Wednesday, December 16, 2009


“The years that are gone seem like dreams—if one might go on sleeping and dreaming—but to wake up and find—oh! well! Perhaps it is better to wake up after all, even to suffer, rather than to remain a dupe to illusions all one’s life.”
- Edna, The Awakening

I remembered something today.

I remember when the nurse came in my room on Saturday all those months ago. I remember being ready to leave, moving slowly, deliberately, so as not to jar my incision. I remember standing near the window in my room. The nurse was shorter than me and her hair was dark. She, like all the other nurses, exuded sympathy when she entered my room. Of course they knew. I remember the nurse saying she was sorry. Sorry about my baby. She meant it; I could tell.

I spoke as deliberately as I moved: "Thank you. He was worth it. It's really important to me that people know. He was worth it."
She began to cry and left the room.

It is as easy for me to forget that Isaac was worth it as it is for me to remember that moment and that feeling. Maybe it sounds odd, but the pain can be debilitating. Sometimes I don't want to go there. Most of the time I struggle with knowing that these feelings are just part of who I am. But so is Isaac. His short life and death awakened in me something that I may never fully understand. I think it's strength and determination and maybe some grace. It's been so hard, and Christmas has made this month even harder, but I'm so thankful.

Perhaps it IS better to wake up after all, even to suffer, rather than to remain a dupe to illusions all one’s life. After all, my life is richer and more meaningful now.

Wednesday, December 9, 2009

A Letter to Kay Jewelers

To Whom It May Concern:

I saw your latest Christmas commercial again last night. You know, the one where the mom is rocking her infant next to the Christmas tree. Her husband walks in and she says, "You're up? It's 2 a.m." He replies, "It's not just 2 a.m. It's 2 a.m. Christmas morning. Our first Christmas together as a family."

I know the powers that be are just tugging at the heart strings to make some sales. I know you think it's sweet and so many Americans can relate to that special first Christmas as a family. But there are those of us who are trying to forget that this SHOULD have been their first Christmas as a family. There are those of us who are buying gifts, trimming the tree, and watching movies in a vain attempt to forget that this year SHOULD have been sweet and memorable, but it's really not.

I'm not asking you to take the commercial off the air, but maybe give us a warning: "The commercial you're about to see is graphic, and viewer discretion is advised."


P.S. I might feel better if you send diamonds or maybe gold.

Tuesday, December 1, 2009

Prayers for a friend

My friend, Kimberly, is in need of prayers. Her son, Hudson, was born still at 30 weeks back in January, and she's now 10 weeks along with another child. She's seeing a specialist tomorrow because her doctor is concerned about something he saw on the ultrasound. I'm including the link to her blog, so you can read her latest post.

Happily Henninger

Tuesday, October 27, 2009


I've been thinking a lot about the upcoming 8-month date. Eight months already! I don't know how I feel about it. There's so much guilt involved with feeling better. I'm sure everyone goes through that when they lose a friend or family member. Is it okay to be happy? Is it okay to smile? Is it okay to think about the future? I know it is. I know I'm supposed to do that, but it's hard. It's hard because I can't quite figure out how to move forward with life and still hold on to Isaac. I have been moving ahead, feeling better and more like myself. I've enjoyed that, but in some ways it seems so unfair to Isaac.

Don't get me wrong, things have been going well. I didn't know if there would come a time when I could say that. Things are good and calm. I had forgotten what it was like to be free from the stress of the pregnancy. Not many people really knew what CJay and I were dealing with every week. Every appointment was a new discovery that left us sick with worry and dread. That went on for so long, and now, it's like we're humans again. And therein lies the problem. Being this way - better - is the opposite of how we felt with Isaac. Maybe I think I have to be like I was because that's the only way I can keep him close to me.

We still miss Isaac. We still talk about him and wonder where we'll go from here. More children? Maybe. After Isaac was born, I thought I should have as many children as possible. He was amazing and that feeling was overwhelming. As time has passed and we've begun to experience all the feelings that we couldn't process before (I'm talking about all those weeks of the unknown and the appointments and ultrasounds and doctors.), CJay and I have wondered if we'll ever want to have more children. It's a complicated feeling. I know I'll always want Isaac, but will I want someone else as well? I don't know. And I know that each person, each couple has to make that choice when the time comes.*

*I'm not sure where I was going with this post, but thanks for letting me ramble a bit. I usually don't let myself do that on the blog.

Wednesday, October 14, 2009

Wave of Light

I know now how important it is to remember those who've passed on. My best friend lost her dad when we were in college, and we talked so much about her grief and pain. I cried for her because I knew how much she was hurting. However, I never really understood the grief she was living with until Isaac died. We all want our family and friends remembered, whether they lived 2 days or 60 years. October is Pregnancy and Infant Loss Awareness month. The truth is that if I hadn't been touched by infant loss this year, I wouldn't think much about an awareness month. But suffering makes us so much more cognizant of others and our surroundings. Of course, you would agree that we all should be sensitive without the tragedies, but that is not really the point. So, tomorrow light a candle if you've lost a child. Light a candle if you know someone who's lost a child. Or just light a candle because maybe, just maybe, what CJay and I have been through has made you more aware.

In 1988, the month of October was named national Pregnancy and Infant Loss Awareness Month. October 15th has further been recognized as the international day of awareness.

Organizations across the globe ask that you take part in the "Wave of Light" by lighting a candle at 7 p.m. in your local time zone. Please take a moment on this day for reflection and remembering our lost children by lighting a candle at home, in groups and gatherings, attending a mass, or calling someone close to you who has experienced this loss. No matter how recent or how long ago, every parent would love to know that someone is remembering their angel child.

Tuesday, October 6, 2009

Successive Approximation (or 7 months later)

One of my favorite psychology classes was behavior modification, and one of my favorite topics was successive approximation. I had seen the technique used before and I had used it myself, but it was fascinating to find out that the technique had a name. It's a fairly simple conditioning tool: If I want my new puppy Cocoa (yes, we got a puppy) to come when I say "come," I offer her a reward for every step she takes toward me. So, I say "Cocoa, come." She looks at me as if to say "huh?" and then takes a step in my direction. I reward her with praise and a treat for that one step. With every additional step, she gets another reward. She doesn't have to come all the way to me on the first try. I just want her to move in my direction. I am reinforcing approximations of the behavior I desire from Cocoa. It won't be long before she comes when I call.

All of this came to mind yesterday when I was thinking back on these past 7 months. I remember thinking that I might not make it 3 months, much less 7. Those first few days after Isaac died, I had to remind myself to breath. I didn't sleep well. I didn't eat much. With each passing week, breathing became easier. I stopped reliving every moment of his short life. I started sleeping better.

At first, the grief was an intruder into our lives. As time passes, grief is a common companion. He's woven into every day and I accept it. I've stopped resisting. I've started enjoying the little things about life again. And each day I breath and work and eat and sleep reinforces the approximation of living. It won't be long before I feel like I really am living again. I'm finally looking forward to it.

Tuesday, September 29, 2009

Tree of Life

On Sept 26, CJay and I attended a memorial service for families who had lost children at the UVA Children's Hospital. When we received the invitation in the mail a few weeks ago, I was a little excited. Yes, excited. I know it's odd, but as time passes, people move on. As normal as that is, and as much as we expect that to happen, it's still heart warming when someone acknowledges what we've been through and, most importantly, our son.

As the day of the service approached I became anxious about what we would have to endure (tears? stories? questions?), but the service was a wonderful way to recognize those of us who have suffered this tragedy. There were tears and stories and questions, but the organizers handled the service with such care and tenderness.

A few parents stood to tell their stories, and then each child's name was read. When your child's name was called, you walked to the front of the auditorium and placed a carnation on the Tree of Life in memory of your child.

There were so many names. Too many. It was hard to look at those other parents so overwhelmed with their grief. It was hard to know that we're just like them. In some ways, it's reassuring to see so many people struggling with this loss. I hate it, but it makes me feel better knowing we're not alone. I suppose it makes me more confident that CJay and I will survive.

Tuesday, September 8, 2009

Looking back

I didn't intend to go so long between posts, but we've been busy. It's been nice to have things occupying us these past few weeks. CJay is taking courses in preparation for his CPA exam, we went on vacation, and I've traveled for work.

I wanted to write something on September 5. Something that said where we've been, where we're going, how we're feeling. But I didn't. Instead I've been thinking about a different anniversary. We're quickly approaching the 1-year anniversary of that fateful 12-week ultrasound - the day we first heard "cystic hygroma." It was September 18.

I remember how I felt that day. I remember wondering what was taking the doctor so long. She must be busy with another patient, right? I remember Dr. O saying "it's a cystic hygroma." She had just been to a conference where the leading researcher on this topic had been discussing her study results. She gave us the power point presentation with her notes scribbled on the printed slides. Dr. O said the majority of babies with cystic hygromas are born with Turner's syndrome. I knew we weren't having a girl. I knew that all along. (Turner's is a monosomy X chromosomal disorder, meaning it only occurs in girls.) I asked Dr. O a hundred questions. CJay sat quietly most of the time. I think he was in shock at the news.

The anniversary of the beginning of our twisted adventure seems more monumental to me than a 6-month birthday for Isaac. It seems more important to note that we're approaching 1 year since we changed forever. It has been a gradual process. One where we felt mostly like puppets on a stage. It was a process that robbed us of our innocence. No matter how naive that may sound, I believe death does that to its victims. Mostly, it's the only way I know to describe how different I feel and have felt for almost a year.

We've learned many lessons this year, cried a million tears, and marveled over the miracle that lived only 2 days. I'm convinced I'll never know why we went through this, but 1 year later, I know that I would do it all again for those 2 days with Isaac.

Tuesday, July 28, 2009

Isaac's scrapbook

I've never done any scrapbooking, which is probably good for my rage (Don't ever ask about the time I learned to crochet. Can you say homicidal?). I just when everything isn't perfect the first time. I do better with something more physical like sports. Fortunately, my sister-in-law loves scrapbooking and, to my knowledge, hasn't turned homicidal in the process.

Julie offered to take our photos and numerous ultrasound pictures of Isaac and make us a scrapbook. At first, I wasn't sure I would like a scrapbook. They seem like such happy things. It's not that we weren't happy about Isaac, but there was so much stress involved in the pregnancy. When I look at those ultrasound images, I can remember each appointment and the bad news that followed. I didn't know if putting those memories in a scrapbook would really be what I wanted. But what do I know? The scrapbook is amazing! Julie did a great job! I'm glad she could see the potential when I couldn't.

These pictures just don't do the book justice, but I wanted to share some of the pages anyway.

Monday, July 20, 2009


I really don't enjoy blogging. At first it was difficult for me to write anything at all. I didn't want to expose the struggles of the pregnancy or give minute details about how we were coping. The truth is I don't really want to share all my feelings with everyone. That's why there are long gaps between posts sometimes. I just don't have anything positive to say. I refrain from these posts: "Here are 100 reasons why life sucks now." Or maybe: "I almost pushed someone in front of a car today." Or how about: "I can't stop crying this week and my face will probably always be this puffy."

The truth is that grief has its way with you. I'm up and down and angry and sad. I'm talking zero to 60 in milliseconds. I've had many sleepless nights, and I was having a hard time believing it had anything to do with my grieving. But who am I kidding? Grief leaves its residue on everything. I look in the mirror and see someone different, but people don't treat me that way. It's not like I want them to. Or maybe I do. I don't make decisions as well as I used to. I don't care as much about other people's problems. I don't want to ask about your day. I don't want to hear happy stories.

It's not like that every day. I never see it coming. Some days, the mornings are great and the afternoons are miserable. Some days I want to scream and some days seem completely normal. And I can't find any rhythm to it. Most of the time, I just want to be alone with my agony.

It hasn't helped that I fractured my foot only 2 weeks after I was cleared to begin exercising. I spent 6 weeks in a boot and I'm still restricted (at least for another 2 weeks). I haven't been able to exercise as much as I wanted or lose as much baby weight as I'd hoped. I had planned to be in a 4 miler at the first of September, and I was so excited to begin the training program. Six weeks before the race, I'm still not able to do any jogging - doctor's orders. All of that has heaped frustration upon grief, and there's just no getting around it. I have to live through it. What choice do I have?

I know everyone deals differently with their grief, and here I am. Four and a half months have passed since we lost Isaac, but the stress started last September when we heard "cystic hygroma". I've been trying to cope since then. It just seems like it's been a long road already and I see no signs of relief ahead.

Monday, July 13, 2009

July 4th

We went to DC this year for the Fourth of July. My brother and sister-in-law live in Leesburg, just west of DC. My little brother and his girlfriend drove up from Tennessee, and we all decided to brave the crowds in downtown DC to see the annual fireworks. It was hectic and extremely crowded, but it was so much fun. Watching the fireworks explode over the Washington Monument was breathtaking!

My older brother, Seth, is in the Air Force, and my mom served in the Army. Though neither one of them has fought in a war, they still sacrificed for our country. Our American lives are lavish: grocery stores on every corner, shopping malls, restaurants, clean water, and air conditioning. So many people all over the world don't know where their next meal will come from. Many live in fear. Americans are quick to forget. Men have died. Sons have died. Fathers and mothers have died. Why do we wait until July 4th to remember these sacrifices?

I'd been to the Vietnam Memorial before. I was in 8th grade. I stood at the Wall and watched as one of my teachers located her brother's name. She ran her fingers across his name as she lifted a white piece of paper to the Wall. With some effort she took a pencil and slowly colored back and forth. In just seconds she began crying. She sobbed and could barely breath. Another teacher helped her move away from the wall so that yet another teacher could finish the pencil rubbing. I was only 13 at the time, but I remember wondering why she was crying so hard. It didn't make sense to me that she could be so sad after so many years. I had never experienced that kind of pain and loss. When I was standing at the Wall this July 4th running my fingers across the names, I kept thinking, "whose son are you?" It was all too clear at that moment: my son's name is etched into a memorial too. People will come across his name on the Trisomy 18 foundation site or see his headstone at the cemetery, and they'll ask, "whose son are you?" Now I understand why my teacher sobbed for her brother. It's no way to keep your loved one - only etched in stone, only a memory.

Every American should spend time remembering these sacrifices. Every mother wants their son remembered, whether he died in a battle or in a hospital.


I actually wasn't trying to be profound. I was going to say we had fun and post pics and leave it at that. Oh well. We did have fun! And here are some pics of the trip.

Tuesday, June 9, 2009

His name in writing

We were at home over the weekend for CJay's 10-year high school reunion. It was fun, but in the midst of the festivities, we had to stop by the funeral home to pick out a marker for Isaac's grave. We haven't been home since the graveside service, so this was our first opportunity to meet with someone from the funeral home. Picking out the marker wasn't hard. It was strange but not difficult. I kept thinking about how we picked Isaac's name, and like so many other parents, we had practiced saying it and wondered how he might grow into it. And yet there we were, staring at his name on paper, confirming the spelling, explaining the meaning of Liam, and picking out fonts for his grave's marker. I'm sure this falls high on the list of things a person should never have to do.

On the way home, we stopped by the cemetery. It's a small family cemetery high above Watauga Lake. It's beautiful there. The oak trees are old, the grass a little too long. The breeze from the lake carries the voices of the people down below sitting in the sand. For some reason, the sounds of the children playing were musical. I loved looking down at them knowing they were living when my child couldn't. I felt vindicated, not envious. Children do live. They laugh and smile and enjoy life. I look forward to the day when l hear my children doing the same.

Thursday, May 28, 2009

Moving along, thanks to my fathers

I've been back at work for 6 weeks now, and with each week I've found it easier to be back to "normal." At first I was tormented at work because I had to put on a face and move forward. There was no time to cry or be angry. While I was at home, I had the luxury of feeling whatever emotions came at me. I really didn't know if I would be able to continue pretending to be fine, but the truth is that I have been able to. The truth is I'm fine. I know it sounds impossible: "I'm fine?! My baby died 12 weeks ago. It's not possible to be fine!"

Don't get me wrong, I miss Isaac. I look at his pictures and study his face. I wonder why we couldn't keep him. I allow myself to be sad when necessary, but I'm fine. I may be an atypical type of woman. I'm driven by rationale, logic, thought. I don't want my feelings to guide my decisions or my actions. It does happen, because well, I'm a woman, but when it comes to dealing with these heavy issues, I seek reason and truth. I have my father to thank for that.

My dad is an amazing teacher. He was a teacher by trade for a short time, but he was one of those rare teachers: he was a natural; he was good. He doesn't teach professionally anymore, but that doesn't mean he isn't teaching us at all times. It was actually irritating as a child:
"Look at this plant..."
"After the Civil War..."
"Europeans' doors swing in, not out like Americans'..."

During my high school years, Dad taught the high school Sunday school class at church. He continually stressed how important it was, as a Christian, not to rely on your feelings. God doesn't tell us to praise him when we feel like it. He doesn't say we can do the right thing when we feel like it. You must do it; the feelings will follow.

What an important lesson he taught me. Each time the doctor would find another problem with Isaac - his heart had a defect or his feet seemed rounded - I would be hopeful, angry, devastated. I would tell God that I could not handle losing this child. I couldn't. He was wrong. I wouldn't be content. I wouldn't praise him. I wouldn't. I felt no peace. I felt no joy. I felt no happiness. But I am human and feelings are fickle.

Three months later, I have peace about what we went through. I have peace about God's choice, and I can thank God for giving us Isaac and taking him away. Yes, I said it: I can thank God for taking away my son. I don't rely on my feelings because my feelings would have me screaming at God, bitter with his choice, angry at his audacity. My son? My son? You have nothing better to do than take away my son? That would be easier, I think, than telling God that I'm thankful for this agony. But I've done what my teacher said, and he was right. You must do it; the feelings will follow.

"You will keep in perfect peace him whose mind is steadfast, because he trusts in You."
Isaiah 26:3

Wednesday, May 6, 2009

"How are you doing?"

Honestly, I don't think folks understand the magnitude of what they've been asking for these past two months. Sure, it's an everyday type of question that usually comes with an unconscious response... "I'm fine. How are you?" But this isn't a normal "how are you?" There's nothing normal about this simple question now.

It's so difficult to put into words, but I'll try to paint a basic picture for you. You've just been through the most tragic and painful experience you can imagine. The life you once enjoyed has stopped, and the surreality of the experience is still strong. Your mind struggles to determine where your life is now. None of this feels real.

What is real is you are alive. But you're just going through the motions of living while nothingness (all the feelings you can't describe) weighs down your heart. All you want to do is lie down somewhere alone and die, but you gotta pick up and get back to living, all the while trying desperately to look as if you're holding it together. Then someone asks, "How are you doing?" It hits you like a ton of bricks. You have to make a choice. Do you tell this poor soul how your heart is broken and aching with every beat, that your mind never stops playing this bad dream over and over, and that you wish you were dead because you just can't understand why you're still alive? Or do you say unconvincingly, "I'm doing okay"?

Before Isaac, I never realized how much meaning a "small talk" question could have. This simple phrase invokes the heaviest feelings and emotions when I least expect it. At times it's been a struggle not to pour out the contents of my aching soul. Most of the time folks know about Isaac, but occasionally a person we haven't seen or talked to in a while asks the question we know is inevitable. Lately, I've felt distressed about telling these unsuspecting folks. It's so incredibly hard for them to hear. In a way the story becomes a tragic experience for them too.

So how are we after experiencing Isaac? What is left of us? It's grief. Pure, raw grief. In some attempt to gain an understanding of this new all-consuming state of being, I picked up a book that Whitney had purchased for herself, probably for the same reasons. The first line of C.S. Lewis' A Grief Observed could not be more true. Lewis says, "No one ever told me that grief felt so like fear." The feeling of being afraid seems to control every aspect of life. Each decision and action seems to be derived unconsciously when fear is driving the senses. That is grief.

But grief even goes beyond fear. With fear you prefer to have someone to share it with. I've noticed there are times when I want to share my grief with Whitney or a close friend, and there are times when I want to be left alone and keep it all for myself, almost like a child being selfish with his toys. I don't want folks to know or experience my grief. It's mine, not yours, so don't pretend you know. To add to that layer, I want people to acknowledge Isaac, ask me how we are doing, drop a note or just simply say something, while still leaving me alone with my grief. How does that add up?

I also mentioned nothingness - all the feelings you can't describe. I believe this is a direct element of grief. While the grief is consuming you, the nothingness is just something you have to wade through. There are just simply too many emotions I can't express with words that I've felt since we lost Isaac. Whitney and I have had many conversations trying to sort through the nothingness we felt that day. We've gotten pretty good at talking about the nothingness, but there are never any conclusions.

And so tonight, in honor of Isaac, I grieve. My son lives in my dreams.


Thursday, April 30, 2009

Who are we now?

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."

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 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.


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.


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.

Friday, March 27, 2009


I listened to this song so many times before Isaac was born. I wondered if no matter what happened I would truly feel that I was still standing in God's presence. It's hard to believe that when you're faced with losing something so precious. But this song looped through my head constantly after Isaac was born, and it's true. The world has fallen out from under us, and we're still standing in Him.

Shadowfeet by Brooke Fraser

Walking, stumbling on these shadowfeet
Toward home, a land that I've never seen
I am changing
Less and less asleep
Made of different stuff than when I began
And I have sensed it all along
Fast approaching is the day

When the world has fallen out from under me
I'll be found in you, still standing
When the sky rolls up and mountains fall on their knees
When time and space are through
I'll be found in you

There's distraction buzzing in my head
Saying in the shadows it's easier to stay
But I've heard rumours of true reality
Whispers of a well-lit way

When the world has fallen out from under me
I'll be found in you, still standing
When the sky rolls up and mountains fall on their knees
When time and space are through
I'll be found in you

You make all things new

When the world has fallen out from under me
I'll be found in you, still standing
When the sky rolls up and mountains fall on their knees
When time and space are through
I'll be found in you

When the world has fallen out from under me
I'll be found in you, still standing
Every fear and accusation under my feet
When time and space are through
I'll be found in you
When time and space are through
I'll be found in you
When time and space are through
I'll be found in you

Tuesday, March 24, 2009

Part 2

When you look through a kaleidoscope, the clearest point is always the center. The edges are blurred. Twisting the kaleidoscope never makes the edges clear; it only makes the image in the center blur until it changes. When I think about Isaac's birth and short life, I feel as if I'm squinting through a kaleidoscope. I so desperately want every detail to be clear, but the more I twist the scope, the less it helps. For CJay and me it seems essential to recall the finer points. We don't want to forget, but there's so much we can't remember. It happened so fast. That's why I'm writing everything down now. I'm afraid my memory will fail and I won't remember how funny it was, even with all the tension, to hear Isaac kicking the fetal monitor. It was so loud that we jumped every time. Even the nurse jumped. I just don't want to forget those details.

The nurse walked me to the OR while CJay went to scrub. I looked up at the clock in the OR right before I got the spinal block. It was 1:24 a.m. As soon I was flat on the table, I focused in on what the doctors were saying. The baby's heart rate was dropping fast. It seemed like hours before CJay came in the room. The nurse was making him walk slowly - I could hear her talking to him - but I wanted to scream at CJay to run. There was urgency in the entire room and he should be running. When he finally sat down, he said my mom was there. Just in time. I felt better just knowing she was out there.

The doctor broke my water not long after CJay sat down. I had polyhydramnios (too much amniotic fluid), a common complication with babies who have genetic problems. It sounded like gallons of water hit the floor. I could only see CJay's eyes but they were huge, and it made me laugh.

Isaac was born at 1:31 a.m. He wasn't breathing, but at some point, he let out two cries and they were good, strong cries. CJay and I both teared up. We really were prepared for the worst and those little cries were so sweet. CJay had to watch while the neonatologist and nurses worked on Isaac. He didn't react, which had to be difficult, and he tried to keep me focused on him. CJay told me later that they were performing CPR and it was so odd to watch them work on such a tiny person.

Eventually, the neonatologist bent down beside us. "It looks like there's a genetic problem. His neck is short and broad, and he has elfin ears." A nurse popped around and held up this tiny little thing. I remember thinking that he couldn't be mine, could he? After the neonatologist walked away, CJay and I just looked at each other. I don't remember much after that. CJay left at some point and told me he would go tell my mom what the doctor said.

I remember being rolled back into my room. CJay and my mom walked in as the nurse was getting me settled. It was good to see my mom. I got to tell her the name we had chosen - Isaac Liam. Isaac for the laughter he would bring and because of the faith that God required from the first Isaac's parents - Abraham and Sarah, and Liam because it was short for William (CJay's dad's name) and meant "strong-willed warrior."

*I thought I could write this story in two parts. Obviously not.

CJay, Isaac, Bill, and Connie

Monday, March 23, 2009

Why God Doesn't Fully Explain Pain

I found this post on John Piper's blog pretty interesting, and I wanted to share. 

By: John Piper

One of the reasons God rarely gives micro reasons for his painful providences, but regularly gives magnificent macro reasons, is that there are too many micro reasons for us to manage, namely, millions and millions and millions and millions and millions.

God says things like:
These bad things happened to you because I intend to work it together for your good (Romans 8).
These happened so that you would rely more on God who raises the dead (2 Corinthians 1).
This happened so that the gold and silver of your faith would be refined (1 Peter 1).
This thorn is so that the power of Christ would be magnified in your weakness (2 Corinthians 12).

But we can always object that there are other easier ways for God to accomplish those things. We want to know more specifics: Why now? Why this much? Why this often? Why this way? Why these people?

The problem is, we would have to be God to grasp all that God is doing in our problems. In fact, pushing too hard for more detailed explanations from God is a kind of demand that we be God.

Think of this, you are a blacksmith making horseshoes. You are hammering on a white hot shoe and it ricochets off and hits you in the leg and burns you. In your haste to tend to your leg you let the shoe alone unfinished. You wonder why God let this happen. You were singing a hymn and doing his will.

Your helper, not knowing the horseshoe was unfinished gathered it up and put it with the others.

Later there was an invasion of your country by a hostile army with a powerful cavalry. They came through your town and demanded that you supply them with food and with shoes for their horses. You comply.

Their commander has his horse shoed by his own smith using the stolen horseshoes, and the unfinished shoe with the thin weak spot is put on the commander’s horse.

In the decisive battle against the loyal troops defending your homeland the enemy commander is leading the final charge. The weak shoe snaps and catches on a root and causes his horse to fall. He crashes to the ground and his own soldiers, galloping at full speed, trample him to death.

This causes such a confusion that the defenders are able to rout the enemy and the country is saved.

Now you might say, well, it would sure help me trust God if he informed me of these events so that I would know why the horseshoe ricocheted and burned my leg. Well maybe it would help you. Maybe not.

God cannot make plain all he is doing, because there are millions and millions and millions and millions of effects of every event in your life, the good and the bad. God guides them all. They all have micro purposes and macro purposes. He cannot tell you all of them because your brain can’t hold all of them.

Trust does not demand more than God has told us. And he has given us immeasurably precious promises that he is in control of all things and only does good to his children. And he has given us a very thick book where we can read story after story after story about how he rules for the good of his people.

Let’s trust him and not ask for what our brains cannot contain.

Sunday, March 15, 2009

Where we were - Part 1

It was 2 weeks ago today when we were dealing with the fact that Isaac wouldn't live long. It was about this time when one of the neonatologists came into my hospital room to tell me that he had crashed. He was okay, but his lungs hadn't grown much past 24 weeks. He couldn't breath on his own. Regardless of what the genetic test showed, he wouldn't be with us long. We had some decisions to make. CJay wasn't even there at the time. He had gone home to shower and meet his parents.  

I should probably start from the beginning. 

I walked to my ultrasound appointment Wednesday. I work about a block from the hospital. I was waiting on CJay to get there, so I stood in this little loft area overlooking the hospital's main waiting room. A man who appeared to be a doctor was playing the piano; he was good. I noticed that Isaac didn't move much in the 10 minutes I was standing there. I thought it was strange because there hadn't been a time during the entire pregnancy when he didn't move to the sound of piano music.  

When CJay arrived we made the familiar trip up the elevator to the specialist's office. I didn't want another ultrasound. As a matter of fact, I never wanted to go back to that office. But there we were and that's where the story of Isaac's birth begins. Isaac didn't move much during the ultrasound. We could see that he'd grown lots of hair in the past month. And he was still breech. And after 40 minutes and even after I had some gum, he still didn't move much. The lady said they like to see their diaphragm move at least once, but Isaac never cooperated. 

When Dr. Saller came to talk to us, he was concerned that Isaac was stressed. The next step was the fetal monitor down the hall in labor and delivery. Dr. Saller warned that we would most likely see the baby's heart rate dropping and would have to make a decision about a c-section. Down the hall we went. I don't remember much until we were in the room. I was hooked up to the monitor and surrounded by a couple doctors. They were explaining how fast this could progress. After only an hour, they came back. Isaac was distressed. His heart rate was dropping significantly with just mild contractions. "You have a couple options: we do a c-section tonight, we do one first thing in the morning around 8 am, or you go home and wait - but we don't recommend that." What? 

Doctors rushed in every 20-30 minutes when Isaac's heart rate dropped and the alarm sounded on the monitor. At 9:30, the doctors said they didn't want me to eat because they were certain he would need to come out before the morning. (I remember the time because CJay had been gone for 30 minutes to make phone calls and get me some food. I hadn't eaten since 2 that afternoon! I was hungry.) It was close to midnight when the doctors came to say it was time for the c-section. I was actually pretty surprised because things had been calm for a while - no alarm. We would have to wait one hour for a full NICU staff, but that was as long as they thought Isaac could wait. He really wasn't doing well.

I know this is a long story,  but I think it's therapeutic for me to write it all down. I'll post Part 2 soon. 

CJay and Isaac

Thursday, March 12, 2009

Isaac Liam - March 5, 2009

Maybe one day I'll be able to write the entire story of how Isaac came into this world, but not today. Right now I think it's important that everyone knows how we're doing: CJay and I are okay. We're sad and thankful and many emotions in between. But we're okay. 

Isaac was born with Edwards Syndrome or Trisomy 18. We knew it was a possibility. There were many possibilities, but we chose to trust God's plan for our child. There was nothing we could have done to change the outcome. Isaac was made this way at conception. I'll be able to give more details later. For now, please check out the page created for Isaac on behalf of his uncle, Seth.

Monday, March 2, 2009

9 months - 36 weeks

I didn't think I had grown that much in the past few weeks, but I really have! I'm still carrying small but measuring a week ahead. We'll see if that means the little guy will show up early. I still think he will. 

Nursery In Progress

We were fortunate enough to have both sets of grandparents-to-be come up in the past few weeks and help with the nursery. What else are grandparents for?

Thursday, February 12, 2009

33.5 weeks - only 46 more days

We were at home in Tennessee this past weekend for 2 baby showers. It was so much fun to see everyone and just be at home one more time before the baby. Because we don't know exactly when the baby will need surgery, it's hard for us to know when we'll be able to travel home with him. Under the circumstances, there are many things up in the air, like traveling and day care. We're learning to be patient and not stress because we can't plan ahead. 

We had another echocardiogram on Tuesday. The doctor didn't see anything new or different with the baby's heart. He took a little more time to answer our questions and explain what this defect looks like. His best guess is still that the baby will need surgery within 3-4 months after he's born. Although we've complained about UVA's prenatal specialists, we have nothing but wonderful things to say about the cardiology department. They've all been kind and informative and extremely patient with us. We'll be meeting with a pediatric cardiovascular surgeon on Monday, and he should be able to tell us about the procedure and recovery time. We still have lots of questions, but like I said, we're learning to be patient. 

I've definitely grown since this picture was taken last week (32.5 weeks). I think it's getting harder to get good pictures of me, but it's because I feel huge in many places. You should probably feel sorry for CJay because he's the one who has to take the pictures, and I might be a littler crazier than normal ... maybe. 

Sunday, January 25, 2009

The baby who never stops

We really enjoyed the 3D ultrasound. It was amazing to see the baby's face and his feet and hands. The pictures aren't as clear as we'd hoped, but then again, we already knew we had an extremely squirmy child. His arms and legs were moving constantly. I wonder what our life is going to be like in 9 more weeks? 

Wednesday, January 21, 2009

Week 30 updates

Things are going well with us. We've officially moved all of our care to the specialists, so we'll no longer be seeing the regular OBs who have been like our therapists these past few months. Both the specialists and our regular OBs had suggested we do this since we first found out something was wrong, but I kept saying no. We needed to stay positive, and our regular doctors were sensitive and understanding. They let us talk and worry and cry. 

At our last appointment with the cardiologist and the specialist, it was clear to CJay and me that it was time to make the transition; we know now that we have no choice where we'll deliver. We need to be at the University of Virginia hospital. Fortunately, we had the opportunity to meet with a neonatologist who answered all our questions as we walked the floors of the PICU, NICU, and labor and delivery. He mapped out possible scenarios and loaded us with information. It was just what we needed. In November, we left the hospital with little knowledge of what would happen after the baby was born - who would take him? would we see him? could we hold him? We still don't like some of the answers, but at least we have a better idea of what we'll be facing. CJay and I can handle it (with God's grace, of course).  

In more "normal" baby news, we've registered at Target and Babies R Us. Our nursery furniture will be delivered tomorrow - boxed up in a million tiny pieces, just for CJay's enjoyment. We haven't painted the room yet, but it's on the ever-growing to-do list. (The clock is ticking and it's getting louder.) AND we have an appointment this Friday for a 3D ultrasound! We're hoping the baby cooperates so we can have some clear pictures of his face. I can't wait to see how much more hair he's grown in the past couple weeks. I think we counted 6 or 7 little sprigs at the last ultrasound. Very cute. I'll post the 3D pictures as soon as possible. 

* For those of you who don't know, we have picked a name for Baby Roberts, but we're not telling. :)

Thursday, January 8, 2009

What we know now

We have a squirmy child. The people in the cardiology department remembered us from our last visit 2 months ago. We're the ones who have one of the most active babies they've ever seen. I'm not sure if we're supposed to be proud or embarrassed. Even though Baby Roberts was still extremely active this visit (including a bout of the hiccups), the cardiologist was able to identify his heart defect. It's called an atrioventricular canal defect. The doctor said it can be a complex defect, but fortunately, we're looking at something less complicated. In November, the cardiologist thought the baby had a chamber that was too small. That would mean he would need surgery to make his heart work with 3 chambers rather than 4. That was bad and complicated. He mentioned that it's rare to see a chamber get bigger over time. Once it's small, it stays small. But here we are 2 months later, and all 4 chambers are the right size. What will need to be repaired is the wall between the chambers. The wall isn't complete and that creates a large hole in the heart. This wall keeps oxygen-rich blood from mixing with the oxygen-poor blood. This type of defect must be repaired in the first year of life - usually before 6 months. 

Right now the doctors can't tell us exactly when the baby will need surgery. The timing will depend on how well the baby eats and if he gains weight after he's born. (It's hard for babies with heart problems to eat because eating is a workout and it puts a strain on their hearts.) We still can't rule out a chromosomal abnormality, but the prenatal specialist didn't see any other problems during the ultrasound. Even though the AV canal defect is common in babies with Downs Syndrome, the doctors haven't identified any other markers that could indicate Downs. 

We know now that the baby will be taken to the NICU right after he's born. From there, the doctors will monitor him and determine when he'll need surgery. The longer he can wait, the better. 

We have another ultrasound scheduled for February 4. We'll also be having another echo sometime in February. The cardiologist said that things can change. I'm not sure how much can change or if anything will, but we're still praying for a perfectly formed little heart come March 30.  

Monday, January 5, 2009

If you don't mind...

We're going back to the specialist on Wednesday. We're having an ultrasound at 9:30 followed by another echocardiogram at 11:30. The cardiologist should be able to tell us more about what exactly is wrong with the baby's heart and what type of surgery he'll need. And we should be able to see if there are other "markers" for any genetic conditions. 

CJay and I have really enjoyed these past 2 months without the visits to the specialist. It's been so nice to have what feels like a "normal" pregnancy - baby kicks, a growing belly, talks of cribs and diapers. I'm trying not to focus on what Wednesday will bring, but I have to prepare emotionally. It's like padding up for a football game. It's too risky not to be ready for that physical and emotional blow. 

So if you don't mind... please pray for us and baby Roberts. We're gonna need it.