This is NOT one of those encouraging posts about being ok with your typical child not being a superstar on the football field or basketball court. It IS an encouraging post about YOU – the special needs parent – the Cheerleader. Your child’s biggest fan and the supporter of all other special needs families.
I came across this amazing post by Gillian Marchenko and knew I HAD to share parts of it with you (but I also want you to read the ENTIRE post HERE.)
“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.
You don’t have to be a cheerleader every day.
There needs to be a space for those of us who need time on the bench. That’s me, too. Often.
If you are struggling with your child’s special need today, I just want you to know that you are still a vital, important, valued part of our special needs club.
Your journey is simply that: yours.
And it is valid.
If you are struggling today, it’s okay.
If you don’t want to go to a Buddy Walk this year, don’t go.
If reading upbeat blogs about families thriving in the world of special needs makes you feel inferior, don’t read them for now.
If you are forcing yourself to do things your heart is not ready to do, that’s not awareness, that is peer pressure.
Give yourself grace.
Better yet, remember the grace that Jesus offers:
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. – 1 Corinthians 12:9
The only thing to do is love your child.
There are many of us. We are all different. Our stories are unique.
We all need support and grace.
But we all are in the same club.
And we all should be heard.
Thank you Gillian Marchenko for the amazing reminder that is is ok to sit on the bench sometimes. I don’t always allow myself to do that. Actually, when it came to Down Syndrome – I sort of thought…”this will be easy”….I had been living in the Rett Syndrome world for a few years with Brooklyn before Down Syndrome entered our lives.
And yes, there were absolutely things that were easy the second time around. Like knowing what early intervention was, getting on the waiver wait list right away, organizing medical papers from the start, knowing initials like OT, PT, ST, and how these people could help my son. I embraced every small milestone instead of focusing on the ones he was missing (MOST of the time anyway)
Where is was not easier was the emotional side of it – there were a lot of why me? why my kids? And then there was the Rett Community that I loved and supported that I did not want to let down while I was dealing with this new diagnosis. I found myself getting back out on the field to cheer even if my heart was not in it. I think the real blow came with the duel diagnosis of Autism this year for Boston. There are days that Autism swoops in and grabs me by the ponytail – takes my pom poms, megaphone, and throws me to the ground. CHEERLEADER DOWN….call the trainer!
It is then that I realize I have not taken the time to “sit the bench” for awhile. Every good athlete knows that you need a break sometimes – to rest, hydrate, and reserve your strength in order to be your best for the game and today reading Gillian’s post was a nice reminder of that, a justification of sorts that it is ok to “sit the bench” sometimes…and simply love your children.