special needs parenting

Moments of Unexpected Grief

As we drove up the hill to my parent’s condominium for Easter on Sunday, one of those moments happened. The trigger was tiny, ridiculous, but there it was. A toddler walking with his dad, holding one of dad’s fingers, going at a turtle’s pace.  And there it was, as if it dropped from the heavens into my heart, sorrow, and a tear, quickly rubbed away hopefully unnoticed by anyone but me. 

It was one of those unpredictable moments of grief that crop up along the way when you parent children with disabilities. Why did that sight get to me?  Because we did that exact same thing with oldest child, Hannah. The child who sat through church and then has to wait for dinner on a holiday, and they’re restless and buggy, so you take them out for a little walk to blow off the steam. It was a totally normal parenting moment. 

And a moment I never shared with my boys.  

Alex could walk around that age, but going for a walk was out of the question, and Ben didn’t even take his first steps until he was well over two years old. 

When we found out Alex had Down syndrome when he was born we took the time to grieve the big stuff and gain perspective, the big stuff isn’t sneaky, it’s right there in front of you, demanding to be dealt with. It’s the minute, every day moments that sneak up on you with grief that’s almost entirely unpredictable. 

How would one expect, when carting an 11 and almost 15 year old to Grammy’s house to be struck with a moment of grief from early childhood.  Even though it can be a giant pain in the hiney to have to manage a restless toddler during a long day of holiday celebrations, it so often happens that during those moments the real sweetness of parenting occurs. That time he first sees a frog or picks up a stick which, during the course of the brief walk, becomes all manner of tools. The moments of little joys that are often remembered long after all the egg hunts and Easter dinners become almost indistinguishable in our one from the next in your memory. 

Then there are the moments you don’t realize you’re missing until it smacks you in the face, with no advance warning, and that is the ongoing grieving of parenting children with disabilities.  You can go weeks or months without ever feeling a twinge, but there’s always something beneath the veneer that is waiting to be revealed, with the most uneventful of events. Like seeing a father and son out for a perfectly normal walk.  


2 thoughts on “Moments of Unexpected Grief

  1. I have two special needs kids. Today was a big celebratory day for my 18 year old son with Down Syndrome and hearing impaired- I’ve missed it because I’m outside consoling my 9 year old who is blind and has autism. The moments I grieve are when the needs of one outweighs the needs of another child.


  2. I’ve had several moments like that. My son is 6, non-verbal, epileptic, asthmatic, and unable to walk without assistance. The first time was at a cousins birthday party. The little girl was aware of their age similarities and began asking why he couldn’t talk, walk, or do any of the things she could…it broke my heart, and I cried a bit that night. But only for a moment for I knew he is how God intended him to be. Loving, gentle, and that makes him simply perfect. I do have moments of grief from time to time and I’m sure I always will, but I can’t imagine things any different. I just make sure to tell him how much I love him about 20 times a day everyday so I know he never has any doubts. He is perfect ❤


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