For parents who aren’t ready to celebrate Down syndrome
(This is a post author Gillian Marchenko (Sun Shine Down) shares every year in October for Down syndrome Awareness Month. If you are a new parent or a seasoned parent to a child with Down syndrome, wherever you are in the journey today, Gillian is here to tell you it is okay.)
I read a blog yesterday from a mother of a child with Down syndrome.
“I love my daughter but I’m not ready to celebrate Down syndrome.”
I just want to say that I hear you. And I validate you.
Sometimes in our special needs circles certain types of people are pushed forward as spokespeople.
You’ve got the instantly accepting parent who doesn’t bat an eye at Down syndrome, but dives right in raising awareness and helping people around him/her get educated.
You’ve got the rock star mom who taught her kid to read and potty train at a crazy early age for any child.
You’ve got the overzealous dad who claims that everything, absolutely everything about Down syndrome is just awesome.
I love and respect all these types of people.
Heck, I am/was/will be these people at different points in my journey as a mom to kids with Down syndrome.
But in our club, there needs to be space for parents who are struggling, for families who are flailing, for mothers who feel like they are failing, for children who may never be potty trained.
If you are struggling with Down syndrome today in the midst of Down syndrome awareness month, I just want you to know that you are still a vital, important, valued part of our special needs club.
If Down syndrome awareness month is difficult for you because you are not ready to fully embrace the world of special needs; it’s okay.
It’s okay.
Your journey is simply that: yours.
And it is valid.
Every person is different.
Some parents get over the shock of a diagnosis in two days and sign up to run a Buddy Walk at the end of the month. Others (like me) take a lot longer to process what a child with a disability means to the family.
My first year with my daughter Polly was difficult.
I was jealous of other mothers who could accept that Down syndrome was a small part of their children and move on.
They seemed to handle everything so much better than me.
Guilt made it difficult to reach out for support. Guilt held me back from allowing myself to grieve, actually prolonging the process.
Jealousy and guilt waste energy.
Such ruminated emotions suck up time that could be used to seek out love and support. Energy desperately needed to take care of our families, and ourselves.
I ask you, what parent has oodles of extra energy that can be wasted?
If you are grieving the loss of the child you expected: It’s okay. Grieve.
If you don’t want to go to a Buddy Walk this year. It’s okay. Don’t go.
If reading upbeat blogs about families thriving in the world of Down syndrome makes you feel inferior. It’s okay. Don’t read them.
Give yourself grace.
If you are forcing yourself to do things your heart is not ready to do, that’s not awareness, that is peer pressure.
The only thing to do is love your child.
Even if you don’t ever get to the point of running a Buddy Walk.
It’s okay.
The point of Down syndrome awareness is not to show who’s the best parent to kids with special needs.
The point is to educate people about our kids and our families.
And there are many of us. We are all different. Our stories are unique. We all need support, and grace.
And all our stories should be heard.
