Feels like Christmas morning here at the N.I.H.

I just woke up a few minutes ago, over an hour before my alarm clock is scheduled to go off–I can’t fall back asleep (even though I’ve had only 3 hours of sleep!),

because I find myself peacefully not tired.

Like Christmas morning as a child, sleep on this morning is suddenly an unnecessity. Unlike Christmas morning, I don’t have any of those loose flutters of excitement in my stomach, but instead there’s this calming resolve…this is it.

In a little over an hour, I have to do my best to help facilitate these meetings so they give David the best of what they can for him.

Once I’m gone (I’m already on borrowed time),

I’m worried that David will just start slipping through the cracks. I doubt his father will do any follow up. I know this, because if he was willing to put in the effort in he would have done it already.

Because we look so healthy on the surface, it’s too easy for any social worker or foster care person to let David’s health needs slide. What’s a few sinus infections, right?

Where the truth is, those little sinus infections are just the siren warning call of the fireworks show of a monster problem underneath. It’s so silently deadly, because it hides behind our ferbile exterior.

I know David already suffers more than he says. I see it on his little face some days. Since he knows I’m suffering, he figures (wrongly) that his suffering isn’t as serious as my suffering, even if his problems aren’t as immediately life threatening as mine. So he keeps it to himself.

But the serious multi-million dollar nightmare is coming, and that’s why we’re here.

We are here at the N.I.H. in the hopes that David does not have to spend one day of his adult life going through what I’ve been through.

We’re here in the hopes that David will be able to live out his dreams, maximizing and making the most of the talents God gave him (with a few good genes from his mother, of course. 🙂

We’re here because by solving this now, it will save David a lot of suffering, and save the community a lot of financial resources to keep him alive. Money I’m worried won’t even be there the day his problems turn deadly.

After I’m long gone, I hope all David remembers from his early years are a few vague recollections of a sick mother who rambled on about a natural killer cell deficiency, and that’s all these years will ever be for him–

Because he will have had his stem cell transplant or bone marrow transplant that cured him.

And that, I’m about find out in an hour or two, if its even possible. If the doctor even understands the severity of the complications we face on a daily basis.

I know I don’t have much longer on this planet. My body has been beaten down by many years of antibiotic therapy, because I was allowed to get too sick before I was on proper treatment. I’ve now long accepted my immune system will never be able to fight this off.

What my doctors are doing for me, is giving me more time. More time to find the answer. Time that has been paid for by someone very special to me. My life has a price tag attached to it.

Hopefully, David will never have to go through what I’ve been though.

And that’s why we’re here.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s