I was twenty-one when I was pregnant with Carsten. Just a few days after his dad and I got married I had an ultrasound and that is when the doctor told me the measurements were irregular. His femur, tibia, humerus, and ulna (arms and leg bones) all measured several weeks behind. My obstetrician immediately suspected dwarfism. He set up an appointment for me to see a specialist so that we could be diagnosed and monitored.
The ride home that day is all a blur. My mom had come with me and I remember just crying and crying and taking it out on her. I was really confused and didn’t know what to expect. I only knew of one little person and honestly, I didn’t even know him very well at the time. I admit that it is selfish but all I knew was that the vision I created of what my baby would be like was shattered that day in the doctor’s office.
Over the next few days I resigned to self pity and doubt. Don’t get me wrong, I loved my baby but I was mad at anyone who got close to me because I was uncertain of what our future would be. I didn’t understand why this was happening to us.
It was in that state of mind, and in the bathtub mind you, that I met the love of Jesus. I got saved right there and within minutes my thoughts shifted from “what did I ever do to deserve this punishment” to “God, what did I ever do to deserve this honor?” I realized moments after I called out to Him that Carsten was the same baby I knew and loved before and that this diagnosis didn’t change him one bit. What had changed was my vision of him. I had to let that go to embrace who God designed for him to be. That is when the true, abundant joy began. From that moment on I had a peace that I could not explain to anyone. I knew we would be fine.
My due date was November 18, 1996. Carsten has always been punctual so of course, I went into labor right after midnight on November 18th. However, the delivery was difficult so he wasn’t actually born until 5am on the morning of the 19th. Yes, that is a long time to be in labor. I know!
He was 6lbs 14oz and was 17 1/2 inches long. He underwent several tests and it was determined that he had no underlying medical conditions with the exception of the skeletal dysplasia (dwarfism). He simply had short arms and short legs.
He has always been one determined kid. Even though the prenatal specialist we saw prior to his birth had told us he may be developmentally delayed and may not even walk without support, Carsten didn’t listen. He sat up right at 4 months and walked at 10 months. He didn’t seem to notice that he was “different” and so I didn’t tell him otherwise. I had peace about it and I knew his life would be what he made of it. As his mom I just wanted to encourage him to keep pushing.
He started walking and didn’t stop. He is soooo cute! That kid has a mind of his own and he accomplishes what he intends to. My fears about his well being became less and less and it was revealed that he his condition was not very likely to cause him any serious medical problems in the future. He was simply going to be small; a little person.
By his first birthday he had just gotten into a size 3-6 months. He wore clothes out he wore them for so long. To others he looked like an infant but when they saw him walking and talking they were shocked. I have to admit I loved that he was so compact at such a fun age. It really made bonding sweet. That is, of course, until he decided he was too old to be in mommy’s lap.
I write all of this to let others know what it is like for families like ours. We are not without challenges but we are doing pretty good so far. Each of us has a family that is unique and I am willing to share mine with you. I also want to put this out there in case there is another mom out there who might be experiencing what I was back then. There was no internet for me to search on (at least I didn’t have it) and I had no other moms to talk to about what I was feeling. So much of the emotion we experience is normal and yet we feel guilty about it. It is simply something we go through and I want to make sure others know they are not alone. Most of all I want others to know just how blessed we are to have our children no matter what diagnosis they are given or that may come in the future.
I also prefer for others to ask questions about Carsten’s condition (Cartilage-Hair Hypoplasia) or our situation rather than assume. I am opening this up for questions to anyone who might have one so ask away. Curiosity does not offend me, judgement based on ignorance does. You can even leave the comment anonymously if you would like. I would rather educate the world about it than to just sit back and hide in our own little world. -no pun intended
UPDATE: I’m sorry but I lost most of the questions that were here due to a comment service I had used when it was originally posted. When I switched to WordPress they wouldn’t let me transfer and I lost all of my comments. Please ask away. I would love to fill it up with questions like it was before. We want to educate.
Carsten is now 16 years old. He is in high school and about to start driving. He is doing well. For those of you who email me and have toddlers and infants with a form of dwarfism, I just want to encourage you. Your babies will be fine! Life will look different but it will be just as fulfilling or even more so!