This guy…

This guy is growing up…

photo 3

…and I am so proud of him.

I am going to be honest and tell you that I was afraid of what “five” would bring.  There were many years that were so difficult, so many sleepless nights and mood swings and rages and zero-eye contact and anxiety…and that was just me.

hehehe. Not really, but you know…it was hard. It was hard when we were all in the middle of it and it was certainly hard to imagine what the years would look like down the road.

Are they easy now?

Nope.

But they are immeasurably better and I wanted to put that out here because sometimes I only write about the harder stuff, a therapy of sorts, to put it here on the blog and get it out of my head. I’ve always wanted to “keep it real” for new families that find this blog, but with the negatives are positives and I need to balance that out better.

So let’s talk about the good, shall we?

The biggest improvement is in behavior and I really can’t describe how big the change is.  You kind of had to spend a lot of time with Corrigan, back then ( dun, dun, dunnnnnand compare it to now to fully understand but people that do not see him very often, like specialists or far-away family, constantly remark about the change.  His tantrums are far less severe, very infrequent and his ability to settle himself down in under 15 seconds is remarkable. It is a huge relief to know that I just need to wait him out, and not for long, instead of settling in for a long, hard ride. Sometimes, when he is really angry, I can kind of see this look in his eye that says, “This is not worth it, too much energy wasted” and then he just stops.

He. Just. Stops.

Huh.

He can play independently for long periods of time now. Finally.

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When Connor was in Johns Hopkins hospital, Corrigan and I camped out at my Dad’s house for the week and he was a pretty amazing kid for the majority of that visit. He literally walked into his PapPap’s house with some markers, a ziploc bag full of legos and a big sack of his favorite foam numbers. That’s it (we even forgot his videos at home) and he was fine. Absolutely fine.  He kept himself busy with what he had, made new toys out of things around the house and was a really great kid during a week where I truly needed him to be a really great kid.

So what else?

His anxiety is nearly gone.

photo 1

He still has moments that upset him but instead of melting down, he behaves in a more typical manner…holding my hand tightly, hiding behind my back and chewing on his finger.  This is a child that used to behave so poorly in any hospital setting that a physician told me he needed a psych evaluation to get him on anti-anxiety medications for appointments. Now, he behaves in the waiting room and doesn’t freak out when the door to the examination room closes behind him.

I don’t know what has changed, I don’t.  It isn’t anything we have specifically done, aside from always making him feel safe and loving him no matter what, but I will always recall a German doctor, at one of the NUCDF Conferences a few years back, told Mark.  “Just be patient. Just give him time.  I promise you, things will get better” and I have hung onto those words like a lifeline.

They have come true.

Everything isn’t perfect, there are still issues and delays and behavioral things that he needs help with.  He is still tremendously delayed, so much so that his classroom is a contained special education environment, but he is progressing so nicely.  He loves to be praised, he loves the give-and-take of affection, he sleeps through the night, he will try at least one bite of a new food without a fight, he loves to laugh and make others laugh, he uses toys appropriately, he is building complex structures with his chunky legos, he brushes his own teeth and helps me sweep the floors.  He is a wonderful and important part of our family.

We know how fortunate we are.  So many of Corrigan’s UCD brothers and sisters are fighting challenges that we do not face and we do not take our situation for granted. We are so thankful to have him here at all, let alone running and laughing and grabbing our faces to rub noses. There are difficult times, for sure…and I won’t shy away from writing about them if it is appropriate, but I just wanted to put it out here that all things considered, we are good.

More than good.

It’s good to be good.

 

One thought on “This guy…

  1. Go Corrigan! You are A W E S O M E! That doesn’t even really describe it there just isn’t an appropriate word for the amount of aweomeness you are. So we will have to settle for A W E S O M E!

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