Saturday, July 19, 2014

Joshua: Red Flags

Joshua had an eventful week at Therapeutic Recreation (TR). They only met on Tuesday and Wednesday. On Wednesday afternoon, Ms. Sherrie, the director of the TR program...told all the FRIENDS that she was leaving, and there was weeping and gnashing of teeth.

Oh, wait...that was me.

Actually, she said she was going back down to part-time, and Mrs. Alanna, who has been there a couple of years already, was going to take her full-time job.

Mrs. Sherrie had given all the parents the heads-up the week before so we knew. She has been through a lot this past year...a divorce, followed by the unexpected death of her mom. All of it rocked her world, and really shook up her family. She made the selfless decision to change her position at TR, in order to move home to take care of her dad and her sister. She really is the glue in her family.

I was prepared for Joshua to freak. When he gets bad news, he typically makes himself physically ill...what with the worry and all. I was really concerned, because Clark was picking him up on Wednesday, instead of me. I sent him a text to make him aware.

But, Joshua handled it GREAT. I couldn't believe it. I let Joshua tell me all about it when he got home. He was a little sad, but they all know (and love) Mrs. Alanna, so the transition won't be a big deal. And, the biggest surprise...Joshua is convinced that Mrs. Sherrie will be back. He said, "she will get her family all situated, and she will be back. I know it."

Truth is...he's probably right.

The other thing that happened this week was when Joshua got up on Tuesday morning, he was complaining that his left shoulder and arm were hurting. Like, down his left arm.

You need to know that Joshua rarely complains about ANYTHING health-related. He has a high tolerance for pain, so if he says something is bothering him...it's probably pretty uncomfortable. To say the least.

The first thing I thought of when he told me was...his heart.

When Joshua was 3 1/2 months old, he had heart surgery to repair a defect he was born with. He had two holes in his heart: one that was supposed to close at birth (we all have this)...and then a larger one that was between two chambers. And, there was just one valve. The surgeons not only had to patch the hole, they had to split the already very tiny valve into two valves...one for each chamber.

That was back in 1986.

Joshua goes to the cardiologist at Arkansas' Children's Hospital every 3-4 years for a check-up...and there's never been one problem that has shown up. He still has a murmur, but it's slight.

Every time we go, I hold my breath and try to mentally prepare myself for the doctor to say that more heart surgery is required. They told us back in the beginning that this could be a possibility one day.

So, Tuesday, on my drive, I start praying about it...and I mentally argue with myself all the way to Little Rock. I debated on whether to even take Joshua to TR. I was trying to ask him questions without him thinking I was worried, and without making too big of a deal about it to him. The FRIENDS all love them some drama, so I knew that if I even hinted that I thought there was something wrong...well, he would worry, and he would tell the FRIENDS that he wasn't feeling well...and then they would probably all be crying about it in an hour.

I thought maybe he had hurt it working out...that's what he said at first. But this was Tuesday, and he and Jim went to the gym on Sunday, and he's been fine for 2 days. He also said that it started hurting in the night, and he used the words, "my arm went numb."

In the end, I took Joshua to TR and let him stay. I did not say anything to Ms. Sherrie, but I did text Clark and asked him to keep an eye on Joshua at the pool. They swim on Tuesdays, and the kid group Clark works with is there at the same time as Joshua's adult group. I prayed all the way home and most of the day.

There are just so many things that can happen to kids and adults with Down Syndrome...health-wise. And things can go downhill FAST. They can't always articulate how they are feeling and what is going on...until it's too late. And then sometimes there are things that just can't be helped. Their life-span is not like yours and mine. Anytime he does anything out of the ordinary, it's a red flag.

For example, he is typically up at the crack of dawn. He goes to bed early, and he gets up early. Like clock-work. There have been rare occasions when it's 8 or 8:30 in the morning...and he hasn't been down to eat breakfast. I will go to the bottom of the stairs and listen. If I don't hear him stirring around, my heart immediately starts racing and my hands get all clammy. I fight the urge to panic. I don't want to climb the stairs and check on him.

I just don't know what I will find.

Crazy, huh? But things like this have happened with FRIENDS that we know, so it's a part of our lives...this watching and knowing.

Anyway, Clark had had a really bad stinger in football a couple of years ago, and had extensive therapy for months. So, at the pool on Tuesday, Clark "did some tests" on Joshua to figure out range of motion and pain...when it hurt and when it didn't. DR. CLARK came to the conclusion that Joshua had slept wrong or something. He showed Joshua some exercises and stretching he could do, and used the words, "water work-out," and Joshua was all over it. The boy loves anything health- or fitness-related.

I also figured out that Joshua didn't really understand the word, "numb." Which is what I kind of thought was the case. I said, "if your arm was numb, then you couldn't feel it...or couldn't use it?" He said, "no...it was just really sore."

It's better now. We think he did strain it in some way without realizing it.

I'm just so thankful for every day with Joshua. Jim and I, we feel so blessed to parent him, and have him in our lives. He brings immeasurable joy to our family. This watching and knowing that I talk about...I think it keeps us all aware of how precious life is, and we just don't want to take our time for granted. I like to keep things light here on the blog (and in life), but there have been some hard, sad and scary days...y'all know that, right? I usually just post the funny stuff with Joshua, because that's the way I am. I try to find the good and the funny in situations, because I don't want to focus on the sad.

And, right now, we are in what I'm calling the "years of blessing," and things are good and fun and we laugh a LOT. I just feel like we will face more hard days as Joshua ages. Not today, hopefully, but we just never know. Just like we just never know about our own lives...when they will end.

We don't know what the future holds with Joshua. We do know the One Who holds his future, and ours.

And, as much as I don't want to think of a day without Joshua in it, I know that God loves him more than we ever could, and that He wants the best for him.

"Better is one day in Your courts than thousands elsewhere..." Psalm 84:10

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