Wednesday, September 28, 2011
Permanent Maddie Bracelet
Here is my second (and hopefully last) tattoo. the heart is inspired by the heart shape in her ear. The script is inspired by the "maddie" signs my brother made to decorate her isolette at the hospital. At some point, I think it will get the entire tattoo shaded in a pale pink or a lavender, but for now, i'm just going to get use to looking at it every day and remembering my girl.
Sunday, September 25, 2011
Grief Support on Facebook
I just started a grief support group for CDH parents on facebook. Its a secret group (invite only). Please let me know if you want an invite or if you want to be an admin and invite others to join.
Grief Eaters
I feel compelled to keep writing. Today, not because I have much to share. But because 3 beautiful babies have died in the last 3 days and their mommies are hurting so much. Because, if you do the math, 100 babies in the US have died because of CDH since Maddie died. 100 babies have also survived this defect but still have mountains to overcome. Because I talk to these other mommies and learn from them and they say that they learn from me.
I’ve been thinking a lot about suffering and God and joy and faith. And I can accept that God has called my family to walk through this grief for His purposes. I can accept that I will heal and learn and hopefully, become a woman who isn’t so paralyzed by her sins. But I can’t accept that there is a purpose for Maddie’s suffering. I don’t know of anything that makes it ok for the innocent to suffer and then die. How is anything accomplished through this?
A wonderful CDH mom sent this article to me: http://www.irishtimes.com/newspaper/health/2011/0607/1224298494116.html#.Tn7JFTMJGdw
In the article, she talks about Grief Eaters, people who surround mourners and absorb some of their sorrow. I love this term (for more reasons then to obvious Harry Potter reference). I have been searching for it for weeks. I think i knew i needed Grief Eaters even before Maddie died. It was one of the reasons I was so confused when everyone offered to give me “space” I love my Grief Eaters! Everyone who comments on my posts, who pour their heart out over their own grief. Everyone who tries to make things better, knowing that they will fail miserably. Everyone that I have lashed out at over the past few weeks, in person and online and on the phone. Some of you deserved to be yelled at, but you still showed up to eat my grief.
There are days when i have enough reserve to be someone else’s grief eater and it feels good. Having not walked this road, you may think that taking on someone else’s burdens right now would be too much. But it gives me strength to know that i’m not entirely useless (despite my messy house and 3 straight days without leaving bed much at all). I do think it is important to know that my definition of suffering and burden have changed pretty dramatically over the past months. There are hardships, like being broke, losing a job and getting a bad hair cut. Losing a pet or the death of an acquaintance are harder hard ships. But suffering and burdens, those are all together different.
I’m reading A Grief Observed by CS Lewis. I recommend it just as it was recommended to me. Something that causes one to suffer is all consuming. There are no breaks from it while the suffering ensues. CS Lewis compares grief to losing a limb, somehow you learn to live a new life, but it different then before and the feeling of the missing limb never quite goes away. In fact, it still causes pain or itching. Even with a prosthetic, the limb never returns. I have never lost a limb, so I don’t know if this is altogether accurate but i do know that is how my grief feels. And when it comes, I can’t bear it alone and need my grief eaters.
Please remember the families of Baby Silas, Baby Nathaniel, and Baby Brayden today. I don’t know how the social ‘cliques’ in heaven form, but if there is a CDH playgroup, i look forward to the day when I get to hug all of these babies and whisper in their ears how much they are loved and missed as they play with my Maddie.
I’ve been thinking a lot about suffering and God and joy and faith. And I can accept that God has called my family to walk through this grief for His purposes. I can accept that I will heal and learn and hopefully, become a woman who isn’t so paralyzed by her sins. But I can’t accept that there is a purpose for Maddie’s suffering. I don’t know of anything that makes it ok for the innocent to suffer and then die. How is anything accomplished through this?
A wonderful CDH mom sent this article to me: http://www.irishtimes.com/newspaper/health/2011/0607/1224298494116.html#.Tn7JFTMJGdw
In the article, she talks about Grief Eaters, people who surround mourners and absorb some of their sorrow. I love this term (for more reasons then to obvious Harry Potter reference). I have been searching for it for weeks. I think i knew i needed Grief Eaters even before Maddie died. It was one of the reasons I was so confused when everyone offered to give me “space” I love my Grief Eaters! Everyone who comments on my posts, who pour their heart out over their own grief. Everyone who tries to make things better, knowing that they will fail miserably. Everyone that I have lashed out at over the past few weeks, in person and online and on the phone. Some of you deserved to be yelled at, but you still showed up to eat my grief.
There are days when i have enough reserve to be someone else’s grief eater and it feels good. Having not walked this road, you may think that taking on someone else’s burdens right now would be too much. But it gives me strength to know that i’m not entirely useless (despite my messy house and 3 straight days without leaving bed much at all). I do think it is important to know that my definition of suffering and burden have changed pretty dramatically over the past months. There are hardships, like being broke, losing a job and getting a bad hair cut. Losing a pet or the death of an acquaintance are harder hard ships. But suffering and burdens, those are all together different.
I’m reading A Grief Observed by CS Lewis. I recommend it just as it was recommended to me. Something that causes one to suffer is all consuming. There are no breaks from it while the suffering ensues. CS Lewis compares grief to losing a limb, somehow you learn to live a new life, but it different then before and the feeling of the missing limb never quite goes away. In fact, it still causes pain or itching. Even with a prosthetic, the limb never returns. I have never lost a limb, so I don’t know if this is altogether accurate but i do know that is how my grief feels. And when it comes, I can’t bear it alone and need my grief eaters.
Please remember the families of Baby Silas, Baby Nathaniel, and Baby Brayden today. I don’t know how the social ‘cliques’ in heaven form, but if there is a CDH playgroup, i look forward to the day when I get to hug all of these babies and whisper in their ears how much they are loved and missed as they play with my Maddie.
Friday, September 23, 2011
Thursday, September 22, 2011
The day Maddie died
There are several things about the day that Maddie died that I haven't shared publicly.
Most obviously are pictures. Luke and I have decided to keep all of her final pictures offline and share only with family and close friends. These are the most intimate reminders we have of her final hours and just have not come to a place where it feels right to publish them. But I do want to let you know that we have a lot of pictures of her from August 7th and that I am so grateful to Now I Lay Me Down to Sleep for being there when we needed them most and providing us with these precious keepsakes. Here is a shameless plug for the photographer who volunteered her services that night: http://www.photosbynano.com/
We also have a bunch of pictures of the funeral. I asked a friend from work to document the day, knowing that it would be a blur and I would need pictures to remember. He did a great job capturing not only the events of the day, but the emotions, special moments and relationships. Here is a shameless plug for him: http://www.facebook.com/randyandronphotography
There are some burdens from Maddie's death that weigh heavily on my shoulders. The night the PICC line started to leak, the night she failed her extubation, the night everything seemed to start spiraling out of control, was the first and only time Maddie had a nurse I did not trust. I knew i didn't trust her by 9PM, but didn't ask for a new nurse until 11PM. I stayed that night until 1AM. She was/is a good nurse. But she was very by the book, one thing at a time and easily distracted. I knew Maddie was a complex little girl and needed someone who could multi-task, think about consequences and trust her own judgement. This nurse was obsessing about how to set up Maddie's lines (IV, central and PICC) and charting. She seemed unaware of the respiratory problems I was witnessing, unconcerned or even defensive when I pointed them out. At one point, she completely left the room for about 2 minutes after having checked Maddie's breathing mask. She didn't notice (and neither did I for about 60 seconds) that the mask came off when she checked it and Maddie was struggling to do all of the work on her own.
Of course, the fact that she was obsessing about Maddie's lines turned out to be a good thing - I know she did her due diligence and the PICC line leak was not the result of flippant decisions. And once I spoke to the charge nurse at 11PM, Maddie's bed became the center of wonderful team work with at least 1, usually 2 nurses that I did trust helping in her care. When I left to go home, Maddie was stable, intubated and resting quietly. But it is likely her PICC line had already leaked up to 80 cc of TPN into her chest and I didn't notice either. I'm her mommy and I didn't know something was so wrong when I went to sleep that night.
I was able to discuss most of my concerns the next day with our favorite neonatalogist and one of our favorite nurses. Both of them felt confident that nothing I had been bothered by the night before contributing to Maddie's ongoing problems.
I don't blame this nurse (or anyone at UCSF for that matter) for anything that happened to Maddie. The staff at UCSF truly was phenomenal and even a bad nurse there is a great nurse elsewhere. But I do wonder if another nurse would have pushed to reintubated earlier in the evening. If another nurse would have noticed the leak sooner, taken different actions, done something to change the course of events. Something that would not have allowed Maddie's little body to be pushed so far that she had nothing left to give. Of course, these are questions that can never be answered but I have to work through in my grief in order to get to a place of acceptance.
The day Maddie died, I didn't get to the hospital until after 11AM. I slept in. Played with Dillan in the Ronald McDonald house playroom. I think I even took time to shave my legs that morning. Mom, Dillan and I were just dropping my brother off at the hospital before making a Target run when Luke called and told me to get there immediately. I hadn't planned on going in until after 3 or 4 that afternoon. I just didn't know how much ground she had lost. I had no idea how bad things really had gotten and that we were mere hours away from making the worst decisions of our lives.
We had the opportunity to do more for Maddie. We could have put her on ECMO (life support). But we were cautioned she may never come off of it and that her brain damage was already pretty severe. Placing her on ECMO at that point would have been considered "Medical Heroics." Defeated, we accepted this and made the decision to let her go. Now, I constantly wonder how bad the brain damage really was. Was it complete? Would she just be blind, maybe a little slow? Would she have had any quality of life worth living if we had done ECMO? Would a few days on ECMO have been enough for her to flush our the TPN on her own, recover from the pneumonia and start fighting her way back toward health? We never even asked about dialysis once they told us her kidneys were gone. Would that have helped? Questions I didn't have the sense to ask the doctors, but probably would still wonder about if I had.
As she was dying in our arms, for a moment she opened her eyes and moved a little. I can't remember exactly if she moved a hand or yawned or cried, but i remember her showing some signs of life. In what may have been her last moments of consciousness, her mommy didn't tell her it was ok and that I love her. I burst into tears and told her that she wasn't making it any easier. She had been in a medical coma since Saturday morning and these two things happened as the medication started to wear off. It wasn't until weeks later, when reading about the death of another precious baby, that I realized we never checked to see if she was still in there. We didn't test her reflexes or open her eyes to see if her pupils dilated. We didn't ask for a brain scan or ultrasound to see how much activity was still taking place.
I am left constantly wondering if we gave her enough of a chance to fight for herself. If we really did all that we could to give her every chance to live.
So I go back to the pictures. They remind me how far gone she really was that day. How ravaged her little body was by the time she died. That she really was a different baby, clearly sick, clearly exhausted, clearly dying. That as much I as torture myself with these what ifs and should ofs and how comes, there really were no other options. That we could have done more to sustain her body, but that Maddie was already gone, never to return.
There is more I need to say, but I am now exhausted. It will all have to wait until my mind can form what is left into words that my fingers can type.
Most obviously are pictures. Luke and I have decided to keep all of her final pictures offline and share only with family and close friends. These are the most intimate reminders we have of her final hours and just have not come to a place where it feels right to publish them. But I do want to let you know that we have a lot of pictures of her from August 7th and that I am so grateful to Now I Lay Me Down to Sleep for being there when we needed them most and providing us with these precious keepsakes. Here is a shameless plug for the photographer who volunteered her services that night: http://www.photosbynano.com/
We also have a bunch of pictures of the funeral. I asked a friend from work to document the day, knowing that it would be a blur and I would need pictures to remember. He did a great job capturing not only the events of the day, but the emotions, special moments and relationships. Here is a shameless plug for him: http://www.facebook.com/randyandronphotography
There are some burdens from Maddie's death that weigh heavily on my shoulders. The night the PICC line started to leak, the night she failed her extubation, the night everything seemed to start spiraling out of control, was the first and only time Maddie had a nurse I did not trust. I knew i didn't trust her by 9PM, but didn't ask for a new nurse until 11PM. I stayed that night until 1AM. She was/is a good nurse. But she was very by the book, one thing at a time and easily distracted. I knew Maddie was a complex little girl and needed someone who could multi-task, think about consequences and trust her own judgement. This nurse was obsessing about how to set up Maddie's lines (IV, central and PICC) and charting. She seemed unaware of the respiratory problems I was witnessing, unconcerned or even defensive when I pointed them out. At one point, she completely left the room for about 2 minutes after having checked Maddie's breathing mask. She didn't notice (and neither did I for about 60 seconds) that the mask came off when she checked it and Maddie was struggling to do all of the work on her own.
Of course, the fact that she was obsessing about Maddie's lines turned out to be a good thing - I know she did her due diligence and the PICC line leak was not the result of flippant decisions. And once I spoke to the charge nurse at 11PM, Maddie's bed became the center of wonderful team work with at least 1, usually 2 nurses that I did trust helping in her care. When I left to go home, Maddie was stable, intubated and resting quietly. But it is likely her PICC line had already leaked up to 80 cc of TPN into her chest and I didn't notice either. I'm her mommy and I didn't know something was so wrong when I went to sleep that night.
I was able to discuss most of my concerns the next day with our favorite neonatalogist and one of our favorite nurses. Both of them felt confident that nothing I had been bothered by the night before contributing to Maddie's ongoing problems.
I don't blame this nurse (or anyone at UCSF for that matter) for anything that happened to Maddie. The staff at UCSF truly was phenomenal and even a bad nurse there is a great nurse elsewhere. But I do wonder if another nurse would have pushed to reintubated earlier in the evening. If another nurse would have noticed the leak sooner, taken different actions, done something to change the course of events. Something that would not have allowed Maddie's little body to be pushed so far that she had nothing left to give. Of course, these are questions that can never be answered but I have to work through in my grief in order to get to a place of acceptance.
The day Maddie died, I didn't get to the hospital until after 11AM. I slept in. Played with Dillan in the Ronald McDonald house playroom. I think I even took time to shave my legs that morning. Mom, Dillan and I were just dropping my brother off at the hospital before making a Target run when Luke called and told me to get there immediately. I hadn't planned on going in until after 3 or 4 that afternoon. I just didn't know how much ground she had lost. I had no idea how bad things really had gotten and that we were mere hours away from making the worst decisions of our lives.
We had the opportunity to do more for Maddie. We could have put her on ECMO (life support). But we were cautioned she may never come off of it and that her brain damage was already pretty severe. Placing her on ECMO at that point would have been considered "Medical Heroics." Defeated, we accepted this and made the decision to let her go. Now, I constantly wonder how bad the brain damage really was. Was it complete? Would she just be blind, maybe a little slow? Would she have had any quality of life worth living if we had done ECMO? Would a few days on ECMO have been enough for her to flush our the TPN on her own, recover from the pneumonia and start fighting her way back toward health? We never even asked about dialysis once they told us her kidneys were gone. Would that have helped? Questions I didn't have the sense to ask the doctors, but probably would still wonder about if I had.
As she was dying in our arms, for a moment she opened her eyes and moved a little. I can't remember exactly if she moved a hand or yawned or cried, but i remember her showing some signs of life. In what may have been her last moments of consciousness, her mommy didn't tell her it was ok and that I love her. I burst into tears and told her that she wasn't making it any easier. She had been in a medical coma since Saturday morning and these two things happened as the medication started to wear off. It wasn't until weeks later, when reading about the death of another precious baby, that I realized we never checked to see if she was still in there. We didn't test her reflexes or open her eyes to see if her pupils dilated. We didn't ask for a brain scan or ultrasound to see how much activity was still taking place.
I am left constantly wondering if we gave her enough of a chance to fight for herself. If we really did all that we could to give her every chance to live.
So I go back to the pictures. They remind me how far gone she really was that day. How ravaged her little body was by the time she died. That she really was a different baby, clearly sick, clearly exhausted, clearly dying. That as much I as torture myself with these what ifs and should ofs and how comes, there really were no other options. That we could have done more to sustain her body, but that Maddie was already gone, never to return.
There is more I need to say, but I am now exhausted. It will all have to wait until my mind can form what is left into words that my fingers can type.
Sunday, September 18, 2011
Crisis? of faith
Again, another hard post to write. Something I’m not sure how to say. not sure how to put out there but need to share. In 2005, I was “born again”. Learned to love Jesus. Started to walk the holy path of righteousness. What ever you want to call it, you get the idea. And those of you who have walked with me before then and since then can attest to the fact that my life and my behavior, probably including my fundamental nature, changed dramatically. My salvation was so complete and so powerful that I have had very few moments where I doubted my faith. God made his presence known so strongly then that I could no more deny his existence then I could deny that i have two big toes. Until now.
Doubting God, lacking faith, being shook up...all normal after such a huge loss. And, if any of you are still doubters, losing a child is the biggest and hardest loss anyone can ever experience. And i really appreciate all of the prayers and encouragement, even from those of you who regularly say the stupidest things.
But here is the cold hard truth, almost everything I have learned about God in the past 6 years rings false right now, in this moment. So if I continue to believe, I have to relearn my God and my understanding of him. Perhaps this will bring me to a deeper relationship, more mature, a better person, a better Christian...who knows? Perhaps I will learn that God does not exist and its all been a fallacy. Every moment that I thought was real, every time i felt i heard his voice and was lead toward his will, a figment of my imagination. I don’t know.
but i do know that i have decided to not walk through this “crisis” in silence. I will not hide my doubts, my anger. If you choose to follow me, you are not allowed to read my words and say “see, i told you there is no god” because i don’t have the wisdom to bring you to that conclusion. and you are not allowed to read my blog and decided to love god simply because i have, that makes you stupid. and you definitely are not allowed to throw cliches at me meant to “encourage me in my walk”. please share your personal experiences. please share with me the meanderings of your heart and your mind. please share with me actual, Biblical wisdom, theology, background, context.
so right now, in my socks and sweats and this dog hair covered couch, i don’t understand how a loving and merciful God can exist in a world where beautiful babies die in their parents’ arms. in that same world where sick parents intentionally hurt or even kill their babies. again, those of you who know me know that a few things have been true about me since i was a very small child. and the biggest truth is that i have always wanted to be a mom. and i don’t understand how its possible that i was created with this heart for children, this very specific love for my children, that i have had since i was a very small child but still have my daughter ripped from my life. given this horrible defect, given some hope and then, shes gone.
cause the things is, no matter how much God understands my pain and weeps besides me, he had a choice. He chose to let his only begotten son die for all of his millions of nonbegotten (is that a word?) children. As any (normal, healthy, stable) parent will tell you, they will do anything to keep their children safe. There is nothing I would not freely give for my children, including my salvation. Madelyn and Dillan are it for me. There is nothing more important in any world. I didn’t have a choice. I wasn’t allowed to die so that Maddie could live. I wasn’t allowed to do anything except sit there and pray for a miracle that never came and i don’t understand why.
So here i sit trying to come to terms with her death. Trying to understand the Christian belief that everyone has a purpose and God has his reasons. And I have to say, it all feels like crap. Perhaps his purpose for Maddie was to use my words to further his kingdom (took the words right out of your mouth huh?). Well, la da dee. Maddie was more then that to me. And maybe one day, i’ll be better, stronger, wiser, whatever. Keep it and give me her. any silver lining, any positive that i can possibly imagine coming from her death pales in comparison to the reality of her alive. all of the outcomes are less then Madelyn Erin Spence.
Perhaps his reasons are too big and complex for me to understand here on this earth - well, try me. Break me with it God. Put the whole weight of it on my shoulders because nothing can be bigger or harder to carry around then the grief of watching my beautiful baby fight so hard just to die.
I”m trying to understand how she is whole and healthy and happy in Heaven. And i really do find great comfort in that image. BUt even Jesus needed his earthly mother for 33 years before he had completed his purposes to serve at God’s right hand. Jesus still needed to spend some time on this earth.
none of it makes sense. none of it is ok. there is no peace. i am constantly tormented. the world mocks me and my empty arms. So where is God? where is my unshakable faith? what the hell are any of us suppose to do in a world where babies can die and everything you thought you knew can vanish in a moment?
Doubting God, lacking faith, being shook up...all normal after such a huge loss. And, if any of you are still doubters, losing a child is the biggest and hardest loss anyone can ever experience. And i really appreciate all of the prayers and encouragement, even from those of you who regularly say the stupidest things.
But here is the cold hard truth, almost everything I have learned about God in the past 6 years rings false right now, in this moment. So if I continue to believe, I have to relearn my God and my understanding of him. Perhaps this will bring me to a deeper relationship, more mature, a better person, a better Christian...who knows? Perhaps I will learn that God does not exist and its all been a fallacy. Every moment that I thought was real, every time i felt i heard his voice and was lead toward his will, a figment of my imagination. I don’t know.
but i do know that i have decided to not walk through this “crisis” in silence. I will not hide my doubts, my anger. If you choose to follow me, you are not allowed to read my words and say “see, i told you there is no god” because i don’t have the wisdom to bring you to that conclusion. and you are not allowed to read my blog and decided to love god simply because i have, that makes you stupid. and you definitely are not allowed to throw cliches at me meant to “encourage me in my walk”. please share your personal experiences. please share with me the meanderings of your heart and your mind. please share with me actual, Biblical wisdom, theology, background, context.
so right now, in my socks and sweats and this dog hair covered couch, i don’t understand how a loving and merciful God can exist in a world where beautiful babies die in their parents’ arms. in that same world where sick parents intentionally hurt or even kill their babies. again, those of you who know me know that a few things have been true about me since i was a very small child. and the biggest truth is that i have always wanted to be a mom. and i don’t understand how its possible that i was created with this heart for children, this very specific love for my children, that i have had since i was a very small child but still have my daughter ripped from my life. given this horrible defect, given some hope and then, shes gone.
cause the things is, no matter how much God understands my pain and weeps besides me, he had a choice. He chose to let his only begotten son die for all of his millions of nonbegotten (is that a word?) children. As any (normal, healthy, stable) parent will tell you, they will do anything to keep their children safe. There is nothing I would not freely give for my children, including my salvation. Madelyn and Dillan are it for me. There is nothing more important in any world. I didn’t have a choice. I wasn’t allowed to die so that Maddie could live. I wasn’t allowed to do anything except sit there and pray for a miracle that never came and i don’t understand why.
So here i sit trying to come to terms with her death. Trying to understand the Christian belief that everyone has a purpose and God has his reasons. And I have to say, it all feels like crap. Perhaps his purpose for Maddie was to use my words to further his kingdom (took the words right out of your mouth huh?). Well, la da dee. Maddie was more then that to me. And maybe one day, i’ll be better, stronger, wiser, whatever. Keep it and give me her. any silver lining, any positive that i can possibly imagine coming from her death pales in comparison to the reality of her alive. all of the outcomes are less then Madelyn Erin Spence.
Perhaps his reasons are too big and complex for me to understand here on this earth - well, try me. Break me with it God. Put the whole weight of it on my shoulders because nothing can be bigger or harder to carry around then the grief of watching my beautiful baby fight so hard just to die.
I”m trying to understand how she is whole and healthy and happy in Heaven. And i really do find great comfort in that image. BUt even Jesus needed his earthly mother for 33 years before he had completed his purposes to serve at God’s right hand. Jesus still needed to spend some time on this earth.
none of it makes sense. none of it is ok. there is no peace. i am constantly tormented. the world mocks me and my empty arms. So where is God? where is my unshakable faith? what the hell are any of us suppose to do in a world where babies can die and everything you thought you knew can vanish in a moment?
Wednesday, September 14, 2011
The Money Blog
i’ve been wanting to talk about the financial impact of Madelyn’s illness and death but i’ve been hesitating quite a bit. One reason I’ve hesitated is that I don’t want to seem like I’m hinting that we need money and trying to pull heart strings to get some. We are doing ok, even with all i’m about to share. another reason is because it is pretty taboo to talk openly about personal finances. But i think that with everything else i have shared openly on my blog, money is the least intimate.
The big reason i want to write this is for the friends and families of other sick children who are following our blog. I want to give context to all of the fundraisers, loans and hard times that are left once a family finally comes home, with or without their baby.
Madelyn’s medical bills totaled close to $1.9 million. My medical bills, including all of my prenatal treatments were close to $100,000. We have good insurance, so our out of pocket is less then $5000, most of which will come out of our HSA.
Additional out of pocket expenses include about $4500 in living expenses while Madelyn was in the hospital. Hotel, travel, food, incidentals. This is on top of our normal mortgage and bills. This does not include all of the money that our friends and family spent in their support of us, but if it did, I image the total would be closer to $8000 or $9000.
Madelyn’s funeral expenses will end up being somewhere close to $4000 once we buy and install a headstone for her. And finally, Luke and I both took the summer off of work, losing about $11,000 in wages. I would have taken the summer off even if Maddie had been healthy, but I don’t make even a third of what Luke makes teaching over the summer.
Like I said, we are doing ok. We knew this was coming and we saved a substantial sum ahead of time. During Maddie’s life and right after her death, we received many generous donations which have helped more then I can say. All in all, we are fairly close to breaking even and hope to start saving again soon. We work daily to honor the intentions behind the donations and are not indulging in much that could be considered frivolous (except maybe an occasional starbucks and my new tattoo).
I think about some of the people I have met through CDH and know that their expenses are comparable to ours, but they didn’t have a chance to save ahead of time. They do not have the support network we have. They still have very sick children who will continue to be expensive for years to come. They ran their own business, were in school or lost their job, completely losing any income they had before their child was born. They are also very modest and humble and grateful for what they do have and would never ask for more.
I think about how I thought of long illnesses before Maddie came and assumed that people just meant medical expenses when they talked about the financial burden. And I assumed that insurance would cover most of that financial burden. It’s hard to imagine how “living” within the confines of a hospital can be so expensive day to day.
I want to close with this: if you are a friend or family member of another sick child, please throw yourself into supporting them. I know you are doing it emotionally. Maybe physically. But if they hold a fundraiser, do more then show up to support them. Dig deep and do without for a while to help them make ends meet. If they aren’t throwing a fundraiser, consider organizing one for them.
Thursday, September 8, 2011
Assimilating Maddie
Figuring out how to include Madelyn in our family, even though she is not physically with us, is a part of this grieving process. I’ve read that several times. I’ve heard it from all of my doctors and confidants. She has a place in our family and finding out where and what that is will help us to think of her without our hearts breaking. We will one day be able to embrace all of the moments where her life was pure joy and not be so overwhelmed by the hurt. At least that is the plan even if it is not where we are now.
I think that I’ve felt that I need to separate Maddie from her CDH in order to include her in our lives going forward. I often said during my pregnancy that I wasn’t going to let CDH define her life. That we would walk the CDH road and then, hopefully, get to a point where we could put it aside and just let her define herself. But I’m realizing that she was here such a short time and that her illness was such a big part of her life, that there is no separating the two. To mourn her is to mourn our brief home in the ICN. Our short friendships with the medical staff. Taking care of her involved some diaper changing and holding, but also involved hours of research, testing and immersing ourselves into a medical culture that would help us make the best decisions for her. We are slowly having to let all of that go.
Madelyn had her own life, her own spirit, her own body, all of which were, and will forever be defined by CDH - at least on some level. We know she was feisty and she was a fighter by all of the things she was able to overcome and pull through. We know she was alert and curious. We know she wanted to be loved and touched and demanded to be the center of attention. She was able to show us all of this through her illness, because of CDH, not in spite of it.
So I have to learn to process that. To really accept that there will be few times where I can remember Maddie and not remember the tubes, wires, sounds and smells of the hospital and that is ok. That it is ok for us to remember her exactly as she was and how she lived and not have to focus on the hard parts. If it were me, I wouldn’t want my last heartbreaking moments to stand out more then all of the wonderful, cherish-able moments.
I’m still struggling to figure out every day things. Yesterday I sent a birthday card and decided to include Madelyn in the signature block. I don’t know if I’ll always do that, but it felt right just then. I’m also rehearsing my answer for the first time someone ask me how many children I have or if someone asks me how my baby is doing. Although I don’t have the perfect words yet, I have a few scenarios and each time I run through them, the panic subsides a little bit.
i’m also writing for myself now. Well, technically, I’m writing to Maddie, for Maddie, about Maddie. And although I don’t edit myself much when I blog, i find that my tone is different when I write to her. Both methods are therapeutic, but my letters to Maddie are much more impulsive and abstract, disjointed. Although we still feel the love and support from everyone, the overwhelming display of it stopped about 10 days ago (3 weeks after she died). Incidentally, this is also when my milk dried up and when I started to feel like other people where silently begging me to stop talking about her and grieving so publicly. This last part may or may not be true, but my private journal has given me a place to expend all of that emotional energy without having to think about how it’s being perceived.
This morning was my postpartum check up with my regular OB. Without using as many words as he did, he was able to confirm what I already knew in my heart - we will be ready for more children physically before we are ready emotionally. He does not feel that we will need to manage my subsequent pregnancies as if they are high risks, although we will do more testing then a normal pregnancy just to reassure us all. He also doesn’t feel the need to put a limit on how many more c-sections i can have. We aren’t sure about how many more, if any, biologically kids we will actually have. But knowing that we aren’t limited, medically speaking, is reassuring in and of itself.
So I image when we feel like we aren’t just surviving any more, when the grief isn’t so big it takes up our whole world, when we can remember Maddie without falling apart and when we are strong enough to face another pregnancy and all of the associated risks of any pregnancy, we’ll start talking about having more kids. I don’t know if that will be 6 months or 6 years, but probably washing a sink full of dishes without melting down is a milestone that i will have to reach first.
This morning I sent off paper work requesting all of our level 2 ultrasounds, all of Maddie’s chest x-rays and her complete medical record. I also sent off paperwork to the milk bank authorizing them to donate all of the milk i pumped for Maddie to an ICN. Both of these things help me to validate her life. The records are something tangible and official I can hold. I can pour over and remember every day of her life. The milk proves to me that she had a life worth living and worth fighting for, and now, another baby will benefit from her life. Will grow and thrive.
Sunday, September 4, 2011
Grieving in America
Today I had a great long talk with Luke's grandma. She is 80, has lived enough life to fill several books and has an amazing love for the Lord. A lot of what we talked about I will hold quietly in my heart. But we talked about how when she was growing up in Ireland, people would wear black clothes and arm bands when they were grieving. We talked about how hard it is just to live and interact while grieving and that you are not yourself. You are not sane. And you are exhausted.
This afternoon, I've spent some time thinking about how horrible we are at death in America. Man, I wish i had thought to wear a black arm band this last month. Not everyone would have gotten it, but those who did might not have looked at me so crazy when i walked through target with tear stained cheeks and crazy hair. They may have been slower to criticize my parenting as my traumatized 2 year old threw a tantrum in the middle of the "scary" post office.
i think about how my grandfathers died - in nursing homes or hospitals. then transported to funeral homes then to the cemetery. how my daughter died. i feel like we've lost some of our humanity by allowing death to become so industrialized. in california, there are no laws that say dead bodies have to be in morgue refrigerators or funeral homes while they wait to be buried. no laws that say you have to transport those bodies in hearses (although you do need a permit and big car to do it yourself). no laws that say you can't bath, dress and hold your loved ones after they die. 100 years ago, taking care of our own dead was common. showing respect and love and nurturing to their bodies was common.
i know this is what hospice care is all about and that more and more people are doing things the "old fashioned" way. And i think its beautiful. i think its necessary. but i also know its not something any of us think about until we are in crisis mode. but having been there and seen death and kissed her lips, i can tell you it is not something to be afraid of. it is not something to hide and let the "professionals" deal with it. it is incredibly healing and loving and tragic to put all you have into helping someone die peacefully and comfortable and warm and safe, surround by loved ones.
i think there are some things that our great-grandparents did much better then we do. and i think dying was one of those things. (i also think eating is one of those things, but that's another blog/book in the making)
Thursday, September 1, 2011
I just signed the petition "To increase research to save 1600 babies born each year with Congenital Diaphragmatic Hernia." and wanted to see if you could help by adding your name.
Our goal is to reach 500 signatures and we need more support. You can read more and sign the petition here:
http://www.change.org/petitions/to-increase-research-to-save-1600-babies-born-each-year-with-congenital-diaphragmatic-hernia
Thanks!
Lisa
Follow this Link to Sign the Petition
Our goal is to reach 500 signatures and we need more support. You can read more and sign the petition here:
http://www.change.org/petitions/to-increase-research-to-save-1600-babies-born-each-year-with-congenital-diaphragmatic-hernia
Thanks!
Lisa
Follow this Link to Sign the Petition
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