"We've only just begun..."

Often times when people ask me how things are going with Maxwell, I try and be as positive as possible and focus on all the amazing medical and developmental progress he has made in recent months. I love bragging about him and I think people would much rather hear the positive...it brings them peace of mind.

I too would rather focus on the good stuff, but in the back of mind I know that there are many, many challenges ahead. I often tease that our theme song should be "We've only just begun..."

Several times a week I learn of another CHARGEr having a difficult time with one thing or another. Well this morning my heart broke on behalf of a wonderful online friend who also has a CHARGEr. Alex is experiencing some serious behavior issues, which are not uncommon to CHARGE kids...but they are quite frightening because there is no real solution. Many families must add yet another specialist (a therapist, psychologist, etc.) and even more medications.

One of the CHARGE moms who posted a comment said that they would take an open heart surgery over behavior issues anyday. (Her daughter has experienced both.) That puts everything in perspective in CHARGE land. Pretty crazy world we have ahead of us...but wonderful nonetheless because these kiddos are absolutely incredible. What irritates me (if you can be "irritated" at a genetic disorder) about CHARGE is that it doesn't seem fair that one disorder includes medical, developmental, AND behavioral issues. Shouldn't only one be included??? I guess that is why CHARGE is listed as such a serious disorder because of how all encompassing it is.

And so the song says..."We've only just begun."

*Please keep Mr. Alex and his amazing momma in your thoughts. They have provided great strength to me through recent months, and I just wish I could do something for her!