feelings. I'll just write the list. Maybe you will see what I mean.
Medications. When Joel is gone, I will lose a shelf full of meds. I'm pouring them straight down the sink with tears pouring down my face on the day he dies, and maybe you can see why I can't explain the feelings this gives me. But that is what I'm going to do. Pour bottle after bottle down the drain and throw the bottles in the garbage. Along with the oral syringes. I'll be losing three med times a day, morning, afternoon, and evening. 10pm will come, but there will be no need to go and get the meds.
Joey Pump with bags and IV pole. I'll be return this item, I won't throw it in the garbage, don't worry. When I return this item I will be donating the little stand my father made for me to the RRC for some other child to use. We'll be losing three "feeding" times and two "drinking" times a day. I won't have to mix up milk, or put suppliments in it. I won't have to clean the bag out and rinse it. No more formula sitting in my cupboard. The first thing I do every morning (after I kiss Joel) will not be to make up his milk and hook him up.
One CPAP complete with tubing and face mask and monitor. It will no longer sit on our dresser in our bedroom. I won't be cleaning it out once a week and soaking it in vinegar water. I won't be hooking up it Joel every night, probe on his toe, fresh water in the humidifier, placing the mask on his face and adjusting the straps. There will be no light flickering a heart rate in the darkness. There will be only silence, no hum of a machine.
Two playpens. I don't know what I'll do with these items, or the crib in our bedroom. Not something I can think about right now, to be honest. But they won't stay in our living room, downstairs family room, or bedroom for ever empty. Eventually they will have to go. And when they do, for months I will look at the chair or dresser or whatever happens to replace them with a sense of shock and surprise.
Appointments. I'll be losing those, and you all know that they are something I've been trying to lose for a while now. Just not this way. The calendar will be empty. I wonder if I will miss any of the doctors? I'll be losing the phone calls to the neurology nurse and the emails to the palliative care nurse. I'll no longer be walking into Children's Hospital as if it were my second home. Believe me, that gives me a VERY strange feeling.
My "housebound" lifestyle. What can I say about the freedom I will suddenly have gained? How we'll be able to go anywhere at any time and all together? How we can go on trips, even to PEI for a visit? I'll go out in the evenings with friends and be free of guilt. But only until I realize once again the cost of the freedom. For every time we go out, will we not feel guilty that we can go out, and sorrow too for the reason why? A vacation will be a very bittersweet thing, we will think of little else except how we wish we could have taken Joel on one.
The tension, the stress, the worry. Whatever you wish to call it. The constant monitoring that I do. Checking breathing, checking temperature, checking diapers. Worrying at least once a week over whether we are heading for the hospital. The whole thing. I'll be losing that. Oddly, for awhile I'll just be gaining it all back. As C.S.Lewis pointed out, there is that in grief which feels oddly like fear or anxiety. And the sudden loss of needing to check and monitor will leave me feeling anxious. There will be a hole in my existence, like a missing tooth, and my mind will keep going back there to "worry" at it. I'll have a constant sense of "something's wrong" as I keep reminding myself of what that is.
I could go on, but I think I have said the big ones, and certainly enough to give you the idea of what I mean. The landscape I'm talking about. The mix of relief, guilt, sorrow, longing, freedom, regret, the whole big mish mash. And other feelings I can't even begin to describe.
This blog has reduced me to a sodden mess. I've surprised myself with how much pain is in the loss of all these terrible things, and I've been weeping silently trying to keep Melanie from hearing me, as she's here for respite and keeping Joel happy right now.
Strange isn't it? All these tasks, all these hated interventions, all the chains they put on us. All of them are part of life with Joel. And when he's gone, they will leave a very large, if very strange, sort of hole in our lives. They are a different kind of loss list.
The Voice
Things have been good now every since September. By which I mean that Joel has not been admitted to hospital, and we've had only the "usual" sort of difficulties. We have been "stable."
So, for the most part, other than appointment annoyances and Christmas blues, I've been feeling pretty good. There is this other part though. The voice that always whispers "This good time can't last." This Sunday, sitting in church, the voice was whispering and whispering to me. I thought I might have to leave and go cry somewhere. But I ignored it away.
The truth, though, is that the voice is right. It's warning me not to get to complacent or relaxed about it all. I really don't want you to think this voice steals all my joy. It sometimes chills me. It sometimes scares me. But it's not the sort of thing that can steal my joy.
It's more that when I'm out on respite and then we head for home, the voice is whispering, "this could be the time you come home and find an ambulance in your driveway... " and I'm so happy and relieved when it's not. I walk into the house to my comfortable little boy and I hold him. And the voice whispers "This could be your last chance to be so happy coming home to his little face." And I kiss him all over his face. Sometimes I let him rest in his bed and clean (or worse, read a book!), then I fret to myself, what if he dies tomorrow, will I regret I'm not holding him right now?
This voice is not my enemy and it is not my friend. It's just a truth that I keep hearing, one that is never far away from my heart. At times I feel a sort of panic. And other times I almost feel a sense of reverence, for the moment I have.
I'm writing this here and now, because I don't want anyone to think that even though things are well and I'm doing good, I don't want you to think I ever lose sight of the truth of it all. Which is that a child in Joel's fragile condition can have a "sudden" down turn at any time. And that as far as the future goes, his time seems fairly limited. This never leaves me, even in the good times.
I'm hoping this good time last until Christmas. No guarantee. This is my hope though. One more happy and NON-hospital Christmas together.
But January scares me. I'm dreading more illness, more hospital time, and less and less of Joel. The months of January and February have not, traditionally, been my best months. I miss the light of longer days by then, and there are no holidays to cheer me. I'm afraid of how hard a down turn, or Joel's death, might be for me during that time.
I'm trying to trust God with that. I have prayed that God will take Joel home in a "good" time for us all, one where Steve doesn't have to worry about performance in his job, where he can grieve without job stress. I have prayed that God will take Joel home without a lot of illness, without a long hospital stay. That is all I can do for now.
And I stop and listen to the voice. It keeps me real, and it helps me keep my priorities where I want them. On Joel, and the rest of my family.
So, for the most part, other than appointment annoyances and Christmas blues, I've been feeling pretty good. There is this other part though. The voice that always whispers "This good time can't last." This Sunday, sitting in church, the voice was whispering and whispering to me. I thought I might have to leave and go cry somewhere. But I ignored it away.
The truth, though, is that the voice is right. It's warning me not to get to complacent or relaxed about it all. I really don't want you to think this voice steals all my joy. It sometimes chills me. It sometimes scares me. But it's not the sort of thing that can steal my joy.
It's more that when I'm out on respite and then we head for home, the voice is whispering, "this could be the time you come home and find an ambulance in your driveway... " and I'm so happy and relieved when it's not. I walk into the house to my comfortable little boy and I hold him. And the voice whispers "This could be your last chance to be so happy coming home to his little face." And I kiss him all over his face. Sometimes I let him rest in his bed and clean (or worse, read a book!), then I fret to myself, what if he dies tomorrow, will I regret I'm not holding him right now?
This voice is not my enemy and it is not my friend. It's just a truth that I keep hearing, one that is never far away from my heart. At times I feel a sort of panic. And other times I almost feel a sense of reverence, for the moment I have.
I'm writing this here and now, because I don't want anyone to think that even though things are well and I'm doing good, I don't want you to think I ever lose sight of the truth of it all. Which is that a child in Joel's fragile condition can have a "sudden" down turn at any time. And that as far as the future goes, his time seems fairly limited. This never leaves me, even in the good times.
I'm hoping this good time last until Christmas. No guarantee. This is my hope though. One more happy and NON-hospital Christmas together.
But January scares me. I'm dreading more illness, more hospital time, and less and less of Joel. The months of January and February have not, traditionally, been my best months. I miss the light of longer days by then, and there are no holidays to cheer me. I'm afraid of how hard a down turn, or Joel's death, might be for me during that time.
I'm trying to trust God with that. I have prayed that God will take Joel home in a "good" time for us all, one where Steve doesn't have to worry about performance in his job, where he can grieve without job stress. I have prayed that God will take Joel home without a lot of illness, without a long hospital stay. That is all I can do for now.
And I stop and listen to the voice. It keeps me real, and it helps me keep my priorities where I want them. On Joel, and the rest of my family.
Thursday, November 25, 2010
Let music sing again
Back last January, Joel got his hearing testing with a sedated ABR, and his hearing was still good enough he didn't need hearing aids. It was wonderful news, and when my metabolic doctor heard, he got a huge smile on his face and said "That's great! Now sing to him lots!"
The thing is, I really couldn't. I mean, it was physically impossible. Not because of a mechanical problem with my voice. But because trying to sing just about any song since Joel's diagnosis had made me cry. Have you ever tried to sing and cry? I mean, you might be able to sing if it's just a few tears trickling down your face. But when I tried to sing my throat closed up and funny tones and squeaks came out and my voice warbled in a way that made it impossible. My throat sometimes closed up so much that NOTHING came out of my mouth.
I used to love music. I listened to it often and went out and bought favorite CD's and stuff. Since our diagnosis, it's been silence that I loved. Not that I got a lot of it, what with Treehouse on TV and a young child and a fussing baby/toddler and all that. But I found, at times when I put the music on, that it was just NOISE. It feel so much more peaceful just to turn it off. And most of the time I did, unless it was kid's music.
Yeah. Silence. I craved silence. I used to sing to myself, when I didn't have music on. I would lilt around the kitchen singing every song I knew, and believe me, I know a lot of songs from church and from camp and all that. But in the months following Joel's diagnosis, I just wanted silence with my thoughts, and if I tried to put my thoughts into music, then tears inevitably followed.
I felt guilty that I could not sing to Joel. After all, it's not like he really saw my face. There was so little to amuse him besides me, and I couldn't choke out songs. So I felt bad.
Though he showed little response to my singing, when I did try. It didn't really seem to calm his crying or anything. I never saw a smile in response to it. He seemed pretty blank about it all.
But slowly, little by little, I've started to sing again. I've been able to make it through a few songs in church without having to stop. More every time. And I've started singing around the house again. And listening to some of my CD's.
I've started singing to Joel more too. And funny thing is, yesterday and today, he seemed to like it. He almost seemed to crave it, it made him happier and more relaxed. And surprise of all surprises, for the first time ever, he started to smile in response to my singing.
The last few days have been really hard for me. I've wept a lot and been generally more emotional. This morning I didn't much feel like getting out of bed.
But slowly, over time, it seems like the music is coming back. And no matter how bad I feel, if the music is coming back, that surely is a good thing. Joel thinks so, anyway.
The thing is, I really couldn't. I mean, it was physically impossible. Not because of a mechanical problem with my voice. But because trying to sing just about any song since Joel's diagnosis had made me cry. Have you ever tried to sing and cry? I mean, you might be able to sing if it's just a few tears trickling down your face. But when I tried to sing my throat closed up and funny tones and squeaks came out and my voice warbled in a way that made it impossible. My throat sometimes closed up so much that NOTHING came out of my mouth.
I used to love music. I listened to it often and went out and bought favorite CD's and stuff. Since our diagnosis, it's been silence that I loved. Not that I got a lot of it, what with Treehouse on TV and a young child and a fussing baby/toddler and all that. But I found, at times when I put the music on, that it was just NOISE. It feel so much more peaceful just to turn it off. And most of the time I did, unless it was kid's music.
Yeah. Silence. I craved silence. I used to sing to myself, when I didn't have music on. I would lilt around the kitchen singing every song I knew, and believe me, I know a lot of songs from church and from camp and all that. But in the months following Joel's diagnosis, I just wanted silence with my thoughts, and if I tried to put my thoughts into music, then tears inevitably followed.
I felt guilty that I could not sing to Joel. After all, it's not like he really saw my face. There was so little to amuse him besides me, and I couldn't choke out songs. So I felt bad.
Though he showed little response to my singing, when I did try. It didn't really seem to calm his crying or anything. I never saw a smile in response to it. He seemed pretty blank about it all.
But slowly, little by little, I've started to sing again. I've been able to make it through a few songs in church without having to stop. More every time. And I've started singing around the house again. And listening to some of my CD's.
I've started singing to Joel more too. And funny thing is, yesterday and today, he seemed to like it. He almost seemed to crave it, it made him happier and more relaxed. And surprise of all surprises, for the first time ever, he started to smile in response to my singing.
The last few days have been really hard for me. I've wept a lot and been generally more emotional. This morning I didn't much feel like getting out of bed.
But slowly, over time, it seems like the music is coming back. And no matter how bad I feel, if the music is coming back, that surely is a good thing. Joel thinks so, anyway.
Tuesday, November 23, 2010
Blue Christmas
I didn't really know what else to call this blog, though I think it's not a strictly accurate name.
It's just that I'm feeling some ambivalence towards Christmas this year. Not about the meaning of Christmas. Not about the message behind it the celebration. Just about the celebrating part of it.
I've been listening to Christmas music, which isn't hard for me because I LOVE the music. I've been known to listen to it in the middle of summer, yessir! I've been decorating the house, and that one has been strangely difficult for me, because I usually love to make my home have that "Christmas-y" look. All glowing and warm and joyous.
But this year it seems like a lot of work. And I'm not feeling as glowing, warm and joyous about it all. Christmas seems a bit hard this year.
It might be because I believe this will likely be Joel's last Christmas with us. I have a hard time imagining him make it for another full year, though it's possible. And surely I know that next year, there will be LESS left of Joel. Just like this year there is less of him then last year. And that all feels pretty sad.
I mean, it also makes this Christmas pretty special. Every time we do something, we'll be thinking this might be the last time we do it with Joel here. So it makes it all very, very precious. But sad too. Bittersweet.
And too, while every year there is a bit less of Joel, it feels like there is less FOR him too. Buying gifts for Joel always sort of bums me out. At least, it has since his first b-day when I bought him this amazing floor mat, but then he went downhill right after that, and barely enjoyed it at all. For Christmas last year I searched hard to find him something for his stocking. I was relieved, satisfied, maybe even delighted, to find him a chew toy that vibrated, a little massage tool because he was enjoying massages, and a tooth brush set with gum massager included.
This year, I got nothing. I mean, I bought him a couple of pairs of pj's. Not really "normal" two year old fare. Sure, I know, pj's are a great gift. If you think that idea can make me feel better - guess again. And family and friends ask what to get him. What do I say? Clothes. Yup. Clothes. Pretty imaginative stuff, huh?
Here's a little note of joy for my friend, Caroline. I'm not making this up. When I let Joel feel Ross's little Hedgie, he did smile. And I've not really seen much reaction to tactile stuff from him. But there was something about Hedgie that made him smile!
I just don't have it in me anymore, though, to try and buy any tactile stuff. It's so disappointing, because so often Joel just really isn't that interested in playing. If he is playful, he's more interested in getting kisses and zerberts on the palms of his hands, and talking and such. Which, I'm not knocking as it's own sort of gift. But you can't wrap it and put it under the tree with the rest of the gifts and it just makes me sad, is all.
If this is Joel's last Christmas, I just wish I could give him one that was equal in excitement and happiness to what his older brother will get.
I hope that doesn't make you feel too sad or too bad. I'm still looking forward to our family Christmas. And I'm SUPER grateful to have Joel here for another one. At least, I hope he'll be here. Don't get me started on how THAT feels, knowing that at any time that could change, and Joel wouldn't even be here.
It's just that I'm feeling happy, excited, and blue. All at the same time.
It's just that I'm feeling some ambivalence towards Christmas this year. Not about the meaning of Christmas. Not about the message behind it the celebration. Just about the celebrating part of it.
I've been listening to Christmas music, which isn't hard for me because I LOVE the music. I've been known to listen to it in the middle of summer, yessir! I've been decorating the house, and that one has been strangely difficult for me, because I usually love to make my home have that "Christmas-y" look. All glowing and warm and joyous.
But this year it seems like a lot of work. And I'm not feeling as glowing, warm and joyous about it all. Christmas seems a bit hard this year.
It might be because I believe this will likely be Joel's last Christmas with us. I have a hard time imagining him make it for another full year, though it's possible. And surely I know that next year, there will be LESS left of Joel. Just like this year there is less of him then last year. And that all feels pretty sad.
I mean, it also makes this Christmas pretty special. Every time we do something, we'll be thinking this might be the last time we do it with Joel here. So it makes it all very, very precious. But sad too. Bittersweet.
And too, while every year there is a bit less of Joel, it feels like there is less FOR him too. Buying gifts for Joel always sort of bums me out. At least, it has since his first b-day when I bought him this amazing floor mat, but then he went downhill right after that, and barely enjoyed it at all. For Christmas last year I searched hard to find him something for his stocking. I was relieved, satisfied, maybe even delighted, to find him a chew toy that vibrated, a little massage tool because he was enjoying massages, and a tooth brush set with gum massager included.
This year, I got nothing. I mean, I bought him a couple of pairs of pj's. Not really "normal" two year old fare. Sure, I know, pj's are a great gift. If you think that idea can make me feel better - guess again. And family and friends ask what to get him. What do I say? Clothes. Yup. Clothes. Pretty imaginative stuff, huh?
Here's a little note of joy for my friend, Caroline. I'm not making this up. When I let Joel feel Ross's little Hedgie, he did smile. And I've not really seen much reaction to tactile stuff from him. But there was something about Hedgie that made him smile!
I just don't have it in me anymore, though, to try and buy any tactile stuff. It's so disappointing, because so often Joel just really isn't that interested in playing. If he is playful, he's more interested in getting kisses and zerberts on the palms of his hands, and talking and such. Which, I'm not knocking as it's own sort of gift. But you can't wrap it and put it under the tree with the rest of the gifts and it just makes me sad, is all.
If this is Joel's last Christmas, I just wish I could give him one that was equal in excitement and happiness to what his older brother will get.
I hope that doesn't make you feel too sad or too bad. I'm still looking forward to our family Christmas. And I'm SUPER grateful to have Joel here for another one. At least, I hope he'll be here. Don't get me started on how THAT feels, knowing that at any time that could change, and Joel wouldn't even be here.
It's just that I'm feeling happy, excited, and blue. All at the same time.
Monday, November 22, 2010
Anger: Part Two
Here we go, a bit more on the topic of anger.
Previously I wrote about how I was angry at God, but not ANGRY.
I'm going to write about anger once again, but this time not the anger that might be directed toward God when something like this happens.
I'm going to talk about "marriage anger." I know there are some statistics somewhere about the dismal future prospects for those who lose a child. It's pretty negative. But I'm pretty confident that Steve and I are going to make it. Not because we are either of us so great at marriage. I think over time we have both learnt that we'll never be replacements for Dr. Phil. Well, maybe Dr. Phil is not a good example anyway. Maybe he's more of an example that being human is a state every one of us shares.
In any case, my confidence lies more in the fact that God just has not let us go through all of this. We have just seen His hand, here and there, protecting us and our marriage. I'm not going to get into all that, because this is not about marriage survival, it is about marriage anger. And even the anger part could more than fill a blog, marriage survival can fill several books.
So, I'm just going to say that in my experience one of the huge obstacles thrown up in my marriage due to everything related to Joel has been anger. Any anger, not just that which ends up directed at my husband. But especially that one.
You might think I'm saying I somehow blame Steve for Joel's illness. I'm not saying that. If you are married, then you know that marriage is an opportunity for irritation, frustration, annoyance, and pique like no other! You know what I mean when I say that you are often amazed with the situations that arise! Who could believe that deciding where to park, cleaning skills, habits hygienic in nature, or whether or not you buy vs make a lunch could spark so much emotion and debate?
Here is what I think I have experienced when it comes to Joel. Not only are there waaaaaaay more things to disagree about, but there is just a heck of a lot of what I'm going to call "free-floating anger" just, well, floating around. Sometimes there is so much stress and frustration with the situation, so much pain and worry, that it just builds up in the air, like an electrical storm brewing.
Yup, big old electrical storm clouds of anger, just building up in the sky behind you and if you are facing the other way you might not even notice them there, looming up larger and blacker at every moment. And all it takes is one little extra conductive spot and KA-POW! Lightening strikes and things get fried!
I have been completely awe-struck by how very angry I have become and how quickly! At times, I really thought I must be crazy. I mean, it doesn't take much to become a conductor! Leave your rubber boots ON! Danger zone! The lightening is desperate to come to ground, and it's not particular.
Do you know the sort of anger I'm talking about? I mean the sort of anger where at a moments notice you are ready to burn your marriage to the ground and stand on the smouldering pile shouting "Ha! Serves you right!!" Does that sound like I'm a terrible person? Well, truth be told, sometimes I am.
And there have been times where I have been so angry I could have so easily giving in to the urge. And there has been absolutely no justification for that sort of anger. The "I'm out of control destructive even to myself" sort of anger. Where you are absolutely bonkers. You would tear down your own marriage board by board, flinging broken bits around you, scattered and splintered shards underfoot and then stomped off in your bare feet over the mess not even noticing the blood dripping from your soles. That's the kind of insanity I'm talking about. That I have felt. And I better stop now, because my mother in law reads this, and she might be sitting there right now reading this, hands clenched and nails driving into her palms.
I've said enough bad stuff in those times, but I'm glad that I was kept, by God's grace, from saying some of those gasoline igniting or wall smashing things that come to our minds in those moments of crazy. I mean it literally when I say "Thank God!"
And thankfully, those moments don't happen much anymore. I suppose that is due to various things, like getting respite and being able to have some time to tend to marriage-love. Also, respite has lessened our general stress, though we still have flare-ups in the bad times, like hospitalizations.
I suppose as well that as "Anger" is one of those "five stages" of grief that sort of passes. Though as I pointed out with one of my favourite poems, grief is a circular staircase, and we tend to revisit those stages many times over on our way up through it. Still, I think both Steve and I just plain tend to be less angry over it all as we walk this journey.
Keeping closer to God also helps. Turning the anger over to Him and just feeling it disperse. Learning to trust Him with the stress and the worry. And the part I spoke about in an earlier blog, where I talked about surrender as opposed to acceptance. Because even more in this case, it seems that it is surrender that frees me from it all. When you are hurt, you desire vengeance. Yes, there is that part of it in our anger at the pain. We are like injured animals, we want to strike back, even mistaking those who wish to help us by clawing and biting.
And in surrender, I have released that desire to hurt someone, anyone back. I've surrendered. The war is over. Peace may return. I've not learnt it yet. But I'm learning, as I go along. Because the peace inside is a better trade for the anger. And at the end of it all, I want to look at the strong protective walls of my marriage, a safe place for my family to dwell.
Previously I wrote about how I was angry at God, but not ANGRY.
I'm going to write about anger once again, but this time not the anger that might be directed toward God when something like this happens.
I'm going to talk about "marriage anger." I know there are some statistics somewhere about the dismal future prospects for those who lose a child. It's pretty negative. But I'm pretty confident that Steve and I are going to make it. Not because we are either of us so great at marriage. I think over time we have both learnt that we'll never be replacements for Dr. Phil. Well, maybe Dr. Phil is not a good example anyway. Maybe he's more of an example that being human is a state every one of us shares.
In any case, my confidence lies more in the fact that God just has not let us go through all of this. We have just seen His hand, here and there, protecting us and our marriage. I'm not going to get into all that, because this is not about marriage survival, it is about marriage anger. And even the anger part could more than fill a blog, marriage survival can fill several books.
So, I'm just going to say that in my experience one of the huge obstacles thrown up in my marriage due to everything related to Joel has been anger. Any anger, not just that which ends up directed at my husband. But especially that one.
You might think I'm saying I somehow blame Steve for Joel's illness. I'm not saying that. If you are married, then you know that marriage is an opportunity for irritation, frustration, annoyance, and pique like no other! You know what I mean when I say that you are often amazed with the situations that arise! Who could believe that deciding where to park, cleaning skills, habits hygienic in nature, or whether or not you buy vs make a lunch could spark so much emotion and debate?
Here is what I think I have experienced when it comes to Joel. Not only are there waaaaaaay more things to disagree about, but there is just a heck of a lot of what I'm going to call "free-floating anger" just, well, floating around. Sometimes there is so much stress and frustration with the situation, so much pain and worry, that it just builds up in the air, like an electrical storm brewing.
Yup, big old electrical storm clouds of anger, just building up in the sky behind you and if you are facing the other way you might not even notice them there, looming up larger and blacker at every moment. And all it takes is one little extra conductive spot and KA-POW! Lightening strikes and things get fried!
I have been completely awe-struck by how very angry I have become and how quickly! At times, I really thought I must be crazy. I mean, it doesn't take much to become a conductor! Leave your rubber boots ON! Danger zone! The lightening is desperate to come to ground, and it's not particular.
Do you know the sort of anger I'm talking about? I mean the sort of anger where at a moments notice you are ready to burn your marriage to the ground and stand on the smouldering pile shouting "Ha! Serves you right!!" Does that sound like I'm a terrible person? Well, truth be told, sometimes I am.
And there have been times where I have been so angry I could have so easily giving in to the urge. And there has been absolutely no justification for that sort of anger. The "I'm out of control destructive even to myself" sort of anger. Where you are absolutely bonkers. You would tear down your own marriage board by board, flinging broken bits around you, scattered and splintered shards underfoot and then stomped off in your bare feet over the mess not even noticing the blood dripping from your soles. That's the kind of insanity I'm talking about. That I have felt. And I better stop now, because my mother in law reads this, and she might be sitting there right now reading this, hands clenched and nails driving into her palms.
I've said enough bad stuff in those times, but I'm glad that I was kept, by God's grace, from saying some of those gasoline igniting or wall smashing things that come to our minds in those moments of crazy. I mean it literally when I say "Thank God!"
And thankfully, those moments don't happen much anymore. I suppose that is due to various things, like getting respite and being able to have some time to tend to marriage-love. Also, respite has lessened our general stress, though we still have flare-ups in the bad times, like hospitalizations.
I suppose as well that as "Anger" is one of those "five stages" of grief that sort of passes. Though as I pointed out with one of my favourite poems, grief is a circular staircase, and we tend to revisit those stages many times over on our way up through it. Still, I think both Steve and I just plain tend to be less angry over it all as we walk this journey.
Keeping closer to God also helps. Turning the anger over to Him and just feeling it disperse. Learning to trust Him with the stress and the worry. And the part I spoke about in an earlier blog, where I talked about surrender as opposed to acceptance. Because even more in this case, it seems that it is surrender that frees me from it all. When you are hurt, you desire vengeance. Yes, there is that part of it in our anger at the pain. We are like injured animals, we want to strike back, even mistaking those who wish to help us by clawing and biting.
And in surrender, I have released that desire to hurt someone, anyone back. I've surrendered. The war is over. Peace may return. I've not learnt it yet. But I'm learning, as I go along. Because the peace inside is a better trade for the anger. And at the end of it all, I want to look at the strong protective walls of my marriage, a safe place for my family to dwell.
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