One of the many feelings CJay and I have been struggling with these past 8 weeks is how to know who we are now. It's so obvious that losing a child changes you, and that's what everyone says, but how are we supposed to know exactly who we are now? I know eventually we'll be able to look back and see where we've come from and how we've changed, but who are we now, right now?
We've been so scarred by losing Isaac that, of course, we will never be the same, but we can't seem to wrap our minds around exactly how we're different. We're sadder now. We're more thankful. We're somber at times. We're thoughtful and angry and a million other feelings that have no titles. There are times when I think this Isaac-shaped hole can never be filled. And I don't mean replaced, I mean filled. Filled with other children and happier moments. I believe the bible, so I believe God will do what he promises. But I find myself asking God how he intends to fill this hole in our hearts that's so perfectly shaped for that person? For Isaac.
CJay and I are logical people. We can tear away our at feelings in search of logic (and we do), but at the end of the day, grief defies logic. We're spinning on a merry-go-round and when that logic passes, we grab on tight. Eventually we lose our grip and slouch down while we spin around, only to realize we wanted nothing to do with logic anyway. What do we care about logic? We don't even know who we are now.
I know the logical answer - no one will ever take the place, nothing can ever fill that hole, even when you have other children you'll always remember. Yes, I know. I know. But I don't care. I want my Isaac-shaped hole filled with Isaac. I don't want it filled with any other tidbits of happiness. I don't want to sit like a child and force a triangle-shaped block into a square hole. I want it to fit just right.
I don't think there's really an answer for who we are. We're not who we were. We'll never be the same. I believe CJay and I will continue day by day to gracefully accept this trial and turmoil, and we'll turn around one day and look into our past and say, "That was bad, but at least now we know who were back then."
Thursday, April 30, 2009
Sunday, April 26, 2009
A few of my favorites
We have so many good pictures of Isaac. It's hard to pick which ones I like the most because each time I look at them, I see something I didn't see before. I'm so thankful for all the pictures we have, and here are just a few of my favorites.
Thursday, April 16, 2009
More of Isaac
Yesterday we got the pictures and slideshow from Sheila, the Now I Lay Me Down to Sleep photographer. I can't believe how wonderful the pictures are. And the slideshow...just get the tissues. I'm including some info about the song used in the slideshow, "Smallest Wingless." For those of us who just went through this and for those of you who've lost a child, this song will break your heart. Every word is true.
From Craig Cardiff's website:
The song 'Smallest Wingless' paints two parents welcoming a newborn into the world, only to be told that the child is sick, and will only survive a few hours. "The premise for this song came from a friend who is a photographer volunteering with the organization www.nowilaymedowntosleep.org and hearing her stories about what parents went through." Stark lyrics (sadness is just loved wasted, with no little heart to put it inside) are beautifully framed by piano and string quartet.
From Craig Cardiff's website:
The song 'Smallest Wingless' paints two parents welcoming a newborn into the world, only to be told that the child is sick, and will only survive a few hours. "The premise for this song came from a friend who is a photographer volunteering with the organization www.nowilaymedowntosleep.org and hearing her stories about what parents went through." Stark lyrics (sadness is just loved wasted, with no little heart to put it inside) are beautifully framed by piano and string quartet.
Thursday, April 9, 2009
Tiny Feet
CJay and I sent a copy of Isaac's foot prints to My Forever Child. They create custom jewelry and other keepsakes. I'm so glad we did it. The charm and keychain are beautiful.
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We all really loved Isaac's feet. They were so small, and his big toe was separated from his other toes. The separated big toe is actually a marker for many genetic conditions, but that didn't make it less adorable. And his feet were just so dang small!
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We all really loved Isaac's feet. They were so small, and his big toe was separated from his other toes. The separated big toe is actually a marker for many genetic conditions, but that didn't make it less adorable. And his feet were just so dang small!
Monday, April 6, 2009
This chapter
It's not like I haven't been thinking about how to write this chapter of the story - the part after Isaac's birth. I have. I just don't know what to say. How can I describe how we felt when we finally knew the answer to 24.5 weeks of questions? How can I explain how our hearts broke when we had to see Isaac struggling to breathe? How do I say how hard it was to watch our family holding him knowing that was all they'd ever have? I don't think I can.
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Thursday morning, I think it was around 5 a.m., the neonatologist who had been in the OR came into our room. He said he was certain Isaac had Trisomy 18. He hadn't seen it very much, but the condition has specific features: elfin ears, short neck, small facial features, clenched hands. CJay asked how long he thought Isaac might live. I don't remember the answer because at that same moment my mom asked me, "which one is that?" (Once we knew about the cystic hygroma, we'd all done our research - Turner's, Noonan's, Down's.) I didn't know which syndrome, but I knew one thing: it was lethal. We cried a little, but not as much as you might think. It was an answer. Not the one we wanted, but at least our months of limbo were over. At least we didn't have to wonder anymore.
It was a while before we got to see Isaac. Mom and CJay went down to the NICU before I did. I had to wait on Nurse Ratched to get a wheelchair and take her sweet time helping me up. Of course she tugged on my catheter and hit every threshold at mock speed on the way to the NICU. (Did I mention she pulled on my catheter?)
I could barely stand up to see Isaac in the incubator. I was in terrible pain, but of course I had to look at him. I had the same feeling I had when we first saw Isaac in the OR - is he mine? He was so small. The respirator was loud. Alarms were sounding. It was hot. And I could see more wires and tubes than skin. CJay said the nurse told them not to touch him. "He's mine! I'll touch him if I want!" I didn't mean to scream about it, but we should be able to touch him. We had waited like every other couple waits. We were shocked at his mere existence, and he wasn't even going to live. So I touched him. All three of us touched him.
I really don't remember many details of the rest of that day. After my dad arrived, CJay and my mom headed back to our house to shower and meet CJay's parents. I was glad Dad was with me when the doctor came to say that Isaac's lung were immature and he had crashed. We would have to decide when we wanted to take him off the respirator. I didn't know how to answer her questions or what I was supposed to ask. But Dad talked for me. He asked how long Isaac would live.
"Give us a number. Are we talking 50 days?"
"I don't think he'll live 50 minutes."
What do you say to that?
Dad didn't want me to call CJay right away. He told me to wait and let him sleep and shower so that he could handle what was getting ready to happen. He was right. It was better for CJay. The doctor came back a couple hours later to say the test results were back. Isaac had Trisomy 18. Like she had said before, it didn't change anything. Either way, his lungs couldn't support him. I wasn't afraid, just tired, angry, sore, and shocked. I couldn't figure out why it was taking CJay so long to get back to the hospital. In the meantime, Dad took me back to the NICU. I'll always be thankful that he and I had a chance to be alone with Isaac. We cried and stared at him and talked. My dad was stronger than I could be, and it was what I needed.
When CJay got back to the hospital, I told him the latest news. We went to the NICU together and were finally able to hold Isaac. I can never explain how such intense joy and sorrow can exist simultaneously. It makes no sense that we could know the outcome but still laugh and smile. Maybe some people can't, but we did.
We spent Friday holding Isaac. The NICU nurses brought him to our room and let us take turns holding him while a photographer from the organization Now I Lay Me Down to Sleep took pictures. It was bittersweet. After an hour or so, the nurses took Isaac back to the NICU. I wanted to take a break before we had to say goodbye.
It was almost 8:30 p.m. before we went to our private family room in the NICU. We took turns holding Isaac again. We took pictures and cried. Seth played music from his iPhone, and Isaac kicked and squirmed to the sound of the piano - what I had felt many times before. (CJay even told Isaac a dirty joke.) CJay and I changed his diaper and dressed him. It wasn't necessary, but it was special.
I had to be the one to say it was time to take him off the respirator. As his mother, I felt like I had to be the one to let him go. His color was getting darker, a sign that the carbon dioxide was building up in his system. Our NICU nurse and next door neighbor, Kitty, came in to take out Isaac's breathing tube. She had come to the hospital on her day off to be with us. I had asked her to be the one to take out the breathing tube. She was wonderful; I could go on and on about what she did for us.
Isaac didn't live long without the breathing tube. We were so sad, so tired, but Isaac was worth that. He was worth those 24.5 weeks of questions and worry and prayers and tears. I think people need to know that - he was really worth it.
-------------------------
Thursday morning, I think it was around 5 a.m., the neonatologist who had been in the OR came into our room. He said he was certain Isaac had Trisomy 18. He hadn't seen it very much, but the condition has specific features: elfin ears, short neck, small facial features, clenched hands. CJay asked how long he thought Isaac might live. I don't remember the answer because at that same moment my mom asked me, "which one is that?" (Once we knew about the cystic hygroma, we'd all done our research - Turner's, Noonan's, Down's.) I didn't know which syndrome, but I knew one thing: it was lethal. We cried a little, but not as much as you might think. It was an answer. Not the one we wanted, but at least our months of limbo were over. At least we didn't have to wonder anymore.
It was a while before we got to see Isaac. Mom and CJay went down to the NICU before I did. I had to wait on Nurse Ratched to get a wheelchair and take her sweet time helping me up. Of course she tugged on my catheter and hit every threshold at mock speed on the way to the NICU. (Did I mention she pulled on my catheter?)
I could barely stand up to see Isaac in the incubator. I was in terrible pain, but of course I had to look at him. I had the same feeling I had when we first saw Isaac in the OR - is he mine? He was so small. The respirator was loud. Alarms were sounding. It was hot. And I could see more wires and tubes than skin. CJay said the nurse told them not to touch him. "He's mine! I'll touch him if I want!" I didn't mean to scream about it, but we should be able to touch him. We had waited like every other couple waits. We were shocked at his mere existence, and he wasn't even going to live. So I touched him. All three of us touched him.
I really don't remember many details of the rest of that day. After my dad arrived, CJay and my mom headed back to our house to shower and meet CJay's parents. I was glad Dad was with me when the doctor came to say that Isaac's lung were immature and he had crashed. We would have to decide when we wanted to take him off the respirator. I didn't know how to answer her questions or what I was supposed to ask. But Dad talked for me. He asked how long Isaac would live.
"Give us a number. Are we talking 50 days?"
"I don't think he'll live 50 minutes."
What do you say to that?
Dad didn't want me to call CJay right away. He told me to wait and let him sleep and shower so that he could handle what was getting ready to happen. He was right. It was better for CJay. The doctor came back a couple hours later to say the test results were back. Isaac had Trisomy 18. Like she had said before, it didn't change anything. Either way, his lungs couldn't support him. I wasn't afraid, just tired, angry, sore, and shocked. I couldn't figure out why it was taking CJay so long to get back to the hospital. In the meantime, Dad took me back to the NICU. I'll always be thankful that he and I had a chance to be alone with Isaac. We cried and stared at him and talked. My dad was stronger than I could be, and it was what I needed.
When CJay got back to the hospital, I told him the latest news. We went to the NICU together and were finally able to hold Isaac. I can never explain how such intense joy and sorrow can exist simultaneously. It makes no sense that we could know the outcome but still laugh and smile. Maybe some people can't, but we did.
We spent Friday holding Isaac. The NICU nurses brought him to our room and let us take turns holding him while a photographer from the organization Now I Lay Me Down to Sleep took pictures. It was bittersweet. After an hour or so, the nurses took Isaac back to the NICU. I wanted to take a break before we had to say goodbye.
It was almost 8:30 p.m. before we went to our private family room in the NICU. We took turns holding Isaac again. We took pictures and cried. Seth played music from his iPhone, and Isaac kicked and squirmed to the sound of the piano - what I had felt many times before. (CJay even told Isaac a dirty joke.) CJay and I changed his diaper and dressed him. It wasn't necessary, but it was special.
I had to be the one to say it was time to take him off the respirator. As his mother, I felt like I had to be the one to let him go. His color was getting darker, a sign that the carbon dioxide was building up in his system. Our NICU nurse and next door neighbor, Kitty, came in to take out Isaac's breathing tube. She had come to the hospital on her day off to be with us. I had asked her to be the one to take out the breathing tube. She was wonderful; I could go on and on about what she did for us.
Isaac didn't live long without the breathing tube. We were so sad, so tired, but Isaac was worth that. He was worth those 24.5 weeks of questions and worry and prayers and tears. I think people need to know that - he was really worth it.
Thursday, April 2, 2009
It's CJay's Birthday!
CJay turns 28 today. Just thought he deserved a shout out! He's been incredibly busy at work, and we'll both be happy when he's finished with tax season.
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