I'm trying to eat my lunch of soup while I type this. A bit short on time today, as we are off to the doctors in a couple of hours. It's a check up with the ENT doctor to see how the fluid in Joel's ears is, and how his adenoids are too, while we are at it. I think I should have pureed the soup and then tried sucking it through a straw. It's really hard to eat soup and type at the same time.
I'm feeling a bit stressed due to Joel's eyes. They are pretty ugly, even though he is so cute. I hate anything that detracts from his cuteness, especially when we go out. I sent another pic to the eye doctor, we'll see what he says. I'm not feeling too hopeful, from the sounds of what some of the other PBD moms have said, these chalazions are not easy to get rid of. :( It's insult to injury, really, and I have had a little cry about it. I should just be glad that it doesn't put Joel in hospital (and I am), but at the same time, I am having a pretty big emotional reaction to it.
So today we put on our swanky new outfit from Grandma. (Oh, by we, I mean Joel. Don't worry, I'm not to the place yet where I wear his clothing, I have not yet lost any weight despite my "best?" efforts.) It consists of black cords, black and white checked shirt, and black vest with a white pattern. Joel looks pretty snazzy in it.
And while I put it on him, I was thinking about how I really am saying something every time I dress him to take him out. Actually, I think I am trying to shout something, but I'm not sure children's clothing ever gets to the level of shouting. (unlike teenager clothing. Man, those guys can SHOUT.)
I dress Joel in the nicest clothes I can when we go out. At home, he sometimes wears pjs all day. He has some cute ones, and they are very comfy. I don't mind him being comfy.
But when we go out, I try and put on the cutest clothes he has. Because I'm am for sure saying something. I am making a statement. It's one that I can't really say verbally, so I have to make the statement with clothes.
I'm saying "This is a loved and cherished child. This child is important. This child really, really matters to me. There must be something wonderful about this child, because his momma thinks he is AWESOME!" And it's not really subconscious. Oh, I don't think those words every time I dress him. But in the back of my mind, they are there. And the feeling, in my heart, is there.
I think it is sometimes even a warning to doctors. "LOOK OUT! This mom really CARES! Be on your best behaviour and do what you can. This woman hasn't given up on CLOTHING, so she HASN'T GIVEN UP ON HER SON." A wise doctor who sees how Joel is dressed would not say to his mother "We think you wouldn't want surgery anyway, because Joel likely won't live much longer." Of course, we might not opt for surgery, it's true. But a wise doctor will see the way Joel is dressed, and be careful how things are phrased. Too bad when Joel is hospitalized, they usually don't dress him because of all the IV lines!
The message is not only for doctors. It's for other people in the waiting room, or the park, or where ever we happen to be. I am saying "Look! This is a beloved child! I am proud of him!"
HE IS CHERISHED!
Monday, January 31, 2011
Friday, January 28, 2011
Banishing Resentment
I was speaking to someone who helps us manage life with Joel this week. We were talking about whether or not our family needed/wanted to have some out of home respite for Joel. And something that came up in the discussion was how out of home respite is a needed break for some families so that they didn't get a build up of resentment toward the child that needed so much care and attention.
At the time, this idea surprised me. Just the thought that I might need break from Joel to help me cope with feelings of resentment. And I realized that it had, indeed, been a long time since I felt any resentment about the situation at all. Now this blog gets tricky. I don't want to sound "preachy" or like some sort of guru or something. Nothing harder for a smoker than someone who has just quit, right? I don't mean this blog that way at all. If you are struggling with resentment, I promise I don't judge you. I just want to share something beautiful God has done for me.
Of course, it is normal and natural to feel resentment any time our obligation to the people in our lives keeps us from doing things we really want to do. That feeling of being "trapped" in a situation, and giving up what we love because we are forced to do so.
And I have felt resentment about Joel. Though I don't think I ever felt it towards him. I guess I figured he really couldn't help it, so I directed any resentment toward the situation, or maybe even towards God. The one thing I really remember is way, way back, when Joel was only about 8 or 9 months old. Back when I thought I was looking ahead to a future where Steve and I were still caring for him as we turned 60. I can't believe it now, with everything that has happened since then. But with our initial diagnosis of IRD, we really thought that Joel would live to be 10 or even 20. I know of children that make it past 25.
And when I thought of those years... well, as I have already mentioned in other blogs...I guess you could say the thought didn't please me, to think that I would spend the rest of my life nursing a person who would only get more dependant and have more and more health problems. I didn't want that to be what I looked forward to retirement to do.
And at different times, with lack of sleep, I felt a bit of resentment. Why couldn't I at least get a decent nights sleep if everything else had to be so crummy? That sort of feeling.
I guess it would be possible to say that I don't feel resentment anymore because both of those "big" situations are over. It is clear that Joel is not going to be here in 10 or 20 years. And I get enough sleep, most of the time.
That would be accurate, but I'm not sure it would entirely explain it all. I suppose this should be a "no-brainer," but I think I know what happened to resentment, an enemy I do remember I feared at the start of this journey. I think the weapon that did ole resentment in was simply allowing God to grow thankfulness and gratitude.
I don't want to make people struggling with this feel badly about it. Heck, I know how hard some of this stuff is, and there is lots of stuff that I let control me, instead of mastering it. And at any moment resentment could rear its' ugly head for a rematch.
But really, resentment went out, not with a bang, but a whimper. It just got "thankfulnessed" away. My eyes were opened to see, as I have said before, that what I thought were walls, were just curtains, beyond which the horizon spread out before me. And I saw, really saw, how much I had. I can tell you, I feel BLESSED. I am grateful for family. I am grateful for friends. I am grateful for my food, shelter, clothing. I am grateful for my education and the experience that I've gone through. I'm grateful for all the services we have given to us: O/T, P/T, doctors, hospitals, respite, medications, equipment, counselling, tax breaks. And I am grateful for Joel. I can not say I am grateful for his PBD. But I can tell you I am grateful that God has NOT decided to heal him, but that God has decided to transform this experience into something very different from how it first appeared to me.
You can not feel gratitude and resentment at the same time. I'm happy to be rid of the resentment and keep the gratitude.
And then there is the part where I had to give up some things for Joel. Yes. I do have to give up some things for Joel. But then, I don't see that as entirely accurate, either. I had some plans for life. It was painful to have some of them stripped away. Some for just a season. Some likely for good. I won't say that it's not a painful or difficult process.
But the power over resentment started to grow the moment I said "Ok, God. You take this. I give it to You. I'm here, waiting for You to show me the way to go." Maybe this all sounds like gibberish to you. Maybe you are reading this and you don't even believe God exists, so I just sound nutso. Fair enough. But I have to point out that I am a grateful and resent-free nutso!!
It's kind of like when a child gets a hold of a fistful of coins. And then an adult comes along, and tells them, "I'll trade you those 5 pennies, two dimes, three quarters and a nickel, for this lovely red piece of paper with the queen on it." We, like small children, are not always able to recognize the true worth of what we are being given.
My fistful of coins was taken away by things bigger and stronger than me. I sat on the sidewalk and cried, real, bitter tears at the unfairness and pain of a life where things can get ripped out of your very grasp. The choice was to see that there were greater riches being held out to me and accept them, or to lie on the sidewalk in a funk or worse. An unwilling pupil will never learn anything. Only a teachable heart can be transformed.
My favorite work of fiction, of all time, is an allegory. In the story, the heroine is on a journey. It is a journey very similar to the one I find myself on right now. On this journey she crosses many obstacles, including a desert, where she finds a tiny golden flower. When she asks the flower it's name, it tells her that it is called "Acceptance with Joy." The little flower has accepted with joy the desert and the small drops of rain that fall on it, and now it has a beautiful flower.
And I see now, that all along this journey, God has been "tricking" me. For I see I come upon that word, "acceptance" once again. In fact, from the moment I started to say "Ok, God, here is this horrible thing, this ugly, terminal illness, I surrender it to You. Please take it all and use it for something, transform it into something beautiful", I see that in that moment a little seed started to grow in my heart all along, and now I find a golden flower there.
I surrendered my "perfect" family. My plans. I surrendered my son's abilities, even his very life, into God's hands. Only then was my heart teachable. Only then could I see the beauty around me. Only then was I free to love my child with out resentment or reserve.
This doesn't mean I'll never feel angry about it, or resentful, or self-pitying. It REALLY doesn't mean it is all sun shine and roses along the way. This is a hard journey. I am subject to relapse.
But as long as I am saying "Here I am, Lord, your servant, Acceptance with Joy, ready to accept what you allow in my life, and believe you will transform it," as long as I am saying that, resentment can not get a foothold. And that, my friends, is freedom. Not that I may do what I want when I want. But that ugly things, like resentment, can not get hold of me or chain me down. I am free.
At the time, this idea surprised me. Just the thought that I might need break from Joel to help me cope with feelings of resentment. And I realized that it had, indeed, been a long time since I felt any resentment about the situation at all. Now this blog gets tricky. I don't want to sound "preachy" or like some sort of guru or something. Nothing harder for a smoker than someone who has just quit, right? I don't mean this blog that way at all. If you are struggling with resentment, I promise I don't judge you. I just want to share something beautiful God has done for me.
Of course, it is normal and natural to feel resentment any time our obligation to the people in our lives keeps us from doing things we really want to do. That feeling of being "trapped" in a situation, and giving up what we love because we are forced to do so.
And I have felt resentment about Joel. Though I don't think I ever felt it towards him. I guess I figured he really couldn't help it, so I directed any resentment toward the situation, or maybe even towards God. The one thing I really remember is way, way back, when Joel was only about 8 or 9 months old. Back when I thought I was looking ahead to a future where Steve and I were still caring for him as we turned 60. I can't believe it now, with everything that has happened since then. But with our initial diagnosis of IRD, we really thought that Joel would live to be 10 or even 20. I know of children that make it past 25.
And when I thought of those years... well, as I have already mentioned in other blogs...I guess you could say the thought didn't please me, to think that I would spend the rest of my life nursing a person who would only get more dependant and have more and more health problems. I didn't want that to be what I looked forward to retirement to do.
And at different times, with lack of sleep, I felt a bit of resentment. Why couldn't I at least get a decent nights sleep if everything else had to be so crummy? That sort of feeling.
I guess it would be possible to say that I don't feel resentment anymore because both of those "big" situations are over. It is clear that Joel is not going to be here in 10 or 20 years. And I get enough sleep, most of the time.
That would be accurate, but I'm not sure it would entirely explain it all. I suppose this should be a "no-brainer," but I think I know what happened to resentment, an enemy I do remember I feared at the start of this journey. I think the weapon that did ole resentment in was simply allowing God to grow thankfulness and gratitude.
I don't want to make people struggling with this feel badly about it. Heck, I know how hard some of this stuff is, and there is lots of stuff that I let control me, instead of mastering it. And at any moment resentment could rear its' ugly head for a rematch.
But really, resentment went out, not with a bang, but a whimper. It just got "thankfulnessed" away. My eyes were opened to see, as I have said before, that what I thought were walls, were just curtains, beyond which the horizon spread out before me. And I saw, really saw, how much I had. I can tell you, I feel BLESSED. I am grateful for family. I am grateful for friends. I am grateful for my food, shelter, clothing. I am grateful for my education and the experience that I've gone through. I'm grateful for all the services we have given to us: O/T, P/T, doctors, hospitals, respite, medications, equipment, counselling, tax breaks. And I am grateful for Joel. I can not say I am grateful for his PBD. But I can tell you I am grateful that God has NOT decided to heal him, but that God has decided to transform this experience into something very different from how it first appeared to me.
You can not feel gratitude and resentment at the same time. I'm happy to be rid of the resentment and keep the gratitude.
And then there is the part where I had to give up some things for Joel. Yes. I do have to give up some things for Joel. But then, I don't see that as entirely accurate, either. I had some plans for life. It was painful to have some of them stripped away. Some for just a season. Some likely for good. I won't say that it's not a painful or difficult process.
But the power over resentment started to grow the moment I said "Ok, God. You take this. I give it to You. I'm here, waiting for You to show me the way to go." Maybe this all sounds like gibberish to you. Maybe you are reading this and you don't even believe God exists, so I just sound nutso. Fair enough. But I have to point out that I am a grateful and resent-free nutso!!
It's kind of like when a child gets a hold of a fistful of coins. And then an adult comes along, and tells them, "I'll trade you those 5 pennies, two dimes, three quarters and a nickel, for this lovely red piece of paper with the queen on it." We, like small children, are not always able to recognize the true worth of what we are being given.
My fistful of coins was taken away by things bigger and stronger than me. I sat on the sidewalk and cried, real, bitter tears at the unfairness and pain of a life where things can get ripped out of your very grasp. The choice was to see that there were greater riches being held out to me and accept them, or to lie on the sidewalk in a funk or worse. An unwilling pupil will never learn anything. Only a teachable heart can be transformed.
My favorite work of fiction, of all time, is an allegory. In the story, the heroine is on a journey. It is a journey very similar to the one I find myself on right now. On this journey she crosses many obstacles, including a desert, where she finds a tiny golden flower. When she asks the flower it's name, it tells her that it is called "Acceptance with Joy." The little flower has accepted with joy the desert and the small drops of rain that fall on it, and now it has a beautiful flower.
And I see now, that all along this journey, God has been "tricking" me. For I see I come upon that word, "acceptance" once again. In fact, from the moment I started to say "Ok, God, here is this horrible thing, this ugly, terminal illness, I surrender it to You. Please take it all and use it for something, transform it into something beautiful", I see that in that moment a little seed started to grow in my heart all along, and now I find a golden flower there.
I surrendered my "perfect" family. My plans. I surrendered my son's abilities, even his very life, into God's hands. Only then was my heart teachable. Only then could I see the beauty around me. Only then was I free to love my child with out resentment or reserve.
This doesn't mean I'll never feel angry about it, or resentful, or self-pitying. It REALLY doesn't mean it is all sun shine and roses along the way. This is a hard journey. I am subject to relapse.
But as long as I am saying "Here I am, Lord, your servant, Acceptance with Joy, ready to accept what you allow in my life, and believe you will transform it," as long as I am saying that, resentment can not get a foothold. And that, my friends, is freedom. Not that I may do what I want when I want. But that ugly things, like resentment, can not get hold of me or chain me down. I am free.
Updat on Joel
Bout time I wrote in here, and now that it has been awhile, I think I best do an update before I go on to write other blogs about other things.
First of all: I had an AWESOME visit with my new found friend, Jolene! It was truly amazing and a huge blessing to add her to my growing list of friends. This is an ongoing answer to my prayers. When Steve and I first moved back here from up north, I learned that I was basically starting over, as most of my friends from before had moved on in one way or another. Then when Joel came along, it put a whole new spin on things. But through one thing and another, God has slowly been bringing some very special and terrific people into my life to love and support me. This is something that awes me, humbles me, and fills my heart with gratitude.
My in-laws were here for a week long visit. I blame this for my recent inattention to my blog. It was nice to see them, and to see them enjoying their grandchildren. I wish they could see them more, but it's a four hour flight away from us.
And as to Joel, the last week or two has not been quite as great. He has developed something similar to sties in his eyes, but not. They are called chalazions. They are blocked oil glands in the eyelid, unlike sties, they are not infected, just blocked. They look absolutely horrendous. There goes the photo shoots. It sort of bums me out, particularly as they can apparently take weeks to go away on their own.
Also, by asking my online support group, I learned that there are several other PBD kids who've had them. It's nice to know we are not alone, but it always makes it more complicated when what I thought was just a "fluke" turns out to perhaps be related to Joel's condition. Because that takes it to a whole new level and often means that resolving it is not as easy as for healthy kids. I am grateful that it is NOT something that requires hospitalization, but I am bummed out at another sign of the PBD popping out in such an ugly fashion. So I continue to monitor it.
And he has a hugely swollen gum where a tooth is pushing through. The other two teeth seem to be coming out on the other side with only moderate swelling. This other one seems like it is worse, and might be causing some discomfort. Joel has been a bit more irritable the last couple weeks. Also, I've not been able to keep him on his CPAP all night long. He keeps waking up half way through the night and I need to remove it. After a few days of this, he is more tired in the day time. I don't know if this is a sign that the water behind his ear drums has not resolved, or if it's the teething or what. But I'm hoping I can get him back on CPAP all night, every night, again soon.
The good news is, much to my amazement, Children's Wish Foundation is going to try their best to get us our jacuzzi tub! They will send someone over soon to check over the plumbing and other technical aspects to make sure that it is possible, but they are willing to do it! So excited about that! It would really be amazing to hop in the tub with Joel every night and just get him relaxed and clean. Whoooo hoooo!
Ok, that is the update for now. I'll write more as I am able.
First of all: I had an AWESOME visit with my new found friend, Jolene! It was truly amazing and a huge blessing to add her to my growing list of friends. This is an ongoing answer to my prayers. When Steve and I first moved back here from up north, I learned that I was basically starting over, as most of my friends from before had moved on in one way or another. Then when Joel came along, it put a whole new spin on things. But through one thing and another, God has slowly been bringing some very special and terrific people into my life to love and support me. This is something that awes me, humbles me, and fills my heart with gratitude.
My in-laws were here for a week long visit. I blame this for my recent inattention to my blog. It was nice to see them, and to see them enjoying their grandchildren. I wish they could see them more, but it's a four hour flight away from us.
And as to Joel, the last week or two has not been quite as great. He has developed something similar to sties in his eyes, but not. They are called chalazions. They are blocked oil glands in the eyelid, unlike sties, they are not infected, just blocked. They look absolutely horrendous. There goes the photo shoots. It sort of bums me out, particularly as they can apparently take weeks to go away on their own.
Also, by asking my online support group, I learned that there are several other PBD kids who've had them. It's nice to know we are not alone, but it always makes it more complicated when what I thought was just a "fluke" turns out to perhaps be related to Joel's condition. Because that takes it to a whole new level and often means that resolving it is not as easy as for healthy kids. I am grateful that it is NOT something that requires hospitalization, but I am bummed out at another sign of the PBD popping out in such an ugly fashion. So I continue to monitor it.
And he has a hugely swollen gum where a tooth is pushing through. The other two teeth seem to be coming out on the other side with only moderate swelling. This other one seems like it is worse, and might be causing some discomfort. Joel has been a bit more irritable the last couple weeks. Also, I've not been able to keep him on his CPAP all night long. He keeps waking up half way through the night and I need to remove it. After a few days of this, he is more tired in the day time. I don't know if this is a sign that the water behind his ear drums has not resolved, or if it's the teething or what. But I'm hoping I can get him back on CPAP all night, every night, again soon.
The good news is, much to my amazement, Children's Wish Foundation is going to try their best to get us our jacuzzi tub! They will send someone over soon to check over the plumbing and other technical aspects to make sure that it is possible, but they are willing to do it! So excited about that! It would really be amazing to hop in the tub with Joel every night and just get him relaxed and clean. Whoooo hoooo!
Ok, that is the update for now. I'll write more as I am able.
Tuesday, January 18, 2011
My Blog List
If you look to the left, you will see I added yet another blog to my blog list on the side bar.
I'm very happy and excited to tell you that in a round about way, I have finally connected to someone who lives in my area and is going through something very similar to me. Her two girls have a different illness, but it is also genetic metabolic condition, and it is also fatal. The girls' condition is so rare there are only 50 - 70 known cases in the world. (I did get that right, right Jolene?) I'm now really looking forward to meeting her in person later this week. It is so exciting, I feel like I'm about to meet my twin!
Her name is Jolene, and her girls are Ashley and Hope. If you are interested in taking a look at their story, then you can connect via the side bar. I really feel that this was a "God thing," that God, (through and thanks to a very nice palliative care nurse) worked to connect us together, and I am very grateful and excited to have this mutual support in the future.
And it has really made me think.... who else might be in this city and going through something all alone, wishing to connect to someone else? So maybe one of these days I'll manage to figure out a website or support group or something, not limited to PBD parents, but for all parents of children living with terminal illnesses. Because for some parents with the really rare illnesses, it must be very lonely and I don't think there is a support group out there right now that meets that need. I'm sure glad to finally be geographically close to another person who really knows so well what my life is like.
I'm very happy and excited to tell you that in a round about way, I have finally connected to someone who lives in my area and is going through something very similar to me. Her two girls have a different illness, but it is also genetic metabolic condition, and it is also fatal. The girls' condition is so rare there are only 50 - 70 known cases in the world. (I did get that right, right Jolene?) I'm now really looking forward to meeting her in person later this week. It is so exciting, I feel like I'm about to meet my twin!
Her name is Jolene, and her girls are Ashley and Hope. If you are interested in taking a look at their story, then you can connect via the side bar. I really feel that this was a "God thing," that God, (through and thanks to a very nice palliative care nurse) worked to connect us together, and I am very grateful and excited to have this mutual support in the future.
And it has really made me think.... who else might be in this city and going through something all alone, wishing to connect to someone else? So maybe one of these days I'll manage to figure out a website or support group or something, not limited to PBD parents, but for all parents of children living with terminal illnesses. Because for some parents with the really rare illnesses, it must be very lonely and I don't think there is a support group out there right now that meets that need. I'm sure glad to finally be geographically close to another person who really knows so well what my life is like.
Plot
We chose a funeral home last year. Tonight we finished the second of the "big" funeral tasks. We paid for a plot, signed a paper, and got an official deed for a very small piece of land.
I didn't even blink back tears. I'm afraid I spoke cheerfully with the nice gentleman who owns the cemetery. The only emotional sign it might have been stressful was that right after he left I had a sudden urge to completely eat the entire two aisles of snack food at the local 7/11. I settled for a couple cookies and some bread sticks.
Mostly it was just a HUGE relief. I know there might be those out there who feel it is morbid to buy a plot while Joel is living, and is even in stable condition. Some might really even think it is quite horrible.
I don't. Some parents lose their children suddenly, with out any warning. Then those people have to deal with all the grief and loss and adjustments and pain all at once, and still manage a lot of other practical details regarding last arrangements. I have had the additional pain of having to watch my boy go downhill, of knowing he'll never get better, only worse, of seeing him be sick. So I surely am going to take the opportunity granted to me to do some of the hard tasks in the quieter and happier moments of our lives. We've had enough sadness, I'm not going to make it harder out of a misplace sense of decorum.
And Steve and I are very happy with what we have arranged. You can make better choices and decisions if you have time to think it all over and really weigh all the options. So we did NOT decide to go with the very beautiful, park-like, restrictive place with the pushy sales lady. Instead, we opted for the small, out of the way, country-type cemetery with the kind owner and more freedom.
Which means there is no fountain, and most of the trees are still being planted. The driveway is not paved. It is SIMPLE. And I like it.
We have a headstone plot for Joel. Right beside his plot are the two flat-marker plots my parents purchased. And a tree will be planted in between them. We get our headstone plot, we get to have Joel beside my mom and dad, we will have both by a tree. We are allowed to plant flowers on the grave at this cemetery and we are allowed to put up some solar lights around the edges. And for a reasonably affordable price. We really couldn't see, at one point, that we'd be able to have all these things, we were expecting to have to give some wishes up. So we are very happy.
And relieved. It is such a relief. Funeral home, cemetery, now the only "big" thing left to plan and buy is the headstone. No rush. We'll take our time.
And if anyone is reading this who very kindly donated to the benefit concert on our behalf, thank you. This is how we have used a portion of the funds. We are grateful.
I didn't even blink back tears. I'm afraid I spoke cheerfully with the nice gentleman who owns the cemetery. The only emotional sign it might have been stressful was that right after he left I had a sudden urge to completely eat the entire two aisles of snack food at the local 7/11. I settled for a couple cookies and some bread sticks.
Mostly it was just a HUGE relief. I know there might be those out there who feel it is morbid to buy a plot while Joel is living, and is even in stable condition. Some might really even think it is quite horrible.
I don't. Some parents lose their children suddenly, with out any warning. Then those people have to deal with all the grief and loss and adjustments and pain all at once, and still manage a lot of other practical details regarding last arrangements. I have had the additional pain of having to watch my boy go downhill, of knowing he'll never get better, only worse, of seeing him be sick. So I surely am going to take the opportunity granted to me to do some of the hard tasks in the quieter and happier moments of our lives. We've had enough sadness, I'm not going to make it harder out of a misplace sense of decorum.
And Steve and I are very happy with what we have arranged. You can make better choices and decisions if you have time to think it all over and really weigh all the options. So we did NOT decide to go with the very beautiful, park-like, restrictive place with the pushy sales lady. Instead, we opted for the small, out of the way, country-type cemetery with the kind owner and more freedom.
Which means there is no fountain, and most of the trees are still being planted. The driveway is not paved. It is SIMPLE. And I like it.
We have a headstone plot for Joel. Right beside his plot are the two flat-marker plots my parents purchased. And a tree will be planted in between them. We get our headstone plot, we get to have Joel beside my mom and dad, we will have both by a tree. We are allowed to plant flowers on the grave at this cemetery and we are allowed to put up some solar lights around the edges. And for a reasonably affordable price. We really couldn't see, at one point, that we'd be able to have all these things, we were expecting to have to give some wishes up. So we are very happy.
And relieved. It is such a relief. Funeral home, cemetery, now the only "big" thing left to plan and buy is the headstone. No rush. We'll take our time.
And if anyone is reading this who very kindly donated to the benefit concert on our behalf, thank you. This is how we have used a portion of the funds. We are grateful.
Monday, January 17, 2011
Baby Talk
Most of the time, people don't really get a chance to hear me "baby talk" to Joel. I leave the worst of that for the times we are alone. Maybe I'm worried they will think I'm condescending to Joel. For sure I'd feel foolish if someone else really heard it.
It's very hard to tell how much of an understanding of vocabulary Joel has. Of course. I do get annoyed whenever the audiologist says she wants a sound booth test because the ABR doesn't show his developmental level in understanding sound. I'm pretty sure the sound booth test doesn't really show that either, it just gives the false impression that we know his developmental level.
All the more so, because Joel has days, and then he has DAYS. You just never know. I used to be so frustrated that every time I brought Joel in for an eye appointment, the doctor would shine his uber bright light straight into Joel's eyes, and NOTHING. Zero. Zip. Yet at home, I'd see Joel's eyes narrow against sunlight, and sometime he even seemed discomforted by it. Now, over time, I have come to see more and more visual response from Joel. At times, it even seems he has been staring at my face, but when I make eye contact, he looks away. And yes, according to my CNIB O/T, this can be a sign of vision. But it ALL comes and goes. EVERYTHING JOEL comes and goes. The babbling, the "seeing," the reactions to sounds, the playfulness, the alertness, all of it. You just never know.
So I dislike sound booth hearing tests, because I worry they are going to tell me that Joel can't understand what he is hearing properly, but I am pretty sure that he understands a lot more than you can see.
But the other side of it is that his vocabulary is naturally limited. Sure, I could have tried harder to expand it, touching objects to Joel and then telling him what they are. For a long time, I tried to learn baby signing and teach it to him. But as time went on, those efforts faded. Because Joel no longer seems able to reach out for objects on his own. And he mostly doesn't seem too interested in it either. I know this seems strange, it seems strange to me too, and much of it depends on his mood as well, but while he is very interested in people, he seems rather uninterested in anything else.
I just decided that if the word was one we'd actually USE, like: more, water, bath, up, down, mommy, daddy, Caeden, out, car, music, singing, sleepy, bed, etc. then I'd say the word to him and "teach" it to him, never mind the hand signs because now he can't even reach his hands to his mouth anymore. And never mind about tree, or ball, or feather.
Of course, you are supposed to talk to your child a lot to help them learn language. But I just find babbling on and on to Joel difficult and, well, that seems a bit ridiculous to me. I use "regular" talk when we are discussing the details of his life, like bath time. But what do I say to him when I'm holding him for an hour and we are just "'being" together?
So I "baby talk." I baby talk, because baby talk is sing-song-y. It's lilting, like a lullaby, and the language is not the language of trees, animals, everyday items or concepts like hot or cold. The language is the language of love. And the words are love words. They roll off the tongue like a melody.
And the vocabulary is made up of names. Almost completely names. With "love" and "mommy" and a few others scattered in. And here they are, in all their silly splendor. Joel is: Joey, Jo-Jo, schnook-ums, peanut, cuddle-muffin, sweetie pie, duckie, pookie, boo-boo and bo-bo, smoochie, lovabee, baby duck, cookie, coochie-coo, schnook-a -bee, cuddle-bum... you get the idea. Not very dignified, I'm afraid. But Joel doesn't seem to mind. It's all saying the same thing. It's all just "I love you," but all the variations of vowels and consonants just make it like poetry. That's really what it is. Baby talk is "I love you" said in baby poetry. And no matter what an audiologist would say, I KNOW Joel understands it perfectly.
It's very hard to tell how much of an understanding of vocabulary Joel has. Of course. I do get annoyed whenever the audiologist says she wants a sound booth test because the ABR doesn't show his developmental level in understanding sound. I'm pretty sure the sound booth test doesn't really show that either, it just gives the false impression that we know his developmental level.
All the more so, because Joel has days, and then he has DAYS. You just never know. I used to be so frustrated that every time I brought Joel in for an eye appointment, the doctor would shine his uber bright light straight into Joel's eyes, and NOTHING. Zero. Zip. Yet at home, I'd see Joel's eyes narrow against sunlight, and sometime he even seemed discomforted by it. Now, over time, I have come to see more and more visual response from Joel. At times, it even seems he has been staring at my face, but when I make eye contact, he looks away. And yes, according to my CNIB O/T, this can be a sign of vision. But it ALL comes and goes. EVERYTHING JOEL comes and goes. The babbling, the "seeing," the reactions to sounds, the playfulness, the alertness, all of it. You just never know.
So I dislike sound booth hearing tests, because I worry they are going to tell me that Joel can't understand what he is hearing properly, but I am pretty sure that he understands a lot more than you can see.
But the other side of it is that his vocabulary is naturally limited. Sure, I could have tried harder to expand it, touching objects to Joel and then telling him what they are. For a long time, I tried to learn baby signing and teach it to him. But as time went on, those efforts faded. Because Joel no longer seems able to reach out for objects on his own. And he mostly doesn't seem too interested in it either. I know this seems strange, it seems strange to me too, and much of it depends on his mood as well, but while he is very interested in people, he seems rather uninterested in anything else.
I just decided that if the word was one we'd actually USE, like: more, water, bath, up, down, mommy, daddy, Caeden, out, car, music, singing, sleepy, bed, etc. then I'd say the word to him and "teach" it to him, never mind the hand signs because now he can't even reach his hands to his mouth anymore. And never mind about tree, or ball, or feather.
Of course, you are supposed to talk to your child a lot to help them learn language. But I just find babbling on and on to Joel difficult and, well, that seems a bit ridiculous to me. I use "regular" talk when we are discussing the details of his life, like bath time. But what do I say to him when I'm holding him for an hour and we are just "'being" together?
So I "baby talk." I baby talk, because baby talk is sing-song-y. It's lilting, like a lullaby, and the language is not the language of trees, animals, everyday items or concepts like hot or cold. The language is the language of love. And the words are love words. They roll off the tongue like a melody.
And the vocabulary is made up of names. Almost completely names. With "love" and "mommy" and a few others scattered in. And here they are, in all their silly splendor. Joel is: Joey, Jo-Jo, schnook-ums, peanut, cuddle-muffin, sweetie pie, duckie, pookie, boo-boo and bo-bo, smoochie, lovabee, baby duck, cookie, coochie-coo, schnook-a -bee, cuddle-bum... you get the idea. Not very dignified, I'm afraid. But Joel doesn't seem to mind. It's all saying the same thing. It's all just "I love you," but all the variations of vowels and consonants just make it like poetry. That's really what it is. Baby talk is "I love you" said in baby poetry. And no matter what an audiologist would say, I KNOW Joel understands it perfectly.
Saturday, January 15, 2011
The Undeserving Poor...um, make that Middle Class
Many times on this journey with Joel, I have been surprised and touched by the generosity and kindness of other people. Particularly when I haven't really done anything to deserve it.
And again, yesterday, it happened to me, and it made me think of a line from a favorite movie "My Fair Lady." Eliza Doolittle's father, who is by all accounts a scoundrel and a drunkard and all the rest, makes a plea for some money from Eliza's "experimenters".. um I mean "benefactors." He makes the contention that he really needs their charity as he is a member of the "undeserving poor." After all, he reasons, there are lots of organizations to help the deserving poor, those who are working hard all day long, straight and sober and upright citizens. Not so in his case. His needs for food, shelter, or "a bit of liquid refreshment" are just as great, but no one will give him any money, because he is undeserving.
And while I am not an alcoholic and neglectful parent, I really had to feel myself in this category, though not poor at all. Even worse, I'm in the "undeserving middle class." By which I mean that I have never done any work in a charity or for a "cause." I've never been nominated for "Teacher of the Year." I can think of a lot of people who are also dealing with a child's terminal illness who somehow manage a cleaner house that I do, a fuller schedule, working full time, and even doing work fundraising or with an organization that benefits other people. They do a lot more with what they have, and sometimes I want to say "Stop it, you are making me look bad!" Ha ha ha, just kidding, but seriously, if rated on merit, there are plenty of people who really deserve gifts, help, encouragement, support, whatever, much more than I do. What I do manage is often more in the "bare minimum" category.
Yet many people have been inexplicably gracious to me. Overwhelmingly generous. Unnecessarily kind. There are a few explanations for that. 1. They might think I'm much more "deserving" than I really am. I'm really afraid this is sometimes the case. Oops, now if they read this blog they know the truth! 2. A few people might give out of a superstitious belief that the "good karma" will keep them from suffering a similar "fate." 3. People are made in God's image, and are therefore capable of reflecting His grace and kindness, to those who are undeserving.
And every time I accept something someone has done for me or given to me, I'm reminded again of God's grace. Defined as "unmerited favour." And I'm overwhelmed by gratitude.
Just this week it happened again. For the past few weeks, I had been thinking about how much I'd like to try a Wii Fit out, because I know I'd never stick to a program that was a "regular" type work out (hate those). My age old method for staying in shape most of my life has been taking regular walks, but since Joel came a long, it's really difficult, especially in cold weather. And I'm just not in the shape I should be. So I was thinking about a Wii Fit, and that it might be something I'd actually do.
But then I was also thinking about how Steve's contract is over on Feb. 4th. And how we haven't heard of any job opportunities or openings. So it looks like Steve might very well be subbing for awhile, though last year God surprised him with a job at the eleventh hour. In any case, spending at least a hundred smackers for something unnecessary in a time we might need to tighten our belts seemed pretty irresponsible.
So I left it at that. I didn't even mention it to Steve (because he has a hard time saying no or denying me anything!) or anyone else. I certainly didn't pray and ask for one! And yet this week, a very kind friend told me their family had an extra one and wondered if I'd accept it as a gift.
People have already given very generously to us through a fund raiser to raise money for funeral expenses, and we are very grateful not to have to worry about that at a time when Steve's salary might likely be cut in half. It is a relief to buy the plot and not owe anything for it. We are very grateful.
And certainly I'm not deserving of such acts of kindness and generosity. Just as I've never done anything to deserve God's forgiveness and yet, it is given anyway. And out of the gratitude of my heart (and not any thinking that I can "pay" for it) I hope one day I will be able to give to other people in the same way.
And again, yesterday, it happened to me, and it made me think of a line from a favorite movie "My Fair Lady." Eliza Doolittle's father, who is by all accounts a scoundrel and a drunkard and all the rest, makes a plea for some money from Eliza's "experimenters".. um I mean "benefactors." He makes the contention that he really needs their charity as he is a member of the "undeserving poor." After all, he reasons, there are lots of organizations to help the deserving poor, those who are working hard all day long, straight and sober and upright citizens. Not so in his case. His needs for food, shelter, or "a bit of liquid refreshment" are just as great, but no one will give him any money, because he is undeserving.
And while I am not an alcoholic and neglectful parent, I really had to feel myself in this category, though not poor at all. Even worse, I'm in the "undeserving middle class." By which I mean that I have never done any work in a charity or for a "cause." I've never been nominated for "Teacher of the Year." I can think of a lot of people who are also dealing with a child's terminal illness who somehow manage a cleaner house that I do, a fuller schedule, working full time, and even doing work fundraising or with an organization that benefits other people. They do a lot more with what they have, and sometimes I want to say "Stop it, you are making me look bad!" Ha ha ha, just kidding, but seriously, if rated on merit, there are plenty of people who really deserve gifts, help, encouragement, support, whatever, much more than I do. What I do manage is often more in the "bare minimum" category.
Yet many people have been inexplicably gracious to me. Overwhelmingly generous. Unnecessarily kind. There are a few explanations for that. 1. They might think I'm much more "deserving" than I really am. I'm really afraid this is sometimes the case. Oops, now if they read this blog they know the truth! 2. A few people might give out of a superstitious belief that the "good karma" will keep them from suffering a similar "fate." 3. People are made in God's image, and are therefore capable of reflecting His grace and kindness, to those who are undeserving.
And every time I accept something someone has done for me or given to me, I'm reminded again of God's grace. Defined as "unmerited favour." And I'm overwhelmed by gratitude.
Just this week it happened again. For the past few weeks, I had been thinking about how much I'd like to try a Wii Fit out, because I know I'd never stick to a program that was a "regular" type work out (hate those). My age old method for staying in shape most of my life has been taking regular walks, but since Joel came a long, it's really difficult, especially in cold weather. And I'm just not in the shape I should be. So I was thinking about a Wii Fit, and that it might be something I'd actually do.
But then I was also thinking about how Steve's contract is over on Feb. 4th. And how we haven't heard of any job opportunities or openings. So it looks like Steve might very well be subbing for awhile, though last year God surprised him with a job at the eleventh hour. In any case, spending at least a hundred smackers for something unnecessary in a time we might need to tighten our belts seemed pretty irresponsible.
So I left it at that. I didn't even mention it to Steve (because he has a hard time saying no or denying me anything!) or anyone else. I certainly didn't pray and ask for one! And yet this week, a very kind friend told me their family had an extra one and wondered if I'd accept it as a gift.
People have already given very generously to us through a fund raiser to raise money for funeral expenses, and we are very grateful not to have to worry about that at a time when Steve's salary might likely be cut in half. It is a relief to buy the plot and not owe anything for it. We are very grateful.
And certainly I'm not deserving of such acts of kindness and generosity. Just as I've never done anything to deserve God's forgiveness and yet, it is given anyway. And out of the gratitude of my heart (and not any thinking that I can "pay" for it) I hope one day I will be able to give to other people in the same way.
Friday, January 14, 2011
Strangers
This Christmas season, Steve and I managed to bring Joel with us to see the church Christmas program and watch his brother perform in it. Later on, a friend asked me if it was hard, if I had felt like people were "watching" us, or Joel.
An interesting question... Things have sure changed over time regarding how I feel or think about the whole thing...
Right after Joel was diagnosed, need I say it was a very emotional time? For awhile after that, in fact. It was difficult to be anywhere but home with Joel. I hate crying in front of other people, and the less I know you, the less I like it. Yet I often cried at the drop of a hat, and many common situations were like a mined field where I knew chances were good I'd not get across with out having the lid blown off my tears. I even wrote a blog, back in the first months of my blogging, called "Raw" which was about going to appointments for Joel.
Being out with Joel was difficult. I never knew if people could "tell" that there was something wrong with Joel or not. Answering a simple question, like "How old is he?" put me in a conversational game of Jenga, cautiously pulling out pieces and hoping the tower would not collapse. I would answer it with "Six months" and avoid their eyes, unsure if I would see any questions there, like "Hmmm, but he's not holding his head up?" or "Why are his eyes jiggly?" I knew if I saw those thoughts, it would be my undoing and I was too afraid to look people in the eye. And the well meant comments they might may if they saw nothing out of the ordinary were just as bad. Like "He'll be walking before you know it!" Or "Treasure this time, they grow up so fast."
This was no ones fault. How could anyone imagine a random stranger with a baby would be facing what we were facing? Usually children are the best and safest conversation starter, right up there with the weather. This only made me more afraid I'd start bawling unexpectedly and really traumatize them, though that does seem like an ironic thought.
And so many events that REALLY were hard. Baby showers, children's birthday parties, pregnant friends, shopping in the baby section of the store, seeing children playing the park, the nursery room at church. Whew.
I remember a time when I was on the bus with Joel, coming home from an appointment. This must have been sometime between his 8th and 10th month of age, because he had his naso-gastric tube in. A well meaning stranger asked me what had happened? Why did he have a bandage on his face, were we in a car accident? I know longer remember what I did or said, I just remember that I had this worry or anxiety when ever I was out with him, that someone would ask me something about Joel. Not that they would "find out" that he was not "normal" or "healthy" but that I would not be able to handle it. It was not that I was embarrassed of Joel, but that I was embarrassed of myself, looking like a fool while I sobbed out of control and made everyone else uncomfortable. It made ME very uncomfortable.
The only way out was through, though. So I coped the only way I could, by forcing myself to look people in the eye and answer directly. While I try not to embarrass complete and well-meaning strangers with too much information, I don't hold back if I feel someone is "too nosey" I just get really matter of fact and tell em that my son is terminally ill. Then the worst is out there, and there is nothing left for me to worry about disclosing.
And the more I made myself go out and face it all, the less likely I was to cry. It was really hard at first. But if you say "My son is developmentally delayed and is terminally ill," enough times, eventually you can say it with clear eyes. Most of the time. I used to imagine how my tears would disconcert people. Now I wonder if my clear eyes and even voice do the same thing.
In any case, going through it and facing it were helpful. I don't think I'd be at this stage now if I hadn't have done that, though I confess that being out with Joel when he is irritable is still quite difficult. I hate having other people see him inconsolable and me feeling like they want me to DO SOMETHING and I can't. Because I really, really want to do something too. But I can't.
Most of the time, what I find awkward now is that people sometimes assume stuff, and that makes it uncomfortable for me. Now I don't wonder if people know that Joel is not your regular everyday sort of toddler. No way he appears like that. And I'm ok with that. It's just that sometimes they assume they know what has caused his condition and that is as awkward having your undies up your butt driving you nuts but you can't really pick them out in public. Pretty much.
So, at the Christmas concert a very nice and friendly lady came up to me and started chatting. She told me that her job at one time had been working with children "like him." Now, I don't mind the terminology she used. It was just very uncomfortable to me. What exactly did she mean? She worked with non-verbal children? She worked with children who didn't walk? She worked with developmentally delayed kids, or kids who had a GT?? And as I didn't know if someone at church had told her about Joel's condition, now I didn't know if she was aware that he was terminally ill or not.
So when she asked me about Joel's physio, I really was tongue-tied for a moment. What do I say about that? Because we discontinued all skill aquisition physio and now it is just comfort care physio. I finally sort of figured out that I THINK she had worked with kids with cerebral palsy (though still not sure) and that she really had no idea about Joel at all, which, if you don't know, he could easily pass for a child with CP.
These sorts of interactions I do find uncomfortable, though as I said, if someone seems too "in your face" with me, I just give the bluntness right back to them and let them decide if they are uncomfortable or feel bad or not. It's the people who are obviously trying to friendly and supportive and nice that are the worst. I don't want them to feel bad for trying, even if they sort of blunder into things with their assumptions. Of course, they also must feel very rude just asking "What's wrong with him?" And then there are those poor people who don't ask any questions or SAY any assumptions but come up to him and talk and smile and don't realize he is blind. Sometimes I tell em, "He can't actually see you, but he loves your friendly voice" and sometimes, if I think it's really not apparent to them, I just let them enjoy it and walk away.
I feel bad writing all this out for you. Because I've not really given you any clear direction on how to "handle" it if you ever happen to be that stranger.... I don't really know myself. I only know how to handle it when you are the one sitting there with Joel. But maybe I can say that you should see if the mom looks you in the eye as an indication of if she wants to chat or not. And then ask "What is his/her name?" Say "They sure are cute!" And then chat about other things. If they really want to talk about their child, they will tell you about them right off the bat. And if they don't, then maybe the weather and fall fashions and royal weddings are good enough topics of conversation. That's all I got for you, and I don't know if other parents would agree or not.
I can tell you that I can recognize a good heart, and I can promise you that I don't hold any awkwardness against someone. And really, with every other thing that comes with Joel's PBD, it's a small thing. This blog is less about giving you advice, then about opening a window to let you see what happens in my heart and hope that knowledge might somehow be of use to you one day.
An interesting question... Things have sure changed over time regarding how I feel or think about the whole thing...
Right after Joel was diagnosed, need I say it was a very emotional time? For awhile after that, in fact. It was difficult to be anywhere but home with Joel. I hate crying in front of other people, and the less I know you, the less I like it. Yet I often cried at the drop of a hat, and many common situations were like a mined field where I knew chances were good I'd not get across with out having the lid blown off my tears. I even wrote a blog, back in the first months of my blogging, called "Raw" which was about going to appointments for Joel.
Being out with Joel was difficult. I never knew if people could "tell" that there was something wrong with Joel or not. Answering a simple question, like "How old is he?" put me in a conversational game of Jenga, cautiously pulling out pieces and hoping the tower would not collapse. I would answer it with "Six months" and avoid their eyes, unsure if I would see any questions there, like "Hmmm, but he's not holding his head up?" or "Why are his eyes jiggly?" I knew if I saw those thoughts, it would be my undoing and I was too afraid to look people in the eye. And the well meant comments they might may if they saw nothing out of the ordinary were just as bad. Like "He'll be walking before you know it!" Or "Treasure this time, they grow up so fast."
This was no ones fault. How could anyone imagine a random stranger with a baby would be facing what we were facing? Usually children are the best and safest conversation starter, right up there with the weather. This only made me more afraid I'd start bawling unexpectedly and really traumatize them, though that does seem like an ironic thought.
And so many events that REALLY were hard. Baby showers, children's birthday parties, pregnant friends, shopping in the baby section of the store, seeing children playing the park, the nursery room at church. Whew.
I remember a time when I was on the bus with Joel, coming home from an appointment. This must have been sometime between his 8th and 10th month of age, because he had his naso-gastric tube in. A well meaning stranger asked me what had happened? Why did he have a bandage on his face, were we in a car accident? I know longer remember what I did or said, I just remember that I had this worry or anxiety when ever I was out with him, that someone would ask me something about Joel. Not that they would "find out" that he was not "normal" or "healthy" but that I would not be able to handle it. It was not that I was embarrassed of Joel, but that I was embarrassed of myself, looking like a fool while I sobbed out of control and made everyone else uncomfortable. It made ME very uncomfortable.
The only way out was through, though. So I coped the only way I could, by forcing myself to look people in the eye and answer directly. While I try not to embarrass complete and well-meaning strangers with too much information, I don't hold back if I feel someone is "too nosey" I just get really matter of fact and tell em that my son is terminally ill. Then the worst is out there, and there is nothing left for me to worry about disclosing.
And the more I made myself go out and face it all, the less likely I was to cry. It was really hard at first. But if you say "My son is developmentally delayed and is terminally ill," enough times, eventually you can say it with clear eyes. Most of the time. I used to imagine how my tears would disconcert people. Now I wonder if my clear eyes and even voice do the same thing.
In any case, going through it and facing it were helpful. I don't think I'd be at this stage now if I hadn't have done that, though I confess that being out with Joel when he is irritable is still quite difficult. I hate having other people see him inconsolable and me feeling like they want me to DO SOMETHING and I can't. Because I really, really want to do something too. But I can't.
Most of the time, what I find awkward now is that people sometimes assume stuff, and that makes it uncomfortable for me. Now I don't wonder if people know that Joel is not your regular everyday sort of toddler. No way he appears like that. And I'm ok with that. It's just that sometimes they assume they know what has caused his condition and that is as awkward having your undies up your butt driving you nuts but you can't really pick them out in public. Pretty much.
So, at the Christmas concert a very nice and friendly lady came up to me and started chatting. She told me that her job at one time had been working with children "like him." Now, I don't mind the terminology she used. It was just very uncomfortable to me. What exactly did she mean? She worked with non-verbal children? She worked with children who didn't walk? She worked with developmentally delayed kids, or kids who had a GT?? And as I didn't know if someone at church had told her about Joel's condition, now I didn't know if she was aware that he was terminally ill or not.
So when she asked me about Joel's physio, I really was tongue-tied for a moment. What do I say about that? Because we discontinued all skill aquisition physio and now it is just comfort care physio. I finally sort of figured out that I THINK she had worked with kids with cerebral palsy (though still not sure) and that she really had no idea about Joel at all, which, if you don't know, he could easily pass for a child with CP.
These sorts of interactions I do find uncomfortable, though as I said, if someone seems too "in your face" with me, I just give the bluntness right back to them and let them decide if they are uncomfortable or feel bad or not. It's the people who are obviously trying to friendly and supportive and nice that are the worst. I don't want them to feel bad for trying, even if they sort of blunder into things with their assumptions. Of course, they also must feel very rude just asking "What's wrong with him?" And then there are those poor people who don't ask any questions or SAY any assumptions but come up to him and talk and smile and don't realize he is blind. Sometimes I tell em, "He can't actually see you, but he loves your friendly voice" and sometimes, if I think it's really not apparent to them, I just let them enjoy it and walk away.
I feel bad writing all this out for you. Because I've not really given you any clear direction on how to "handle" it if you ever happen to be that stranger.... I don't really know myself. I only know how to handle it when you are the one sitting there with Joel. But maybe I can say that you should see if the mom looks you in the eye as an indication of if she wants to chat or not. And then ask "What is his/her name?" Say "They sure are cute!" And then chat about other things. If they really want to talk about their child, they will tell you about them right off the bat. And if they don't, then maybe the weather and fall fashions and royal weddings are good enough topics of conversation. That's all I got for you, and I don't know if other parents would agree or not.
I can tell you that I can recognize a good heart, and I can promise you that I don't hold any awkwardness against someone. And really, with every other thing that comes with Joel's PBD, it's a small thing. This blog is less about giving you advice, then about opening a window to let you see what happens in my heart and hope that knowledge might somehow be of use to you one day.
Thursday, January 13, 2011
Wish
Just in case anyone thought I'd dropped off the face of the earth, I've not. I'm still here, and we are still doing fine. Joel has been trucking along just peachy. There have been a few times where I thought we were headed for trouble, but each time it turned out to be nothing and we remain out of hospital. Amazing to me. Last winter we also stayed out of hospital, but I remember a lot more infections, colds, flus and so on. This winter we have had surprisingly few of those, the most serious being a slightly snuffly nose. This blows me away. In fact, he had such a good day a while back that it made me think of a term my English friends use: lush. Yup, he was LUSH.
And so, now that Joel is about two and a half, I decided to check if the Children's Wish Foundation would consider making an exception for Joel, as they normally only work with children three and up. Oh, let me say, I didn't get this going on my own, I had some wonderful help from our wonderful palliative care nurse.
And yes, we are asking for a jacuzzi tub, one like we had in the hotel, a two person bath tub with jets and a heater. Just terrific for Joel on so many levels: 1. a COMFY way to take a bath and get really nice and clean. 2. something "fun" to DO with mom or dad. 3. something STIMULATING for him, as it is so hard to find interesting and stimulating things for him these days. 4. Something soothing and relaxing for his muscles and joints, taking all pressure and strain off his body for awhile.
I don't know if this wish will be possible, in fact I feel a bit guilty as it's a more pricey wish we are asking for, but it is the one thing I can think of that Joel would really enjoy and get the most out of. I'm not sure if a two person jacuzzi bath can be brought through our back door and into the basement in one piece. I'm not sure if the plumbing in the basement will work easily with putting in a tub, and of course, they don't do structural changes to the house.
And I don't know how long it will take, or if Joel will remain in good health long enough to really enjoy it, though it's certainly possible or I wouldn't even bother asking.
Despite all of this, I'm glad I asked about it. It's nice to have something pleasant to think about and look forward to. It's nice to have something to "dream about" when it come to Joel's future, because we haven't had that for a long, long time.
So a big thank you to all those who support and donate to the Children's Wish Foundation. Even if a jacuzzi doesn't work out, thank you! Your work and/or donations are much appreciated.
And so, now that Joel is about two and a half, I decided to check if the Children's Wish Foundation would consider making an exception for Joel, as they normally only work with children three and up. Oh, let me say, I didn't get this going on my own, I had some wonderful help from our wonderful palliative care nurse.
And yes, we are asking for a jacuzzi tub, one like we had in the hotel, a two person bath tub with jets and a heater. Just terrific for Joel on so many levels: 1. a COMFY way to take a bath and get really nice and clean. 2. something "fun" to DO with mom or dad. 3. something STIMULATING for him, as it is so hard to find interesting and stimulating things for him these days. 4. Something soothing and relaxing for his muscles and joints, taking all pressure and strain off his body for awhile.
I don't know if this wish will be possible, in fact I feel a bit guilty as it's a more pricey wish we are asking for, but it is the one thing I can think of that Joel would really enjoy and get the most out of. I'm not sure if a two person jacuzzi bath can be brought through our back door and into the basement in one piece. I'm not sure if the plumbing in the basement will work easily with putting in a tub, and of course, they don't do structural changes to the house.
And I don't know how long it will take, or if Joel will remain in good health long enough to really enjoy it, though it's certainly possible or I wouldn't even bother asking.
Despite all of this, I'm glad I asked about it. It's nice to have something pleasant to think about and look forward to. It's nice to have something to "dream about" when it come to Joel's future, because we haven't had that for a long, long time.
So a big thank you to all those who support and donate to the Children's Wish Foundation. Even if a jacuzzi doesn't work out, thank you! Your work and/or donations are much appreciated.
Sunday, January 9, 2011
Just Curtains
A long time ago, back close to the beginning of this story, I wrote a blog about how I had plans and how they all were suddenly changed by Joel. I could go back and check the details, but I'm here now in the middle of this, and anyway, I'm feeling too lazy to bother tracking down direct quotes.
I can remember how I felt back then anyway, regardless of what I wrote or didn't write. And that was that I had entered a sort of "holding pattern." I was NOT cleared for take off. Skies were overcast, visibility was nil, and the destination had been obliterated by a bomb anyway.
Before Joel, I had planned to go back to volunteer work with youth once the boys were past those early years. Maybe substitute teach a few days. I would get back in shape by going for walks in the evening. I would be a listening ear, I would create a welcoming home for other people. I pictured pulling my boys in a wagon to the park, to get ice cream, to the library. The world was full of possibilities. Places to be and things to do. Ways to be useful. Ways to be helpful.
After Joel, at times I felt that my whole life might be completely swallowed up by the "world" of PBD's. It seemed to fill my whole horizon. My son was ill. Then my son started to decline. Appointments. Hospital. Tears. Round and round. There was nothing ahead but a long period of declining, until it all ended with his death. I had entered a new land where the air was often full of ashes drifting down like smokey snowflakes and the air had a bitter tang.
Well, that is saying it all pretty strongly. Yes, there were still happy moments, even then. Even in this wilderness, there were still springs where bushes might grow, and occasionally even a flower.
What I am really trying to convey is the feeling I had about where I was at in life. I felt crippled. I felt like I had taken a bullet to the chest, and it was lodged there. I felt I was dragging myself forward by my fingernails. I felt like I held other people back and brought them down, like I always needed another shoulder to lean on as I limped forward. I felt trapped. I felt a glass cage had been lowered over me where others could watch my slow suffocation.
But I don't feel that way any more. I haven't felt that way for a long time. And I wanted to let you know. My life is not on hold. Joel has not put my life on hold.
Joel's illness was not a door into a windowless room that slammed shut behind me once I entered. I'm not sure how to explain how the horizon opened up all around me. How there are things to do and purpose to find, even while you are sitting quietly and holding your child.
A lot of this has to do with God's work in my heart and in my life. To seeing his hand raise the curtains I mistook for walls. To hearing His voice speak purpose to me.
I'm still waiting for some of those things that I can't do right now. But right now there are things that I can do, that I will no longer be able to do in the future. And I'm glad I got this chance to do those things.
And here is a song, that sings in my heart, you might have heard it, sung by John Waller.
I'm waiting, I'm waiting on You Lord
And I am hopeful, I'm waiting on You Lord
Though it is painful, but patiently I will wait
And I will move ahead bold and confident taking every step in obedience
While I'm waiting, I will serve You
While I'm waiting, I will worship
While I'm waiting, I will not faint
I'll be running the race even while I wait
I'm waiting, I'm waiting on You Lord
And I am peaceful....
Yes, I am peaceful. I am peaceful while I wait. But I'm not in a waiting room, reading an old magazine to stave off the boredom, the worry and the stress while the seconds slowly tick by. Believe me, I've had a lot of real life experience in doing this, and I can tell you that this feels nothing like that.
Instead, my original journey took a detour. The land was strange and frightening and there was and is lots of sadness. For a time I stood motionless in that land, too shocked and horrified to move. I was paralyzed. But I heard the voice of my God through the mist. And I can see there is a path here to follow which will take me to the other side. Yes, it is a difficult journey. Yes, the stones cut my feet, and at times I must climb using both roughened hands and feeling the weakness of my being. But there are discoveries to make. There are things to do, oh yes, there are things to do, and purposes to fulfill. Sometimes I even run down the path boldly. And sometimes the mist clears and even in this somber land, the view is beautiful. Because my God is here with me.
I can remember how I felt back then anyway, regardless of what I wrote or didn't write. And that was that I had entered a sort of "holding pattern." I was NOT cleared for take off. Skies were overcast, visibility was nil, and the destination had been obliterated by a bomb anyway.
Before Joel, I had planned to go back to volunteer work with youth once the boys were past those early years. Maybe substitute teach a few days. I would get back in shape by going for walks in the evening. I would be a listening ear, I would create a welcoming home for other people. I pictured pulling my boys in a wagon to the park, to get ice cream, to the library. The world was full of possibilities. Places to be and things to do. Ways to be useful. Ways to be helpful.
After Joel, at times I felt that my whole life might be completely swallowed up by the "world" of PBD's. It seemed to fill my whole horizon. My son was ill. Then my son started to decline. Appointments. Hospital. Tears. Round and round. There was nothing ahead but a long period of declining, until it all ended with his death. I had entered a new land where the air was often full of ashes drifting down like smokey snowflakes and the air had a bitter tang.
Well, that is saying it all pretty strongly. Yes, there were still happy moments, even then. Even in this wilderness, there were still springs where bushes might grow, and occasionally even a flower.
What I am really trying to convey is the feeling I had about where I was at in life. I felt crippled. I felt like I had taken a bullet to the chest, and it was lodged there. I felt I was dragging myself forward by my fingernails. I felt like I held other people back and brought them down, like I always needed another shoulder to lean on as I limped forward. I felt trapped. I felt a glass cage had been lowered over me where others could watch my slow suffocation.
But I don't feel that way any more. I haven't felt that way for a long time. And I wanted to let you know. My life is not on hold. Joel has not put my life on hold.
Joel's illness was not a door into a windowless room that slammed shut behind me once I entered. I'm not sure how to explain how the horizon opened up all around me. How there are things to do and purpose to find, even while you are sitting quietly and holding your child.
A lot of this has to do with God's work in my heart and in my life. To seeing his hand raise the curtains I mistook for walls. To hearing His voice speak purpose to me.
I'm still waiting for some of those things that I can't do right now. But right now there are things that I can do, that I will no longer be able to do in the future. And I'm glad I got this chance to do those things.
And here is a song, that sings in my heart, you might have heard it, sung by John Waller.
I'm waiting, I'm waiting on You Lord
And I am hopeful, I'm waiting on You Lord
Though it is painful, but patiently I will wait
And I will move ahead bold and confident taking every step in obedience
While I'm waiting, I will serve You
While I'm waiting, I will worship
While I'm waiting, I will not faint
I'll be running the race even while I wait
I'm waiting, I'm waiting on You Lord
And I am peaceful....
Yes, I am peaceful. I am peaceful while I wait. But I'm not in a waiting room, reading an old magazine to stave off the boredom, the worry and the stress while the seconds slowly tick by. Believe me, I've had a lot of real life experience in doing this, and I can tell you that this feels nothing like that.
Instead, my original journey took a detour. The land was strange and frightening and there was and is lots of sadness. For a time I stood motionless in that land, too shocked and horrified to move. I was paralyzed. But I heard the voice of my God through the mist. And I can see there is a path here to follow which will take me to the other side. Yes, it is a difficult journey. Yes, the stones cut my feet, and at times I must climb using both roughened hands and feeling the weakness of my being. But there are discoveries to make. There are things to do, oh yes, there are things to do, and purposes to fulfill. Sometimes I even run down the path boldly. And sometimes the mist clears and even in this somber land, the view is beautiful. Because my God is here with me.
Wednesday, January 5, 2011
Feeling Bad About Feeling Better.
The problem when I don't get to write for awhile is that my head is full of too many thoughts that spill out in all directions, until I don't know where to start.
So hmmm.....first of all, I guess, is that we had a terrific Christmas and holiday season. It was great, being together was great and I even felt pretty great for most of it.
Which makes me feel guilty, because so many people I know have had horrible holidays. I can't name them, to protect their privacy, but I know four people who really had a difficult holiday season, and many others whom I'm not as close to, but I suspect the holidays were also fraught with pain or sadness.
And I feel badly that we had such a good Christmas when so many had such a struggle. Even though, of course, my own sad and difficult Christmas will be coming up eventually.
So it was hard to talk to them and answer when they asked how my Christmas was.
And then, feeling so good and happy at the holiday season... well, I guess I can't win...
Because I felt quite good. And that was even though I have really been feeling that Joel is not going to be here next year. And I was thinking about how I seem to have this gift for being happy with what I have. Or being able to adjust my expectations to my circumstances....? and then be contented with them. I'm not sure how to explain it. But through life I have been able to be happy in many different circumstances...
And that, put together with my current enjoyment of the holidays, made me feel bad. Yeah, I hear you. How can someone who can feel bad about so much stuff be delusional enough to think they have any ability to be happy or content. Well, I do. And I don't feel badly all the time. I just put it down here when I do.
In any case, I felt bad. Want to know how truly ridiculous it gets? I felt bad, and even worried, because I was afraid that after Joel died, I might not be sad or unhappy enough. Yeah. See? See what I mean? But there you have it. Complete transparency to my thought process.
I thought, maybe I won't be sad enough. Or depressed enough. Maybe I'll spring back and start enjoying life really quickly. Maybe I will miss him, but not enough to devastate me.
And that made me feel quite bad. I thought, maybe I just don't really love Joel enough. Maybe I don't love my boy as much as other mom's do. Maybe I'm even more selfish that I thought. Maybe my love is shallow and my grief is shallow too.
Yeah, I know. I'm crazy and if you've lost your child you are shaking your head at how delusional I could be to think I might feel better "quickly." Well, it's all relative.
Because I suspect that others have felt guilty when they "felt better" whether that was three months later or three years. I write all this stuff down, because I have a suspicion that I might not be alone in these thoughts and feelings. And so, if anyone else has felt these things, or this way, now you have heard them here, from me. You are not alone.
I'm not sure, but I think some of my good feelings might actually just be due to me finally, after two years of grieving, starting to "feel better." NOT really about Joel's death, which has not happened, but I suspect rather that it has more to do with the grieving for other things I have been doing. You know, the loss of a "normal" family or abilities for my son. Those sorts of things. The final and worst loss has not occurred yet, and deep in my heart I know that.
But maybe some of the relief of the heaviness has had to do with a relief in the feelings of loss generated by so many other things. I don't know. But I'm pretty sure it's a common experience for people who experience loss to feel guilty about it on the occasions that they start to feel a bit better.
So, I'm writing to tell myself that even if I sometimes feel good, it doesn't mean I don't love Joel. Because my love for Joel can be seen in how I take care of him. How I cuddle him and how I do what I believe is best for him, most of the time. It's not a perfect measure, because I'll also always feel like I haven't done enough for him. But it might be a little better of an indication than looking at how bad/sad I feel and for how long. I know that I really love Joel, because I have always treated him with love. And it's ok to feel better sometimes. Really.
So hmmm.....first of all, I guess, is that we had a terrific Christmas and holiday season. It was great, being together was great and I even felt pretty great for most of it.
Which makes me feel guilty, because so many people I know have had horrible holidays. I can't name them, to protect their privacy, but I know four people who really had a difficult holiday season, and many others whom I'm not as close to, but I suspect the holidays were also fraught with pain or sadness.
And I feel badly that we had such a good Christmas when so many had such a struggle. Even though, of course, my own sad and difficult Christmas will be coming up eventually.
So it was hard to talk to them and answer when they asked how my Christmas was.
And then, feeling so good and happy at the holiday season... well, I guess I can't win...
Because I felt quite good. And that was even though I have really been feeling that Joel is not going to be here next year. And I was thinking about how I seem to have this gift for being happy with what I have. Or being able to adjust my expectations to my circumstances....? and then be contented with them. I'm not sure how to explain it. But through life I have been able to be happy in many different circumstances...
And that, put together with my current enjoyment of the holidays, made me feel bad. Yeah, I hear you. How can someone who can feel bad about so much stuff be delusional enough to think they have any ability to be happy or content. Well, I do. And I don't feel badly all the time. I just put it down here when I do.
In any case, I felt bad. Want to know how truly ridiculous it gets? I felt bad, and even worried, because I was afraid that after Joel died, I might not be sad or unhappy enough. Yeah. See? See what I mean? But there you have it. Complete transparency to my thought process.
I thought, maybe I won't be sad enough. Or depressed enough. Maybe I'll spring back and start enjoying life really quickly. Maybe I will miss him, but not enough to devastate me.
And that made me feel quite bad. I thought, maybe I just don't really love Joel enough. Maybe I don't love my boy as much as other mom's do. Maybe I'm even more selfish that I thought. Maybe my love is shallow and my grief is shallow too.
Yeah, I know. I'm crazy and if you've lost your child you are shaking your head at how delusional I could be to think I might feel better "quickly." Well, it's all relative.
Because I suspect that others have felt guilty when they "felt better" whether that was three months later or three years. I write all this stuff down, because I have a suspicion that I might not be alone in these thoughts and feelings. And so, if anyone else has felt these things, or this way, now you have heard them here, from me. You are not alone.
I'm not sure, but I think some of my good feelings might actually just be due to me finally, after two years of grieving, starting to "feel better." NOT really about Joel's death, which has not happened, but I suspect rather that it has more to do with the grieving for other things I have been doing. You know, the loss of a "normal" family or abilities for my son. Those sorts of things. The final and worst loss has not occurred yet, and deep in my heart I know that.
But maybe some of the relief of the heaviness has had to do with a relief in the feelings of loss generated by so many other things. I don't know. But I'm pretty sure it's a common experience for people who experience loss to feel guilty about it on the occasions that they start to feel a bit better.
So, I'm writing to tell myself that even if I sometimes feel good, it doesn't mean I don't love Joel. Because my love for Joel can be seen in how I take care of him. How I cuddle him and how I do what I believe is best for him, most of the time. It's not a perfect measure, because I'll also always feel like I haven't done enough for him. But it might be a little better of an indication than looking at how bad/sad I feel and for how long. I know that I really love Joel, because I have always treated him with love. And it's ok to feel better sometimes. Really.
Adrian
Way back last April, I had a "guest" writer share her thoughts. Her name is Carolina, and she wrote a blog called "52 Days." At that time one of her children had gone on to heaven. Her and her husband had two boys left with them, Jose who is healthy, and Adrian, who also had a PBD.
I just wanted to note on here, out of love and respect for my friend, her family, and her two boys, that earlier this week Adrian also went to heaven. He was just about to turn three years old, about half a year older than Joel. I only got to met him in person once, but he was a sweet little boy. He will be greatly missed.
How can you cope when your family of five has become a family of three?
I love you my dear friend, and you are in my thoughts and prayers.
I just wanted to note on here, out of love and respect for my friend, her family, and her two boys, that earlier this week Adrian also went to heaven. He was just about to turn three years old, about half a year older than Joel. I only got to met him in person once, but he was a sweet little boy. He will be greatly missed.
How can you cope when your family of five has become a family of three?
I love you my dear friend, and you are in my thoughts and prayers.
Subscribe to:
Posts (Atom)