It's the thing we don't talk about...what we don't even want to think about.
Death...in children. All children, of course...but I'm talking about the ones who have special needs.
The ones like my Joshua.
He's 28 years old, but...until recently, the life-span in individuals with Down Syndrome was very short. Even now, it's 50...maybe longer.
Maybe shorter.
Kids with special needs are more susceptible to illness...and injury. They may be born with issues that directly affect their health from the very beginning. If they have physical limits or abilities, they are at risk for circulation and respiratory issues.
Behind the 8-ball from the start.
It takes diligence to care for them, but sometimes even that is not enough.
With Joshua, he was born with a heart defect. At 3 months of age, he had heart surgery. Like, chest-cut-open heart surgery. He had 2 wholes in his heart that were repaired, and he had 1 valve that had to be split into two valves.
No big deal, right?
I remember going in to see him right after his surgery. He looked so little laying in that hospital bed. He had a long incision down his chest and some bandages. He had 3 chest tubes coming out of his chest that were draining fluid, and he had a catheter and IVs and I don't even know what all else.
There were monitors that beeped constantly, and just in case you thought you could have a moment of peace, alarms would randomly go off and jolt you back to reality. We stayed in a constant state of alert and readiness. I don't think I slept more than 2 hours at a time for weeks and weeks.
After Joshua's heart surgery, he did very well. Through the years, he has been extremely healthy and we are so thankful. Fortunately, he is also very interested in healthy eating and exercise. I have to acknowledge Jim's influence on him with this. Joshua will do anything to be like his Dad.
I've talked before about Joshua's love of routine. He is an early riser, like his Dad. On the days that we go to Little Rock, he is up by 6 a.m., even tho we don't leave our house until after 8 a.m. He will get up and make his bed and have his quiet time before he comes downstairs for breakfast.
But there are mornings...like this morning...when he's not up. And it's 9 a.m.
Granted, yesterday we decided that we were going to stay home today and not go to Therapeutic Recreation. The weather here is unstable today. I am married to someone who works for the utility company, and he takes weather seriously. He doesn't want us to be afraid...he wants us to be cautious..and he is able to do his job better if he knows we are in a safe place. He's not distracted, wondering where we are or if we are on the road.
Last night, I reminded Joshua that we would be staying home today. On the nights before the days we stay home (does that make sense?), usually Sunday nights and Thursday nights...Joshua will tell us good-night and head up to bed. Before he starts up the stairs, I always say, "DO NOT get up at the crack of dawn." And Joshua will always say, "on a SUNDAY (or Thursday)? Why WOULD I?"
Still, his body is wired to wake up early.
Not this morning.
And I started getting that sick feeling in my stomach. I walked by the stairs on the way to the laundry room, and I could see from the bottom of the stairs that not only was his light not on...his blinds were not open. Joshua always opens his blinds. He likes to see the world from his "turret." I stopped and listened...nothing. No sound at all.
Joshua is typically very quiet...but he's not silent. He talks a lot...mumbles. He makes mouth noises that are unique to him...and we all know what they are and can usually tell what he's doing. He also "self-talks," which is kind of a "thing" with people who have Down Syndrome. We can hear him mumbling and talking to himself. I will yell up and say, "who are you talking to, Joshua?" And he will call down, "myself!" He also wears Crocs when he's at home and his little feet in his Crocs make a certain noise when he walks.
Not this morning.
I tried to stay busy, but my mind was racing. Why wasn't he awake? I didn't want to go upstairs because I was afraid what I might find.
Just in the past few months, there have been several friends who have passed away. A couple of them were sick...but the others died in their sleep. Heart related issues.
It's something that is always in the back of my mind. I try not to be consumed with it every moment of every day. I know that God has ordained all of Joshua's days, just like He has ordained all of my days. And all of yours. And while I know Joshua will be in Heaven when He dies and that I will see him again one day, I am not mentally prepared for that day to come. I am thankful that God gives us grace for each day. Like the manna He provided for the Israelites in the wilderness...it cannot be bottled up and saved for future use. It is provision for each day.
And I am thankful that God doesn't show us the future. As much as I think I would like to know what is ahead, I know that would not be best. The uncertainties in life are what keep me looking to God...and what keep me on my knees.
"I will both lie down and sleep in peace, for You alone, LORD, make me live in safety. Psalm 4:8
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