Sorry, don't know what got into me with that title. Sometimes I have a dark sense of humour. OK, a lot of times I have a dark sense of humour. Even to myself. But it helps me get by. Even if I can't actually laugh, at least a smile is good.
So here I go, naming some peas, or counting my boo-boos, or whatever it is.
There is a "boo-boo" where I wonder if I could have changed something in the last two weeks of Joel's life to keep him here with me longer. I think it has mostly healed over. I thought about it most in the first months. I had to really examine it, I had to feel really honest about the answer, I knew, or I'd never be free of it. So I worked through it really painstakingly a few times. Going over the last two weeks of his life. Trying to see what I could have changed.
After doing that the first time, it never comes back as hard. Sometimes it comes back to me, because (if you can BELIEVE this) I have forgotten a detail of that time. Like I actually forgot, for a little while, that I had brought Joel in to emerg to be checked out the week before his O2 levels dropped like a stone. All of a sudden I found myself thinking, "Hey he was on almost continuous O2 for the last weeks, and I never checked that change out!" Then I went over it again, and it came back to me, oh yes, I did bring him in... and they did x-rays.
I'm so glad for this blog, for that reason. Anytime I get muddled, and think I forgot or didn't do something I could have to help him, I can go back over what I did/thought/felt and it helps me. So far I find I need to do that less and less. But if the need comes back strongly at any time, it is here, recorded for me.
And of course, there is the part where I say "If I had done something different, might he be with me NOW??" and the truth is, the farther I go from his death, the less likely that question could be a yes... Even if he had staved off that last infection, chances are that right now I'd be right about to lose him, or would still have lost him by now.
Then, for awhile, the "boo-boo" that hurt the most was Joel's bones. All the buckle fractures and the spinal compressions. They haunted me. The picture of the two times when I know I was holding him when it happened, just come to my mind. And it hurts me. I really never grieved those times when they happened. I couldn't. I had to make Joel happy and comfortable, and I couldn't afford to have the horror of the moments at the front of my brain. So now they come out.
Along with wondering if I could have changed that part of things. There are infusions that help with bone density. None of Joel's doctors ever thought of it or mentioned them to me. I don't know if Joel would have been a good candidate for the treatments or not, but by the time I had really heard about it, it was too late for Joel. I know it wasn't my fault, but it is a regret that I live with. His weak bones caused him so much pain...
Then there is the last hospital stay, back last fall. I had to deal with the pain and regret that I wasn't there for Joel 24/7. I don't feel as strongly about the other times in the hospital when I went home for the night. But I do about those three weeks. Partly because that is when Joel got the pressure sore on his head, which would have been prevented if I had stayed there overnight. I regretted greatly losing those three weeks of evening times with him, evenings were usually my best time with him. And so I grieve each of those lost times, even though I don't know if I'd have stayed sane if I had stayed 24/7 for those crazy three weeks.
There is the pain I have to work through about whether or not I should have stopped doing P/T directed on skills acquisition, on whether I could have done more that first year, or whether I could have tried harder to keep going...because I know that P/T is really beneficial to PBD kids, and might even slow the regression process. And so then I have to count all those peas. All the times it literally became impossible to do P/T with Joel. Like when he stopped eating and just slept all day. And when he got his GT surgery and then had a couple of weeks after of feeding/puking trouble. And then when he had his spinal compression/severe irritability and again ended up basically sleeping away a couple of months. I could go on and on with all those peas, each one is a jagged thorn ripping into my heart.
And there are a whole bunch of other ones, smaller and larger. Like wishing I had insisted on getting his adrenals checked in the spring when the breathing trouble started. Or that I had been able to sing to him more. Or realized that he liked HOT water sooner, so he could have enjoyed baths more. Feeding him orally more than I did.
And what I have been mostly doing in the last five months is clipping off those thorns. It is painful work. I can't really describe how much those thorns hurt me. But I am working on them. As I face them, examine them, tear them apart piece by piece, slowly accept what I could not change, and forgive anything I did in ignorance or over tiredness, they hurt less.
I am guessing they will return to haunt me from time to time. I am guessing that around the start of March I will once again need to go over Joel's last month. I am guessing that in January I will be grieving that we never got Joel his hot tub, as I will have been thinking of our hot tub "Staycation." I am expecting to rework it all, but it seems like each time there are less thorns that have grown back.
It is no wonder, really, that only now has missing him started in earnest. I haven't really been able to feel the thorns of missing him in the roses of my memories, because of all the other thorns. Some days it seems there are so many thorns and so few roses!!
You can imagine the emotional energy expended in all of this. No wonder I am so tired, so often. And why sometimes I am so vague. I wrote a friend an email to explain/apologize why I couldn't seem to remember when she sent me an e-card. Then when she came up to me to tell me that I didn't need to explain, I had totally forgotten that I had written her an email about it.
In fact, many, many times I have gone online to write someone and promptly forgotten. I can't seem to grasp things mentally if I am not firmly and directly in their context. By which I mean that if you ask me about an email when I am sitting at the computer, I will know what you are talking about. But if you ask me anywhere else, I will not have a clue! This is why it might seem like it takes me ages to respond to you.
Details slip through my mind like water. It feels like my brain is broken. Maybe it is more like a "virus" has taken over. I won't say it is a hostile program. But it has commandeered my mind for its' own purposes. I can't hold on to details like appointments, or your age or birthday, or when your baby is due, or things I have already told you TWICE, because my mind is so busy holding on to how many times I tried to do O/T with my son, or when I first realized his pain was from his weak bones, etc., etc., etc. This virus that has taken over my brain's programming will have to run its' course. It can't be removed without damage to my hard drive.
My apologies to you all for having to live with things like that for awhile. I know most of you understand. Feel free to help me out by supplying details I might have forgotten, if you think of it. It seems this blog is now about TWO topics, something I usually avoid. Oh well. It is now about the things that have been taking my emotional and mental energy and about what that loss of emotional and mental energy does to my brain... The first part was more for me, and the second part was more for you. So maybe I should have written about them in reverse order!
Anyway, I have spelled out some of the peas I have been counting. I think it does help me... it sort of feels like some kind of progress, even though I know that I'll very likely have to count some version of them again in the future. Like I quoted, grief is a circular staircase. You might be covering the same area, but at least you are going up. Eventually.
Saturday, August 27, 2011
Friday, August 26, 2011
Sitting in My House, Naming My Peas.
I think that just about every second thought yesterday was about Joel. I've missed him more in the last couple weeks than ever. Hope's funeral brought everything back. I felt like Joel had died that week... except that the week after Joel died didn't even feel like that.
I'm grateful that I don't wake up feeling depressed... yet anyway. I'm glad that I don't feel hopeless or helpless (two common symptoms of clinical depression). I am also glad that I can sleep well at night. And that I don't (usually) feel worthless.
But I am tired a lot, which is a symptom of depression. Or maybe just grief. Being sad and missing someone can really take it out of you. Don't get me wrong, I didn't think that after five months I'd miss my son LESS. Five months is nothing, a snap of the fingers, a blink of the eye of time. I just don't think I expected I'd be missing him more and more as time went on.
I put a poem up awhile back, "The Five Stages of Grief." It's a great poem, and one of the things it says that I have heard in various ways other places, is that grief is a "circular staircase." C.S. Lewis described it as a journey. A journey, you don't double back or retrace your footsteps, but the terrain often repeats. There are deserts and there are mountains. Each time you go through the desert, it is a different one, there are differences and changes. But it is still hot, dry, dusty. Each mountain is different, might be rocky, might be shale, might have trees, might have cliffs. But you find you are struggling UP.
There are just so very many places to go in grief. It seems inexhaustible. Well, I already know that in some ways it is, that my heart will not be done this journey until I find my home in heaven. There is a comfort in knowing that I've sort of "finished" with certain things, or at least that when I next touch on the topic, there will be less of a sting. But it is also important to acknowledge that I won't be done with this journey. So that I can pace myself. And accept the new reality.
I supposes it wouldn't totally be unlike walking into a kitchen to a mound of peas on a table and being asked to count the peas. And you do, and all the peas on the table are counted and you push back from the table, only to have your hand taken and be led to the next room, full from top to bottom with peas. And then you look down the hallway and see a number of doors, and underneath you can see little green bumps... You might be thinking "that's a heck of a lot of peas to count." It is.
But this new house is yours, and the peas only get cleared out as you count em. Your new life going to be lived with those peas for a long, long time. You will have to work around them. You will take breaks, rest, eat meals, sleep with those peas in your environment for a long, long time. And for a long time those peas will really be "in your face." Even as you slowly count off living spaces, you'll still be looking at them all around you. For a long time, it will seem that most of your life is counting those peas.
And as the years go by and the piles lessen, the peas will interfere less and less with the business of living there. They will be more in the background. Still, at unexpected times you will open a cupboard or peer under a couch to a surprise mound of em, sitting there. You'll find a couple rolled into your shoe. In your laundry. Years and years later. Safe to say, you'll never really be totally rid of them.
Oh my. I don't even know if that analogy is really a good one. As I have already said, I want Joel here in my heart. If the "Men in Black" came by to wipe my memory, I'd bite and claw and kick, I'd fight with all my being to keep my memories. I WANT to live in this house. But man, it is a heck of a lot of peas, or tears, or whatever it is. There are days when I'm fairly sick of peas, is all I'm saying. I'm somewhat totally tired of counting them.
I hope you are not too tired of HEARING about them... If you have to count em too, then you know how I feel. If you don't have to count em, then I hope you are so grateful for that fact, that you don't feel impatient with hearing me talk about it.
Next blog I'm going to list some of the grief "places" I've gone in the last months. It's not really for you. It's more for me. I think there might be something therapeutic in listing it out. Seeing it all there in print. Maybe I'll feel a sense of accomplishment, or a sense of relief. See the roses with the thorns removed.
I suppose that could be another analogy for what is being done. I'm living in a maze of very thorny rose bushes. And each day I spend some time cutting the thorns off, so that I may enjoy the roses without the sting. Every day, pokes and scratches, hands and arms smeared with blood. But every day there is a bit more "rose memory" that I can grasp without hurting myself.
Well, no analogy is perfect. They are limited, because they are only ways to explain it, they are not grief itself. Still, writing about it does something for me. There is some strength in NAMING things. A sort of power is lost, or gained... It is hard to explain or define why this is. But putting words to things has a special, for lack of a better word, magic. In some special way, acknowledging things takes away some of their potency. And in a sense, that is what I do in this blog. I try, as best as I can in my flawed human state, to acknowledge the truth about things.
Jesus said the truth would set us free. He also said HE was the Truth, capital T, and I believe that He is the ultimate Truth, that acknowledging Him gives us the ultimate freedom. But I think that the principle holds up in smaller things too. It is the un-named sins that hold us still. If we can not acknowledge them, we can never be rid of them. It is the pains we never say out loud, even to ourselves, or more importantly, to God, that refuse to heal. The truth is a powerful thing. The Truth is a powerful Person.
I'm grateful that I don't wake up feeling depressed... yet anyway. I'm glad that I don't feel hopeless or helpless (two common symptoms of clinical depression). I am also glad that I can sleep well at night. And that I don't (usually) feel worthless.
But I am tired a lot, which is a symptom of depression. Or maybe just grief. Being sad and missing someone can really take it out of you. Don't get me wrong, I didn't think that after five months I'd miss my son LESS. Five months is nothing, a snap of the fingers, a blink of the eye of time. I just don't think I expected I'd be missing him more and more as time went on.
I put a poem up awhile back, "The Five Stages of Grief." It's a great poem, and one of the things it says that I have heard in various ways other places, is that grief is a "circular staircase." C.S. Lewis described it as a journey. A journey, you don't double back or retrace your footsteps, but the terrain often repeats. There are deserts and there are mountains. Each time you go through the desert, it is a different one, there are differences and changes. But it is still hot, dry, dusty. Each mountain is different, might be rocky, might be shale, might have trees, might have cliffs. But you find you are struggling UP.
There are just so very many places to go in grief. It seems inexhaustible. Well, I already know that in some ways it is, that my heart will not be done this journey until I find my home in heaven. There is a comfort in knowing that I've sort of "finished" with certain things, or at least that when I next touch on the topic, there will be less of a sting. But it is also important to acknowledge that I won't be done with this journey. So that I can pace myself. And accept the new reality.
I supposes it wouldn't totally be unlike walking into a kitchen to a mound of peas on a table and being asked to count the peas. And you do, and all the peas on the table are counted and you push back from the table, only to have your hand taken and be led to the next room, full from top to bottom with peas. And then you look down the hallway and see a number of doors, and underneath you can see little green bumps... You might be thinking "that's a heck of a lot of peas to count." It is.
But this new house is yours, and the peas only get cleared out as you count em. Your new life going to be lived with those peas for a long, long time. You will have to work around them. You will take breaks, rest, eat meals, sleep with those peas in your environment for a long, long time. And for a long time those peas will really be "in your face." Even as you slowly count off living spaces, you'll still be looking at them all around you. For a long time, it will seem that most of your life is counting those peas.
And as the years go by and the piles lessen, the peas will interfere less and less with the business of living there. They will be more in the background. Still, at unexpected times you will open a cupboard or peer under a couch to a surprise mound of em, sitting there. You'll find a couple rolled into your shoe. In your laundry. Years and years later. Safe to say, you'll never really be totally rid of them.
Oh my. I don't even know if that analogy is really a good one. As I have already said, I want Joel here in my heart. If the "Men in Black" came by to wipe my memory, I'd bite and claw and kick, I'd fight with all my being to keep my memories. I WANT to live in this house. But man, it is a heck of a lot of peas, or tears, or whatever it is. There are days when I'm fairly sick of peas, is all I'm saying. I'm somewhat totally tired of counting them.
I hope you are not too tired of HEARING about them... If you have to count em too, then you know how I feel. If you don't have to count em, then I hope you are so grateful for that fact, that you don't feel impatient with hearing me talk about it.
Next blog I'm going to list some of the grief "places" I've gone in the last months. It's not really for you. It's more for me. I think there might be something therapeutic in listing it out. Seeing it all there in print. Maybe I'll feel a sense of accomplishment, or a sense of relief. See the roses with the thorns removed.
I suppose that could be another analogy for what is being done. I'm living in a maze of very thorny rose bushes. And each day I spend some time cutting the thorns off, so that I may enjoy the roses without the sting. Every day, pokes and scratches, hands and arms smeared with blood. But every day there is a bit more "rose memory" that I can grasp without hurting myself.
Well, no analogy is perfect. They are limited, because they are only ways to explain it, they are not grief itself. Still, writing about it does something for me. There is some strength in NAMING things. A sort of power is lost, or gained... It is hard to explain or define why this is. But putting words to things has a special, for lack of a better word, magic. In some special way, acknowledging things takes away some of their potency. And in a sense, that is what I do in this blog. I try, as best as I can in my flawed human state, to acknowledge the truth about things.
Jesus said the truth would set us free. He also said HE was the Truth, capital T, and I believe that He is the ultimate Truth, that acknowledging Him gives us the ultimate freedom. But I think that the principle holds up in smaller things too. It is the un-named sins that hold us still. If we can not acknowledge them, we can never be rid of them. It is the pains we never say out loud, even to ourselves, or more importantly, to God, that refuse to heal. The truth is a powerful thing. The Truth is a powerful Person.
Monday, August 15, 2011
Update.
Quite awhile ago, I told you about a mom I had met who lived right here in the same city I do, and who had two little girls who also had a rare, terminal, metabolic disorder, though not a PBD. She has become a very special and important friend. I do not really believe in coincidence, not in the "big things" anyway, and I do not think it was by any chance that we connected when we did.
If you missed the blog describing how we did meet, then I will say that we have been sharing the same pediatric palliative care team, and that I had given my blog address to our nurse to share with anyone she felt would like to read my blog. One day she gave it to Jolene, and Jolene DID read my blog. I followed her back to her own blog, we contacted each other, and an instant friendship was formed.
On the day that Joel died, I was paging the palliative care doctor at the funeral of Jolene's little girl Ashley. Yes. Ashley died only a week before Joel did.
And now, for those of you who do not regularly connect to her blog from mine to get an update, I have some very difficult and sad news. Ashley's sister Hope has died. She went to heaven yesterday morning. You can check out Jolene's blog if you would like to see pictures of how sweet and beautiful she was here on earth. I am so glad I got to get out for a visit last week, and I must have held her for over an hour. I am so glad I didn't put off that visit, I would have been so sad not to get that last chance.
I thought it was hard to lose a son and a father within months, but now my friend has lost two children within half a year of each other. I don't know the words to describe that kind of experience. Of course, Jolene hates for people to feel sorry for her, and so you better not do that. She has always felt that her two little girls were a special blessing. But now she has to live with two empty spaces, and I have a small idea of how painful that will be. So just remember her and her family in prayer... Lots of prayer.
If you missed the blog describing how we did meet, then I will say that we have been sharing the same pediatric palliative care team, and that I had given my blog address to our nurse to share with anyone she felt would like to read my blog. One day she gave it to Jolene, and Jolene DID read my blog. I followed her back to her own blog, we contacted each other, and an instant friendship was formed.
On the day that Joel died, I was paging the palliative care doctor at the funeral of Jolene's little girl Ashley. Yes. Ashley died only a week before Joel did.
And now, for those of you who do not regularly connect to her blog from mine to get an update, I have some very difficult and sad news. Ashley's sister Hope has died. She went to heaven yesterday morning. You can check out Jolene's blog if you would like to see pictures of how sweet and beautiful she was here on earth. I am so glad I got to get out for a visit last week, and I must have held her for over an hour. I am so glad I didn't put off that visit, I would have been so sad not to get that last chance.
I thought it was hard to lose a son and a father within months, but now my friend has lost two children within half a year of each other. I don't know the words to describe that kind of experience. Of course, Jolene hates for people to feel sorry for her, and so you better not do that. She has always felt that her two little girls were a special blessing. But now she has to live with two empty spaces, and I have a small idea of how painful that will be. So just remember her and her family in prayer... Lots of prayer.
Saturday, August 13, 2011
Singing in the Car.
There is a continuing tension I feel in speaking to other people about how a relationship with God transforms my life experiences, particularly those relating to Joel. Even when I type the previous sentence, I feel a part of it. I just said I had a relationship with God. If you are not familiar with this idea, it could sound nutty, arrogant, or self-righteous. So as I started typing this paragraph, I had a wry smile on my face... Particularly because at times I AM nutty, arrogant, or even (gulp) self-righteous.
So, about this tension...sometimes people say that I must find that my religious views help me through the loss of Joel. It's hard for me to know where to start with this. Because at other times, I wonder if some of the things I say sound trite... like I'm being a good Sunday school attendee, so I know that the right answer is automatically "Jesus."
And when I write this, I smile at myself again. Because that IS the trite answer that children quickly learn to shout out. But then again, at the deepest level, don't I actually believe that "Jesus" is the answer to all "the big questions" of life?
OK, enough of this abstract stuff. I want to be real and honest. About this tension I feel. Because I am sure that having God here, with me, changes everything about this journey aka "life." But I'm sure it is misleading and highly inaccurate to give the impression that I have found, or believe that it somehow lessens the pain. Or precludes certain experiences of the less than pleasant sort...
Still being abstract, I know, but this isn't easy to nail down... Let me say I have heard a few people remark at times that they didn't feel someone was being totally and completely honest when they talked about God, difficulties or sorrows, and how those two elements related to their life. That they spruced things up to be conventional. That maybe they were giving answers they didn't completely believe themselves. Or maybe more accurately, answers they felt were the right ones, the ones the Sunday School teacher wanted to hear, even if they didn't feel much conviction about it themselves.
And one of the things I have been wrestling with is what, exactly, the difference is, being in relationship with Jesus. I'm disregarding the whole "truth" part of it right now. I mean, I don't believe what I believe BECAUSE of what I think it can do for me. You know what I mean. Believe you can be ANYTHING and you can do it. Therefore, believe you have a relationship with God and you WILL feel better. This is NOT my mantra... I have a very "old-fashioned" relationship to the truth, things are true or they are not, imaginary friends are nice when you are child, but if I am playing some complicated game with myself where God is my imaginary friend because I think that makes my life better, well, that isn't intellectually viable to me. I mean, I can't live that way.
So I believe in God's existence and in His personal nature because I am convinced it's true. And I've not been questioning that... What I have been mulling over is, does being convinced of this truth make a difference in experiencing grief...?? In how I cope??? In the person I am at my core..??
I can't come up with any real, straightforward and simple answers, in all honesty... Because I do know people who live with out any real belief in God who seem to cope quite well. Who seem to incorporate grief into their lives and make good out of it... Who are as healthy and well-balanced as anyone. And then I know of some who seem to have a very deep and abiding belief in God, and yet they struggle. Life almost seems to have them by the neck at times...
Of course, part of the problem is how do any of us really know what the "best coping" looks like. Or if holding on by our fingernails for awhile might not put us in better stead one day then seemingly coasting through... And I can't really answer that when it comes to other people... I haven't lived long enough, I'm not wise enough, I haven't known enough people to detect these things.
I am unable to compare myself with others. I really can't tell you. And I suspect that it is unwise to do so in any case. Here is what I can tell you though. I can tell you about my experience on my son's birthday, and about my realization afterwards... And then you can decide what you think about that.
We were headed out for a lovely pizza dinner at my friend Shannon's parents place. It was Joel's birthday, the first one without him. I don't know what that means for other parents, I only know that I had braced myself for a tough day. So far, it had been O - K. And we were driving out and it was about a 30 minute drive. And I started to sing. I WANTED to sing. I do not even remember now what songs I was singing, but they were songs to God. Praising songs. And while I sang, I was filled with what I can only call "assurance." I was going to say that God spoke to me. But then, what did He say? How do I know it wasn't just feelings? No, I don't hear an audible voice, no there was no burning bush. I'm not making that sort of claim. Maybe "spoke" is the wrong word... So that is why I say it was an assurance. I was filled up with the sureness that God did love me, even though both my son and my father had died within months of each other. And I was filled up with an assurance that one day it would make sense, and something beautiful would come out of it...
There were tough moments too that day, that week, and continuing on. If you check what I wrote, you'll see I didn't feel any sort of impression that I was done with pain or sadness. I didn't. I just felt an assurance that God would be with me and that, yes, as I said, all will be well.
Later on, I thought about it. It is so hard for me to explain on one hand how painful it is to miss my son. It is so hard for me to explain that some days I just don't want to give to anyone else. That sometimes I have no energy. And that praying can be a battle. AND that at the same time, I am sure that keeping God close does make this BETTER, even though I am not sure that the word "easier" applies.
And then the revelation came to me. I was thinking about how when Joel was alive, each day was hard, but each day had an incredible joy. Every day I cried, but every day I laughed too, out of the joy of just being there with my son. It didn't take away the pain. It didn't mean I still didn't feel overwhelmed by doctors and medical procedures and seizure management. Some days were very hard. But every day I had such joy in being with my son. I could not hold him in my arms without feeling the happiest rush of love, and with it, a great unquenchable joy that he was mine and he was with me.
So, I realized, it is with God. I can't tell you that it isn't still very painful. I still have to go through all the pain. I still have to face the difficulties and frustrations. But King David once wrote, in a Psalm "In YOUR presence is fullness of joy." I find myself strangely happy in the midst of this tragedy, if by happiness you mean a blessed, peaceful contentment... I don't know how to explain how you can be content in a life where you constantly long for your child. But my life with Joel was full of joy even though it was full of pain, sorrow and difficulty. And my life with Jesus is still full of joy, even if there is nothing easy about loss. It is true, in His presence is fullness of joy.
I'm going to put up some pictures from the conference now. I hope what I was trying to explain about God and what He means to me through this, did not sound trite. I hope it didn't sound like Sunday School 101. Because I promise you I paid to learn this truth, that the presence of the Lord gives fullness of joy, with my own tears. There was nothing cheap or trite about it.
This is Sam. He is my friend, Shannon's boy. I have some pictures where he has the biggest smile, but they came out really blurry, and at least in this shot you can see him walking (with some assistance). Pretty cool, and did I mention that Sam not only has a PBD, but is almost done with treatment for leukemia as well. GO SAM!
So, about this tension...sometimes people say that I must find that my religious views help me through the loss of Joel. It's hard for me to know where to start with this. Because at other times, I wonder if some of the things I say sound trite... like I'm being a good Sunday school attendee, so I know that the right answer is automatically "Jesus."
And when I write this, I smile at myself again. Because that IS the trite answer that children quickly learn to shout out. But then again, at the deepest level, don't I actually believe that "Jesus" is the answer to all "the big questions" of life?
OK, enough of this abstract stuff. I want to be real and honest. About this tension I feel. Because I am sure that having God here, with me, changes everything about this journey aka "life." But I'm sure it is misleading and highly inaccurate to give the impression that I have found, or believe that it somehow lessens the pain. Or precludes certain experiences of the less than pleasant sort...
Still being abstract, I know, but this isn't easy to nail down... Let me say I have heard a few people remark at times that they didn't feel someone was being totally and completely honest when they talked about God, difficulties or sorrows, and how those two elements related to their life. That they spruced things up to be conventional. That maybe they were giving answers they didn't completely believe themselves. Or maybe more accurately, answers they felt were the right ones, the ones the Sunday School teacher wanted to hear, even if they didn't feel much conviction about it themselves.
And one of the things I have been wrestling with is what, exactly, the difference is, being in relationship with Jesus. I'm disregarding the whole "truth" part of it right now. I mean, I don't believe what I believe BECAUSE of what I think it can do for me. You know what I mean. Believe you can be ANYTHING and you can do it. Therefore, believe you have a relationship with God and you WILL feel better. This is NOT my mantra... I have a very "old-fashioned" relationship to the truth, things are true or they are not, imaginary friends are nice when you are child, but if I am playing some complicated game with myself where God is my imaginary friend because I think that makes my life better, well, that isn't intellectually viable to me. I mean, I can't live that way.
So I believe in God's existence and in His personal nature because I am convinced it's true. And I've not been questioning that... What I have been mulling over is, does being convinced of this truth make a difference in experiencing grief...?? In how I cope??? In the person I am at my core..??
I can't come up with any real, straightforward and simple answers, in all honesty... Because I do know people who live with out any real belief in God who seem to cope quite well. Who seem to incorporate grief into their lives and make good out of it... Who are as healthy and well-balanced as anyone. And then I know of some who seem to have a very deep and abiding belief in God, and yet they struggle. Life almost seems to have them by the neck at times...
Of course, part of the problem is how do any of us really know what the "best coping" looks like. Or if holding on by our fingernails for awhile might not put us in better stead one day then seemingly coasting through... And I can't really answer that when it comes to other people... I haven't lived long enough, I'm not wise enough, I haven't known enough people to detect these things.
I am unable to compare myself with others. I really can't tell you. And I suspect that it is unwise to do so in any case. Here is what I can tell you though. I can tell you about my experience on my son's birthday, and about my realization afterwards... And then you can decide what you think about that.
We were headed out for a lovely pizza dinner at my friend Shannon's parents place. It was Joel's birthday, the first one without him. I don't know what that means for other parents, I only know that I had braced myself for a tough day. So far, it had been O - K. And we were driving out and it was about a 30 minute drive. And I started to sing. I WANTED to sing. I do not even remember now what songs I was singing, but they were songs to God. Praising songs. And while I sang, I was filled with what I can only call "assurance." I was going to say that God spoke to me. But then, what did He say? How do I know it wasn't just feelings? No, I don't hear an audible voice, no there was no burning bush. I'm not making that sort of claim. Maybe "spoke" is the wrong word... So that is why I say it was an assurance. I was filled up with the sureness that God did love me, even though both my son and my father had died within months of each other. And I was filled up with an assurance that one day it would make sense, and something beautiful would come out of it...
There were tough moments too that day, that week, and continuing on. If you check what I wrote, you'll see I didn't feel any sort of impression that I was done with pain or sadness. I didn't. I just felt an assurance that God would be with me and that, yes, as I said, all will be well.
Later on, I thought about it. It is so hard for me to explain on one hand how painful it is to miss my son. It is so hard for me to explain that some days I just don't want to give to anyone else. That sometimes I have no energy. And that praying can be a battle. AND that at the same time, I am sure that keeping God close does make this BETTER, even though I am not sure that the word "easier" applies.
And then the revelation came to me. I was thinking about how when Joel was alive, each day was hard, but each day had an incredible joy. Every day I cried, but every day I laughed too, out of the joy of just being there with my son. It didn't take away the pain. It didn't mean I still didn't feel overwhelmed by doctors and medical procedures and seizure management. Some days were very hard. But every day I had such joy in being with my son. I could not hold him in my arms without feeling the happiest rush of love, and with it, a great unquenchable joy that he was mine and he was with me.
So, I realized, it is with God. I can't tell you that it isn't still very painful. I still have to go through all the pain. I still have to face the difficulties and frustrations. But King David once wrote, in a Psalm "In YOUR presence is fullness of joy." I find myself strangely happy in the midst of this tragedy, if by happiness you mean a blessed, peaceful contentment... I don't know how to explain how you can be content in a life where you constantly long for your child. But my life with Joel was full of joy even though it was full of pain, sorrow and difficulty. And my life with Jesus is still full of joy, even if there is nothing easy about loss. It is true, in His presence is fullness of joy.
I'm going to put up some pictures from the conference now. I hope what I was trying to explain about God and what He means to me through this, did not sound trite. I hope it didn't sound like Sunday School 101. Because I promise you I paid to learn this truth, that the presence of the Lord gives fullness of joy, with my own tears. There was nothing cheap or trite about it.
Cute as a button! This is Kenna and her mom, Vicky. I am just getting to know them, and looking forward to it very much.
This is Ginny. Melissa Gamble is her mom. I have a good picture of Mel somewhere too, and I'll put it up. The first time I spoke to Mel on the phone, I thought "She sounds just like Ellen Page!" Ginny is super cute, but I didn't get to hold her much because she has more refined taste, and preferred her mom...
This is Ciera. Sorry, Jen, I just got part of your face! I love this picture! Ciera is trying to grab some of the decorations from the fiesta. Yes, she has a PBD just like Joel, but she can see well enough to grab for an object. Actually, each of the four kids I put up here has good use of vision and they are all in some stage of walking, assisted or unassisted... Wow. Wish I could have shown them to Joel's doctors...
Tuesday, August 9, 2011
Details.
Okay, today I'll put up some details about the conference. Personally, I don't think I'm much of a details kinda person, I'm more of a "big picture" type of gal. But I know (oddly enough) that some of you like a bit of the nitty gritty of what exactly went on, instead of just "It was fabulous and I spent the whole time visiting."
Don't say I didn't warn you though. This might be boring... Details are a lot more fun when you are the one experiencing them, not the one reading them. Unless you are a Victorian reader. Then you love em. But none of you are Victorians, right? So, if the details are too much, skip to the end. There are pictures there. Oh gosh, now it sounds like I think you are children, offering a picture book, instead of a novel. Sorry. Just do what you want and I'll get to writing out the details!
So here I go. We left for the conference on Friday and if I were an ancient Roman, I'd say it was not an "auspicious" day for travelling. I'm not at all superstitious, but it did seem like things were not going our way. We got out of the house later than I planned. Then we were almost clear of the city when Steve (fortunately) asked if I remembered the passports. Guess what? I hadn't. So that was another half an hour to our trip. We ran into lots of construction right off the bat. The border went OK, but when we stopped for lunch (having only reached Grand Forks!!) we had some issues with the car wash that we decided to "quickly" use. Instead of adding 10 minutes, it added more like another half an hour. There was construction, construction, and even more construction. And it was crazy hot and we don't even have air conditioning in the car. It was sort of a grumpy day, I might add.
Finally, we ended up at a nice little hotel in Watertown. We had left at 9AM and we got into the hotel somewhere between 5 and 6pm. Making what was supposed to be a 5 or 6 hour travel day to be 8 hours and only half way there. Boy was I glad we had decided to break the trip up. But the hotel had a pool, there was a fantastic breakfast in the morning, and the next day (even though we had a tense hour after missing a detour turn and there was still some construction) went much more quickly.
We ended up at the conference hotel at exactly 3pm on Saturday. And as soon as we stepped in the door we ran into friends at the front desk, so cool! The conference didn't technically start until 3pm the next day. So I hung around and visited while Steve and Caeden did their own thing in the room (which means watch cartoon, read a book, etc.) I went to the coffee shop and got a Starbucks and a book, and then went and sat in the lobby tostalk greet people as they got in. I got very little of my book read, but I did get to welcome a lot of people.
I ended up in Pam Marshal's room, with her and her boy, Ethan, and another "new" friend, Vicky Maag, and her little girl, Kenna. I say "new," because we all had met awhile back through the online group, but this was the first "in person" meeting.
Finally a group of us ended up in the hotel dining room for a supper together. Both the Alfaros and the Whitneys were there, two other families that had lost children. Supper took a long, long time, but I very much enjoyed the visiting and sharing.
There was some pool time that evening, and then I invited myself over to the Alfaro's room (which was right beside ours!) for the rest of the evening. (Are you sensing a trend here? I just invited myself all over!) I managed to keep them up visiting until about 1am while my wonderful husband watched my boy and TV in the next room. We had a great time visiting. At least, I had a great time visiting!
The next morning, after a breakfast with some more PBD families, we decided to check out the "Fontanelle Forest," a big park with boardwalks and displays that was nearby. I would call that decision an error in judgement. Because it is HOT in Omaha. Really, REALLY hot. It was 38 degrees and the humidity felt like close to 100%. Oh yeah. We made it around the first series of boardwalks just barely. And then we did the sensible thing, and went back to the hotel and the air conditioning.
There was some lunch with the Gambles and the Edgars. After that, there was a lot of "mingling" on my part, there was a quick prayer time with some of the other parents who follow Jesus (which was good, and next time I'll plan it sooner), and then before we knew it the conference "officially" started with an amazing buffet meal.
After that, there were presentations, which is when my skipping out started. I am sure the presentations were good, but as I mentioned before, I good reason for sort of taking a pass on them. Instead I visited in the hall and watched the younger children with some good friends. Caeden had a wonderful time playing with his two new best friends, Jose Jr. and Griffin. I had a wonderful time chatting with the moms.
This is a long, LONG blog, isn't it? See what happens when I get into details? So I'll try and pick up the pace. The next morning breakfast and then I went to the break out session for parents whose child/ren had died. It was led by a group of ladies from Compassionate Friends. There were five families there with children in heaven. And I was really glad to see a few people with living children who were brave enough to join us for some of the day. The best part of it was actually the afternoon, because after lunch we just had an open time to discuss and BOY did we have LOTS to say! We could have used another day, I tell you.
There was an introduction to the Parent Panel at 3:45, and I was on it. Then the memorial service. I did a reading for that, and while I cried, I managed to get through it. There was a beautiful video of the many, many children who have died of a PBD, done my good friend, Carolina Alfaro. And then we all composed ourselves, washed off the tears and headed out to the State park for a fiesta and more visiting. We came back to the hotel, Steve and Caeden headed to bed, and I hung out in the lobby visiting until 2:30 in the morning.
I'm finally going to stop. I already wrote a bit about the next day, which was Joel's birthday. And I think you have been detailed to death. But now you know. The details on what I actually did. Give or take a few. Wish I could mention ALL the people I met and talked with. But that would be very long. I did want to give you a few names, though.
Why? Because instead of just talking vaguely of "friends" I wanted you to have some names since names make it more personal. So it really hits you that there are lots of other, special people out there, and I love them. They have names and faces, and that's why I am so sad when another child dies.
To finish off, maybe I'll put up some pictures of some of the people. I took really awful pictures, I couldnt' seem to master the settings on the camera, but I'll put a few of the good ones up for you.
This is Caeden with his other best friend, Griffin, and Griffin's little sister, Skylar who was "too little" to know how to "play right." Sorry Skylar, and you were so nice to him too. The Edgars (Heather and Geoff) are fellow Canadians, and they are awesome people. They couldn't bring Ben, he doesn't travel so well, but I have seen lots of pictures and I can tell you, he is a sweet heart.
This is me (of course) holding Jordan. I cuddled him several times. I wish I could have cuddled him a lot more, but I also had to share him, plus he really did prefer his mama to me. Sarah is not in this picture, I don't seem to have a good picture of her anywhere.... anyhow, the other person in the picture is Jordan's dad, Kenny.
Ok, I'm realizing that this will take a long time, so I'm going to stop and continue it later. The pictures I mean. Not the details. Don't worry, I'm done with those. I'll just put up the pictures. ;)
Don't say I didn't warn you though. This might be boring... Details are a lot more fun when you are the one experiencing them, not the one reading them. Unless you are a Victorian reader. Then you love em. But none of you are Victorians, right? So, if the details are too much, skip to the end. There are pictures there. Oh gosh, now it sounds like I think you are children, offering a picture book, instead of a novel. Sorry. Just do what you want and I'll get to writing out the details!
So here I go. We left for the conference on Friday and if I were an ancient Roman, I'd say it was not an "auspicious" day for travelling. I'm not at all superstitious, but it did seem like things were not going our way. We got out of the house later than I planned. Then we were almost clear of the city when Steve (fortunately) asked if I remembered the passports. Guess what? I hadn't. So that was another half an hour to our trip. We ran into lots of construction right off the bat. The border went OK, but when we stopped for lunch (having only reached Grand Forks!!) we had some issues with the car wash that we decided to "quickly" use. Instead of adding 10 minutes, it added more like another half an hour. There was construction, construction, and even more construction. And it was crazy hot and we don't even have air conditioning in the car. It was sort of a grumpy day, I might add.
Finally, we ended up at a nice little hotel in Watertown. We had left at 9AM and we got into the hotel somewhere between 5 and 6pm. Making what was supposed to be a 5 or 6 hour travel day to be 8 hours and only half way there. Boy was I glad we had decided to break the trip up. But the hotel had a pool, there was a fantastic breakfast in the morning, and the next day (even though we had a tense hour after missing a detour turn and there was still some construction) went much more quickly.
We ended up at the conference hotel at exactly 3pm on Saturday. And as soon as we stepped in the door we ran into friends at the front desk, so cool! The conference didn't technically start until 3pm the next day. So I hung around and visited while Steve and Caeden did their own thing in the room (which means watch cartoon, read a book, etc.) I went to the coffee shop and got a Starbucks and a book, and then went and sat in the lobby to
I ended up in Pam Marshal's room, with her and her boy, Ethan, and another "new" friend, Vicky Maag, and her little girl, Kenna. I say "new," because we all had met awhile back through the online group, but this was the first "in person" meeting.
Finally a group of us ended up in the hotel dining room for a supper together. Both the Alfaros and the Whitneys were there, two other families that had lost children. Supper took a long, long time, but I very much enjoyed the visiting and sharing.
There was some pool time that evening, and then I invited myself over to the Alfaro's room (which was right beside ours!) for the rest of the evening. (Are you sensing a trend here? I just invited myself all over!) I managed to keep them up visiting until about 1am while my wonderful husband watched my boy and TV in the next room. We had a great time visiting. At least, I had a great time visiting!
The next morning, after a breakfast with some more PBD families, we decided to check out the "Fontanelle Forest," a big park with boardwalks and displays that was nearby. I would call that decision an error in judgement. Because it is HOT in Omaha. Really, REALLY hot. It was 38 degrees and the humidity felt like close to 100%. Oh yeah. We made it around the first series of boardwalks just barely. And then we did the sensible thing, and went back to the hotel and the air conditioning.
There was some lunch with the Gambles and the Edgars. After that, there was a lot of "mingling" on my part, there was a quick prayer time with some of the other parents who follow Jesus (which was good, and next time I'll plan it sooner), and then before we knew it the conference "officially" started with an amazing buffet meal.
After that, there were presentations, which is when my skipping out started. I am sure the presentations were good, but as I mentioned before, I good reason for sort of taking a pass on them. Instead I visited in the hall and watched the younger children with some good friends. Caeden had a wonderful time playing with his two new best friends, Jose Jr. and Griffin. I had a wonderful time chatting with the moms.
This is a long, LONG blog, isn't it? See what happens when I get into details? So I'll try and pick up the pace. The next morning breakfast and then I went to the break out session for parents whose child/ren had died. It was led by a group of ladies from Compassionate Friends. There were five families there with children in heaven. And I was really glad to see a few people with living children who were brave enough to join us for some of the day. The best part of it was actually the afternoon, because after lunch we just had an open time to discuss and BOY did we have LOTS to say! We could have used another day, I tell you.
There was an introduction to the Parent Panel at 3:45, and I was on it. Then the memorial service. I did a reading for that, and while I cried, I managed to get through it. There was a beautiful video of the many, many children who have died of a PBD, done my good friend, Carolina Alfaro. And then we all composed ourselves, washed off the tears and headed out to the State park for a fiesta and more visiting. We came back to the hotel, Steve and Caeden headed to bed, and I hung out in the lobby visiting until 2:30 in the morning.
I'm finally going to stop. I already wrote a bit about the next day, which was Joel's birthday. And I think you have been detailed to death. But now you know. The details on what I actually did. Give or take a few. Wish I could mention ALL the people I met and talked with. But that would be very long. I did want to give you a few names, though.
Why? Because instead of just talking vaguely of "friends" I wanted you to have some names since names make it more personal. So it really hits you that there are lots of other, special people out there, and I love them. They have names and faces, and that's why I am so sad when another child dies.
To finish off, maybe I'll put up some pictures of some of the people. I took really awful pictures, I couldnt' seem to master the settings on the camera, but I'll put a few of the good ones up for you.
This is Carolina, or Caro, and her son Jose Jr. Caeden LOVED Jose. They were our neighbours at the conference. I have a picture of Jose Sr. somewhere too. The Alfaro's have two children in heaven, Diego who died shortly after I joined the group and then Adrian, who died this past winter just a bit before Joel did.
This is Caeden with his other best friend, Griffin, and Griffin's little sister, Skylar who was "too little" to know how to "play right." Sorry Skylar, and you were so nice to him too. The Edgars (Heather and Geoff) are fellow Canadians, and they are awesome people. They couldn't bring Ben, he doesn't travel so well, but I have seen lots of pictures and I can tell you, he is a sweet heart.
This is me (of course) holding Jordan. I cuddled him several times. I wish I could have cuddled him a lot more, but I also had to share him, plus he really did prefer his mama to me. Sarah is not in this picture, I don't seem to have a good picture of her anywhere.... anyhow, the other person in the picture is Jordan's dad, Kenny.
Ok, I'm realizing that this will take a long time, so I'm going to stop and continue it later. The pictures I mean. Not the details. Don't worry, I'm done with those. I'll just put up the pictures. ;)
Saturday, August 6, 2011
Joel's Birthday.
I wish more of our pictures from the conference had turned out. I could blame it on the fact that we don't really have an expensive camera. I think it might be more that we've never really learned to use all the settings properly. But I do have a few pictures, and I will put up a few of them in the next few blogs.
So, my choice today is to either write about Joel's birthday, or about a precious realization I had on the trip....hmmm.
OK, I will go with Joel's birthday. You'll have to wait for the other one.
Joel's birthday this year was... oh boy, how to explain it. Let's see if I can get a list of adjectives going here, that all apply in some measure or other. It had moments that were: poignant, affirming, wistful, joyous, peaceful, heart wrenching but in a good way, comfortable, lonely, awkward, restful, fun...
It was a very different day, I am sure, then it would have been if I had been here at home. Yes, I felt both awkward and comfortable at times throughout the day. I felt very comfortable, being with all my fellow PBD families. I also felt awkward at times. I felt comfortable because I knew they understood the importance of the day and what my son meant to me. I felt awkward, because I could feel them worrying and wishing so hard to ease the day for me.
It was both lonely and heart wrenching, because so many people left that day, and by the end, we were the only family who had lost a child. It felt a bit lonely from time to time, seeing all the living PBD kids. And of course, heart wrenching too, but in a painful but good way.
Everyone did so much to remember the day and show their support. We had a very late brunch with friends Tracey and Ken (Graham up in heaven). It was good to spend that time with other grieving parents. Though in truth, all the PBD parents are grieving parents, just that the focus of the grief is different.
We spent the evening at the home of Shannon's (Sam's mom) parents. Her and Melissa (Ginny's mom) worked together, and with some fancy footwork from Melissa's husband, Brant, they managed to get me the balloons I wanted to hand out to the children who were there. Shannon's family also provided a lovely Chinese lantern to light, and as we lit it and sent it up into the sky, we sang Happy Birthday to Joel. It was very beautiful and special, but the very best part of it was the people who surrounded me and cared so much.
The absolute best gift of the day happened in the morning. Throughout the conference, I was able to hold, cuddle and interact with lots of PBD kids. Every time it was so special and a beautiful gift to me. My friend Sarah let me hold her boy, Jordan, lots of times. And most of the time, he didn't even cry at the strange lady holding him. I loved every single one of the kids I saw from even before I ever laid eyes on them.
But the highlight of Joel's birthday was when I formally met, for the first time, a little boy named Clayton. His mom, Jen, let me hold and cuddle him for about 20 minutes on the morning of Joel's birthday. Yes, I wept. Lots. And I was so thankful for those precious moments.
Clayton is, of course, his own sweet person. He is not Joel, he is special and unique and wonderful just as himself. For that part of it, I enjoyed every minute as I would have even if I had never had Joel. But holding him also did something beautiful for me. It allowed me to remember Joel more clearly than I have in a long, long time. There were so many things about him that aided my mind's eye to feeling Joel in my arms again, to seeing the beautiful expressions on his face. He was not Joel, but he loved cuddling the same way, and he smiled and laughed with delight over it. His eyes glimpsed up at me as Joel's so often did. He made little noises of happiness as Joel did. I can't even explain it. It was just priceless, feeling those memories wash over me so clearly.
So, I'm going to end with some pictures of me holding him. I'll put up some pictures of the other special and precious children another time. This is about Joel's birthday, and seeing me holding Clayton is about the best explanation of what that day was like for me that there is.
So, my choice today is to either write about Joel's birthday, or about a precious realization I had on the trip....hmmm.
OK, I will go with Joel's birthday. You'll have to wait for the other one.
Joel's birthday this year was... oh boy, how to explain it. Let's see if I can get a list of adjectives going here, that all apply in some measure or other. It had moments that were: poignant, affirming, wistful, joyous, peaceful, heart wrenching but in a good way, comfortable, lonely, awkward, restful, fun...
It was a very different day, I am sure, then it would have been if I had been here at home. Yes, I felt both awkward and comfortable at times throughout the day. I felt very comfortable, being with all my fellow PBD families. I also felt awkward at times. I felt comfortable because I knew they understood the importance of the day and what my son meant to me. I felt awkward, because I could feel them worrying and wishing so hard to ease the day for me.
It was both lonely and heart wrenching, because so many people left that day, and by the end, we were the only family who had lost a child. It felt a bit lonely from time to time, seeing all the living PBD kids. And of course, heart wrenching too, but in a painful but good way.
Everyone did so much to remember the day and show their support. We had a very late brunch with friends Tracey and Ken (Graham up in heaven). It was good to spend that time with other grieving parents. Though in truth, all the PBD parents are grieving parents, just that the focus of the grief is different.
We spent the evening at the home of Shannon's (Sam's mom) parents. Her and Melissa (Ginny's mom) worked together, and with some fancy footwork from Melissa's husband, Brant, they managed to get me the balloons I wanted to hand out to the children who were there. Shannon's family also provided a lovely Chinese lantern to light, and as we lit it and sent it up into the sky, we sang Happy Birthday to Joel. It was very beautiful and special, but the very best part of it was the people who surrounded me and cared so much.
The absolute best gift of the day happened in the morning. Throughout the conference, I was able to hold, cuddle and interact with lots of PBD kids. Every time it was so special and a beautiful gift to me. My friend Sarah let me hold her boy, Jordan, lots of times. And most of the time, he didn't even cry at the strange lady holding him. I loved every single one of the kids I saw from even before I ever laid eyes on them.
But the highlight of Joel's birthday was when I formally met, for the first time, a little boy named Clayton. His mom, Jen, let me hold and cuddle him for about 20 minutes on the morning of Joel's birthday. Yes, I wept. Lots. And I was so thankful for those precious moments.
Clayton is, of course, his own sweet person. He is not Joel, he is special and unique and wonderful just as himself. For that part of it, I enjoyed every minute as I would have even if I had never had Joel. But holding him also did something beautiful for me. It allowed me to remember Joel more clearly than I have in a long, long time. There were so many things about him that aided my mind's eye to feeling Joel in my arms again, to seeing the beautiful expressions on his face. He was not Joel, but he loved cuddling the same way, and he smiled and laughed with delight over it. His eyes glimpsed up at me as Joel's so often did. He made little noises of happiness as Joel did. I can't even explain it. It was just priceless, feeling those memories wash over me so clearly.
So, I'm going to end with some pictures of me holding him. I'll put up some pictures of the other special and precious children another time. This is about Joel's birthday, and seeing me holding Clayton is about the best explanation of what that day was like for me that there is.
Friday, August 5, 2011
Conference
It was, of course, over too soon, and hard to say good-bye.
But the conference was very, very good. I crammed as much talking and being with other parents as I could into it. I was up until at least 1 AM every night we were there. I skipped pretty much every session, but the grief one, and just hung out.
Don't get me wrong, the sessions were good. I just wasn't there with it all, as far as getting information goes. One of the biggest reasons I missed the info sessions (aside from so I could chat with other people) was because I couldn't help the tiny uncertainty I had that I would hear of something I had missed doing, something that might have helped Joel. I already have enough things I wish I had known about/done/figured out, etc that make me feel sad, so I have no wish to come across any others. And much of the information was good for new parents, but quite a bit of it I had already heard or learned before. Which means: old info = redundant, and new info = feeling bad. So I skipped out.
But as I said, I crammed every second I could with talking to parents and seeing their kids. It was so good to be face to face. And it was so good to talk about Joel, Joel, Joel, for about four days straight. None of the other parents ever gave the impression that they had just about had enough of hearing about him, either. The other PBD parents are so great. So they let me feel a part of it, and go on and on about Joel, in a way that I never otherwise get to do.
And you know what? After the fourth day of it, I thought, whew... I think I have said enough. Now what can I talk about?? Not that this feeling will last. In a couple more days, I know I will wish to talk about Joel more, but it will be just as hard to do as before the conference, and so much of my "talking" about Joel will be in the form of silent longing for him, memories, and all that sort of thing. Still, it was an incredible gift to be able to talk about my child to my heart's content to other people who understood, related, and didn't mind, because they were talking about their kids to their own heart's content too.
I didn't feel as sad as I thought I might, either. Oh, not that I didn't feel sad, or that it wasn't painful to see other children like Joel, to be at a conference about them, and be sans Joel myself. I just had expected to be sadder. In truth, most of the time I was so happy to see my friends, and so happy to see the other children, that the sadness seemed small by comparison.
The conference was a wonderful gift. And we owe it all to the Brady Colbert Foundation for paying our way. We are very grateful.
I have a lot more to say about it, but as soon as we got home, I was totally wiped out. Whew. So much emotion and stuff. Steve and I are so tired now. So I'm doing a bit of laundry, we are buying some groceries, and we are just going to rest for a couple of days. And I will get back on here and write about Joel's birthday a bit later. And put up pictures, including one of Joel's new box for his memories. And some other stuff.
For now, I just wanted to share that we are back, that we loved the conference, it was good for us, and everything went just fine on our trip.
But the conference was very, very good. I crammed as much talking and being with other parents as I could into it. I was up until at least 1 AM every night we were there. I skipped pretty much every session, but the grief one, and just hung out.
Don't get me wrong, the sessions were good. I just wasn't there with it all, as far as getting information goes. One of the biggest reasons I missed the info sessions (aside from so I could chat with other people) was because I couldn't help the tiny uncertainty I had that I would hear of something I had missed doing, something that might have helped Joel. I already have enough things I wish I had known about/done/figured out, etc that make me feel sad, so I have no wish to come across any others. And much of the information was good for new parents, but quite a bit of it I had already heard or learned before. Which means: old info = redundant, and new info = feeling bad. So I skipped out.
But as I said, I crammed every second I could with talking to parents and seeing their kids. It was so good to be face to face. And it was so good to talk about Joel, Joel, Joel, for about four days straight. None of the other parents ever gave the impression that they had just about had enough of hearing about him, either. The other PBD parents are so great. So they let me feel a part of it, and go on and on about Joel, in a way that I never otherwise get to do.
And you know what? After the fourth day of it, I thought, whew... I think I have said enough. Now what can I talk about?? Not that this feeling will last. In a couple more days, I know I will wish to talk about Joel more, but it will be just as hard to do as before the conference, and so much of my "talking" about Joel will be in the form of silent longing for him, memories, and all that sort of thing. Still, it was an incredible gift to be able to talk about my child to my heart's content to other people who understood, related, and didn't mind, because they were talking about their kids to their own heart's content too.
I didn't feel as sad as I thought I might, either. Oh, not that I didn't feel sad, or that it wasn't painful to see other children like Joel, to be at a conference about them, and be sans Joel myself. I just had expected to be sadder. In truth, most of the time I was so happy to see my friends, and so happy to see the other children, that the sadness seemed small by comparison.
The conference was a wonderful gift. And we owe it all to the Brady Colbert Foundation for paying our way. We are very grateful.
I have a lot more to say about it, but as soon as we got home, I was totally wiped out. Whew. So much emotion and stuff. Steve and I are so tired now. So I'm doing a bit of laundry, we are buying some groceries, and we are just going to rest for a couple of days. And I will get back on here and write about Joel's birthday a bit later. And put up pictures, including one of Joel's new box for his memories. And some other stuff.
For now, I just wanted to share that we are back, that we loved the conference, it was good for us, and everything went just fine on our trip.
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