Milestones

I consider myself extremely lucky, as I have met some exceptional people on line this year. We exchange e-mails regularly. We are all from different backgrounds but feel like family, as we have all have at least one thing in common -- we have children with Williams syndrome. Do we sit around and focus only on the syndrome itself? I don't think we do, although it is unavoidable to observe it affecting our kids' personalities and actions in some way every single day. I explained how it feels, in my experience, to have a child with Williams in my first entry. I described it as a massive brick in my brain that is with me constantly. It is heavy, and I feel it with me always, even if I am not consciously thinking about it. It flavors many of my thoughts with fear and anxiety. Many of my nightmares are now manufactured within it. It will never go away. However, I accept that, as there is nothing else I can do. With time, that brick in my brain is becoming part of me, like any vital organ in my body. I believe the weight of it will always be palpable, but I can physically breathe again, and the panic I felt seems to have subsided greatly, even in this short period of time. This gives me hope that the future will feel even better to me, although I expect there will be days where its presence is still overwhelming. These new friends of mine react to and deal with this situation differently, but we borrow strength from each other on days we feel weak and listen to each other's deepest, darkest confessions that nobody else would ever understand. I know there are even darker thoughts and fears that we do not express at all but all understand anyway. We have been forced to acknowledge our children's mortality and rejoice in the miracle that they are in our lives. We share our joys and frustrations. Despite the ups and downs, we are all doing the best we can with the resources we have been given, and I believe we all strive to be great mothers. These women are such an inspiration to me. One of the reasons I share what I do here is to help them as much as they have helped me. I hope that someday we can all actually hug each other and have our children see each other with their own eyes. What a day that would be! Yesterday one of my new friends asked me when Erik first smiled. I got out his baby book, which I don't open much anymore since the diagnosis, and started to read. It turns out she is having to wait for that smile much longer than we had to, and my heart broke because a few months seemed like an eternity to me. It is very important to realize that any kid has his own timeline for doing things, "normal" or not. I want my son to seem three-dimensional to people who don't know a kid with WS, and that is why I will share what I wrote in his baby book. If he is light years behind someone's child, that's okay! I am slowly learning to accept that, because it is painfully obvious most of the time Erik is on a different timeline than other kids. However, I definitely don't want to fuel the anxiety some mothers have if Erik is actually ahead in some areas. A lot of moms have half-filled baby books because they were suddenly consumed with chasing their toddler or didn't make it a priority. Mine is half empty because filling in the factory-printed blanks and timelines became so painful to me that I had to shut it and put it in the closet. Before the diagnosis, it became a horrifying scrapbook of giant red flags demonstrating there was something wrong. After the diagnosis, it has lost a lot of its meaning to me. Fact: My child will never be on the timeline outlined on the charts and graphs I have seen covering the walls in clinical settings. They still depress me to no end, but I have learned that thumbing my nose at them and writing my own"baby book" in this blog is a much more productive way to document and share information about Erik and introduce him to the world. For those of you waiting for that first smile, like my new, dear friend, it will come. If anybody understands how hard it is to wait for things, I do. And I will be right there with you cheering if you want me to be.

ERIK'S RECORD OF FIRSTS (approximations)

Slept through the night: 3-1/2 months (unfortunately, this was a very isolated incident)

Smiled: Smiled at rattle at about 3-1/2 months and smiled at each of us the very next day. Smiled at inanimate objects sporadically before this, like the hardware in his swing, but not at people. We had no diagnosis, but I felt something wasn't right. I tried to tell the doctor, who told me he was just unhappy because of his acid reflux.

Laughed out loud: 5 months

Rolled over: 2 months

Sat up alone: 9-1/2 months

Crawled: 10-11 months

Waved bye-bye: 1 year, 3 months

Ate solid food: 5 months (rice cereal)

Stood: A little shy of 1 year

Took his first step: 17 months

First word (without prompting): About 20 months ("uh" = up once at grocery store). Still waiting for more spontaneous words! He will grab the remote control and say "no no" now. He will copy most words and sounds he hears and makes a siren noise (woowoowoo) when he is going to grandma and grandpa's to play with his fire engine.