Two posts ago, I spoke of one of Andi's besties, who just had her abutments attached. I believe I entitled that one, "It's A Snap!" Well, obviously, that's a play on words - because this entire process is NOT a snap. It's not easy and it comes with no guarantee. It's not carved in stone. It's implanted in bone, and for a young child - that bone is still soft.
Her Mom posted today that she's going under again tomorrow because "the post broke away from her bone and needs to be removed immediately."
Refresher: imagine a screw drilled into the bone behind your ear (your skull). Let that heal for six months. Then, go in and attach a post to it, that holds a snap on the outside of the skin, to which the hearing device clips into... a direct route to the hearing nerve. Now, first of all, she is in no immediate danger, but her Mom asks for prayers and good juju for her... so please, send out your energy for our sweet friend Layla. Let's hope the sleeper (once she heals) will deliver the foundation she needs for this to be the long-term solution. That's all we are after... a long term solution to enable our kids access to their entire environment. Whether it's sign language, a nurse to accompany them to school, Dr's who know their head from their ass - (sorry, but true), or modern hearing devices that bypass the problem area (Andi's middle ear structure)... I mean, we all just want the best for our kids. Whether those kids are "typical" or "special needs" -- it's all one of the same when you cut to the chase ... we all want what's best for them.
I keep floating back to the line I've heard over and over these past eight & a half years, "I don't know how you do it!" And I mean absolutely no disrespect, but my own family has said that to me. Hell, I've said it to someone, cringed, and then spent the next year kicking myself that I said it. Bottom line is that we don't have a choice. If you're a good parent with the best intentions for your child - you do what you have to do. Scary or not... we have to move forward trying to utilize the latest technology that gives our kids access to their environment. It isn't easy, and it isn't guaranteed... but it is our hope that it works.
The CHARGE community is a solid foundation. The group is a united family brought together by the syndrome. These people are, "my tribe!" These people get it on a level that sadly, one can't understand unless you've traveled that road. It's a dynamic that I am, we all are, so grateful for. So, Layla - this shout-out is for you... we absolutely love you!!!! You've got this lil' lady!
So, as you prepare for the holidaze.... please do a few things:
1. donate blood if you can.
2. hug your friends and family tighter than ever.
3. help us spread awareness of CHARGE Syndrome and its effect on you. Clearly, you wouldn't be here at Andi's blog if you didn't have an invested interest.
Stolen from the CHARGE Syndrome Foundation website:
CHARGE syndrome is a recognizable genetic syndrome with known pattern of features. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems that delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
And if unlike me, you have a few extra bucks laying around ... please consider donating to both of the following:
CHARGE Syndrome Foundation
CHARGE For Connor
While we are all seeking the time of our lives... there are no guarantees to/for any of it. So, move forward with our entire CHARGE Syndrome family tucked in your mind. Be kind to others and be the person who pauses and treads a little lighter with everyone. Let our kids inspire you to do better, be better - and live that 'time of our lives', all of us.
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