At the routine 18 week ultrasound, the technician was very chatty and animated, announcing happily (after we told him we wanted to know) that it was a boy, and then he got quiet, hardly talking for the rest of the appointment. Both my husband and I knew something was wrong, but we really had no idea what it could be. The technician left the room, and a doctor returned to say that our baby's femurs were measuring short, and we were being referred for a Level II ultrasound with a perinatologist (the first of many words now in my vocabulary that I had never heard of at the time). We had no idea what "short femurs" meant, or why it was so bad. (We are of a short people...what's the big deal?) At 19 weeks, sitting with the perinatologist in a private office after a second long ultrasound appointment, we were told that our child had Type II or Type III Osteogenesis Imperfecta. I had to get her to write those words down. One of those types (Type II) is considered lethal, the other type (Type III) very severe. Our baby boy already had broken bones visible on ultrasound. According to the candid and unemotional data available, our situation did not look promising.
I didn't have a baby shower. We bought only the basic baby necessities. We got a crib and glide rocker (both second-hand), and some bookshelves. I repainted an old dresser. I purchased two outfits. We also made sure to have a carseat, though we had no idea if a regular carseat would work in our case. Some people gave us baby gifts, and others gave us clothes and books that their children had outgrown. Basically, though, I wanted to have as few things as possible to have to get rid in case I never got to bring this baby home. We knew from the time that I was 19 weeks pregnant that Little Bug's future was uncertain. We were told things like "most women in your situation would choose not to continue this pregnancy," and "don't go to heroic measures for this one... you are young and can still have your statistical 2.5 children." I don't think we were ever specifically counseled that we should terminate, but the suggestion was obviously there. One doctor spent 15 minutes telling me all the ways that having a child with special needs is difficult, assuming, of course, that the child lived.
(This is one of the few pictures of me pregnant, taken days before we went to the hospital)
As expecting parents, where do you go from there? In the span of a week, I went from a pregnant lady worrying about normal pregnant lady things to a pregnant lady drowning in the realization that my life would never, ever be the same. I remember very clearly telling my father, at the time, that I just couldn't imagine ever feeling happy again. The introduction of OI had cast a shadow over my world. The only thing that I knew was that I did love this child already. Very much. I had no idea how I would manage to take care of something so fragile, so precious, so likely to break. I didn't know if I was strong enough to deal with the emotional burdens of having a child with special needs. I seriously doubted that I had enough roar in me to be anyone's advocate. But I knew I loved this little bug growing inside me.
And so I prayed. First, I prayed every day (several times a day, actually) that God would give me and my husband enough strength to make it though the day, just that one day. While I wanted very much to have the strength to make it through the rest of the pregnancy, birth, infancy, and all the childhood milestones, that future was too foggy and uncertain for me to imagine. I needed to survive in the present and take each day and the burdens and hopes that I had at that moment in time. (See Matthew 6:34. Ah, the wisdom and comfort in the Gospel of Matthew...)
Second, I prayed that God's will would be done with my baby, and that I have the grace to accept that when the time came. I got specific with this request. I prayed that God would let me know as soon as he was born... if Little Bug was going to live, that he be born screaming; but if Little Bug was not meant to be in this world for long, that God take him quickly before he could know too much pain. If I had otherwise been tear-free, it was at this point that I cried each day during the remainder of my pregnancy. Every day, I realized anew that both of those ends carried consequences, and at the time, I did not know which would ultimately be better for me, my husband, and our Little Bug. Doctors had led us to believe that his existence would be a painful one, physically and emotionally. We were told he might be so fragile that his bones could break coughing. His lungs and ribs might not be strong enough to breath. He might always have chronic pain, even when not acutely fractured. Was it too much to hope that my son's life would not be this way? Was it less selfish to hope that his life would be very short?
I could expand on all the thoughts, hopes, and fears that dominated my pregnancy for a very long time. I have only included as much as I have in the event that a woman who has received similar news and is searching the internet with a sad but fervent sense of determination for terms like "skeletal dysplasia" and "shortened femurs" can know for certain she is not alone. Other than prayers, the best things I did for me and my unborn OI baby were (1) to find doctors who cared about me and my son, and (2) to find other parents that have children with OI. These two things (undoubtably answers to that first prayer that I was always praying) were the foundation of hope for me. They did not make the fears go away, but I realized that life touched by OI is still a beautiful life. I would be happy again.
This was my Little Bug, born October 2008, screaming. I only saw glimpses of his head full of crazy black hair while an entire team of neonatologists circled him, but I heard his cries and knew he was mine. This may sound a little sentimental, but I knew (like all moms, I guess, wink-wink), that he would be amazing.
And he is.
I wish I could have had more joy in my pregnancy. I feel like I was robbed of that feeling during such a transient and precious time in life, the time of growing into the idea of being a parent for the first time. However, having experienced low moments of despair make the good moments so much sweeter. It must be magical to see any child take his/her first steps. It is a whole other plateau of elation (and fear) to see a child with brittle bones who was not likely to live and never supposed to walk take his/her first steps. Little Bug has already blown me away with how far he was come, and he isn't even 3... yet. I am so excited to see how far he will go.