Saturday, June 16, 2012

Why my kid will forever stink of fish

I was recently told by a renowned doctor (a developmental psychologist) who sees and treats many children with Down syndrome, to stop giving my daughter NuTriVene-D, a multivitamin supplement especially streamlined for people with Down syndrome (there are some deficiencies typically encountered in people with Ds).

Naturally, I wondered why. He had previously told me to drop all dairy out of Babe's diet, which I could understand, since I too had found multiple sources linking casein, a protein in milk, to conditions in the central nervous system, where Babe's current breathing problems originate.

Dairy I could understand. Still, I couldn't see why we shouldn't give our child a multivitamin. I take several different supplements every day myself and attribute much of Babe's coming about to me taking those specific supplements (And to some degree the Viking. I'm pretty sure he was in there at some point during the conception. Let's give the guy some of the credit).

So I asked why, thinking there was some grand connection between something in the supplement and the Babe's nervous system, berating myself for not googling every single ingredient in connection with the CNS.

"It doesn't work," was his exact response.

What? Because of Babe's Down syndrome she doesn't absorb vitamins and minerals like the rest of us?

No. She does. Just like the rest of us.

They won't help boost her immunity and thus ward of infections or at least help in the recovery?

No. They might. Just like with the rest of us.

They won't help rectify a deficiency in her levels of vitamins and minerals?

No. They might. Just like with the rest of us.

They won't help in improving her overall health?

No. They might. Just like with the rest of us.

So what does he mean by 'it doesn't work'?

That they won't cure Down syndrome.



My wish for every doctor Babe or any person with Ds will ever encounter (and pretty much to every person on the planet and/or currently in orbit above it):

See beyond the Down syndrome. Look at the unique life. Understand that the person may have Down syndrome and still be a perfect, healthy individual.

My kid is perfect and I want her to lead a full and happy life, free of infections and deficiencies.

That's why I'll keep giving her a multivitamin, her DHAs, her Longvida Curcumin, and her zinc.

And lots of love and kisses.

There is no cure, because there is no illness.

   Yes. Sometimes a raspberry is very much called for.

Monday, June 11, 2012

Happy (but not -go-lucky)

I repeat it often, to many different people, on forums, in real life, on my blogs. I declare it. I shouldn't have to, but I do.

Life is not hard. We are not in need of respite.


Life is good. We are happy. Even overjoyed since we clearly lucked out in the family-department. There's more than plenty of love, and there's happiness up the whatchamacallit (to put it poetically). I look forward to getting up every single morning and gladly put my dripping wet hair up on a ponytail while simultaneously snorting up and gulping down my coffee. This life we're leading is what I want. What I wanted.

I'm content.

I'm complete.

And it's all true. It's not rainbows and unicorns - the problem with unicorns being that they are completely fictitious - it's just a fact.

Yes, Babe's health right now could be better, but she's not dying, so why worry? We're managing the situation (hence the oxygen tank completing our bedroom decor) and keeping an eye on it (thus the frequent blood tests for nearly veinless [doctor's words] Babe), and just loving our baby who is learning something new all the time and making us fall more and more in love with her and each other (it can be done, even after 10 years of marriage) every single day. Every single minute and second even.

This is where I want to be. Right here. Right now.

In the sun. With my daughter in my arms. Staring at a kid who either tried to kill us or show off to Babe by nearly crashing his bike into us. The Viking capturing the moment.

I hope you're as lucky as me.

Except for the knees, you understand.