It is simply amazing to me how fast things change. I was just one yr. ago this month that we discovered Tatum not only had congenital heart disease but also something called Williams Syndrome. I remember driving home from the Dr.’s office calling my friend Nichole so she could goggle Williams Syndrome for me. I just listened as she read symptoms some she had and some she didn’t. Once I got home and had the chance to look for myself I just knew that was it. Chris and I spent the entire weekend telling each other there was nothing wrong and Tatum was totally fine. Well Monday morning I got a call from Dr. Lindsay confirming the most awful thing ever, Tatum indeed did have WS.
I called Chris in tears the second I hung up the phone. Being the good guy that he is he packed up his work for the day and headed home to drink with me…Just kidding he came home because I was upset.
I moved quickly from that point on, the first week I found out I made a Dr. apt with genetics and called the infant and toddler program to get the ball rolling. By the time I went back to work the second week in April we had everything in place. Now maintaining that crazy schedule was the part I had no idea how to swing.
Like everything in life it just seems to work itself out and so did this. Turns out it wasn’t the end of the world but merely a door to a whole new world.
I remember thinking last March that she would never be normal but wishing that she would be on the “high” functioning side of the syndrome. There were and still are times where the WS factor is just lost in the heat condition and her survival is all that matters. The heart still remains top priority in her care; as long as we have her I am happy.
Over the past weekend I watched my little delayed child have the time of her life. We are lucky to have Emma in Tatum’s life. Emma knows no disabilities: for her Tatum is just her baby sister and best friend. We often have to remind Emma to be gentle with Tatum while they wrestle around or while Emma is dragging her across the room. Funny thing is they both seem to have fun and when Tatum has had enough she lets Emma know in her own way, usually it is some crazy loud noise accompanied by some flaying arm gestures, really funny.
Also this weekend when I got home from work I noticed the biggest break through yet, 2 bottom teeth, yeah she actually has them. If you though she was a good eater before look out this little chubster took eating to a whole new level this past weekend, although slow she doesn’t seem to miss a beat or a crumb.
This first year has been a rough one and from what I understand the first one always is. I feel now that a burden has been lifted, her care is in order and competent, she is growing and developing much like a normal child of 9m (in comparison to Emma at 9m) and she is happy. I wish her heart was better but if I went through life wishing and not just taking what I have where would that get me…depression land?
Anyway…. I’m loving the break in the weather and daylight savings. I actually have some really funny pictures of my little girls from the weekend but I forgot the cord to download…. maybe I’ll get them up tonight or tomorrow. I also have a funny bath video and I swear Tatum is yelling at Emma…in between both of them laughing. I tell you those girls certainly are something else.