Friday, June 25, 2010

Our Weird Collection

It seems we've been collecting things ever since Elijah was born.  It's really not the type of collection you'd want to have, believe me.

You see, in our family we collect diagnoses.  I can't tell you how many times Andy and I have wished...if only it were just one thing.  I used to think disabilities were more straightforward; a person might be blind or deaf or paralyzed, but they wouldn't be all three.  At least not in my mind; multiple disabilities just wasn't something that ever crossed my mind.  Of course, there was Helen Keller, but she was a rarity, right?  I saw disability as an a la carte kind of thing.  You'd pick one item and that would be it.  Your tab was full.  Turns out, the world of disability is more like a buffet.

"Let's see how much more we can fit on that plate!"

I know a lot of my blogging pals are in the same boat because a lot of your kiddos have brain injuries too.  And, well, brain injuries aren't exactly a one diagnosis kind of injury.  I know this is true for a lot of other medical conditions too. Elijah has at least seven diagnoses at this point.  Seven.  Now...I'm more aware that when it comes to disability, it's rarely just one thing.

It can be overwhelming and frustrating to keep getting diagnoses piled onto your child.  Truly.  Nothing will ever compare to the day when we were told that Elijah had severe global brain damage.  But, it can't be ignored that diagnoses that would be shattering to most parents have be tacked onto Elijah's list throughout the last almost three years and we hardly blink.  Does it still affect us?  Of course it does; sometimes it's really hard.  Sometimes it feels like starting all over again.

It's a really weird collection we have started.  Started.  Oh, there is definitely a part of me that knows we're not done yet.  And that's what can be so hard.  You deal with one thing, only to have another obstacle to climb next.   Is it worth it?  Yes, because he is worth it.
No, we haven't gotten any new diagnoses recently.  Well, not too recent.  It's just that sometimes it seems no one knows how to help our beautiful boy because of his collection.  And that can wear on us at times.

When I was a kid, I collected a lot of things.  At one point it was cow figurines, then little Volkswagen Bug cars.  Inevitably, however, I'd not want to collect those things anymore and I'd give my entire collection away as I outgrew it.  Sometimes I just want to give our diagnosis collection away and replace it with a new one.  It'd be a list containing words like joyful, wonderful, amazing, and inspiring.  This would be the list I'd rattle off when someone asked me about our child's history.  There would be no diagnoses to list, no unique story to tell.  I know that we already have this collection too and it coexists with our other list (quite beautifully, actually).  No matter how hard I try, I just can't seem to get rid of our weird collection. I'd rather we didn't have it, but it's okay.  Really.  If we didn't have our weird collection, we wouldn't have him.  And that wouldn't be okay at all.


Candace said...

Oh Lisa, AMEN to that! Everytime we go to the doctor...I jokingly ask him if he has heard of any shocking, new diagnosis' out there that he would like to tack on to our list!

kathy lausted said...

Looking at our dear Elijah one can see the "diagnoses". However, I prefer the latter ones you listed - of course:) He brings such joy to my heart. I've said it before how he is so laid back especially with all the things he has to overcome. He will be a strong person with - yes - diagnoses of brain damage but also of fun, love, joy, and wonderful traits he hasn't developed yet. I love you, Elijah! I can't wait to see you again. Oh, yeah, and you, too, Lisa and Andy:)

Mo said...

I came to appreciate CP and all that came along with it a long time ago. If you really believe that all things happen for a reason then you know that without these dx's we are without our children. But, you already said that...

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