Thursday, June 29, 2006

"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 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!


RebeccaA said...

The behavior stuff concerns me too. Cameron seems to exhibit fairly "typical" behavior but I do often second guess things - is what he doing related to CHARGE or because he's four? All I can say is stay in the moment where you're at and do all you can. That's what's gotten me this far - and pray for guidance, grace and patience.
Have a great day! You're an incredible mom! And I'm glad to know you.
Cameron's mom

Moriah (zandysmom) said...

Thank you sooo sooo much! You're so sweet to be thinking about us :).

I tell ya, this is the sort of stuff that stumps me & drives me nutty because I cannot fix it. I can deal with all of Alex's "stuff", the medical, the quirks, his "rules" LOL but this new rage & hurting himself is just about to kill me. We're going to explore some help in this area to get some input about what we should do so I'll keep you updated.

Hugs to sweet Mighty Max!

elle said...

i didnt see that post how could that b amy