Waiting Up

It’s after midnight and Jason just got home from NYC. I have to wait up for him because we have an aide who helps him with his care at night and in the morning. Being a quad, he can’t lift himself out of his chair, get undressed, etc. so someone has to help him. We decided long ago that it would be healthiest for our marriage if I was able to be wife more than nurse so having an aide has always been very high on my priority list.  I can do all of his care when it’s necessary but we just try to make those times as few as possible since I take care of all the in-between hours already.

We’re lucky because we have good insurance that pays for the care that Jason receives. I recognize that it is a luxury. I admire those who do not have such circumstances but rise to the occasion to help those whom they love anyway. I’ve heard many stories over the years – stories like mine but so different at the same time.

Each situation is so unique. Even those who also have a spinal cord injury at C5-C6 don’t have the same mobility as Jason – sometimes more where they have use of their thumbs, sometimes less where they can’t move their wrists. Each situation has it’s own set of challenges that may seem similar to ours but I know are totally different.

So, I’m writing while I wait for our fabulous night aide, Brian to help Jason get ready for bed. I’d rather not be sound asleep on the other side of the bed while all that happens so I get up and let them do their thing. I’ll go to bed when Brian leaves. That’s the routine.

But after 16 years of living with Jason, we planned for this in our new home. Through these double doors is my space.

It’s the area where I can have privacy while the aide is here. It makes them more comfortable. It makes me more comfortable. I love my “area” when our bedroom gets crowded and I love my bedroom when the aide has gone.

Conventional? No. But I have found that life with a quadriplegic is anything but conventional.