The following is the eulogy that I read at my son Gabriel's funeral, held on June 27, 2011:
Ben and I would like to thank you all for being here to honor our son, Gabriel Michael Gerard Cude.
A year and a half ago, Ben and I stood before this same altar to be married. We were so full of hope and promise then, as we looked to our future as a family. In that year and a half we have lived a lifetime - Gabriel's lifetime. Today we are here for our son's funeral, but we still have hope. There is still promise, because one of the many gifts that Gabriel gave to us was a message of hope where there is despair.
Much has been made of the fact that Gabriel lived for nearly ten days after he was born, but Gabriel was alive for nine months before that, developing likes and dislikes and a personality that would help him when he was born. Though it never mattered to us whether Gabriel was a boy or a girl, we learned that he was in fact a boy, and he was given a very special name. We introduced him to you, and you grew to know him and love him and respect him for the unique individual that he is. He was alive to all of you before you'd ever even laid eyes on him. Most of you never met Gabriel in person, yet here you are, celebrating his life, the life of a little boy who in nine months and ten days, changed the way many of you viewed what it means to be alive.
Gabriel re-defined beauty. Those of you that saw him, or pictures of him, know that he was born without the top portion of his skull. His brain was exposed and for several days he wore no cap or dressing that would hide his defect. But you did not run from him. You embraced him, looked at him and marveled at how strangely beautiful he was. You looked past his defect to enjoy things like his perfect lips, his big feet, or his unexpected blonde hair. You grew to love his face, which never quite looked like the face of a newborn. Gabriel had the mature look of someone that was wise beyond the minutes, hours, or days he lived on earth. I'll remember always te day a friend brought her seven year old son to meet Gabriel. He was in awe of Gabriel, and touched his face lovingly saying over and over, "Hi Baby." I asked him if he saw that Gabriel looked different. He said yes, so I asked if it bothered him and he shook his head. To him, Gabriel was not flawed, he was just a baby.
Gabriel had his Daddy's quiet strength and his Mommy's strong will. For ten days he put those character traits to use, beating the odds and surviving longer than expected and longer than most babies with anencephaly do. It was the most spectacular ten days of our lives as he taught us so much about the kind of people we want to be. When someone dies, we like to be comforted with words like "He went peacefully," but Gabriel did not go peacefully. He struggled with seizures that caused him to have trouble breathing, but he did not give up. He died fighting, railing against death and forcing it to take him kicking because he would not go willingly. And as hard as it was to watch, I am proud that, in a world where to many give up on life, Gabriel fought to keep living.
Upwards of 90% of babies like Gabriel never get the chance to live outside of their mothers' wombs. That means they never get the chance to touch a church full of people -- and more than a church full; Gabriel was prayed for and his story is known across the country and all over the world. And you in turn will tell people of the miracle of even a short life. I often speak of Gabriel's life as ten days that changed the world. Some of you hugged your children a little closer or looked at their crying as a gift rather than a demand. Some of you told me you would do things differently, things in your past or in making future decisions. It was my dream for Gabriel that in his short time on earth he would do what politics cannot do, and that is change people's hearts. You are all forever changed beause Gabriel lived, you are different people now who will love differently and live differently because no matter how long he lived, HE STILL LIVED. It was our honor, and our pleasure to witness the miraculous life of Gabriel Michael Gerard Cude.
Tuesday, June 28, 2011
Saturday, June 25, 2011
A Wedding and a Funeral
Funerals are a sort of hobby for me. The first one I can remember attending was my grandpa's when I was almost ten years old. It was a solemn occassion with lots of tears and sadness. There was a traditional Catholic Mass followed by a graveside service. By the time I was in high school, three of my four grandparents had passed away already, and each of their funerals were similar.
In September of 2004 my last grandparent passed away, my paternal grandpa, which kicked off a year of funerals for me. At the time I was dating Sean, who declined to come to the funeral saying he didn't want to meet my extended family for the first time at a funeral. The next funeral I attended was Sean's. Though I'd become quite familiar with death and funerals by that point, Sean's was a whole new experience. I'd never said good-bye to someone my own age, and it was even stranger that the someone was my boyfriend. I was 23 years old, and I'd been through a traumatic experience, having been the person to discover Sean's suicide on Valentine's Day of all days. Sean and I were a couple, best friends, and part of me was missing without him. But I had nothing to do with planning his funeral.
Actually, what Sean had was a memorial service. It was the first time I'd attended such an event. Sean was cremated -- I'd never seen that before. There wasn't much formality at his memorial service either. I sat with Sean's parents and the rest of their family, apart from my own friends and family who were in attendance. The eulogies were by open invitation. I'd written my own eulogy out, but many of them were just people's impromptu sharing. And I guess what I remember the most was the music. Rather than church music, pop songs were played, and I remember clearly all three of them and how they related to Sean. The music just sort of played, unlike a Catholic funeral where music is played deliberately at certain times.
The experience of Sean's funeral changed me. I had always known that funerals could provide a kind of closure, but it didn't occur to me that they could actually be personal. I was surprised that I wasn't bothered that there was no body. In fact, I guess I had never realized what a distraction having a body there was for me in the past. I thought, for the first time, that it didn't matter that there was no body because Sean no longer occupied that body anyway. What a revelation that was for me!
That year I attended several more funerals, first my Uncle Tommy's, then one of the bar regulars, old Kenny Lisenbee. That summer another young regular named Scotty, who was Sean's age, also committed suicide and I attended his service as well. I finished the year of funeral's off with my boss Charly's funeral, held almost exactly one year after my grandpa's had been held. It occurred to me then that funerals were no longer very sad occassions for me. They were just kind of something I did, because death is just kind of part of life. While I still cried at many of them, at others I did not. Attending funerals became for me a way to do one last thing for the person who had died, and also something to show the family of the departed that their loved one mattered to one more person.
For months I have been planning Gabriel's funeral. I knew it would be necessary one day, and that no matter how long he lived that funeral would be necessary sooner than I would want. Any time a parent has to plan a funeral for their child it is sooner than that parent would want. Still, I find comfort in being able to plan the perfect event for Gabe. We decided some time ago that Gabriel would be cremated, and when we passed his lifeless body on to the funeral home, it struck me that soon that body would be ashes but I was not bothered. His spirit had already moved on. I did not want the distraction of that hollow body at his funeral. I wanted to be able to enjoy the solemn beauty of the Mass that would be offered for him, and to enjoy the special music that we picked for his special day.
When Gabriel's Mass is over, Ben and I will take his ashes back to our home until the day when we privately inter them, just the two of us and priest. But at our home a celebration will be held. We have been cleaning our house and giving our lawn extra water to look extra nice for Gabriel's guests. Ben has planned the food, friends and family have offered to bring side dishes. We are looking forward to a beautiful celebration of Gabriel's life.
I was a little reluctant to take time out today from our funeral planning to attend a co-worker's wedding, but as I wavered on whether or not to go I thought it was an important time for Ben and I to witness a wedding, and to remind ourselves of our own love and how young and new it still is. Lisa and Mike, whose wedding we will be attending, met in the bar where Lisa and I work, just as Ben and I met in the bar I was working at in law school. Though I knew the dangers of dating a patron, I also knew I liked Ben a lot. I grew to love Ben, and I love our story of two lonely hearts looking for love in a place where it can be hard to find. Today as I witness Lisa and Mike's marriage, I will remember the hope and the promise Ben and I felt on our own wedding day. That hope and promise are still very much alive, despite the fear and the pain we are currently working through. I will pray that hope and promise and love will carry us.
In September of 2004 my last grandparent passed away, my paternal grandpa, which kicked off a year of funerals for me. At the time I was dating Sean, who declined to come to the funeral saying he didn't want to meet my extended family for the first time at a funeral. The next funeral I attended was Sean's. Though I'd become quite familiar with death and funerals by that point, Sean's was a whole new experience. I'd never said good-bye to someone my own age, and it was even stranger that the someone was my boyfriend. I was 23 years old, and I'd been through a traumatic experience, having been the person to discover Sean's suicide on Valentine's Day of all days. Sean and I were a couple, best friends, and part of me was missing without him. But I had nothing to do with planning his funeral.
Actually, what Sean had was a memorial service. It was the first time I'd attended such an event. Sean was cremated -- I'd never seen that before. There wasn't much formality at his memorial service either. I sat with Sean's parents and the rest of their family, apart from my own friends and family who were in attendance. The eulogies were by open invitation. I'd written my own eulogy out, but many of them were just people's impromptu sharing. And I guess what I remember the most was the music. Rather than church music, pop songs were played, and I remember clearly all three of them and how they related to Sean. The music just sort of played, unlike a Catholic funeral where music is played deliberately at certain times.
The experience of Sean's funeral changed me. I had always known that funerals could provide a kind of closure, but it didn't occur to me that they could actually be personal. I was surprised that I wasn't bothered that there was no body. In fact, I guess I had never realized what a distraction having a body there was for me in the past. I thought, for the first time, that it didn't matter that there was no body because Sean no longer occupied that body anyway. What a revelation that was for me!
That year I attended several more funerals, first my Uncle Tommy's, then one of the bar regulars, old Kenny Lisenbee. That summer another young regular named Scotty, who was Sean's age, also committed suicide and I attended his service as well. I finished the year of funeral's off with my boss Charly's funeral, held almost exactly one year after my grandpa's had been held. It occurred to me then that funerals were no longer very sad occassions for me. They were just kind of something I did, because death is just kind of part of life. While I still cried at many of them, at others I did not. Attending funerals became for me a way to do one last thing for the person who had died, and also something to show the family of the departed that their loved one mattered to one more person.
For months I have been planning Gabriel's funeral. I knew it would be necessary one day, and that no matter how long he lived that funeral would be necessary sooner than I would want. Any time a parent has to plan a funeral for their child it is sooner than that parent would want. Still, I find comfort in being able to plan the perfect event for Gabe. We decided some time ago that Gabriel would be cremated, and when we passed his lifeless body on to the funeral home, it struck me that soon that body would be ashes but I was not bothered. His spirit had already moved on. I did not want the distraction of that hollow body at his funeral. I wanted to be able to enjoy the solemn beauty of the Mass that would be offered for him, and to enjoy the special music that we picked for his special day.
When Gabriel's Mass is over, Ben and I will take his ashes back to our home until the day when we privately inter them, just the two of us and priest. But at our home a celebration will be held. We have been cleaning our house and giving our lawn extra water to look extra nice for Gabriel's guests. Ben has planned the food, friends and family have offered to bring side dishes. We are looking forward to a beautiful celebration of Gabriel's life.
I was a little reluctant to take time out today from our funeral planning to attend a co-worker's wedding, but as I wavered on whether or not to go I thought it was an important time for Ben and I to witness a wedding, and to remind ourselves of our own love and how young and new it still is. Lisa and Mike, whose wedding we will be attending, met in the bar where Lisa and I work, just as Ben and I met in the bar I was working at in law school. Though I knew the dangers of dating a patron, I also knew I liked Ben a lot. I grew to love Ben, and I love our story of two lonely hearts looking for love in a place where it can be hard to find. Today as I witness Lisa and Mike's marriage, I will remember the hope and the promise Ben and I felt on our own wedding day. That hope and promise are still very much alive, despite the fear and the pain we are currently working through. I will pray that hope and promise and love will carry us.
Thursday, June 23, 2011
Freedom to Love
Mine is not a family that says "I love you" often. The love is there, and stronger than it is in many families, I believe. It's just not something we said often, it was always just understood.
After Sean died six years ago I realized that we'd each only said "I love you" to each other once, that our relationship had also been based on a mutual understanding that those feelings were there. I made a commitment then to always say how I felt about someone, but the commitment didn't last because the world I was living in simply didn't welcome such an open expression of emotion. When Ben and I were dating, he was the first to say "I love you." I knew I'd felt it too, but I was reluctant to say it. My upbringing didn't require me to say it, and years of dating had taught me that those were words one should not say too swiftly for fear of running a man off. "I love you" had gone from something that didn't need to be said to something to avoid saying at all.
Some might say I was defective or emotionally stifled. I've never felt there was anything wrong with me because of my inexperience at saying the words, because I knew I felt love. However, I wanted my own children to hear "I love you" and to hear it often. But during Gabriel's time on earth, even knowing how short it was likely to be, I had to remind myself to say it out loud to him. I trust that he knew love, but I wanted to be sure it was said.
Meanwhile, I noticed a change in how I interacted with others. After years of a simple understanding of love, my parents and I started saying it out loud with more frequency. I also took note just today of another change in me. In my interactions with other anencephaly mommies who I've met online, I noticed that many of us say "I love you" to each other very often. These are women I have never met in person, and who I have known, at the earliest, since February when I joined an online support group. Yet we frequently say those words that had eluded me, often subconsciously, for years. We say that we love each other, we say that we love each other's children. We call each other sisters, and say things like "We're in this together," and "Though I am far away I am standing beside you." Just one year ago this would have felt strange to me, but I realize now that Gabriel gave me the capacity to love, and to express that love, in a way that I never loved before.
I can honestly say that I loved Gabriel just as much before he was born as I did the day he died. I loved him before he was ever even conceived. I've lived my life waiting for him, and for Baby Cude, and for any brothers and sisters that follow, though I didn't even know they were missing from my life. That love has always been there. I was made to love them.
I thank all of my children, those conceived and already moved on to Heaven, and those yet to be known by me, for opening my heart and giving me the freedom to love.
Recently I was saddened to learn of a woman whose unborn baby was diagnosed with anencephaly. I do not know her, I was told of her case through a friend who was surprised to know two women effected by anencephaly so close together. My heart was broken to learn that as we were speaking of her, she was in the hospital, having elected early induction of labor. I remember her fear, I remember the shock of the diagnosis, and I remember wondering what to do. Ultimately I made the decision that was morally right for Gabriel and the one that was right for my eternal soul, but I had no idea how Ben and I would possibly get through this time. I had no idea how my life on earth would be enriched and made better by carrying Gabriel to term. People say that we made a selfless decision, but that's not entirely true. The fear of going to Hell is a tremendous motivation for a faithful Catholic and it was certainly a factor in my own decision. Now, when I reflect on the way I am now able to relate to other people I am amazed that such beauty could come from such sadness. My heart aches, but it is somehow made bearable by the way I have been opened to love. I have learned to lean on people and to let them love and take care of me and it feels good to be loved. Though no one, not a new puppy, not a future child, no one can replace Gabriel, I can find solace in the newfound friendship and love that I am now experiencing. Gabriel did more for me than I did for him and if there was one thing I could tell any woman standing on the edge of an anencephaly diagnosis, it would be "Do it for yourself, because you will be rewarded."
After Sean died six years ago I realized that we'd each only said "I love you" to each other once, that our relationship had also been based on a mutual understanding that those feelings were there. I made a commitment then to always say how I felt about someone, but the commitment didn't last because the world I was living in simply didn't welcome such an open expression of emotion. When Ben and I were dating, he was the first to say "I love you." I knew I'd felt it too, but I was reluctant to say it. My upbringing didn't require me to say it, and years of dating had taught me that those were words one should not say too swiftly for fear of running a man off. "I love you" had gone from something that didn't need to be said to something to avoid saying at all.
Some might say I was defective or emotionally stifled. I've never felt there was anything wrong with me because of my inexperience at saying the words, because I knew I felt love. However, I wanted my own children to hear "I love you" and to hear it often. But during Gabriel's time on earth, even knowing how short it was likely to be, I had to remind myself to say it out loud to him. I trust that he knew love, but I wanted to be sure it was said.
Meanwhile, I noticed a change in how I interacted with others. After years of a simple understanding of love, my parents and I started saying it out loud with more frequency. I also took note just today of another change in me. In my interactions with other anencephaly mommies who I've met online, I noticed that many of us say "I love you" to each other very often. These are women I have never met in person, and who I have known, at the earliest, since February when I joined an online support group. Yet we frequently say those words that had eluded me, often subconsciously, for years. We say that we love each other, we say that we love each other's children. We call each other sisters, and say things like "We're in this together," and "Though I am far away I am standing beside you." Just one year ago this would have felt strange to me, but I realize now that Gabriel gave me the capacity to love, and to express that love, in a way that I never loved before.
I can honestly say that I loved Gabriel just as much before he was born as I did the day he died. I loved him before he was ever even conceived. I've lived my life waiting for him, and for Baby Cude, and for any brothers and sisters that follow, though I didn't even know they were missing from my life. That love has always been there. I was made to love them.
I thank all of my children, those conceived and already moved on to Heaven, and those yet to be known by me, for opening my heart and giving me the freedom to love.
Recently I was saddened to learn of a woman whose unborn baby was diagnosed with anencephaly. I do not know her, I was told of her case through a friend who was surprised to know two women effected by anencephaly so close together. My heart was broken to learn that as we were speaking of her, she was in the hospital, having elected early induction of labor. I remember her fear, I remember the shock of the diagnosis, and I remember wondering what to do. Ultimately I made the decision that was morally right for Gabriel and the one that was right for my eternal soul, but I had no idea how Ben and I would possibly get through this time. I had no idea how my life on earth would be enriched and made better by carrying Gabriel to term. People say that we made a selfless decision, but that's not entirely true. The fear of going to Hell is a tremendous motivation for a faithful Catholic and it was certainly a factor in my own decision. Now, when I reflect on the way I am now able to relate to other people I am amazed that such beauty could come from such sadness. My heart aches, but it is somehow made bearable by the way I have been opened to love. I have learned to lean on people and to let them love and take care of me and it feels good to be loved. Though no one, not a new puppy, not a future child, no one can replace Gabriel, I can find solace in the newfound friendship and love that I am now experiencing. Gabriel did more for me than I did for him and if there was one thing I could tell any woman standing on the edge of an anencephaly diagnosis, it would be "Do it for yourself, because you will be rewarded."
Wednesday, June 22, 2011
Angel Day
Gabriel did not open his eyes much in the ten days that he lived, but the morning he passed they were open wider and longer than they had ever been. That's because he spent the morning in a series of seizures. The first major seizure occured at about seven in the morning. He was sleeping on the couch when Ben looked at him and saw that he had turned purple. Ben quickly picked him up, examined him, and thought that maybe he had passed. I demanded that he give Gabriel to me, then I remembered the oxygen tank, which only Ben had learned how to use. Ben placed the mask over Gabriel and started the tank, but it didn't seem to be working. Eventually, Gabriel started breathing on his own, his eyes opened wide as he gasped for air. We didn't set him down the rest of the morning.
I hadn't eaten in nearly a day, so Ben held Gabriel while I had a bowl of cereal, then I set myself up on the couch and sat down with Gabriel. After another seizure we made the decision to administer a dose of the morphine we had been provided by hospice. We gave him slightly less than what he had been prescribed. We wanted him to be able to relax, but we didn't want him to go to sleep on us. When the morphine didn't seem to make things any easier on him, we called hospice, and our nurse put in a rush request for an anxiety medication to help with his seizures. She came over as soon as she could, but Gabriel had already had several seizures at this point, each more severe than the last. His face would turn purple, his lips would get purple and tight, and his tongue would fall out of his mouth while his eyes opened wide, staring at nothing that we could see as we believe he was born blind. Sometimes I let myself believe that he was able to see God or an angel, and that was providing him some comfort.
We held him through his seizures, stroking and talking to him, and encouraging him to breathe when he stoppted. He had to be held as upright as possible to facilitate his breathing. We told him how much we love him, and thanked him for coming to us and being so strong. We told him he didn't have to fight anymore, that he was headed to a wonderful place and that we would be along before he knew it. We sang to him, read him a story, and just loved him. We knew his time was drawing to a close and we were flooded with mixed emotions. How could we let him go? But how could we ask him to stay when he was struggling so much.
I sincerely believe God doesn't let babies feel pain. Gabriel struggled, but that struggle was for us. We couldn't be granted so much time without having to give something back. Gabriel's time meant a passing that was difficult to watch. I believe I needed to see that to understand that it was time for him to go. I'd known for a while that he wasn't mine to keep but I think in those ten days I started to think maybe I could keep him.
Our hospice nurse Jennifer arrived with the anxiety medication. She gave him his first dose and told us another could be given in four hours. I didn't think we would need it in another four hours. Jennifer advised us that we were probably seeing the transition we had read about. We nodded. We knew.
Jennifer left and Gabriel was relaxed for a while. I stroked his face while Ben held his hand and I told him to relax, to sleep. I hoped he would fall asleep and peacefully take his last breath. When I wasn't in conversation with Gabriel, I was silently pleading with God to take my son quickly and peacefully.
It wasn't long after Jennifer left that Gabriel had his final seizure. Again his eyes opened wide, and he began choking and struggling to breathe. Again his face turned purple, his lips tightened, and his tongue fell out of his mouth. Again, Ben had to check his chest for a heartbeat or breathing, as we could no longer feel it from his back as we had been able to for the past few days. We waited, and waited, but this time his breathing did not resume. His face was frozen in a gasp. He was gone.
We laid him on my pillow and Ben called hospice. And then we went to work.
I asked Ben to clear off the table and spread his quilts on it. We laid Gabriel on the quilts and Ben lit a candle for him. I whispered to Gabriel that Daddy was lighting his way to Heaven. We took out the memory boxes we had been given for him and prepared to wash and dress him one last time. We took several more ink footprints. We called our parents and reported Gabriel's death. My parents and brother came to say good-bye.
While Jennifer and my parents were there we wiped Gabriel down first with a baby wipe, then with lavender scented water on a handkerchief provided in the memory box. The handkerchief was then folded and placed in a sachel. We dressed him in a sleeper and wrapped the St. Gerard medal that I'd been wearing for months on a chain around his hand. He was given his mini-Bible to hold, and pinned with a Holy Spirit pin. A St. Gerard prayer card was also placed on his chest. We considered capping him or wrapping his head again, but ultimately decided he was perfect the way he was. We kissed him and held him throughout this process.
Lividity began to set in. Gabriel's color drained from him and settled at the back of his body. He was stiff, and his eyes would not close all the way nor would his face be smoothed out. You could see the look of strain in his face. I was surprised at the ease with which I was able to hold him in this time. I'd never touched a dead body that had not been preserved already, but I could not set him down.
I looked at Gabriel's strained face with pride. He would not go without a fight. His strength was a quiet one, a simple refusal to go anywhere until he was ready. He took his time coming into this world, and then he had railed against death, forced it to take him in a battle that was fitting of his name. Gabriel. A hero of God. God is my strength.
Monday, June 20, 2011
All He Knew Was Love
Life's just begun,
Think I'm gonna have a son.
He will be like she and me as free as a dove,
conceived in love,
Sun is gonna shine above.
And even though we ain't got money
I'm so in love with you honey
And everything will bring a chain of love.
In the morning when I rise
You bring a tear of joy to my eyes
And tell me everything is gonna be alright.
I sang this verse of "Danny's Song" to Gabriel frequently while I was pregnant with him, and in his ten days on earth. I sang it to him again just this morning. In his short life, all he ever knew was love. He was held close by me for 40 weeks, and held in our arms for most of his life. When he breathed his last breath he was in our arms. He was dressed and held even after his spirit was gone. He is the product of love, and he is love, and that is how we know everything is gonna be alright.
Gabriel Michael Gerard Cude passed away at approximately 12:15 on Monday, June 20th, 2011 after ten days that forever changed the world. The world is a different place because he lived. You and I are different people because he existed. Heaven is a little sweeter now that he is there. And Ben and I are simply blessed.
Saturday, June 18, 2011
Dr. Suess Was a Doctor
I find Golden Girls references to be fitting for most occassions. In an episode in Season 5, Dorothy suffers from an illness that her doctors cannot identify. She is convinced something is wrong with her and that she needs help, but because her doctors cannot diagnose her they tell her that nothing is wrong. Dorothy has a moment where she wonders out loud if maybe the doctors are right, to which Rose says "Doctors don't know everything. After all, Dr. Suess was a doctor." The sentence just sorta hangs there after Rose says it, but I'm beginning to get her point. Having a title in front of one's name doesn't mean that person has all the answers.
While in the hospital I asked several times how we should dress Gabriel's head. The nurses asked the doctor, and the doctor said it wasn't necessary. Looking back, I guess I knew that was wrong. Every time I read about anencephaly I read about dressing the wound. When I saw pictures of babies that survived for periods of time such as Gabriel has survived, their heads were dressed. It only makes sense that the brain should not be exposed.
When we got home we made the decision not to force Gabriel to wear caps anymore. We thought his time with us may be drawing to a close, and we wanted him to be free and comfortable. And he always has appeared comfortable, still not displaying signs such as fever that would suggest an infection. But as Gabriel continued to not only survive, but fare very well and sometimes even thrive, I began to worry about infection. Our assigned pediatrician, actually a neonatologist working with hospice on our case, said we could dress the wound or not, either way the result would be the same.
I think now about that attitude and it makes me furious. Ben and I are quite aware of what Gabriel's likely fate is. But if dressing or not dressing his head will give him one more day or one more hour even, is it not our responsibility as his parents to ensure he has every moment of life he can? Since then Ben and I have desperately searched the internet for answers to our questions. Luckily, the anencephaly community is small thanks to the internet, and I have received valuable advice from women who have already walked in my shoes. Thanks to them, Gabriel is resting now with a head dressing that seems comfortable to him, and this evening he ate more than he's ever eaten since he's been born.
I am greatful that he was able to resist infection up to this point, as far as I can tell, but I am still angry at our experience in the hospital. What was I thinking, allowing them to let my baby leave the hospital without showing us how to care for his special needs? I am a lawyer; why wasn't I jumping up and down, demanding that Gabriel get assistance and reminding the doctor of HIS responsibility, and how failure to care for Gabriel is negligence. When we left the hospital Gabriel's breathing was steady, and as always his heartbeat was strong. He was alive, and he deserved respect and assistance.
The medical community has come a long way from the days when anencephalic babies were a surprise at birth, when the response to that surprise was to take the baby away to die without even showing him to his mother. But there are still some serious flaws. Gabriel's survival is a surprise, it's true. Maybe no one we have seen knows how to care for a baby as special as him. But that doesn't mean they should just throw their hands in the air with an "Oh well, he's going to die anyway" attitude. We're all going to die, anyway. I bet doctors wouldn't be so happy if we all assumed that attitude and stopped visiting them. I can only guess that it is pride that keeps our doctor from saying "I'm sorry, I don't know how to help you. You should find someone who is better qualified." Pride can be a dangerous thing.
I still have many moments when I question whether I am truly caring for Gabriel to the best of my ability. I feel helpless that I can't give him everything he needs. I hate that so much of what we are doing is an experiment for us. We are giving it all we have, I just wish we had more for him. Every day that he survives I know it is only by God's grace, because God has decided that Gabriel still has things to do on this earth, and I am thankful for that time, and can only continue to do the best I can as we fly by the seat of our pants down this path that we are on.
While in the hospital I asked several times how we should dress Gabriel's head. The nurses asked the doctor, and the doctor said it wasn't necessary. Looking back, I guess I knew that was wrong. Every time I read about anencephaly I read about dressing the wound. When I saw pictures of babies that survived for periods of time such as Gabriel has survived, their heads were dressed. It only makes sense that the brain should not be exposed.
When we got home we made the decision not to force Gabriel to wear caps anymore. We thought his time with us may be drawing to a close, and we wanted him to be free and comfortable. And he always has appeared comfortable, still not displaying signs such as fever that would suggest an infection. But as Gabriel continued to not only survive, but fare very well and sometimes even thrive, I began to worry about infection. Our assigned pediatrician, actually a neonatologist working with hospice on our case, said we could dress the wound or not, either way the result would be the same.
I think now about that attitude and it makes me furious. Ben and I are quite aware of what Gabriel's likely fate is. But if dressing or not dressing his head will give him one more day or one more hour even, is it not our responsibility as his parents to ensure he has every moment of life he can? Since then Ben and I have desperately searched the internet for answers to our questions. Luckily, the anencephaly community is small thanks to the internet, and I have received valuable advice from women who have already walked in my shoes. Thanks to them, Gabriel is resting now with a head dressing that seems comfortable to him, and this evening he ate more than he's ever eaten since he's been born.
I am greatful that he was able to resist infection up to this point, as far as I can tell, but I am still angry at our experience in the hospital. What was I thinking, allowing them to let my baby leave the hospital without showing us how to care for his special needs? I am a lawyer; why wasn't I jumping up and down, demanding that Gabriel get assistance and reminding the doctor of HIS responsibility, and how failure to care for Gabriel is negligence. When we left the hospital Gabriel's breathing was steady, and as always his heartbeat was strong. He was alive, and he deserved respect and assistance.
The medical community has come a long way from the days when anencephalic babies were a surprise at birth, when the response to that surprise was to take the baby away to die without even showing him to his mother. But there are still some serious flaws. Gabriel's survival is a surprise, it's true. Maybe no one we have seen knows how to care for a baby as special as him. But that doesn't mean they should just throw their hands in the air with an "Oh well, he's going to die anyway" attitude. We're all going to die, anyway. I bet doctors wouldn't be so happy if we all assumed that attitude and stopped visiting them. I can only guess that it is pride that keeps our doctor from saying "I'm sorry, I don't know how to help you. You should find someone who is better qualified." Pride can be a dangerous thing.
I still have many moments when I question whether I am truly caring for Gabriel to the best of my ability. I feel helpless that I can't give him everything he needs. I hate that so much of what we are doing is an experiment for us. We are giving it all we have, I just wish we had more for him. Every day that he survives I know it is only by God's grace, because God has decided that Gabriel still has things to do on this earth, and I am thankful for that time, and can only continue to do the best I can as we fly by the seat of our pants down this path that we are on.
Thursday, June 16, 2011
The Blueberry Bush
The day of Gabriel's prayer shower my sister noticed that one of the shoots which had turned completely brown (they all had -- a local farmer even told me it was done for if I didn't see any more green), had green growing from the bottom. She recommended I peel back some of the dead leaves, clean the plant up, and resume watering it. I saw the green, but never did get around to tending to it much since I had other plants that were healthy that I would rather fuss with. But little by little I saw the green part get taller, and begin to sprout leaves. The plant is slowly getting healthy again.
They told me anencephaly is a fatal diagnosis. I don't fool myself into believing that Gabriel will live a long life, however he has already exceeded my expectations. Through no real fault of the doctors, we were sent home with little instruction as to how to care for Gabriel beyond his basic needs. They thought, and the facts would support, that they were sending Gabriel home to die. Admittedly, Ben and I have had moments, one just last night, where we thought he was leaving us. But he holds on strong. His brain seems to be relatively intact. Two of the three protective membranes even formed around it, our pediatrician told us during a house call yesterday. He is highly functional, and actually very strong for a newborn, making attempts to hold his head up that surprise my mother every time. He refuses to die. I don't know how else to say it.
Since our diagnosis friends have sent me inspirational stories of babies like Faith Hope, who survived 93 days after birth. I wouldn't allow myself to think too much about those cases, as I knew the chances of even one day were slim. I am ashamed to admit that I was resigned to Gabriel's fate. I still am. But I'm beginning to see that resignation doesn't have to mean hopelessness. I have talked often of my faith in God and Heaven, but I haven't spent much time thinking about the miracle of life here on Earth for Gabriel. I presumed it would be much shorter than it has been. But in 19 minutes he will be six days old.
I have written of Gabriel's strength while in utero. He was active, with strong movements, and I trusted that his strength would carry him through to a live birth. I had no idea how strong he really is. None of us know how strong we are until we're in a situation that tests that strength. Every day I see just how fitting Gabriel's name, which means "A hero of God," or "God is my strength", really is. He is my hero. He inspires my faith and even my own strength as I care for a special needs baby that I didn't know would still be here today. He is indeed the angel here on earth that I have so often heard him referred to as. I will not spend my time waiting for him to die, as if he were a lost cause. Instead, just like him, I will live. I will live for him and with him as long as he will stay with me.
Wednesday, June 15, 2011
Gabriel's Birth Story
Two and a half days earlier Ben and I were saying goodbye to our dog Gideon. I wanted to promise Gideon that I would bring his little brother Gabriel home soon, but I couldn't make a promise I couldn't keep, even to the dog. The truth was I had hopes and dreams and even faith in what the next few days held, but there was also a lot of uncertainty. Faith grows best where there is uncertainty.
We were surprised at six in the morning when we called to report for our scheduled labor induction that the hospital was ready for us. We had been warned that getting in could take all day, even though we were told to start calling in at six in the morning. I got up in time to make that first phone call but with no time to spare and we were told to come in. We each showered, had breakfast, and I straightened my hair. We loaded our bags into the car, which included a number of things we'd packed to preserve memories of Gabriel before he passed. I kissed Gideon good-bye, knowing my parents would be by soon to take him to their house for a few days, and we drove to the hospital. I was excited, but I sensed that Ben was very anxious. It wasn't the right time to reassure him out loud. He knew that my belief that Gabriel would be born alive was strong, and I knew that he was afraid of the hours and days to come. We drove in quiet understanding.
Per our request we were placed in a delivery room at the end of the hall, away from other new parents and their newborns. We were assigned a nurse, Taryn, who asked us if we'd been told everything. We looked at her curiously, not sure if she was talking about the plan for induction or. . . "Do you mean his condition," Ben asked. She said yes. "We've known since Week 21," I informed her.
"Have you thought about what you want to do after --" and her voice trailed off.
"Yes, we have!" I presented her with a copy of our birth plan, printed out on stationary with a baby print border, with a copy of our announcement letter about Gabriel's condition attached.
"Oh. You have a birth plan."
I seized the opportunity to break the ice. "I know what you must be thinking. 'I went to school for this for three years, but sure! Bring me your birth plan!" She smiled and finished whatever she was working on at the time and left the room for a few minutes. When she returned it was clear she had read and nearly memorized our birth plan. She started asking questions for clarification. In particular she asked about our desire to have Ben hold Gabriel first. The hospital's policy is to hand the newborn directly to the mother for skin-on-skin contact to facilitate bonding, but Ben and I had agreed that he would hold Gabriel first. Gabriel was due to be born on Ben's birthday, June 9th, and though we were starting labor on June 8th I thought he'd wait it out to be Dad's special birthday gift, and Ben should be first to hold him. Besides, I'd spent the last nine months in a close relationship with Gabriel, and nothing was going to interrupt our bond. We confirmed with the nurse our wishes and she was very accommodating. Nearly anything we asked for, we were granted. Before leaving the room this time she told me that our letter to our family almost made her cry. Then I knew we had an ally in Taryn, who played a vital role in bringing Gabriel into the world.
The first day, Wednesday the 8th, was uneventful. I took a medication called Cytotec to help start labor, but after 12 hours of that I was still only at 2 cms. I was told to eat and take a shower and at midnight we started on Pitocin. I slept intermittently that night, waking up to allow the nurse to take my temperature and check Gabriel's heartbeat, which stayed strong at between 120 or 130 beats per minute through the entire labor. His heartbeat has always been strong.
In the morning we saw Taryn again, who examined me and reported that I was only at 2.5 cms. She was in and out throughout the day, as were a few visitors including Ben's dad Charlie and stepmom Tina, my mom, our doula Marivette, and a few of my aunts. The contractions slowly got stronger but not unbearable. I knew this was just the beginning. Later into the evening I began to struggle to talk through the pain but I continued to make light of it. The pain got stronger and stronger very quickly. After more than a day of slow labor things started to speed up. Pain started to crash into me and I wondered if my mom and Marivette were right, that a slow start would probably mean a quick middle and end. It became impossible to talk through contractions and I started drawing on our training from childbirth class, mimicking the hippies in the video we had watched. The hippies were on to something, because for a few hours the cleansing breaths and moaning worked. I drifted into sleep between contractions, which were about two minutes apart. I got up to use the restroom, dragging my IV bags with me, and realized I was shaking. My mom pointed out that my skin was pale and yellow. Marivette said transition was near and I felt relieved until Taryn came in to examine me and told me I was at three and a half. "No. No, no, no," I whined and shook my head. I was starting to crack, and what frightened me most was that in all of our training we had been told that the breakdown would come, but would come in the later stages. I still had seven centimeters to go and I was losing it. My mom and Marivette excused themselves to allow me to cry with Ben and I did. I sobbed loud and hard. My mom returned and I sobbed louder and harder. She waved Gabriel's stuffed giraffe at me and even put one of his caps on it, trying to remind me about why I was doing all of this but it was of no comfort. "It's not fair," I cried. "It's not fair that my son has a defect and I am going to lose him and I also have to go through all of this pain. It's not fair and I can't do it and I don't want to."
"You CAN do it. We all say this." I knew it was true, but I also was threatened by the fact that it was happening so early. My emotions were overwhelming me, making each contraction both painful and stressful. Relaxing like the hippies was out of the question. I wanted pain medication. My mom called Taryn in and she gave me a mild pain reliever, which would make me drowsy and last about an hour. I was asleep right away and slowly woke up an hour later to a seemingly milder contraction.
It was time for Taryn to switch shifts, and she came in with our new nurse. Joel. Panic swept my face and the room was silent until Taryn said "Is that okay?" Poor Joel. I wanted nothing to do with him. I'm sure he's a nice guy, qualified and educated. I was also sure I'd lose my mind if I had to endure 12 hour with him as my nurse, that I'd never progress and that I'd certainly never relax. Joel was traded out for Cassie, another vital participant in Gabriel's birth. I asked Cassie for two more doses of the pain medication I'd already received. Upon waking up from the second I saw Ben in front of me sleeping upright in a chair. Behind me my mom and Marivette were also sleeping sitting up. They'd been with me for hours and probably would be for hours more, so I grit my teeth through a few contractions, now stronger and quicker, until Ben woke up.
"I want the epidural," I whispered. He nodded. I looked back at my mom who had woken up and was wondering what we were talking about. As soon as I told her, she left the room and came back with Cassie, who said "You asked about an epidural?" The words woke Marivette quickly, whose job was to remind me even through the pain that I wanted to do this unmedicated, a labor of love for Gabriel. I asked a few questions about how long it would take and how it might help my labor and she left me to make my decision. Marivette came to the bedside and made the necessary reminders. Out of the corner of my eye I could see Ben looking at me with eyes that said he hoped I wouldn't be talked out of this. I must have looked so pathetic in that moment as I weighed what was really best for Gabriel. If I was in this much pain, I couldn't believe that Gabriel wasn't feeling some of that stress. I had to wonder how much of my strain he could take. I started to have flashbacks to my miscarriage a year ago and remembered how only sadness came from that physical pain, whereas this pain was bringing me face to face with Gabriel. And I was sure Gabriel would be born alive. But I was also sure I didn't want to take much more pain.
After the epidural at three in the morning I slept for nearly six hours. I woke here and there to Cassie's simple proddings. She didn't make me stick the thermometer under my toungue to take my temperature, but gently placed it under my arm. She softly lifted the bedsheets and placed the Doppler on my tummy to check for Gabriel's heartbeat. It was easy to find nearly every time, and I could hear that there was little change. My baby was staying strong, like I always knew he would.
In the morning when Taryn returned I didn't flinch when she told me I had still hardly progressed. Gabriel had missed Ben's birthday, the 9th, but he was on his way today and I knew it. Taryn joked that I had to have him by the end of her shift, because she was off the next day. At about noon my parents told me they were going out for lunch, and I insisted Ben go with them. It would be an eventful afternoon and he needed a break. While he was gone the doctor came in to examine me. I was now at about 6.5 cms, and she wanted to break my water. I had objected loudly to the request the day before, knowing how important the bag of waters is for the anencephalic baby, but that morning it felt right and I allowed it. Gabriel, who was already in ready position, moved quickly into place. After a few practice pushes with Taryn she said "I'm going to go get the doctor." The room was abuzz with activity as more nurses moved in and Taryn dragged in a warmer. Taryn again asked about our requests and the other nurses asked questions too. Were we sure we wanted Ben to hold him first? Were they to understand that they should cover his defect before they passed him to us? We barely had time to answer. Gabriel was on his way.
Pushing went quickly. I remember Ben putting washcloths on the bed railings. Marivette took her place on my left hand side, my mom next to her taking pictures. Ben stood on my right hand side, next to the warmer for Gabriel. They all spoke words of encouragement and I was moved by the chance to bring this special life into the world with my mom and Ben by my side. After two and a half days in the hospital, Gabriel arrived after less than half an hour of pushing.
He was silent, but that's not unusual in the anencephalic baby. I looked at Ben and he looked at me nervously. I could see the activity behind me, I could hear the nurses working on him. I could hear the doctor giving me orders to help me finish laboring, and I finally got up the nerve to ask. "Is he alive?"
"Yes."
I cried. I ordered Ben out of my way so I could see him, not caring if they'd put the cap in place or not. I could see that he was beautiful. His body was long and with a beautiful tone. He was here, and he was alive, and I couldn't believe I'd had even a moment's doubt. They passed him to Ben and he just held him and looked at him with curiosity and wonder. That's when I heard Gabriel cry.
"Was that him," I asked Ben, and he responded "Yes." And I thanked God for answering not one, but two of my prayers already. My husband was standing at my side, holding our son, and he was breathing, he was crying, and his heart was beating strong. He was alive. At 3:19 on Friday, June 10, 2011, the world stood still for me in a moment in time that changed my life forever. Gabriel was here.
So many stories of anencephalic babies report the death of the baby at this point or not long after. I dare not say their stories end, because their story goes on forever. However four, nearly four and a half days later, Gabriel is still alive. He is napping at my side as I type and take breaks to stroke his arms or back. The story of his life on earth has many chapters, beginning last September and still being written today. I close this chapter with promises to write more as the story unfolds.