No one asks to be a part of this life as a parent of a kid with CHARGE Syndrome. No one willingly fully raises their hand (...well, ...actually, there have been a few amazing foster/adoptive parents) and says, 'yes, sign me up for this whirlwind roller coaster. I will tackle anything and everything. I will hand over my child to the Dr's and nurses to fix all the many flaws in their genetic make-up. Fix their broken pieces. I will fight for them, advocate for them, tackle the stress, the fear, the uncertainty." More often than not, Dr's are able to fix them. And sometimes, they cannot.
If you don't know what an ECMO machine is, then congratulations.
If you don't know what an ART line is, congratulations.
If you don't know what TPN is, congratulations.
If you don't know what a g-tube does, congratulations.
I can go on and on and on...
This is a life that few understand. Few comprehend. If you don't live it, how could you understand? One of my goals in this incredibly isolating world of CHARGE Syndrome is to give you a glimpse. Help you feel what it's like. Witness all aspects -- the good and the bad. The celebrations are bigger, richer, louder -- as they are usually hard-fought accomplishments. Delayed accomplishments. Yesterday, I watched "Andi's Turning 4" birthday video - showing a video of her standing up from a seated position on the floor. I don't know if people seeing that truly understand what an amazing accomplishment that was for her. Incredibly delayed, but none-the-less, she did it. When your inner ear structure effects your balance, it's incredibly difficult to fight the chronic imbalance. It takes more energy, more strength, more concentration, more determination to do something that you or I do frequently. The ability to simply stand up. Those accomplishments are beyond incredible. Often, they are despite some medical professionals doubting it would ever happen for that child. Celebrations are loud, proud and a collective party amongst the entire CHARGE Syndrome community, because, frankly, we get it. We get how hard fought that accomplishment was. On the converse of celebrations, are the hard times. Sometimes, it's a fall. Sometimes it's careless words or actions at the hand of others. Sometimes it is simple frustrations over medical coverage -- and having to advocate yet again against a broken system. But sometimes, it's complications from a surgery. Sometimes, it's heart failure. Unresponsive. Vent. Seizures. Sometimes, we just don't know. An ECMO machine. An Art Line. It's a medical nightmare that you can't hide from, you can't escape and you live in constant fear of... it's a reality for us. A daily f'ing reminder how fragile life is, yet, one that makes us struggle to find any sort of peace of mind. Peace of mind doesn't come easy, at all. And when hard times set on one of our own, it's extremely jarring. And when the child dies, a piece of all of us dies too. While we all work to float the family through grief, it also kills the spirit within because none of us are guaranteed a tomorrow. None of us. When the kids get above five we tend to think of that as a mile marker to safe passage into adulthood. So not true.
In the past week, we have lost TWO of our older kids. A six year old and a seven & a half year old. Not much younger than Andi. Our friends. I am absolutely shocked and sickened. I can't believe it. It's a whole new low. Even as I sit here staring at the screen, eyes glazing over rereading the words I wrote, I still can't wrap my head around it. I doubt how much more our hearts can handle. How much more our community can grieve.
A bunch of CHARGE Mom's are heading to Toronto to support one of our grieving families. Unfortunately, I cannot join them. I can't think of anywhere I'd rather be though than with our friends living this life, fighting this fight. It's a bond we never asked for, but need more than ever.
So, to my CHARGE families - you are all in my heart and head. And to my grieving friends, you are not walking this path alone. I'm right there with you and am always available for you. To the kids we've lost... Asher Britton and Noah Ashton, you are so loved and I will never forget you.