I want to write a quick post in honor of Congenital Heart Disease Awareness Month on this blog although it is not about CHD. The reason I want to post this on here is because without this mother of a CHD child I would not have the information I have on this blog today. So in honor of this month I want to share a bit about her and her son, Eli.
Eli is an adorable 5 yr old boy who you would never know has a heart defect. Sadly, many children with his heart defect don't get to see their first birthday and he almost wasn't able to. Because CHD isn't outwardly visible it is easy to assume that he is in fine perfect working order but looking at his scars tells another story which would frighten any parent. This little boy has had heart surgery.
Now I got to know Eli's mom in church. Our friendship honestly blossomed when my child who is 6 was acting up and she was able to identify the fact that he has SPD because she has a son who is autistic. Her understanding and words of wisdom brought sanity into our lives probably more than she can comprehend. We have shared many times of crying (her more so than I as I don't cry easily) about the struggles we face with our kids who have special needs. It was when I honestly began to really become aware about CHD as we shared our struggles and gave each other advice and relief in knowing we weren't going insane that there were symptoms and signs that we were seeing even if doctors couldn't.
Many people think that surgery or a transplant will 'fix' the problem but they don't realize that surgery is the LAST option that the doctors take and it has to be a life or death situation before they do it because of how dangerous it is. Unfortunately, Eli has had to have surgery more than once. Due to surgery which saved his life it also caused brain damage. He severely struggles and is delayed in almost every area except in how to warm the heart with his adorable smile. Surgery is not usually an 'if' type situation but a 'when' type situation for congenital heart patients and the timeline is only predictable in the fact that it is not predictable at all. Right now Eli's heart is stable but how long that will last is unknown. There are a lot of unknowns in Eli's case as there are in any children who have CHD.
Some of the things I have made on this blog and the posts are up because of my friend and her son Eli. Eli's mom will come up with some sort of 'I need this...' type remark and I go to work on creating something to try to help her with whatever the issue is that she is facing therapy wise for her son and then I take a picture and give her the final product. It's amazing the amout of therapy a child like Eli has from CHD due to brain damage from surgery. It's a scary thought for any parent of a child but it's a road that you don't get to choose. It's not one you can just wish your child well or give a pill or therapy and your child's back to normal. It's a hard road regardless of which way it turns. You just take it one step at a time.
If you want to read her blog it is:
Another website is: http://www.amandaroseadams.com/
If you want to learn more about CHD you can go to http://www.childrensheartfoundation.org/