It’s OK If You’re Still Grieving About Your Child With Down Syndrome

In honor of Down syndrome awareness month, I’ve lined up a few guest posters. Today’s is from Gillian Marchenko, a writer, speaker, advocate for special needs, and a mom to four daughters. Two of her daughters, Polly and Evangeline, have Down syndrome. You can read all about her family at her website, or follow her Facebook page. This is the message she wanted to share with all of you:

October is Down syndrome awareness month.

As mother of two girls with Down syndrome, I love it.

It’s a great time for focused advocacy for my daughters and for 400,000 other individuals affected by Down syndrome in the United States today.

There are many ways to advocate for our kids. We can blog 31 for 21, (31 days of blogging to promote awareness about Down syndrome), or participate in Down syndrome weekend blog hops. We can gather teams for Buddy Walks, go to a GiGi’s Playhouse shin dig, or speak to elementary classes about disability.

A lot of parents come alive with advocacy in October.

I applaud you. I join you. The simple message, that our kids are more like everyone else than different, deserves to be heard.

This year, however, I’m compelled to advocate for another people group in the Down syndrome community, often overlooked.

I’m talking about parents who, for whatever reason, are not ready or do not want to celebrate Down syndrome.

What does Down syndrome awareness month look like for them? If a mom is too tired to go to a Buddy Walk, or speak to her local school about Down syndrome, does that mean she loves her child less than those who are leading these endeavors? Does it mean those parents are out of our “club”?

These are not rhetorical questions. The answers are no.

Parents: If you have a child with Down syndrome, but aren’t ready to celebrate this October, or if you maybe just plain don’t want to, it’s OK.

That’s my advocacy for you.

It’s OK.

Parents of kids with special needs know better than anyone that each person is unique.

Some of our kids read at an age appropriate level, while others may never help turn a page in a book.

Likewise, we parents are individuals.

There is a spectrum when it comes to parenting kids with Down syndrome. Some parents do it boisterously. They love advocacy, and fundraisers, and clubs. Others still don’t know what to think about health concerns, speech delays, prolonged potty training, and fights for inclusion, all because of a third copy of their child’s 21st chromosome.

It’s time for our Down syndrome community to scoot over and make space for all the members of 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.

Otherwise, we are not actually a community. We are bullies, trying to make people feel how we think they should feel.

The point of Down syndrome awareness is not to show who loves our children most through our actions.

The point is to educate people.

There are many of us. We are all different. Our stories are unique.

Let’s show support and grace to one another.

And make space in our wonderful club for everyone.

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  1. by Linda Atwell

    On October 17, 2012 at 3:32 pm

    Thank you, thank you for writing this. I love my thirty-two year old, special needs daughter (mentally challenged from an unidentifiable syndrome!!!–what in the heck does that really mean???), but I wish she (and I) didn’t have these unique challenges. I wanted healthy children. Selfishly, I thought I deserved them. Living life with Lindsey has opened my eyes to many things. One, I am stronger than I ever thought possible (and so is my daughter); and two, I can handle (mentally and physically) more than I ever thought I’d have to. But that doesn’t mean that I don’t miss the daughter she might have been. I’m writing a book about how a special needs daughter changed my life. This post will touch many parents with a special needs child. There is no one perfect way to grieve–or one perfect path to acceptance. So again, thanks for this post.

  2. by Louise at BLOOM

    On October 17, 2012 at 4:35 pm

    Bravo! The last thing we need is a “competition” between parents as to who is better coping with their child with special needs. We don’t need to “prove” our worth as parents based on our emotions or where we’re currently “at” in the journey. Thank you for a very important reminder! As families who know a lot about exclusion, the last thing we want to do is exclude families within our “club.”

  3. by Paula kelley

    On October 17, 2012 at 5:49 pm

    Thank you for an awesome article. We have a 33 year old mentally handicapped son and sometimes I still grieve for the child we were expecting all those years ago. Not so much when he was a small child, because not as much is expected of a child, handicapped or not. But as he got older, the gap between him and “normal” got wider and wider. Even my husband and I differ on how we deal with our feelings. He tends to be very hands-on, taking our son out to public places while I tend to want to keep him home, away from stares and whispers. We tend to each let the other handle things their own way and it works for us. All this to say that while everyone loves their disabled child with a fierceness, everyone is different and not everyone DOES want to celebrate or get involved or discuss their heartache and grief. To each his own.