A Community Loss:  One of the Effects of Being Part of a Disability Community

There is a weird thing that happens to parents of children with special health care needs.

Over time, we make friends (real or virtual) with other families like us. Whatever the reason, there is usually 1 or 2 families that you really relate to. Maybe their child has similar complications or diagnoses, or maybe their family dynamic is a lot like your own. In some cases, this may even be a mentor family that you were connected with through a program like Texas Parent to Parent’s Peer Parent Mentor Program.

Through the years, you see their triumphs and challenges as your own (as they likely do yours).

Sadly, in this community, a lot of our children do not make it to adulthood. When a family loses a child, it takes a toll on the entire community. While you are grieving for this child, as well as for the family that lost the child, there is another element that is not typically discussed.

Losing a child that you relate to your own child makes your child’s future much more real.

You can’t help but go to a very scary place. Every cold your child gets or odd symptom they start to show sends you into a panic. “Oh no, what if this is the end?” You realize just how precious time is, but you also spend a lot of time obsessing about your child’s fate. 

While this is a very normal response and something that all of us go through at one time or another, how do you overcome this reaction? Whether you have days, weeks, or years left with your child, you want to make the most of that time and not spend it worrying about the end. I personally have gone through this a handful of times, and each time it was very difficult to stop obsessing and refocus to help my daughter live the fullest life possible. I do have a few tricks that may help.

1. Take a minute to focus on the differences between your child and the child that passed away. When you are focused on the similarities, it is much harder to separate your child from the child that passed.
2. Give yourself a little time to obsess, but keep it short. Allow yourself a day. During this time make sure that you have all your ducks in a row for whenever the time may come, but then acknowledge that until then, there is nothing else that you can do. Processing that information helps to refocus on what’s right in front of you.
3. Take every chance you get to tell your child how much you love them, how proud they make you, and never pass on snuggles, hugs, and kisses. You can never have too much love.

If you find that you just can’t shake the impending doom, and it is conflicting with you being able to enjoy the time you do have with your child, you may want to seek professional help. There is no shame in seeing a counselor or psychiatrist. This is a very difficult journey for all of us, and there is no single, right way to process any of the emotions that will come your way.

Here is additional information on counseling for parents.