Yes I am way behind in blogging. I guess I should update a few things. We had an appointment with a new cardiologist at a new clinic on Monday. Both my husband and I liked him. He gave Eli the official diagnosis of Shone's Syndrome. I think it's hard to argue with the fact that the surgeon said at one point "His cardiac anatomy is consistent with Shone's Syndrome". He explained some things about blood pressure between the legs and arms that I didn't know about before and overall totally understood why Eli struggles so much in school and other areas. We really felt like we were heard. He also through out another term. Dysautonomia. I'm not sure that he diagnosed him with that or not. He just told us to not be surprised when we read that in the clinic notes. He is wanting to talk to their neurologists to get their imput and possibly to send us there first. He 100% thinks that some of Eli's issues are neurological. I think I need to sit on that for a while before asking any questions.
But really the being "behind" I'm talking about is delays in Eli's speech, development and overall learning. It's really quite obvious. He is in speech therapy (he has been for over a year now) and Developmental Preschool (his second year), where they also do speech. As I was sitting in therapy today it dawned on me that Eli doesn't use a ton of 3-4 or more syllable words. I mean he does use some, but not a lot. His therapist always gives us worksheets to do at home. And when we did his worksheets in preparation for today I realized what a struggle it was for him. I mentioned it to his therapist, but we try not to "visit" too much since Eli needs as much time as he can get. I held back in asking her about it fully. I'm not sure why. She really is wonderful and I could have but I tried to push it to the back of my mind. Then I came home and it came to the front of my mind like a smack in the face. I've tried pushing these thoughts to the back of my mind before. And then I look at Faith and realize that she will eventually pass him up. This makes it really hard to develope friends with people whose children are typical developing. They don't get this place I'm in. Some who are here can have a great attitude and go about life as if it's perfect. I'm not one of those people. It hurts so deep I cannot express with words the feelings it evokes. It really bothers me. People talk about all the things their kids are doing (and they have a right to brag) and Eli can't do some of the things children three years younger than him are doing. It really breaks my heart. It's hard for me to watch.
Parents of typical children don't really understand this place. They try to comfort me and say things to make it seem as though Eli will get better. Or things will get easier. This is why I love the few friends I do have. They don't try to get me to believe something I know will never be true. I am so thankful for that.
Anyway, I've been trying to just sit and be joyful in the things God has given me. They are perfect in His eyes and really that is all that matters. It's my flesh that's bothered. So I've been trying to ignore my flesh. Today was one of those days though that got to me. Where my flesh took hold and allowed me to be sad for all the struggles Eli will always face. I just felt I needed to let it out somewhere. So here it is.