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Saturday, 22 June 2013

A brief interlude, grief and support and random thoughts

What I am writing as our 22q story is only our own experience.

The reality is that some 22q11 deletion children die. They catch something that their immune systems cannot handle. Their fragile hearts give out. A mistake is made at a hospital and a crucial medication is overlooked.

We are blessed that none of these things are reality for us right now. That is not part of our story. I don't know what it is like to sit next to a breathing machine. I don't know what it is like to hear a crash cart called for my baby. I simply don't know.

This last year a 22q child that was very much a part of our community died because of complications, hospital error, and lack of communication between specialists. The heartbreak has been felt like a tidal wave through our community. That family lives one of my worst fears.

It is not that I don't trust doctors, I just know that when things get as complicated as they can be, things can easily go wrong. I know that the most medically invasive options is not always the best. I will not get sucked into trusting someone just because of letters that follow their name, they have to earn that trust. They HAVE to work for that trust.

When Isaac was first diagnosed my first impulse was to call the three mums I knew that had special needs children. S., H., and L. were so amazingly supportive. H. and I had long phone calls and visits where I cried. S. gave me tips about doctors. L. invited me to the Down's Syndrome group.

Wait. What?

So many times in the 22q community families are referred to the Downs Syndrome support networks. So many times it becomes a hot button. My kid does not have THAT. The reality is that children with physical markers of their genetic promise are discriminated against, publicly singled out, and mocked. We don't want that for our children. We put distance between that and our family. The reality is also that folks with typical children are putting that same distance between our children and theirs for the exact same reason. 

Downs Syndrome and 22q11 deletion syndrome have LOADS in common. Hypotonia, heart issues, immune dysfunction, motor skill delay, speech issues, OT, PT, ST, IEP's, specialists, therapies, othering, discrimination, family tension, hearing issues....this list of things in common are more extensive than we realize. Chromosomal anomalies have issues in common globally. The reality is that it makes sense to connect our families and our children and support each other.

Once the initial shock wears off, consider it. I am grateful that I did so quickly because these families are still a HUGE part of our support network. It is good to have real life people that you can cry with and to, outside your own family.



2 comments:

  1. I totally agree with your recommendation.

    I've got a daughter with Down syndrome. It's one of the most common disabilities there is, so the support groups tend to be large(ish) and well-connected.

    Even if you don't share their exact disability, they will have educational resources, physical aids, books, videos, etc and will be able to point you to all kinds of great specialists in your local area. They will also know all the different government programs, grants, respite services, sibling programs, etc that you might need to access.

    Plus, they're very friendly and understanding :-).

    ReplyDelete
    Replies
    1. YES! Very helpful, friendly, and kind. It isn't about holding one kid's differences over another, it is about supporting each other and cheering on every success.

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