What happens to our child with special needs when our own health—in my case an eyeball—goes wonky?

My retina detached sometime in early October and I’m not sure how I managed to be awake and not freak out during surgery to reattach it. Just reading about the “vitrectomy scleral buckle” surgery after the fact makes me nauseous.

Not everyone can say  they have been blind (in one eye in my case), or  have had to lay on their side for 13 days, only getting up 20 minutes every 6 hours plus necessary bathroom breaks. I have survived, with the Lord’s help, both of these things!

I can now be up and resume life but the new normal includes very blurry vision in my left eye that as of yet can’t be corrected with glasses. For reading or writing I wear a patch over my left eye (the bad one) and play at being a pirate.

What made this experience 100 times more terrifying for me is I am the main caregiver for my youngest son, Luke, who has autism and is non-verbal. I, like so many other caregivers of children, teens or adults with disabilities know I somehow need to stay healthy forever. Otherwise, who will love and care for my precious Lukey?

Don’t get me wrong. I am so thankful for my husband, who is an awesome dad to both our boys. But, as a police LT who keeps our mortgage bill paid, he is home less often. He, with the help of awesome family and friends, took over for the 2 weeks during my must-be-horizontal-time although it was still a form of torture for me.

Why? Besides the obvious (being blind in my left eye, being stationary, not being able to read from that angle with my good eye) I had to hear Luke’s meltdowns from behind the locked bedroom door and couldn’t do a thing to help. Luke is very strong for an 11-year-old and did not understand why I wouldn’t get up and do things with him, so when he was home I had to hide upstairs in our bedroom. For his morning pre-bus routine I am the one that knows when he starts running wild to ask him to give me a hug. When he does I cling on to him for longer than he would like giving him deep pressure input to calm his overstimulated body. Telling him to stop it and calm down does not help, which is my husband’s technique. I also know that if he doesn’t want to get his coat on before the bus comes bribing him with a fruit snack or gummy worm gets him moving! On a couple different mornings I heard him screaming as Mike walked him out the door and down the driveway to the bus. Like I said, torture.

Two different sets of life-long friends opened their homes to me so I could have part of the recovery time free from hearing the craziness at home. This was a huge blessing.

Another blessing during the on-my-side-time was God’s presence. I was alone for much of the time so the Bible verse, “Be still and know I am God” took on new meaning for me. I was literally forced to be still and I was fearful so my prayers were much more frequent and urgent than normal. Plus, I had more time to intercede for others. Family and friends commented that I was handling things with grace and peace and this was all the Father’s doing.

Now though, I am back to “real” life with the new vision issue and it’s easy to slip back and worry again. About my own sight, yes, but also how it affects Luke. I am fine with him around the house but he is a fast runner and gets away from me sometimes when we are out in the community—and that is with two good eyes.

So I haven’t been able to take him out anywhere and this is frustrating for both of us. I’m praying that what the eye surgeon says is true—my sight will improve with time and glasses can help when my eye is more stable. But it’s hard waiting. And I so wish the Lord would show me ahead of time that Luke will have a great place to live and people who love him when we can no longer care for him ourselves.


About morethanwords1

I'm a mom of two very different boys. One has no probelm talking, loves and is gifted at reading and writing and the other has a bright smile, amazing laugh but can barely talk.
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1 Response to What happens to our child with special needs when our own health—in my case an eyeball—goes wonky?

  1. Cathy says:

    I had never thought about the “forever” aspect of staying healthy for Luke. Your writing is breathtakingly poignant and as always, my faith is affirmed by your place in my life.

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