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.

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He's a Big Boy

Elijah has been - how shall I put this - challenging lately.

It's kind of difficult to put our finger on what is wrong. We know Elijah is teething, but he has been for months. Two of his two year molars are poking through, but those suckers are taking forever. And to think there are two more to go. Sigh.

At the age of two our little man finally started to sleep through the night fairly consistently... and then it all changed. Teething, perhaps.

The thing is, though, that there are a lot of changes taking place in Elijahland. There might be more to it than just some teeth. Little man seems to be trying to assert his independence in whatever ways be can. He seems to be having the typical two-year-old "me do" mentality. Problem is, he isn't able to tell us verbally what he wants - which is frustrating to all of us.

His receptive language, however, is coming along. He's showing us that he is indeed understanding some phrases that we say. For example, if I say it's time to eat, he will walk to the table (usually laughing as he goes).

And, diaper changes. Elijah has hated having his diaper changed for the longest time. I'd explain what was going to happen, lay him down and he'd absolutely freak out. We finally figured out that he didn't like to be laid down. He wanted to do it himself. We tell him that he needs his diaper changed and he very compliantly lays down on the floor to have it changed. He'll even lift up his bum sometimes to help out! I know it might not sound like much, but to us...it's a big deal. Not only does he understand, he has a preference to how his diaper is changed, and he wants to do it all by himself. He's a big boy and he's desperately trying to let us know.

Speaking of being a big boy, we're making the transition to a toddler/day bed. We've been thinking about this for awhile now, since Elijah's getting scarily tall for his crib. We turned his crib backwards (because the back of his crib is taller than the front), but then I needed a stool just to reach him! Not ideal. We've been apprehensive to make the change, wondering if he's ready developmentally. And guess what? Elijah seems to be sleeping better with just having his mattress on the floor (we're doing it this way first to make sure he doesn't take a big tumble out of bed). It's going to take some training to teach him how to stay in bed (and it would with any kid), but he seems to be so much happier. He's a big boy. He wants freedom and independence - just like any other two year old. And just like any other first time parents, we're trying to figure it all out. We'll get there.

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The Appointment That Wasn't

We were supposed to have an appointment for Elijah today.

We drove 45 minutes to get to said appointment.

We walked up to the desk. "Hi this is Elijah," I said. "He's here to see Dr. So-and-so."

The lady looked a little worried. "Dr. So-and-so isn't here today," she said.

We stared at her blankly. "We had an appointment."

The lady types on her computer. "It says that you called back in May to reschedule. Let's see when your rescheduled appointment is...hmmm, I can't find another appointment."

I especially dislike when someone messes up and then blames it on you, i.e. saying we called to reschedule. We never called - if we did, don't you think we would've made another appointment?

"Um, we never called. We had an appointment for today. We drove 45 minutes to get here."

"I'd fit you in, but he's not here today."

"Well, what happened? Because we never called to reschedule and no one ever told us that we didn't have an appointment today."

"I don't know, but I'll talk to the scheduler who changed your appointment to try to find out what happened."

With that, we were back on the road heading home - an hour and a half round trip for nothing. We made another appointment, but now we'll have to wait until the end of the month - it was the earliest we could get in.

Andy called the corporate office on the way home to (nicely) express our frustration. Their notes said that they had notified the family (us) of a cancellation and advised us to make another appointment. That didn't happen...I have the confirmation of our appointment taped to our calendar. They canceled our appointment and forgot to tell us. Nice. It's not that big of a deal, I know it was just a mistake, an oversight, but extremely frustrating. We have appointments literally almost every day - it's pretty annoying to spend all that time in the car for absolutely no reason. Just the way it goes sometimes. Okay, vent over. :)

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