Sunday, April 12, 2015

Yearning Subsides

I used to YEARN to find information about Matthew's rare chromosome duplication.  I NEEDED to know everything I could about what was to come, what we might encounter, and what life might be like for Matthew.  

Now, 5 years after Matthew's diagnosis, I don't yearn for the information like I did before.  Probably because I now know Matthew.

I enjoy meeting those impacted by a 4q duplication.  But while their journeys are somewhat similar, they are also very different from ours.  Each story is uniquely his or her own.  I know there is only one Matthew.

When I first started teaching this year, I'd look in the special education department to see if I could envision what life might be like for Matthew years down the road.  Similarly, I have realized that there are no Matthews.  The school system has likely never seen anyone exactly like him, because there is only one Matthew.

That knowledge used to make me a bit batty, but now it is almost comforting.  We don't know what to expect.  No longer scary, it is empowering. 

It will be a challenge assessing what Matthew knows, given his speech and OT issues, but I have no doubt this kid will figure it out given enough time.

When he wanted the truck out of the way, he tried to push it out of the way.   Matthew doesn't realize he has limits.

Thursday, April 9, 2015

So Happy

While we were at the park one day playing on a merry-go-round, a little boy (probably around 10) was speaking to his friends and pointed at Matthew.  I held my breath as I waited to hear what he had to say. 

He told his friends, "Come here.  You have to come see this little boy.  He gets so happy when we spin!"  And that little boy was right.  Matthew LOVES to spin on the merry-go-round.  And I loved this little boy for thinking it was pretty cool. 

It made up for the not as nice comment our (usually very sweet) pediatrician said without thinking later that same day. I don't even remember exactly what the comment was, just that it wasn't very sensitive.

I guess it is always good to remember the good and forget the bad!

Tuesday, April 7, 2015

Growing Up

A few days ago, I sifted through the kids clothes to weed out those items that no longer fit. I've done this twice a year (or more) since Alyssa was born.  This was the first time I got a little sad.  We really no longer have 3 little kids. 

My sadness was short lived when I remembered that after 9 years (NINE YEARS) of changing diapers, we are down to one diaper a night with Matthew.   Fantastic!!

So 3800 for Alyssa, 3800 for Jackson, and twice that (7600) for Matthew.

I also relish in the fact that the kids are so much more independent.  They can get their own breakfast.  They play outside without every second having to be supervised.  They can do for themselves most often.

And we can go to a sit down restaurant again!  I think in the last 9 years, we've been relegated to quick service meals for about 7 of those.  I have missed nicer places!

We went to not one, but two sit down restaurants this past weekend!

In my gig, I've seen bigger kids, with bigger problems.  I'm in no hurry to have these 3 grow up anytime soon but I'm very thankful and happy for where we are at right now. 

Sunday, April 5, 2015

Catching Up

Here are a few pictures and happenings since I last blogged.

We celebrated St. Patty's day with friends and neighbors.

We had dear friends in from out of state for Spring Break.

And even though we passed around a stomach bug, we still had lots of fun.

We celebrated Darren's birthday.

We had a fun visit at Grandma and Grandpa's with Easter confetti eggs.

And Uncle Will.

A few random thoughts from the past few weeks: 

Ugh, the time change was just awful.  Now we get up when it is pitch black outside and go to bed when it is light.  Yuck.

After 6 months in my 'new' job, most everything has fallen into place, except the one thorn in my side--homework.  In the hour to two hours in the evening, it was increasingly a point of contention to get the kids to work on homework.  They just weren't getting it done in the after school program and I was tired of being 'mean mom' harping on them to get it done.  The last few weeks, the big kids have taken the bus from their school to mine a couple of days a week.  It has done the trick.  Homework gets done while I have tutorials and finish up my work and then we are able to tackle the rest of our list (pesky tasks like eating, bathing and reading) during the small window of time in the evening before bed.  I feel like we are finally into a good groove.

Speaking of the job, I LOVE it.  After spending the week away during spring break, I walked back into my classroom and I felt warm and happy.  I missed being there that week.  It is nice to finally be doing what I was (probably always) meant to do!

Alyssa and I bought boots a few weeks ago-- in the same size.  Yep, I am wearing the same size shoe as my 9 year old. I knew it would happen someday, I just didn't expect it so soon.