Do you ever have those days when you don't know if you should cry, scream, or just throw your hands up in the air and want to give up? I feel like I have felt that way for weeks now and to be perfectly honest it is so overwhelmingly difficult.

Gracie went in for a check-up with her pediatrician. It wasn't a well-child check, he just wanted to see her again to assess how she was doing and get to know her better since we just started seeing him. I have been thinking that there is something wrong with Grace's back and that is why she absolutely hates to sit up, when she sits, she screams and cries as if she is in pain. In the past we thought maybe she had a touch of scoliosis, but everyone told me that there wasn't much that could be done about it so lets not worry about it now. I asked the pediatrician to look at her back and after looking at her back and her curled toes, he wants us to go to an orthopedic specialist to see what is going on and also get a complete scoliosis survey done.

When he looked at her eyes he noticed that she went cross-eyed a bit and asked me if she ever had her eyes checked. I told him that I thought about it because she has struggled with cross-eyedness before, but it seemed to be getting better so I didn't worry about it. He wants us to go to an eye doctorand have her eyes checked because if this goes untreated if there is a problem, she could develop permanent blindness in one eye.

The doctor than said that he wanted me to consider having genetic testing done to see if there is anything else abnormal on her chromosomes to watch for. He just feels that though it won't change much, at least it will give us a better picture of Grace.


I'm grateful for this direction because yes I want to address things to give Grace the best possible care and scenario, but how much more can there be? She has had mild hearing loss, heart problems, lung problems, so many complications from surgeries, and now all of this, it just doesn't feel right. I try not to complain and vent too much about where Gracie is and all that she has to deal with---oxygen, feeding tubes, delayed development, poor growth---because I know so many other children that seem to have it worse than her, more life threatening conditions, but come on already, where is Gracie's break? When is it her turn to be able to excel and be a "normal" kid?

In posting this I don't want special treatment, I just needed to get this out and it is more cathartic to do so this way. I know that Grace is doing amazingly well for Grace and where she has been. I'm grateful for the little accomplishments she makes daily, I just love her and worry about her and if I can give her all that she needs to succeed in this life. Can I fulfill her medical needs and also help her have some resemblance of a normal childhood? Amidst all that is going on with her, will I be able to help her see how marvelous she is and how despite her medical conditions she isn't any less important, any less needed, any less capable of living a fulfilling and worthwhile life?