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The Road to Embracing My Son's Diagnosis for What It Is


I have been thinking back today. Just reminiscing about the start of our story with Noah. How I used to feel. I think about it now to be able to help others. To think about how things were to how things are now.

I remember going through the, “But it’s not fair…why can’t things just be normal, why can’t today just be different…is it too much to ask to just…”

Resentment that it’s always so hard starts to build. Guilt that maybe it’s your fault it’s like this (spoiler alert…it isn’t). Noah was allergic to everything. Everything we tried he ended up back in the hospital. I so badly wanted to be able to feed him. Then came the tube and I was scared, upset and worried for the future. Little did I know this was just the start of the upgrades and differences we would be gifted. Then we start to make up stories too…

“I’m not going to talk to my mates about it, they don’t want to hear about my stuff…they won’t understand what I am going through…it will be easier to just detach…I don’t want people to know how weird/hard/strange things are….I get it.”

Our expectations of what our babies would be were different. It wasn’t supposed to be this way was it. But if we truly believe everyone else is having a normal time, doing normal things, we only succeed in isolating ourselves too. It’s another story we have made up. The problem is that often this fantasy of a normal life and things being easier is what keeps us going to — the thought — that maybe this time will be better. It’s a tough loop to be in.

Acceptance that things are different, and that our reality isn’t ordinary, is essential. And oh so freeing. Our silence about how we feel about what “should have been” stops that grief we need to feel to let go. To grief our past expectations are the beginning of our healing. We can’t forgive if we can’t grieve. Loss of what “might have been” is confronting. Acceptance of “what is” is how the next chapter starts. There is a deep peace in accepting “what is.” All of it. There is a deep joy in celebrating the differences. In reality things are different, but they are also the same as so many parents and the worries for their kids.

We just want what is best for them. Noah doesn’t have special needs, just additional needs. I am grateful for his amazing upgrades and incredible insights into a world I would never have known without him.

I left behind what “should have been” a very long time ago, and I am so glad I did because otherwise I might have missed how awesome things are…just as they are.

Image Credits: Kat Barlow

Photo submitted by contributor.