I read a blog one day 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.
You don’t have to be a cheerleader every day.
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 their child’s disability, 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 special needs is just awesome.
I love and respect all these types of people.
Goodness, 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.
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.
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.
And what parent has oodles of extra energy that can be wasted?
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.
Even if you don’t ever get to the point of running a Buddy Walk.
It’s okay.
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.
Wow! This should be on the front page of some major magazine or newspaper! You are so right! We do such terrible hurt when we take any less balanced view than this in our walk down and with those on the special needs journey!
Thanks so much for the affirmation. I spent years thinking something was wrong because other parents said having a child with Down syndrome wasn’t any different for them. Yet our journey involved years of medical appointments and therapies and progress at a rate that was, at times, imperceptible to the naked eye. In short, even though we love her dearly, there are times when it’s just been hard. Thankfully, God is showing me that it’s OK to take a deep breath and admit that it can be hard, to know that He still has a plan for her and that He is capable of getting her (& me!) to the next step/goal/ milestone whether I have a clue about how to do it. Thanks for sharing!