River of De'Nial

I tried looking for it, but a while back, like a year ago, I posted about realizing I was a parent to a child with special needs. What an obscure title. What does that mean? Every child has special needs, mine just has more than the average kiddo.

Thankfully, it's usually really easy for me to see only the good, to celebrate each achievement and typically not dwell on the fact that his achievement could be two years later than his peers or that he could not be able to do it well the next time.

However, I think I've been dwelling in that bad place for a week or so now and since this is a type of therapy for me I just need to word dump.

It's so easy for me to surround our family with people who "get it" or do things with people for such short and easy periods of time that I don't notice (nor care to notice) all the little things that set Will apart from their kids. I call it the River of De'Nial. It's a lovely place to be... denial. It's the only place I can really attempt to live in the moment and enjoy my beautiful son for who he is today.

NO MOMMA! I will not smile for you. Now get down here and build this train with me.

We recently went to Galveston for a weekend with three other families and their kids. All in all it was eight adults and six kids of varying age ranges in a beautiful house with enough accommodations for everyone and a pool! We arrived on Friday night.

Will was tired after a long week and no nap that day at school. He was trying so hard to keep up with the kids his age (all girls) but it just wasn't working. It was obvious to me just how far away he is from physically being able to do everything. I wanted to leave that night. It was just too hard to watch. He kept trying to play dress up with them or whatever sort of games 3 and 4 year old little girls come up. Eventually he was the "dad" of the game and that seemed to make him happy.

He went to play with the "baby" of the group - a one year old boy and I realized that was physically easier for Will than trying to keep up with the others.

I just felt so defeated and sad for him. He works so so so hard to just walk across the room and the girls were going back and forth with a speed that he'll likely never know. Neil and I shared a hug and some wordless conversations about how we both were reacting and agreed to power through our own sadness to make sure Will enjoyed himself because we knew after some rest he would be better the next day.

I'm glad we powered through because Will achieved a major milestone - at least in our eyes. At the beginning of summer I got Will this floatie device that is on his arms, chest and snaps around his back. He's done a good job with it, but has never really been on his own in the pool with it. Well, Neil is way more brave than I am and just got Will swimming on his own with the floaties while I was running to the store.

Seeing the look on Will's face while he was showing off to me how he could get from one side of the pool to the other all by himself. I about started crying. He just had this look of pure joy and the satisfaction of something he did all by himself.

Hard to see his smile, but I will forever remember it.

Playing with his girlfriend. Note, I am actually not hovering right over Will - shocking! :-)

Achieving independence for Will is tricky. He is mentally and socially available, but physically there are constraints. It's nearly impossible to create a safety net for him while you're not in the same room. There are very few people in Will's life that not only understand his physical limitations, but work diligently to ensure he is still safely part of the party. I am thankful that in Galveston another parent understands this about Will and that made my heart so thankful.

The Monday following our return I met with Will's speech therapist to go over his results from the three tests which track his progress. There wasn't anything "wrong" or super bad on the results, but it was really very difficult to hear the therapists read directly from her notes she has to submit to insurance.

In order to get an insurance person to understand why the child qualifies for therapy services you have to explain the disease properly. Just hard to hear the words lesions, delayed, regression, progression, Leigh's Syndrome, progressive, fatal over and over again.

Then, Wednesday we did Will's second sleep study. I mentioned in a previous post about him hiccupping in the night. This kid is such a trooper. There were more than 20 electrodes put on his body and head, wires out the wazzoo and a "sock hat" to keep it all in place. This was a day I was thankful he didn't nap at school. He was so tired he had an easier time falling asleep.

Going off his cowboy obsession, he was pleased with getting to wear TWO belts and a bandana like a real cowboy. (We called the sock hat a bandana)

Ready to go to sleep. You can't see all the electrodes on his head - about 9 of them. He was not a fan of the cannula in his nose. He kept asking me to adjust it. They also put a microphone under his chin. He managed to enjoy a joke by asking our coordinator, Mr. Allen, for some chocolate milk after he left the room. Will got a good laugh out of that one.

The sleep study coordinator was great at making Will comfortable and he said everything was attached in record time because Will was so still. It was hard seeing him hooked up to all the wires and him freaking out at various times in the process. He said we got a good sample. We'll meet with the pulmonologist at the end of the month for the results.

BTW: super awkward in the morning when the coordinator says to me, "it seems like you had a hard time getting comfortable." Yes, you're on video the whole time. I wanted to say, yes, you try and get comfortable 18 weeks pregnant in a nasty hospital bed where the sheets are as scratchy as a mans beard and keep coming untucked because they are too short for the length of the bed, plus a child with wires attached to him who is freaking out occasionally throughout the night and who keeps kicking you. But I didn't. I just smiled.

I forgot Will's much needed cooling vest at school this past weekend which really limited our "out of the house" activities. One of our friends hosted their son's first birthday party at their house with a bounce house etc. It was great catching up with some people we hadn't seen in a while, but we quickly realized Will wasn't going to last. He did manage to talk Neil into getting into the bounce house with him.

They both exited sweaty, but with smiles.

 

 

Now that that's all out, I feel much better. If you made it this far in this post, thanks for reading. I kind of want to slap myself and say, oh whaaa Lori, get over it. But sometimes I guess I have to get out of De'Nial to keep myself in check. I'm sure I'll be happily floating back down that river with a mock-tail in hand soon.