Wednesday, December 12, 2012

Reality Check

It's been a very long couple months.  Much going on.

Brianna has been battling sinus issues, for, well, forever.  It's been a wall meets head ongoing battle of what's going on.  Congestion due to reflux?  Congestion due to allergies?  It was frustrating, partially my own fault for not being persistent as to finding out what was going on (because from my perspective, it was something that was just always there until it was something more, and when you're dealing with a life-threatening mitochondrial disorder, the constant congestion doesn't seem like a big deal until it's a full-blown infection).

We left for our vacation/retreat (more on that later?) in the beginning of November.  Back in October Brianna was treated for a bad sinus infection.  At that time, random "fits" as we like to call them starting increasing in frequency.  Not really seizures, but something similar.  Certainly nothing she had control over.  I took it as a sign of something overall not going well with her system.  She took antibiotics for the infection, then after that course was done battled a horrible diaper rash (due to the antibiotics) which finally cleared up two days before our journey.  Not much of a reprieve for her poor system.  Fly to California, spend two nights, fly to Disneyworld for a week, back to California for several nights, drive to Nevada (four hour drive) for several nights, back to California for Thanksgiving weekend and fly back to Hawaii.  It was grueling for my healthy system, and was just too much for poor Brianna.

The whole ordeal just sucked everything out of her.  She was a trooper on the trip, though definitely not at 100%.  We got home and she just started shutting down.  It culminated with several trips to the clinic for sinus/ear infection that wouldn't go away.

Last Friday (November 30th), we were at the clinic and she was at her worst.  Lethargic, her coloring was very pale, and she was quite listless.  Not her usually chirpy self at all.  Her metabolic nurse took one look at her and with tears in her eyes said we were admitting her.  That was the lowest point, fortunately.  She got three injections of antibiotics, was definitely on the mend and on her way home the next day (Saturday), and now, a week later, is back to herself, full steam ahead.  Melting everyone's hearts as usual.

The reality check came in with our appointment with the developmental pediatrician yesterday.  I made the appointment hoping for direction on what I should do about expectations for her.  Mostly about how we deal with training her/discipline, how we go about that.  While her increased mobility and starting to walk is AMAZING, it also brings in a host of other concerns.

It was an illuminating appointment, I got quite a few recommendations and directions for resources.  But I also received a very large pill to swallow.  It was nothing that was particularly surprising - I live with my daughter, I love her, I take care of her every need.  I know her limitations, I know what makes her different and unique.  But hearing the diagnosis, hearing the worlds stated out loud, it's something else.

Mental retardation.

Pervasive Developmental Disorder - Not Otherwise Specified.  That's autism.  And not the functional kind.

I know that Brianna is in her own little world.  I know her eye contact is selective and brief.  I know that while she is four years old, she is more at the level of a 12-18 month old, and doesn't even interact with those around her like a toddler would.

But hearing the words.  Knowing what that means, not just now, but ten years from now, that's something else.  It's like a silence rushes over you, and you hear a very loud, a very decisive door slamming.

I know the platitudes: a diagnosis doesn't define her, she's amazing just the way she is, so on and so forth.

But unless you've looked at your child, hearing the words that make it very clear that your child not only will never live a normal life, but they will need constant and continuous care for the rest of their lives - even when you knew that, having someone look you in the eye and tell you that's what you're dealing with, unless you've been there, you can't even begin to possibly imagine.

A door shuts for your child.  But a door shuts for you as well.  You have one of two futures to look forward to: there will be no empty nest - you will be responsible for taking care of an adult who will be like a small child.  There will be no traveling, no enjoying your grandchildren and sending them home, at least not without the constant burden of untrusting your helpless child/adult to someone else's care while you go enjoy yourself - something impossible to truly do.  There will be no rest from this.

Unless, the unthinkable other future, which is that this precious soul, this forever child, won't be there to think about, to take care of.

You can't possibly imagine the guilt and burden of dealing with one of those two things.  With wondering which one you prefer and then feeling like a horrible person for even wishing that you could have "normal".  Of wondering if something happens to you if you will burden/trust your child's siblings to take care of them, or leave them to an institution.

All of these things, swirling around, and crashing down after a very matter-of-fact detail crunching appointment, where you acknowledge that you have to think about things that no parent ever thinks that they will have to consider.  I was the cool collected mom, dealing with the horrible facts with calm assurance.  And I came home, I clutched my precious little girl, with the most beautiful smile on her face and not a care in the world, and I cried into her hair and I wished it could be different.  Then I looked in her eyes, as she looked at me with her adoring eyes and complete trust, and I thanked God for this precious child.

There are very few people who can understand how you can thank God and scream "WHY?!" at him in the same thought.  But this is the life we have.  A life of profound thanks, and frustration, and beauty, and sorrow.  And an exhausted look towards the heavens asking God for the strength to make it through another day.