We are very blessed to have two boys. Our oldest is about to turn 21. Our younger son is fifteen, and has the diagnosis of autism, epilepsy, and other health problems.
During my pregnancy with my older son, I had a kidney stone and was in and out of the hospital continuously. Our son was born premature and I would have bet that this baby would have had a multitude of disabilities. But by the grace of God, he was not only our healthy child, but our honors student and Eagle Scout. He has excelled in just about everything he has tried. The child did it all and we were there for it all.
My pregnancy with our younger son was almost picture-perfect. But here we are today with a 15-year-old who still isn't fully potty-trained and will be forever dependent on us.
As a mom, I have continued to believe that we will get over this, we will overcome, we will outgrow…we can beat this. Reality is slowly settling in and the truth is, there are just some things that are facts for our family.
Autism isn't going away and neither is epilepsy.
As our older son completed his final years in high school, it was bittersweet knowing it was not only the last time we would be seeing him march at a halftime show but that we would also never get to experience that with his brother. It's terrible to say you grieve the loss of a "normal" child and "normal" things.
I am sad going to my niece's Pre-K programs, thinking how much I would have given to see my son participate. I grieve going to my nephew's Boy Scout pinewood derby races. I am sad when I walk down my son’s junior high halls to his special education room and see all the lockers and know that he hasn't a clue as to how they work and what the other kids use them for.
With all that being said, yes, I grieve the loss of what we might have missed out on. But I also know what I do have, and that is a child who has taught me more about unconditional love than any other human being on this planet ever could.
Unconditional love trumps loss any day of the week.
The Accepting, Grieving and Adapting to Loss section offers information and guidance about the changes and adjustments parents may experience.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.