Entry Fifty Five- Support Groups

After Oscar was first diagnosed, I was made aware of several different support groups relevant to our new situation. My parents eagerly joined these groups. I was a lot more hesitant. Perhaps I was in denial…

By the time Oscar was 4months old we had been through a lot and had learned of both of his diagnoses. It was easy to be in denial because even a “typical” 4 month old isn’t supposed to be doing too much (developmentally). I felt like I didn’t belong in those support groups. Or maybe it is more that I didn’t want to belong in those support groups.

I was convinced that my son was going to have a mild case (despite the neurologist telling us that his polymicrogyria was “extensive” and despite what the reading material said about 1P36 deletion syndrome provided to us by genetics). I was in denial. My social worker said that support groups are there to make people feel better, if they don’t make you feel better, then don’t participate. So I didn’t.

After some reflection, I think that you (or at least this was true for me) have to have gone through some of the stages of grief before a support group is helpful. This may have been another occasion when my rational brain was not communicating with my emotional brain. My rational brain knew of my son’s diagnoses but my emotional brain didn’t.

Over the last year I have achieved a lot more “acceptance”. I so desperately wish that things were different, but I am on the road towards acceptance. I think by having reached a certain level of acceptance with my son’s diagnoses I am now able to browse and occasionally participate in these various online support groups.

I had wanted to write a post about support groups a year ago when I first started my blog. I wanted to write about how I felt like they worked for some people and not for everyone. How they weren’t helpful for me. How they only took me deeper into this dark place I was in of uncertainty, denial and grief…I am glad I didn’t write that post back then, even though that is how I felt.

We have all been through so much. We know that things aren’t always going to be “fine”. We all want what is best for our kids and for our families. We are all balancing “regular life” with medical and therapy appointments. We all share a deep worry about the future. Without knowing me, they know me.

Photo Taken: May 2021

2 thoughts on “Entry Fifty Five- Support Groups

  1. I felt the exact same way when we got my daughter’s 1p36 diagnosis at 2 months. The support groups were just too much. It was better for my emotional health to just take it a day at a time and live life, rather than think about the future. Over three years I’ve slowly dabbled in the support group and finally appreciate it!


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