Not All Gloom and Doom

Adel's situation is stressful. No doubt about that. I am thrown into a whole new world of traveling, running around, finding arrangements for the boys while I run around, dropping hundreds of dollars in co-pays and transportation some weeks, trying to handle the news of yet another problem discovered, yet another specialist referral, yet more test. And it's stressful. But in reality, there is no noticeable change in me, in the kids, and in our attitudes at all. I talk a lot about my feelings here... it might seem like I am drowning in a mess of emotions, stressed, not managing, whatever. Does it seem that way? I assure you I'm not.

As rude and insensitive it is to tell others:
Your troubles are nothing compared to people whose children die.
Compared to the holocaust.
Compared to kids who depend on machines to help them live.
Compared to families with severely retarded children.
Compared to kids who have to undergo risky surgeries...

As wrong it is to tell that to others, I do that to myself. Reading about how bad a chromosomal disorder can be, Adel's issues are almost insignificant. She eats and thrives. She plays. We are all managing quite well. Hashem truly gave me what I can handle.
She interacts with family members and recognizes us all. I'd be devastated if she'd be emotionally withdrawn from us. She doesn't have to depend on anything to live. That would be truly awful for our family.
I read other blogs where the kids need a feeding tube, a trach, a constant heart monitor, all such things. I'm so happy Adel is the way she is. I joined an online community for parents of children with special needs and I feel like I don't belong. Not that they aren't welcoming- they are! But I read about families going through such massive things, and I feel like I got off so easy. B"H.

Stories of babies getting brain damage during delivery or becoming autistic from vaccines... it puts it all in perspective for me. I'd be heartbroken if my perfectly healthy and normal baby would get hurt in such a way. So much second guessing. So much fantasizing of what should have been. A child that was born perfect became damaged due to neglect or circumstances beyond control.
But my Adel was born perfect! This is how she was created. I guess you can say custom made.

Adel is just a delight. We have this funny game we play with her- the boys get all into it. We ask:
Adel, why did you come to our house, to be cute? Okay, we let!
Adel, why did you come to our house, to cuddle? We will cuddle with you!
Adel, why did you come to our house, so we can eat your toes? Ohm, nom nom!
Adel, why did you come to our house, to pull Gedalya's peyos? Noooo, Adi!
Adel, why did you come to our house, to eat paper? Nooo, eat your fingers!
Adel, why did you come to our house, to make everyone happy? Good! We are all happy you came to live with us!

I truly recognize the miracle of her condition being as mild as it is (even though it's not so mild- our pediatrician was horrified at the neurologist's report).
It's just that our new lifestyle takes some getting used to. Just like when she was born. Just like when the boys were born. Every change in life requires getting used to. And Im Yirtze Hashem, we will.