There have been several moments over the last year when certain aspects of this whole experience have seemed surreal. In the very beginning, my brain simply could not accept the reality of the situation. I remember lying in the hospital bed, looking at the doctor as she explained our baby was no longer alive and wondering what kind of terrible pregnancy dream I was having. I’d had so many crazy dreams in the months leading up to Noah’s birth, so it seemed entirely possible that I was going to wake up any minute in my bed at home, still feeling my baby boy moving around in my belly.
The intense dream-like sense dissipated fairly quickly, but a general feeling of unreality came and went for the next several weeks. We spent so many months preparing our home, our hearts and our minds for the addition of a new member to our little family, and suddenly we had to change our whole vision of the future. There were moments when I just couldn’t believe there would be no baby to wear the tiny clothes I had washed and folded, or sleep in the bassinet we’d set up next to our bed, or ride in the car seat we’d carefully installed. Each morning brought a fresh wave of grief as I realized again how finally separated I was from the baby who had shared my body for so long. We were living a life so incredibly different from the one we had imagined that it was hard to accept it was real.
Time continues to pass regardless of what else happens in life, though, and with the passage of weeks and months came a gradual acceptance of Noah’s physical absence from our lives. We settled back into everyday routines, and though Noah was (and still is) always at the back of our minds, the expectation that we should be parenting a living baby faded. Eventually, I got to the point where it was surreal to think of how life would be if Noah had lived. It seems like a distant fantasy to imagine him making a mess of his baby food, babbling as he plays with his toys, breaking into a grin when Mark comes home, taking his first steps. Did we ever truly believe we would get to have those experiences with them? I know we did because why would we think otherwise, but those blissfully oblivious days of my first pregnancy seem as if they were decades ago.
All that said, I’m still struggling intensely with thoughts of how tomorrow should be for us. I should be wrapping gifts and baking a birthday cake with the knowledge it would be destroyed by chubby little hands. Mark should be making sure the camera battery is charged so we would be sure to capture this milestone in photos and video. We should go to bed this evening expecting to wake in the morning to happy smiles and big hugs.
Instead, we are planning to wake early so we can recognize 5:47 a.m., the time Noah slid silently into this world. We’ll go to the beach to listen to the waves Noah heard through the wall of my belly during his short time in this world and to watch the sunrise he never got to see. We’ll read passages from the Bible, we’ll talk, and I’m fairly certain I’ll cry. Not at all what I used to imagine for my son’s first birthday, but this is our current reality. I know there will be beauty and hope in the midst of the sadness, and I will feel blessed in spite of my grief.
Tuesday, September 15, 2009
Saturday, September 12, 2009
Scattered
Today is September 12, which means we are just four days away from Noah’s first birthday/the first anniversary of his death. The fact that we have to mark both his birth and his death on the same day seems somehow absurd to me, and I have struggled with what to call September 16 in conversation. The word birthday somehow seems hollow since we never had the chance to celebrate with him, yet going the anniversary route seems to negate the fact that Noah was born. Because of my background in English and writing, I’m hyper-aware of connotations and don’t like to use words that don’t capture my meaning accurately. I’m not sure how I’m going to resolve this particular dilemma, though, so for now I often use both terms. Please forgive the awkwardness of the phrasing – it’s just something I have to do for now.
Over the last year, I’ve assumed I would come to these days leading up to the birthday/anniversary and be able to analyze my emotions and reflect on my experiences in a sensible way. When we started this journey last September, I was at a loss for words. I had been processing my life through writing for nearly 20 years, but suddenly I was unable to verbalize my thoughts and emotions. Next year, I thought, surely next year I’ll be ready to use the birthday/anniversary triggers to write a coherent analysis of this experience. Yet here I am, almost a year later and I feel almost as much at a loss for words as I did then. My thoughts are scattered, my emotions are conflicted and my brain is refusing to process anything coherently. The difference is that now I’m willing to just take the plunge, sit in front of a computer and see what happens when I start writing. Please bear with me as there’s a chance none of this will make much sense at all.
Fall came to Maine a bit early this year, and the chill in the air has brought back a flood of associations and memories. Last year, the first two weeks of September were actually quite hot (for this area, at least), more like the weather we expect to have in August. Coincidentally, the switch last year happened on the day we lost Noah, so rather than reliving the days leading up to September 16, I have been having vivid flashbacks to the early days of our grief. Memories of walking around in a daze, wishing I would wake up from this awful nightmare in which my baby was dead. Memories of how utterly lost I felt as I tried to envision a future entirely different from the one I had been anticipating for months. Memories of the exhaustion I experienced as I trudged through interminably long days dominated by grief.
Surprisingly, not all of my associations with those early days are painful. I’ve also been remembering the outpouring of love we experienced from people in all parts of our lives. The comfort we felt from the knowledge that so many people were praying for us and thinking about us. The strength we gathered from prayer and the ways in which our faith grew. The incredible knowledge that Noah is in a place where he will never have to experience suffering or pain.
In the midst of all this remembering, the baby in my womb is becoming an increasingly solid presence. My belly has grown to the point where strangers aren’t afraid to ask when I’m due, and I frequently feel the flutter of tiny arms and legs. I’m so thankful for the blessing of this new life, especially as I remember the aching emptiness I felt in the first days and weeks after we lost Noah. As I would wake in the morning, momentarily oblivious in my half-asleep state, the reality of our situation would come rushing back to me as I put my hand to my puffy shell of a stomach and realized there would be no responding kick. I have no words to express the devastation of feeling of being so empty.
My brain seems to be finished with writing for now, so I will wrap up this post and let the rest of my thoughts continue to marinate before I try to put them into words. Spending time reflecting is good for me right now, though, so I’m sure I will write more this week.
Over the last year, I’ve assumed I would come to these days leading up to the birthday/anniversary and be able to analyze my emotions and reflect on my experiences in a sensible way. When we started this journey last September, I was at a loss for words. I had been processing my life through writing for nearly 20 years, but suddenly I was unable to verbalize my thoughts and emotions. Next year, I thought, surely next year I’ll be ready to use the birthday/anniversary triggers to write a coherent analysis of this experience. Yet here I am, almost a year later and I feel almost as much at a loss for words as I did then. My thoughts are scattered, my emotions are conflicted and my brain is refusing to process anything coherently. The difference is that now I’m willing to just take the plunge, sit in front of a computer and see what happens when I start writing. Please bear with me as there’s a chance none of this will make much sense at all.
Fall came to Maine a bit early this year, and the chill in the air has brought back a flood of associations and memories. Last year, the first two weeks of September were actually quite hot (for this area, at least), more like the weather we expect to have in August. Coincidentally, the switch last year happened on the day we lost Noah, so rather than reliving the days leading up to September 16, I have been having vivid flashbacks to the early days of our grief. Memories of walking around in a daze, wishing I would wake up from this awful nightmare in which my baby was dead. Memories of how utterly lost I felt as I tried to envision a future entirely different from the one I had been anticipating for months. Memories of the exhaustion I experienced as I trudged through interminably long days dominated by grief.
Surprisingly, not all of my associations with those early days are painful. I’ve also been remembering the outpouring of love we experienced from people in all parts of our lives. The comfort we felt from the knowledge that so many people were praying for us and thinking about us. The strength we gathered from prayer and the ways in which our faith grew. The incredible knowledge that Noah is in a place where he will never have to experience suffering or pain.
In the midst of all this remembering, the baby in my womb is becoming an increasingly solid presence. My belly has grown to the point where strangers aren’t afraid to ask when I’m due, and I frequently feel the flutter of tiny arms and legs. I’m so thankful for the blessing of this new life, especially as I remember the aching emptiness I felt in the first days and weeks after we lost Noah. As I would wake in the morning, momentarily oblivious in my half-asleep state, the reality of our situation would come rushing back to me as I put my hand to my puffy shell of a stomach and realized there would be no responding kick. I have no words to express the devastation of feeling of being so empty.
My brain seems to be finished with writing for now, so I will wrap up this post and let the rest of my thoughts continue to marinate before I try to put them into words. Spending time reflecting is good for me right now, though, so I’m sure I will write more this week.
Thursday, August 6, 2009
Big Brother
Noah’s sibling is currently growing inside me, and as we move into the second trimester, I’m starting to feel a little more comfortable making that fact known to the wider world. Of course, this pregnancy is marked by the knowledge that there is no “safe” point in pregnancy, no point at which we can just assume we will come home with a baby once our nine month gestational period is over. However, I can’t help finding some comfort in watching the statistical chances of losing this pregnancy go down. A niggling voice in my head likes to remind me that we’ve been on the wrong side of statistics before (I can’t even find a number specific to cord prolapse, though I know the chance of having any type of fatal cord accident is one in a thousand), but I know I need to cling to hope instead of fear. We are praying we will welcome this baby into the world in early to mid February (the actual due date is currently under debate).
I discovered I was pregnant the morning before Mark’s birthday and I wish I could tell you I kept the secret so I could let it be a special birthday surprise, but news this significant is hard to contain, so I told him as soon as we were reunited at the airport that evening (he had been in Maine and I in Ohio for the preceding week). I also felt like I needed his support right away – in spite of my best efforts, my mind was already reeling with thoughts of the many ways we could lose this baby. When I went in for my annual exam in February and told the doctor we were going to start trying to get pregnant again, her first response was to tell me that the rate of miscarriage is 30% and ask me if I thought I could handle another loss so soon. At the time, I had confidently said we had relied on our faith to get us through the worst tragedy of our lives, and we would trust God to get us through whatever happened next. As I processed the news of our new pregnancy, I still firmly believed in that statement, but suddenly the grim statistics she quoted in the office were haunting me. Was I really ready to face the possibility of another loss?
As the days started to pass, I spent a lot of time praying for a peace that passes understanding, and we confided in others who we knew would pray for us and for the health and safety of the baby. For the most part, I managed to stay fairly calm, though I dealt with several moments of fear in the middle of the night (everything seems worse at 2 a.m.). I was also anxious going into our first ultrasound, but the tech found the heartbeat almost immediately. Hearing that sound again was incredible, especially after the silence we experienced when the nurses were trying to find Noah’s heartbeat at the hospital while I was in labor. I will never forget that silence.
Knowing the pregnancy was viable at that point helped my state of mind, but for a long time I still found myself qualifying every statement about the baby with the clause “if all goes well.” My brother and his girlfriend got engaged toward the end of June and people started talking about having the baby at their April wedding, but I always had to interject “assuming all goes well.” Even when talking about the holidays this year and how huge I’ll be, I couldn’t help saying “if all goes well.” I thought I’d be doing that for the entire pregnancy, but I’ve noticed lately that my compulsion to interject that clause has tapered off. I think I’ve made a subconscious decision to start allowing myself to simply hope for a future with this child without trying to manage expectations by reminding myself and others that we can’t assume anything. On some level, we all know any number of things could happen to turn life upside down in an instant, but we don’t say things like, “if I don’t get hit by a bus before Thanksgiving, then I’ll make the sweet potatoes.” We just can’t live with that kind of mindset, so I shouldn’t think such thoughts about my pregnancy.
We had an ultrasound earlier this week and got to see the baby really looking like a baby. Our first ultrasound was early enough that all we could really see was a blob with a heartbeat, but this time we could see the hands with their tiny fingers, the head with the nose and mouth, the little feet – it’s amazing the detail you can see even at this stage. Watching the baby on the screen was an emotional mixed bag for me. I was incredibly relieved to see the baby looking so healthy, and seeing the parts of its body made the whole thing so real. However, I was also flooded with memories of Noah’s ultrasounds and the realization that those times we saw him wiggling around on that screen were the only times we got to see him alive and moving. I think that mix of emotions is going to be fairly typical of this pregnancy as we experience incredible joy mixed with wistful sadness. I feel ready for this part of the grief journey, though, as there is certainly part of us that will heal when we bring a living baby home.
I discovered I was pregnant the morning before Mark’s birthday and I wish I could tell you I kept the secret so I could let it be a special birthday surprise, but news this significant is hard to contain, so I told him as soon as we were reunited at the airport that evening (he had been in Maine and I in Ohio for the preceding week). I also felt like I needed his support right away – in spite of my best efforts, my mind was already reeling with thoughts of the many ways we could lose this baby. When I went in for my annual exam in February and told the doctor we were going to start trying to get pregnant again, her first response was to tell me that the rate of miscarriage is 30% and ask me if I thought I could handle another loss so soon. At the time, I had confidently said we had relied on our faith to get us through the worst tragedy of our lives, and we would trust God to get us through whatever happened next. As I processed the news of our new pregnancy, I still firmly believed in that statement, but suddenly the grim statistics she quoted in the office were haunting me. Was I really ready to face the possibility of another loss?
As the days started to pass, I spent a lot of time praying for a peace that passes understanding, and we confided in others who we knew would pray for us and for the health and safety of the baby. For the most part, I managed to stay fairly calm, though I dealt with several moments of fear in the middle of the night (everything seems worse at 2 a.m.). I was also anxious going into our first ultrasound, but the tech found the heartbeat almost immediately. Hearing that sound again was incredible, especially after the silence we experienced when the nurses were trying to find Noah’s heartbeat at the hospital while I was in labor. I will never forget that silence.
Knowing the pregnancy was viable at that point helped my state of mind, but for a long time I still found myself qualifying every statement about the baby with the clause “if all goes well.” My brother and his girlfriend got engaged toward the end of June and people started talking about having the baby at their April wedding, but I always had to interject “assuming all goes well.” Even when talking about the holidays this year and how huge I’ll be, I couldn’t help saying “if all goes well.” I thought I’d be doing that for the entire pregnancy, but I’ve noticed lately that my compulsion to interject that clause has tapered off. I think I’ve made a subconscious decision to start allowing myself to simply hope for a future with this child without trying to manage expectations by reminding myself and others that we can’t assume anything. On some level, we all know any number of things could happen to turn life upside down in an instant, but we don’t say things like, “if I don’t get hit by a bus before Thanksgiving, then I’ll make the sweet potatoes.” We just can’t live with that kind of mindset, so I shouldn’t think such thoughts about my pregnancy.
We had an ultrasound earlier this week and got to see the baby really looking like a baby. Our first ultrasound was early enough that all we could really see was a blob with a heartbeat, but this time we could see the hands with their tiny fingers, the head with the nose and mouth, the little feet – it’s amazing the detail you can see even at this stage. Watching the baby on the screen was an emotional mixed bag for me. I was incredibly relieved to see the baby looking so healthy, and seeing the parts of its body made the whole thing so real. However, I was also flooded with memories of Noah’s ultrasounds and the realization that those times we saw him wiggling around on that screen were the only times we got to see him alive and moving. I think that mix of emotions is going to be fairly typical of this pregnancy as we experience incredible joy mixed with wistful sadness. I feel ready for this part of the grief journey, though, as there is certainly part of us that will heal when we bring a living baby home.
This post has gotten to be quite long, so I’m going to wrap it up now. My goal is to start updating this blog much more regularly with news of the pregnancy and reflections on this part of our journey, so please stay tuned if you are interested. For now, I am going to leave you with some pictures of baby Schuenke number two (we don’t have a nickname yet – please feel free to make suggestions). 
Saturday, June 20, 2009
Ceremonial Signing
Yesterday, we went to Augusta for the ceremonial signing of Noah’s Law. The weather couldn’t have been much more miserable – there were torrential downpours as we made the journey up I-95, and when we were outside the car, we had to scurry around with umbrellas in hopes of not getting soaked. I don’t think the rain dampened anyone’s spirits as we gathered in the capitol building, though. There was a general sense of accomplishment and satisfaction among all the families who came to see this bill signed into law.
We were invited into the governor’s office at promptly 11:30 a.m., and as Noah’s parents, Mark and I were instructed to stand just to the right of the governor, who immediately stood to introduce himself to us. The rest of the group gathered around the fairly spacious office, and once everyone was more or less settled, the governor said a few words, thanking us for the work we put into moving this bill forward and expressing his opinion of how important it is for the state to recognize families in this way.
After the governor had spoken, he asked the senator who had sponsored the bill to say a few words. Mark and I had met the senator several times over the course of the last four or five months, so she knew our story well, and started to launch into a little speech about her involvement in the bill. However, as she gestured toward us to say how much we had impacted her, she called us Michael and Lisa. Yep, we obviously had quite an impact. To be fair, she’s always had some kind of block on Mark’s name, and would either call him Mike or Matt, rarely Mark. She had never gotten my name wrong before, though, and the completely incorrect combination made Mark and me both start laughing. I was afraid I wasn’t going to be able to regain control, but somehow I did.
After the senator wrapped up her remarks, the governor invited Mark and me to speak toward why this bill was important to us. I was caught entirely off guard, but I was closer than Mark, so I just started to talk with the hope that something sensible would come out of my mouth. I don’t remember much of what I said, though I know I tried to convey how disconcerting and painful it was for us to have a beautiful baby boy who was only recognized through a death certificate. I talked about how there is an incredible amount of pain that goes along with stillbirth, and we were motivated to help with this bill by the desire to provide some small measure of comfort to parents who deal with this kind of loss in the future.
Kathy also said a few words, and then the governor invited the other families to introduce themselves. Finally, he pulled out several pens and started signing his name to the bill. He used all the pens in the signing so each family could take one home as a memento of the bill. As he painstakingly wrote his name in parts, he joked about how having a long last name was a drag in the third grade, but certainly comes in handy now.
Then, it was over almost as quickly as it had started, and we filed out of the governor’s office with our pens and copies of the signed bill. A reporter from the Maine Public Broadcasting Network pulled Mark and me aside for an interview, for which I was also not prepared and even as I spoke, I wondered if I was saying the right thing. Finally, we all headed to a restaurant where we had made reservations for a celebratory lunch.
When the meal was over, we played a slideshow one of the women from our support group had created using pictures from people who had been part of this effort. Seeing all of the babies who had been born still and the ways their parents are remembering them really brought home again the reason this bill is so important. These babies are all very real to the people who loved them and nurtured them, and their existence should be recognized.
Unfortunately, the certificates themselves have gotten a little bogged down in paperwork, so we have not yet been able to get a certificate of birth for Noah or any of the other babies. I’m hoping that piece will come soon, and then our job will be to make sure all the hospitals in Maine are aware of the existence of the certificates, and have a system in place for telling their patients.
I wish had some grand closing statement to make, but those words are eluding me right now, so perhaps I’ll leave that for another post at another time. For now, I’ll insert pictures of the event, as well as the link to the radio story in which you can hear our interviews.
Here’s the link to the radio story: http://www.mpbn.net/News/MaineNews/tabid/181/ctl/ViewItem/mid/1858/ItemId/11020/Default.aspx
We were invited into the governor’s office at promptly 11:30 a.m., and as Noah’s parents, Mark and I were instructed to stand just to the right of the governor, who immediately stood to introduce himself to us. The rest of the group gathered around the fairly spacious office, and once everyone was more or less settled, the governor said a few words, thanking us for the work we put into moving this bill forward and expressing his opinion of how important it is for the state to recognize families in this way.
After the governor had spoken, he asked the senator who had sponsored the bill to say a few words. Mark and I had met the senator several times over the course of the last four or five months, so she knew our story well, and started to launch into a little speech about her involvement in the bill. However, as she gestured toward us to say how much we had impacted her, she called us Michael and Lisa. Yep, we obviously had quite an impact. To be fair, she’s always had some kind of block on Mark’s name, and would either call him Mike or Matt, rarely Mark. She had never gotten my name wrong before, though, and the completely incorrect combination made Mark and me both start laughing. I was afraid I wasn’t going to be able to regain control, but somehow I did.
After the senator wrapped up her remarks, the governor invited Mark and me to speak toward why this bill was important to us. I was caught entirely off guard, but I was closer than Mark, so I just started to talk with the hope that something sensible would come out of my mouth. I don’t remember much of what I said, though I know I tried to convey how disconcerting and painful it was for us to have a beautiful baby boy who was only recognized through a death certificate. I talked about how there is an incredible amount of pain that goes along with stillbirth, and we were motivated to help with this bill by the desire to provide some small measure of comfort to parents who deal with this kind of loss in the future.
Kathy also said a few words, and then the governor invited the other families to introduce themselves. Finally, he pulled out several pens and started signing his name to the bill. He used all the pens in the signing so each family could take one home as a memento of the bill. As he painstakingly wrote his name in parts, he joked about how having a long last name was a drag in the third grade, but certainly comes in handy now.
Then, it was over almost as quickly as it had started, and we filed out of the governor’s office with our pens and copies of the signed bill. A reporter from the Maine Public Broadcasting Network pulled Mark and me aside for an interview, for which I was also not prepared and even as I spoke, I wondered if I was saying the right thing. Finally, we all headed to a restaurant where we had made reservations for a celebratory lunch.
When the meal was over, we played a slideshow one of the women from our support group had created using pictures from people who had been part of this effort. Seeing all of the babies who had been born still and the ways their parents are remembering them really brought home again the reason this bill is so important. These babies are all very real to the people who loved them and nurtured them, and their existence should be recognized.
Unfortunately, the certificates themselves have gotten a little bogged down in paperwork, so we have not yet been able to get a certificate of birth for Noah or any of the other babies. I’m hoping that piece will come soon, and then our job will be to make sure all the hospitals in Maine are aware of the existence of the certificates, and have a system in place for telling their patients.
I wish had some grand closing statement to make, but those words are eluding me right now, so perhaps I’ll leave that for another post at another time. For now, I’ll insert pictures of the event, as well as the link to the radio story in which you can hear our interviews.
Here’s the link to the radio story: http://www.mpbn.net/News/MaineNews/tabid/181/ctl/ViewItem/mid/1858/ItemId/11020/Default.aspx
The governor talks about the importance of this bill.
The governor speaking to Mark and me.
The governor signing the bill.
Mark shakes hands with the governor.
The group poses after the signing.
Sunday, May 10, 2009
An Update on Noah's Law
The committee vote on Noah’s Law was scheduled to take place on Friday afternoon, so Kathy (the lactation consultant who got this bill rolling), Rebecca (our childbirth educator who has also been involved in the bill) and I made the trip to Augusta once more so we could be present to answer any questions that might arise. The work session for our bill was scheduled for 1 p.m., and around noon Kathy got a message on her phone saying the bill had passed by unanimous vote. Unfortunately, the message didn’t tell us what the language of the final bill had been like – for all we knew, they had passed a version that simply allowed for a meaningless slip of paper be given to grieving parents. After a brief debate, we decided to finish the journey to Augusta in hopes of tracking down more information.
We wandered around the state building for a few minutes and were wondering what to do next when our senator who is sponsoring the bill happened to walk out of a doorway near where we were standing. We flagged her down and asked her to explain the committee’s decision in more detail. As it turns out, they had decided to address it early because they were all in agreement about passing the version we had submitted on Thursday evening. After the hearing on Wednesday, Kathy spoke with a person who has been involved in helping most other states create Certificates of Birth Resulting in Stillbirth, and he said the vital statistic issue wasn’t crucial as long as the certificates we receive are official state documents. Apparently, most other states use the fetal death certificate as the primary vital record and the official certificate of birth emanates from that. Given that information, we decided we could settle for the same in the state of Maine. According to the language of our amendment, the parents of stillborn babies will now receive an official Certificate of Birth Resulting in Stillbirth, and it will have the state seal on it. Also, the bill will be retroactive, so parents who have had stillborn babies in the state of Maine in the past can also obtain their certificates of birth.
Because the committee vote was unanimous, the bill is almost guaranteed to get through the house and the senate without trouble. Based on the current timeline, it could be signed into law within the next two to three weeks. After the senator had explained the situation to us, she decided to ask the committee if they would be willing to put an emergency preamble on the bill, which would mean the law would go into effect immediately after signing, instead of having to go through the typical 90 day waiting period. The committee agreed without hesitation, and then one of the legislative clerks offered to set up a ceremonial signing with the governor, which will happen toward the middle of June. Noah’s certificate of birth will be the first to be printed, and Mark and I will receive it during the ceremony.
Overall, we have accomplished the two primary goals of this bill: the parents of stillborn babies will now receive certificates of birth in addition to certificates of death, and the state of Maine is recognizing the lives that have been lost. Already, this has been a comfort to us and other families who have become involved in this legislation, and I pray it will bring peace to the people who experience this unique kind of tragedy in the future. We appreciate everyone who has supported us through this process through prayers, e-mails, phone calls and other forms of communication.
Because this bill will be known as Noah’s Law, it will become a lasting legacy for our son and we feel indescribably blessed and humbled by that fact. We are no different from any other parents who have lost much-wanted babies to stillbirth in the state of Maine, yet God connected us with the right people at the right time in the right circumstances and then gave us the strength to share our story. If Kathy hadn’t been at the hospital on the day Noah was born, if she hadn’t known how to start a bill with the local senator, if I hadn’t decided to donate my breast milk and stay in touch with Kathy – I could list a dozen other ifs that would have changed this situation such that Noah’s name would not be on the bill, but eventually I would get around to “if Noah’s umbilical cord had stayed where it was supposed to stay”…and I just can’t go there. The circumstances are what they are, and we have been blessed in a unique way.
This past week has been an emotional one, to say the least. And, well, today is Mother’s Day, but my thoughts and emotions on that front are another story for another time. We continue this journey we didn’t expect and wouldn’t have chosen, trusting in the belief that all things will ultimately work together for good.
P.S. We found out a day or two after the hearing that it had been covered by the local news. If you want to see a brief clip of Mark’s testimony, here’s the link: http://www.wmtw.com/video/19390255. The story starts at minute 1:54 and is about a minute long. The newscaster uses the information from the original bill, not the one with the amendments we negotiated.
We wandered around the state building for a few minutes and were wondering what to do next when our senator who is sponsoring the bill happened to walk out of a doorway near where we were standing. We flagged her down and asked her to explain the committee’s decision in more detail. As it turns out, they had decided to address it early because they were all in agreement about passing the version we had submitted on Thursday evening. After the hearing on Wednesday, Kathy spoke with a person who has been involved in helping most other states create Certificates of Birth Resulting in Stillbirth, and he said the vital statistic issue wasn’t crucial as long as the certificates we receive are official state documents. Apparently, most other states use the fetal death certificate as the primary vital record and the official certificate of birth emanates from that. Given that information, we decided we could settle for the same in the state of Maine. According to the language of our amendment, the parents of stillborn babies will now receive an official Certificate of Birth Resulting in Stillbirth, and it will have the state seal on it. Also, the bill will be retroactive, so parents who have had stillborn babies in the state of Maine in the past can also obtain their certificates of birth.
Because the committee vote was unanimous, the bill is almost guaranteed to get through the house and the senate without trouble. Based on the current timeline, it could be signed into law within the next two to three weeks. After the senator had explained the situation to us, she decided to ask the committee if they would be willing to put an emergency preamble on the bill, which would mean the law would go into effect immediately after signing, instead of having to go through the typical 90 day waiting period. The committee agreed without hesitation, and then one of the legislative clerks offered to set up a ceremonial signing with the governor, which will happen toward the middle of June. Noah’s certificate of birth will be the first to be printed, and Mark and I will receive it during the ceremony.
Overall, we have accomplished the two primary goals of this bill: the parents of stillborn babies will now receive certificates of birth in addition to certificates of death, and the state of Maine is recognizing the lives that have been lost. Already, this has been a comfort to us and other families who have become involved in this legislation, and I pray it will bring peace to the people who experience this unique kind of tragedy in the future. We appreciate everyone who has supported us through this process through prayers, e-mails, phone calls and other forms of communication.
Because this bill will be known as Noah’s Law, it will become a lasting legacy for our son and we feel indescribably blessed and humbled by that fact. We are no different from any other parents who have lost much-wanted babies to stillbirth in the state of Maine, yet God connected us with the right people at the right time in the right circumstances and then gave us the strength to share our story. If Kathy hadn’t been at the hospital on the day Noah was born, if she hadn’t known how to start a bill with the local senator, if I hadn’t decided to donate my breast milk and stay in touch with Kathy – I could list a dozen other ifs that would have changed this situation such that Noah’s name would not be on the bill, but eventually I would get around to “if Noah’s umbilical cord had stayed where it was supposed to stay”…and I just can’t go there. The circumstances are what they are, and we have been blessed in a unique way.
This past week has been an emotional one, to say the least. And, well, today is Mother’s Day, but my thoughts and emotions on that front are another story for another time. We continue this journey we didn’t expect and wouldn’t have chosen, trusting in the belief that all things will ultimately work together for good.
P.S. We found out a day or two after the hearing that it had been covered by the local news. If you want to see a brief clip of Mark’s testimony, here’s the link: http://www.wmtw.com/video/19390255. The story starts at minute 1:54 and is about a minute long. The newscaster uses the information from the original bill, not the one with the amendments we negotiated.
Thursday, May 7, 2009
The Hearing
The hearing for Noah’s Law was held yesterday, and overall, things went fairly well. The worst part was the wait – our bill was scheduled to go before the committee at 3 p.m., and they didn’t call us until almost 7 p.m. Since we had arrived in the state building early to ensure we had everything set, we had more than five hours of downtime before the most emotional public speaking moment of our lives. Fortunately, we had a little group of supporters and were able to keep each other fairly well distracted, at least from thinking about how nervous we were. Mark even got to play with transformers for a while, thanks to a new friend who is always prepared for moments of boredom (though I think she had her four-year-old son in mind when she put the toys in her purse).
I could ramble on describing the day, but I’ll spare you the nitty-gritty details and just say that our turn did come eventually, though not before the committee was tired and perhaps just a little cranky. Mark and I were the first to testify, and we made it through, though both of us struggled to maintain composure and neither of us was able to avoid being teary. When we were finished, four other people testified, including people from our support group and one woman who saw our story on the news.
No one stood up to oppose the bill, but the director of the Maine Center for Disease Control did stand up as “neither for nor against” because she wanted to voice concerns over the current language of the bill. She had several points, but the one that potentially going to cause us the most trouble is related to making the certificate of birth resulting in stillbirth a vital record – apparently the CDC director is worried doing so could open the door for increased identity theft. She suggested instituting a “commemorative” birth certificate, but our goal in trying to pass this legislation is to make sure our babies are recognized by the state, not just to get pieces of paper with their names on them. After the hearing, the CDC director came out in the hall to discuss the situation with us and was very sympathetic to our cause, but was adamant about the vital statistic piece. We agreed to do more research and to send her amendment language that might satisfy both parties.
Today, we have been working on finding out how the other 26 states that have passed similar legislation are handling this issue. Our deadline is tight, since the work session in which the committee will vote is scheduled for tomorrow afternoon. I’m hoping we can get to a place where everyone is happy, so we can move this bill on to the next stage. Based on the communications we've had today, things are looking promising. I'll keep you posted.
Below, I will paste the text from the testimonies Mark and I gave. I’m also going to insert a picture of the poster Kathy made for us to set up in front of the podium as we testified.
Mark and Lindsay Schuenke Testimony
Lindsay
Senator Brannigan, Representative Perry and members of the committee, we are Mark and Lindsay Schuenke from Biddeford and we are here to support LD 361. In the interest of this bill, we would like to tell you the story of our son, Noah James Schuenke.
I found out I was pregnant with our first child on January 18, 2008. We were thrilled – Mark had a good job, I had started working part-time from home, we had purchased a house – it felt like the right time to add a baby to our family. During the eight months that followed, I progressed through a normal pregnancy, never giving the doctors any reason for concern. We found out we were having a boy, and we both enjoyed getting to know our son as he moved around in my belly.
By the time I went into labor nine days before my due date, we were ready: the nursery was decorated, the diapers were stacked, the car seat was installed, the little clothes were washed and organized. We had also taken a birthing class and written a birth plan in an attempt to get a handle on the process of childbirth, which was as yet unknown to us. So, when we headed for the hospital, we were a little anxious about delivery and I was in quite a bit of pain, but above all we were excited at the prospect of meeting our son and holding him in our arms for the first time.
Of course, this story doesn’t have a happy ending, or else we wouldn’t be sitting here today. When we arrived at the hospital, the nurse started hooking me up to the fetal monitor, but couldn’t find a heartbeat. In that moment, I knew something was wrong, but I was in denial while the nurse brought in the ultrasound machine, and eventually called in the doctor with an internal heart monitor. The doctor was the one who finally delivered the news – our son no longer had a heartbeat. As soon as our baby crowned, the doctor could see the reason for the tragedy – his umbilical cord had gone into the birth canal before his head and become crushed as he descended. Our baby boy came into this world silently, when just hours earlier he had been kicking his little legs as I breathed through the early contractions. I have no words to describe our emotions in the minutes and hours that followed. We had arrived at the hospital anticipating the happiest moment of our lives, and instead we were faced with the most devastating.
Although Noah is almost always on my mind, there are times when this whole experience is surreal. I carried my son for nine months, feeling his every movement, getting to know his personality and imagining the future we would have as a family. I went through the pain of childbirth to deliver him, yet to the outside world, there is no evidence that I am a mother. I’m not pushing a stroller through the neighborhood, or carrying my infant into the grocery store, or chatting with other mothers about sleep deprivation and baby food. Sometimes, I start to wonder if I’m truly a mother at all.
The name Noah means peace and comfort. When we put that name at the top of our list months before Noah was born, we had no idea how fitting it would be. We hope and pray that the passage of this bill will bring some measure of peace and comfort to the parents of stillborn babies by recognizing the children they loved and nurtured, but to whom they had to say goodbye far too early.
Mark
Three of those four pictures (indicating poster) are of our Noah. To the uninformed onlooker, that’s just a sweet, little sleeping child. There’s no pain or awkwardness when those uninformed people look at the pictures. But to me, I feel love, and pride, and confusion, and devastating sorrow.
So what’s the difference between how I view those pictures and how the uninformed view them? A blissful ignorance is one difference, but to look at it from another angle, the difference is minutes. Maybe 5 minutes, maybe 30 – we don’t know exactly how much time had passed between when Noah left us, and when we arrived at the hospital. But we were close. We were just moments from being joyful parents – just moments from being ignorant to the fact that the parents of stillborn children are left with nothing, but a death certificate. We were so close, but that wasn’t God’s plan for us…
As Lindsay has already told you, we arrived expecting to deliver a healthy baby, and within minutes, we were told there was no heartbeat. Less than an hour later, Lindsay delivered our baby. Then, we were ushered off of the maternity ward to a recovery room. The two of us squeezed into one hospital bed, and there we began life as the parents of a stillborn child.
The staff at Southern Maine Medical Center was very good. They were gracious and giving. We were fortunate to be able to hold our son three times that day, including the opportunity to have these professional pictures taken. We were able to take in our son’s perfection - his ten fingers and ten toes, the gorgeous strawberry blonde hair of his grandfather, his mother’s cheeks, his father’s chin. Everything was perfect, except the silence of his heart.
Between the times with our son, there is very little time to grieve on that first day. Instead, we were forced into action – painful phone calls, funeral arrangements, whether to donate breast milk, and of course, a name for our baby. Throughout the pregnancy, we struggled to find the right name for our child. We had even joked that once we arrived at the hospital, we’d be forced to settle on a name or else they wouldn’t let us take our baby home. As it turned out, we were forced to settle on a name, and as it turned out we realized how much we had loved the name Noah James all along. So much so, that we had a moment of deliberation as to whether we should give this name to our stillborn child or whether we should save it for a future, living son. Those thoughts were fleeting, as we quickly realized that this is our son who we love, and he is Noah. That realization was uplifting, but I was quickly snapped backed to our sorrowful reality when I realized the first place I would have to write that name – on Noah’s death certificate.
Down the hall, in the maternity ward, all of those parents were writing names on birth certificates, but we were writing on a death certificate. State law required Noah’s death to be part of the vital record, because as dictated by the uniform determination of death act, adopted by the United States in 1981, anyone with irreversible cessation of all functions of the entire brain is dead. I have no problems with that definition of death. My issue is that the term cessation implies that the function had taken place. Noah had brain function. Noah was alive. We’re simply asking that if his death be a vital record, that his life also be vital record.
Mothers’ Day is in 4 days. Lindsay is a mother. On a human level, everyone can see that, but on the state level there is no recognition for that beautiful boy that Lindsay nurtured for 9 months. So, what do I get the mother of a stillborn child for Mothers day? I’d like to get her a nice frame for the birth certificate that you all can make happen for us. To paraphrase the poster – Noah and so many others were stillborn, but they were STILL BORN. Please pass this bill. Thank you for your time.
I could ramble on describing the day, but I’ll spare you the nitty-gritty details and just say that our turn did come eventually, though not before the committee was tired and perhaps just a little cranky. Mark and I were the first to testify, and we made it through, though both of us struggled to maintain composure and neither of us was able to avoid being teary. When we were finished, four other people testified, including people from our support group and one woman who saw our story on the news.
No one stood up to oppose the bill, but the director of the Maine Center for Disease Control did stand up as “neither for nor against” because she wanted to voice concerns over the current language of the bill. She had several points, but the one that potentially going to cause us the most trouble is related to making the certificate of birth resulting in stillbirth a vital record – apparently the CDC director is worried doing so could open the door for increased identity theft. She suggested instituting a “commemorative” birth certificate, but our goal in trying to pass this legislation is to make sure our babies are recognized by the state, not just to get pieces of paper with their names on them. After the hearing, the CDC director came out in the hall to discuss the situation with us and was very sympathetic to our cause, but was adamant about the vital statistic piece. We agreed to do more research and to send her amendment language that might satisfy both parties.
Today, we have been working on finding out how the other 26 states that have passed similar legislation are handling this issue. Our deadline is tight, since the work session in which the committee will vote is scheduled for tomorrow afternoon. I’m hoping we can get to a place where everyone is happy, so we can move this bill on to the next stage. Based on the communications we've had today, things are looking promising. I'll keep you posted.
Below, I will paste the text from the testimonies Mark and I gave. I’m also going to insert a picture of the poster Kathy made for us to set up in front of the podium as we testified.
Mark and Lindsay Schuenke TestimonyLindsay
Senator Brannigan, Representative Perry and members of the committee, we are Mark and Lindsay Schuenke from Biddeford and we are here to support LD 361. In the interest of this bill, we would like to tell you the story of our son, Noah James Schuenke.
I found out I was pregnant with our first child on January 18, 2008. We were thrilled – Mark had a good job, I had started working part-time from home, we had purchased a house – it felt like the right time to add a baby to our family. During the eight months that followed, I progressed through a normal pregnancy, never giving the doctors any reason for concern. We found out we were having a boy, and we both enjoyed getting to know our son as he moved around in my belly.
By the time I went into labor nine days before my due date, we were ready: the nursery was decorated, the diapers were stacked, the car seat was installed, the little clothes were washed and organized. We had also taken a birthing class and written a birth plan in an attempt to get a handle on the process of childbirth, which was as yet unknown to us. So, when we headed for the hospital, we were a little anxious about delivery and I was in quite a bit of pain, but above all we were excited at the prospect of meeting our son and holding him in our arms for the first time.
Of course, this story doesn’t have a happy ending, or else we wouldn’t be sitting here today. When we arrived at the hospital, the nurse started hooking me up to the fetal monitor, but couldn’t find a heartbeat. In that moment, I knew something was wrong, but I was in denial while the nurse brought in the ultrasound machine, and eventually called in the doctor with an internal heart monitor. The doctor was the one who finally delivered the news – our son no longer had a heartbeat. As soon as our baby crowned, the doctor could see the reason for the tragedy – his umbilical cord had gone into the birth canal before his head and become crushed as he descended. Our baby boy came into this world silently, when just hours earlier he had been kicking his little legs as I breathed through the early contractions. I have no words to describe our emotions in the minutes and hours that followed. We had arrived at the hospital anticipating the happiest moment of our lives, and instead we were faced with the most devastating.
Although Noah is almost always on my mind, there are times when this whole experience is surreal. I carried my son for nine months, feeling his every movement, getting to know his personality and imagining the future we would have as a family. I went through the pain of childbirth to deliver him, yet to the outside world, there is no evidence that I am a mother. I’m not pushing a stroller through the neighborhood, or carrying my infant into the grocery store, or chatting with other mothers about sleep deprivation and baby food. Sometimes, I start to wonder if I’m truly a mother at all.
The name Noah means peace and comfort. When we put that name at the top of our list months before Noah was born, we had no idea how fitting it would be. We hope and pray that the passage of this bill will bring some measure of peace and comfort to the parents of stillborn babies by recognizing the children they loved and nurtured, but to whom they had to say goodbye far too early.
Mark
Three of those four pictures (indicating poster) are of our Noah. To the uninformed onlooker, that’s just a sweet, little sleeping child. There’s no pain or awkwardness when those uninformed people look at the pictures. But to me, I feel love, and pride, and confusion, and devastating sorrow.
So what’s the difference between how I view those pictures and how the uninformed view them? A blissful ignorance is one difference, but to look at it from another angle, the difference is minutes. Maybe 5 minutes, maybe 30 – we don’t know exactly how much time had passed between when Noah left us, and when we arrived at the hospital. But we were close. We were just moments from being joyful parents – just moments from being ignorant to the fact that the parents of stillborn children are left with nothing, but a death certificate. We were so close, but that wasn’t God’s plan for us…
As Lindsay has already told you, we arrived expecting to deliver a healthy baby, and within minutes, we were told there was no heartbeat. Less than an hour later, Lindsay delivered our baby. Then, we were ushered off of the maternity ward to a recovery room. The two of us squeezed into one hospital bed, and there we began life as the parents of a stillborn child.
The staff at Southern Maine Medical Center was very good. They were gracious and giving. We were fortunate to be able to hold our son three times that day, including the opportunity to have these professional pictures taken. We were able to take in our son’s perfection - his ten fingers and ten toes, the gorgeous strawberry blonde hair of his grandfather, his mother’s cheeks, his father’s chin. Everything was perfect, except the silence of his heart.
Between the times with our son, there is very little time to grieve on that first day. Instead, we were forced into action – painful phone calls, funeral arrangements, whether to donate breast milk, and of course, a name for our baby. Throughout the pregnancy, we struggled to find the right name for our child. We had even joked that once we arrived at the hospital, we’d be forced to settle on a name or else they wouldn’t let us take our baby home. As it turned out, we were forced to settle on a name, and as it turned out we realized how much we had loved the name Noah James all along. So much so, that we had a moment of deliberation as to whether we should give this name to our stillborn child or whether we should save it for a future, living son. Those thoughts were fleeting, as we quickly realized that this is our son who we love, and he is Noah. That realization was uplifting, but I was quickly snapped backed to our sorrowful reality when I realized the first place I would have to write that name – on Noah’s death certificate.
Down the hall, in the maternity ward, all of those parents were writing names on birth certificates, but we were writing on a death certificate. State law required Noah’s death to be part of the vital record, because as dictated by the uniform determination of death act, adopted by the United States in 1981, anyone with irreversible cessation of all functions of the entire brain is dead. I have no problems with that definition of death. My issue is that the term cessation implies that the function had taken place. Noah had brain function. Noah was alive. We’re simply asking that if his death be a vital record, that his life also be vital record.
Mothers’ Day is in 4 days. Lindsay is a mother. On a human level, everyone can see that, but on the state level there is no recognition for that beautiful boy that Lindsay nurtured for 9 months. So, what do I get the mother of a stillborn child for Mothers day? I’d like to get her a nice frame for the birth certificate that you all can make happen for us. To paraphrase the poster – Noah and so many others were stillborn, but they were STILL BORN. Please pass this bill. Thank you for your time.
Monday, May 4, 2009
Noah’s Law
A few months after we lost Noah, we became involved with a piece of legislation to allow the parents of stillborn children to receive a certificate of birth resulting in stillbirth. As the Maine law currently stands, a child who is stillborn (definition: born after 20 weeks gestation and never takes a breath) is required to have a death certificate, but is not eligible to receive a birth certificate. This situation seems to defy logic: how can there be a death if there was never a life?
Kathy, the lactation consultant at the hospital where I delivered Noah, has actually been the driving force behind this bill. She was at the hospital the day we were there, and was helping fill out our paperwork when she noticed the conspicuous absence of a birth certificate. After some research online, she discovered that 25 states in the U.S. have enacted legislation to allow birth certificates for stillborn babies, but Maine was not yet one of them. Kathy decided to take action by contacting our local state senator and asking her to initiate a new law.
I started developing a relationship with Kathy when I decided to donate my breast milk. She was incredibly supportive of the process, bringing me a pump and answering all the questions I had about lactation. I talked with her about how donating breast milk was one tangible way I could bring good from the tragedy we had experienced, and she tentatively brought up the idea of working on the bill as something else we could do to help Noah’s short existence have a positive impact on the world.
Up until that point, Mark and I had simply accepted the fact that we weren’t going to get a birth certificate. We were still in the early stages of grief, and hadn’t thought to explore the legalities of the situation. However, we were certainly aware of not getting a birth certificate, particularly on the day we spent in the hospital. Before Noah was born, we had been waffling between a few different names, and joked that we were going to be forced to choose one when filling out the birth certificate. Instead, we found ourselves faced with the task of choosing a name for our son’s death certificate. Filling out those forms felt like adding insult to injury, but we had no choice.
When Kathy asked if we would become the face of this bill by putting our son’s name on it and sharing our story, we didn’t hesitate before saying yes. If this bill passes, the parents who go through this in the future will be spared the sadness of seeing their babies’ names on a death certificate but never having official recognition of the birth. We know this recognition will just be a small consolation in the vast sea of grief parents have to navigate when they experience stillbirth, but it’s something.
On Wednesday, there will be a hearing before the committee that is considering this bill. We’ve been gathering support from various forms, from petition signatures to e-mails to state representatives. We’re also hoping a fairly good crowd will turn out at the hearing itself, though it’s going to happen in Augusta, which is a bit of a drive for everyone in our network of friends. Mark and I are going to get on the stand to share our story, so we are praying for strength and peace as we try to find the right words.
I will post an update after the hearing on Wednesday, including the written text of our testimony. In the meantime, please be praying for us and the passage of this bill.
Kathy, the lactation consultant at the hospital where I delivered Noah, has actually been the driving force behind this bill. She was at the hospital the day we were there, and was helping fill out our paperwork when she noticed the conspicuous absence of a birth certificate. After some research online, she discovered that 25 states in the U.S. have enacted legislation to allow birth certificates for stillborn babies, but Maine was not yet one of them. Kathy decided to take action by contacting our local state senator and asking her to initiate a new law.
I started developing a relationship with Kathy when I decided to donate my breast milk. She was incredibly supportive of the process, bringing me a pump and answering all the questions I had about lactation. I talked with her about how donating breast milk was one tangible way I could bring good from the tragedy we had experienced, and she tentatively brought up the idea of working on the bill as something else we could do to help Noah’s short existence have a positive impact on the world.
Up until that point, Mark and I had simply accepted the fact that we weren’t going to get a birth certificate. We were still in the early stages of grief, and hadn’t thought to explore the legalities of the situation. However, we were certainly aware of not getting a birth certificate, particularly on the day we spent in the hospital. Before Noah was born, we had been waffling between a few different names, and joked that we were going to be forced to choose one when filling out the birth certificate. Instead, we found ourselves faced with the task of choosing a name for our son’s death certificate. Filling out those forms felt like adding insult to injury, but we had no choice.
When Kathy asked if we would become the face of this bill by putting our son’s name on it and sharing our story, we didn’t hesitate before saying yes. If this bill passes, the parents who go through this in the future will be spared the sadness of seeing their babies’ names on a death certificate but never having official recognition of the birth. We know this recognition will just be a small consolation in the vast sea of grief parents have to navigate when they experience stillbirth, but it’s something.
On Wednesday, there will be a hearing before the committee that is considering this bill. We’ve been gathering support from various forms, from petition signatures to e-mails to state representatives. We’re also hoping a fairly good crowd will turn out at the hearing itself, though it’s going to happen in Augusta, which is a bit of a drive for everyone in our network of friends. Mark and I are going to get on the stand to share our story, so we are praying for strength and peace as we try to find the right words.
I will post an update after the hearing on Wednesday, including the written text of our testimony. In the meantime, please be praying for us and the passage of this bill.
Subscribe to:
Posts (Atom)