It looks like a mess to you.  It is a gift to me.  

When our son was first diagnosed, we began the process to receive extra services including respite.  At first, I balked at respite.  I didn’t need extra help.  We had people that watched Evan.  He doesn’t require extra medical care and is a really good kid.  I didn’t need caregivers.  

Oh, how wrong I was.  

Screen Shot 2020-04-30 at 12.05.51 PM

Evan requires extra eyes on him.  He is at a higher risk for certain things and cannot be left unattended due to safety awareness and mobility.  Factor that into hiring a sitter and how much extra should you be paying for that kind of supervision?

Being with Evan is not unpleasant.  It can be difficult though.  My brain never shuts off.  I’m tired once he is down for a nap and trying to accomplish the daily “stuff” just doesn’t seem to get done all the way.  

When our respite services finally began (because everything good takes time), it was heaven!  We were able to hire our own caregivers and found several amazing ones!  I cannot thank them enough.  Evan laughs and has such a wonderful time with them!  They are true gifts!

Then we were hit by the pandemic and everything that had once been a help to us went away…preschool, in-person therapy, play dates, outings to the park and even to a store to hold the door for mom (his favorite thing when in the cart), and respite.  

Yes, it is all for good reasons.  I am not going to pretend to be medically intelligent (cause Google is my best friend whenever I encounter something – and that’s never good news) or enter the debate of what’s currently best, but when you have a child with a disability who automatically enters a higher risk category and the unknowns of how they will be affected, staying home seems the safest.  

Thankfully, we were able to utilize one of our caregivers (who also works with my husband so they encounter the same group of people), and that picture is my gift.  

I took a two mile walk, washed baseboards, filed paperwork, read a book, and even blogged.  It gave me the breathing space I need.  Mundane activities, yet magnificent!



7 thoughts on “Gift

  1. I am glad you were able to have some time for yourself. No matter how big the love and resilience in taking care of someone, it can only happen when there is a chance to recharge.


  2. This is what I thought of when I read your post today, from the book The Boy, the Mole, the Fox, and the Horse by Charlie Mackesy: “What is the bravest thing you’ve ever said?” asked the boy. “Help,” said the horse.” I understand how valuable respite is. You are brave!


  3. Oh, I love seeing Elsie quote from the book I recommended. And it is a brave thing to ask for help So glad your respite care is allowing you some breathing space. Finding the magnificent in the mundane is a gift and you’re doing it!


  4. I’m so glad you were able to find a way to get your own needed respite and at the same time find a good way to offer that to your son as well. Bravo to accepting what he needs and what you need.


  5. I love that you are taking the time to savor the gift of a caregiver’s time with Evan. The time for a mother’s self care is fleeting, and so necessary!


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