Blow

I have been sitting on this blog for almost a week now and this is the first opportunity I've had to give to writing it. Life with 2 kids, grad school, a working husband, support raising, and weekly appointments for Liam makes life crazy busy but it is actually starting to feel normal. Last week Liam had a follow-up visit with the pediatric endocrinologist. She had not seen him since he was one week old. A few hours after we left that visit we received the phone call that started this journey. We left her office that day with hope and gratitude because she had assured us that he looked perfectly normal and she expected a normal genetic karyotype. We have never resented her saying that. How could she have known? Liam is the only patient she has ever seen with this syndrome. She's so great (as all of the therapists and specialists we've seen) and we are so grateful for the care and concern. But last Thursday I left her office feeling like I'd received a blow.

Liam is doing so well. His physical therapist, oral motor therapist, and pediatrician have all observed his low muscle tone is not that bad and is most obvious and manifested in his arms. He has head control now and can roll from back to tummy on his right side. We are working on the roll from the left and teaching him to use his arms for support and helping him gain the strength he needs to do that. We are so PROUD.

BUT...(it seems there is always a but)

When I see my 5 month old next to other babies the difference is painfully obvious. Liam is the size of a 2 month old. This is perfectly fine because it is normal for his syndrome and he is following the growth curve perfectly, he just isn't on it =) Babies younger than him are able to use their arms to lift off the ground when having tummy time. Babies his age should be starting to work on sitting up. Even though Liam will get there eventually it is such a blow to see the evidence that he is behind.

We live in this world of what is normal for Liam and 49ers boys and it seems that he is doing exceptionally well when compared on that level. It makes me excited to see how excited his doctors and therapists are at his progress. But then little things remind you that while he is exceeding on this spectrum, this is not the "normal" spectrum.

The endocrinologist chatted with us about Liam's growth and his hormones and what was happening and what will happen in the future. It is all looking good. But with one small comment the blow came. She's talking to us and I hear the phrase, "cognitive developmental delay". This is not new. This is something we have always known about this syndrome. But right now Liam's delay is seen only physically.

I don't forget about what is to come but I don't always think about it. If I thought about it I would cry every day and feel completely overwhelmed. I feel like the last month I have finally been able to enjoy my baby. His personality is starting to develop and he is so SWEET.

He is social and mild mannered (unless we wait to long to feed him or put him down for a nap and who can blame him) and really, the word that best describes him is sweet. It just oozes out of him. I wish all of you knew him and could see his sweet smile in person. OMG! I cannot stand the cuteness. I LOVE, LOVE, LOVE this little boy. And seriously, tell me when you've seen a cuter one.

And that sweet face and all that he has accomplished so far can mask the pain but the blow brings it back with surprising force. I think there will always be blows.

About a month ago we had a "Fearfully and Wonderfully Made" Sunday at church. Our church wants to do more for people in our body and in our city who are affected by disability. I think what I heard that day that meant the most to me is that Liam is an indispensable part of the body of Christ. Liam is not "disabled." He has abilities just like any other person and God created him to use those abilities for Him. I cannot wait to see what they are. I am so grateful for our loving Creator. I am so in awe of His plan and purpose for His own. I am so excited to see what He has in store for Liam. And because of Him I know I can take the blow.