Thoughts. Lots of Them.

I went to a parents' panel on Monday for special needs families. It was a great experience. I met a woman I've only known online until now (Downsyndrome from Imamother.) She was one of the panelists.
There were several topics and the three mothers who spoke discussed each one: denial, secrecy, extended family, and some others.

There was a mother with a very similar experience to mine. She gave birth to a healthy girl who nursed perfectly and gained weight, never got sick, looked beautiful, etc.
She had some concerns, but was brushed off by doctors (look how nicely she holds her head/smiles/makes eye contact... there's nothing wrong with her.) When at 8 months her daughter was content to sit in an infant seat and stare off into space while this woman's sister, who also had an 8 month old, was complaining how her daughter doesn't allow her to prepare for Pesach, she took matters into her own hands and started the diagnosis process. It was quickly discovered, after visiting a neurologist, that the little girl was affected by agenesis of the corpus collosum. The membrane connecting the two hemispheres of the brain was missing.

This mother was never in denial. She knew that something was up and pushed the doctors to believe her.

Another mother, who has an autistic son, said that in the beginning they tried to keep it a big secret because they were going to "fix" him and he'd be normal, so why let anyone know he has problems now? Eventually they accepted it and accepted offers for help, and life became much easier for them.

I feel like I am floating somewhere in between. I knew something was up with Adel from before she was showing anything tangible that I can bring up concerns about. But, on the other hand, she is eating, thriving, socializing, responding. Maybe we can "fix" her. Maybe all she needs are a few therapy sessions and she will catch up.

And then I smack my forehead and think- that's exactly what denial sounds like!

Our situation is different because we don't have a diagnosis and don't know if we ever will. It's a wait-and-see type of thing.

But the geneticist sees something there.

But she is making great strides in therapy.

But bending the knees slightly when sitting isn't what I'd consider a great stride for a 13 month old.

But she is so social!

But she hasn't even mastered rolling over.

But she mimics sounds so well.

Yeah, but not consonants, just intonations. (I think she'll sing before she talks )

But her muscle tone is getting so much better. Tight muscles are loosening, loose muscles are getting toned.

But she still can't do anything with those muscles!

But she's gorgeous!

But the malformations are still there.

But there are plenty of kids who have delays and get therapies. Lots of therapies. And they don't have genetic conditions. They finish the therapy and go out into the world and don't look back.

But she can't even put an object somewhere purposefully.

But then there is the speech therapist who says that she responds beautifully and how happy she is to work with such a child because she gets things in one or two sessions that other kids can be working on for weeks.

But it's mostly because she isn't tactile defensive and she tolerates vibrators and chewy tubes in the mouth while other kids don't.

For every victory there is a host of unresolved issues.
When I am amongst my friends, I feel like I'm making a mountain out of a molehill because they love Adel and see her as a perfect baby who can do so much. They see the positive in her.
When I am amongst mothers of kids with special needs, I feel like I am in denial. Sure, she can do a lot, and made great progress, but why are you making it harder on yourself getting your hopes up? She is doing wonderfully for Adel, but she's thirteen months old... and isn't rolling over on the floor.

So day by day it is. We will go day by day. I can't look into the future, and that hurts. We ALL like to look ahead and see where we will be with the kids in a year, two years, five years. I can't. and maybe it's better that way. Right now we are happy. Adel is cute and funny and doing so well. Especially since we just had a 6 week break from specialists! That made life seem so normal. (Today we went to the audiologist and B"H, B"H, B"H Adel's hearing is normal! The left registered hearing this time. Still might be a drop of fluid there, but hey, she can hear, so yippee!)

Maybe it's a rachmanus on me that I can't know what will be in the future. I'll focus on today.