Sunday, September 9, 2012

How to Eat an Elephant

How do you eat an elephant?  One bite at a time.  Aaron thinks the ear is a good place to start.

He's going to be 27 months old on Thursday (yea!) and getting bigger and stronger all the time.  He's just recently decided that baths might be okay.  He would get so upset before that, often, I would give him a sponge bath in his bed.  But the last few times, he's almost had fun in the sink.  But speaking of bigger, the sink's not growing with him.  So I'm looking at different bath chairs.  Do you have any idea how much money the word "medical" adds to the price of something?  It's crazy.  Especially for PVC pipe and mesh.  So I'm thinking we'll be making our own.  I'm sure it will fulfill a merit badge requirement of some sort or other...

The bath chair we're going to try to model
ours after.  We'll see how it goes...
And with getting older, the next elephant I'm looking at is public school.  Yeah, I realize that 36 months  old is still nine months away.  But this mama is so clueless about the world of special education that I'm feeling just a bit (okay, a whole lot) overwhelmed.  There is so much to factor in.  It's not just his physical and social development, although those are important.  It's also protecting him medically, making sure that everything is in place and there's a well-trained nurse, who also knows Aaron well.

I could easily make the case for home/hospital learning, where he would be here with me and have therapists/teacher visit us.  But this is not about what is best for me.  It's about what's best for him.  And this little man LOVES to get out and be with people.  When we're out and about, he gets SO excited when I unbuckle him from his car seat.  "YEA!  Let's go!! What's new out there??"

It may be that he does need to be home schooled, but we'll follow his lead on that one.  For this decision, the coming months will be a big factor.  If he can go out and still stay well, everything will be great.  A winter like last, where he was only sick twice but it was a really big deal (read "dicey PICU stays with uncertain outcomes possible") we'll have to reconsider.  And it goes without saying that if he struggles any more than that, it won't be happening.

But in the meantime, I'm trying to learn all I can about this new process.  I'm talking to people in the system (Thanks, Sis!) and attending informational meetings.  I've got a call into someone at district headquarters who can give me a feel for how our specific district addresses some of these issues.

I almost feel like I did back two and a half years ago when we first started this journey, but without the depression and heartache that was so prevalent.   I'm not being told that he won't live, but it's still a different landscape, a different world than I've dealt with before.  They speak a completely different language in this world than the one my other kids inhabit.  So here it goes.  I'll try to follow Aaron's lead, and just take one bite at a time.  Hopefully in the next nine months I'll have figured out how to make the most of the new dish on my plate.

Learning is like rowing upstream:  not to advance is to drop back.  ~Chinese Proverb  


  1. I relate so much, especially since Lily ages out of EI around the same time. The world ahead scares me, but it's still over eight months away. In the meantime, I'll have to follow your lead and learn everything I can as Aaron and Lily teach us how to eat elephants.

  2. Have you ever heard of Rise Academy? I volunteer at one her in Dallas. I so wish Zoe had been in one when she was little anyway. There are (not very many) some kids with Trisomy 18 that have done AMAZING!!!! there.. Look into it it just might be the next footstep that God has prepared for you