Recap + Life + Play

December 6, 2005
Our trip to SLC went very well and it was great to re-visit the people who have helped us so much through the last two years. Emily has shown some improvement in her muscular and neuromuscular abilities and everyone was very pleased with her progress. There are two sides to the story. It is great to see Emily doing things that Linnea never could. She kicks her legs and moves her arms around like a conductor prompting an orchestra. She stretches and smiles and screams and giggles... just like a "normal" baby, but still weaker. She has got to be the most interactive little 4.5 month old you have ever seen. But, even with all this I fear the inevitable even more. If things continue as they seem, Emily will still outgrow her abilities and start to weaken once again, only this time it will be at a later age than it was for Linnea. That means that Emily will be that much more aware of her own deterioration and difficulties. I cannot imagine what it must feel like to lose normal abilities when you don't even really know what is going on in the first place. It must be scary.. makes the job of a parent seem all that more important, don't you think?! To validate their kids existence and making them feel as secure as can be every moment of every day. Emily knows we love her because we are always talking to her and playing with her. She responds to us and we respond to her, it's a wonderful relationship if you think about it. But it is tiring too. I mean, most kids learn to bring joy to themselves soon enough. Rolling around and tasting everything they can get their hands on. Crawling around and touching everything they can get their hands on. And then finally pulling up and touching anything they can get their hands on. I can see it in Emily's eyes that she wants to get to something and "get her hands on it," or stick it in her mouth, only she cannot do it on her own.. we do it for her. It just gets tiring and it always feels like a selfish thing to be tired of doing something for another person. Shouldn't we always be happy and energetic to do things for people, and especially babies, who cannot do it for themselves. It is a frustrating emotion to battle with. Sometimes you just have to be selfish, but you can't in the end. Parenting, that is what it is all about I guess.. never throwing in the towel. I challenge all of you to never throw in the towel b/c the reward is to great to throw to the wayside. We have had one SMA-free child and she is a wonder to behold. Tireless and forgiving with no lack of intelligence where it counts she makes our lives exciting day in and day out. I wish I had the stick-to-itness in life that Annabelle has in play.