WORLD DOWN SYNDROME DAY - Every story counts

WORLD DOWN SYNDROME DAY – Every story counts

The theme I’m embracing this year for WORLD DOWN SYNDROME DAY is simple.

Every story counts.

I admit, the idea came to me rather selfishly at first. And it’s just me. There’ no bandwagon. I don’t have an organization behind me. I haven’t teamed up with a bunch of different bloggers. So my theme probably won’t go out into the world that far. That’s okay. The message rings true still, to me.

One of the biggest push backs I’ve received (both in and outside the disability community) regarding my book Sun Shine Down is that there isn’t a need for more memoirs about Down syndrome.

“Oh, goodness, another memoir about Down syndrome.” one reviewer said. I could just feel her rolling her eyes as she wrote the words.

Poor reviews are expected in the writing business. The ones I’ve received have actually made me feel legit as an author.

But as I got to thinking about the sentiment ‘oh, goodness, another memoir about Down syndrome’, I realized what really bothered me about it. I’m a story person. There can never be enough stories in the world.

Moreover, every parent of a child with Down syndrome has a story.

And every story counts.

I parent two girls with Down syndrome. My daughter Evangeline has a dual diagnosis of Down syndrome and autism. Sometimes, and I feel bad about this, I tend to downplay her story a bit because, frankly, her story, our story, can be difficult. We are struggling with autism. She is nonverbal and sometimes aggressive. Should I really use all that to fan the flame of Down syndrome awareness?

Yes.

The answer is yes.

Because I embracing the notion that every story counts.

I struggled at first with my other daughter Polly’s diagnosis of Down syndrome in Sun Shine Down.

“I know of other mothers who have children with disabilities and right away they loved them and decided to fight for them. That’s not my story.”

I go on to say in the book that my arriving late to the party of Polly’s love is one of my greatest failures. But regardless, again, it is my story. I embrace our sloppy, beautiful, strange, unconventional, redemptive story. I’m thankful for it. I’m thankful for both of my girls. And I am happy to say that Polly and I are completely in love.

Every story counts.

-The parents who grieve the diagnosis.

-The mom who doesn’t give Down syndrome a second thought and gets busy with loving her child.

-The dad who still might, if he has a moment of honesty, struggle with his daughter’s disability.

-The parent who starts foundations and leads buddy walks in honor of her child.

Do you agree?

Then share your story. Leave a comment below that answers the question “When I was first told my child had Down syndrome I…”

Hop over to my Facebook Page. Through out the day there will be pictures and thoughts from parents in their own words about their stories of Down syndrome. I’d really appreciate it if you shared them with friends and family via whatever social media channels you desire.

Every story counts.

Because every person counts.

Every child with Down syndrome matters, regardless of ability.

And today I celebrate our stories, and my two beautiful daughters, who teach me daily about life, faith, and love.

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5 comments found

Sharla says:

March 21, 2014 at 3:30 pm

When I was first told my child had Down syndrome I…wanted to run away. I wanted to rewind to my happy normal easy life. My son is 3 today and he has brought so much joy and richness and love to our family. We just adore him and I can’t imagine life without him

Michelle Wolfson says:

March 21, 2014 at 9:43 pm

I was most worried about whether she would survive, and then about her quality of life. Her pediatrician, who had come to the hospital since she was in NICU, told me the best thing anyone could have told me. She is a baby first and far more like other babies than not; the DS is secondary. 21 years later this is still true; she is far more than her diagnosis!

Jacqueline says:

March 22, 2014 at 1:02 am

When I was first told my child had Down syndrome I…squeezed her tightly against my chest and cried. I felt like an evil virus was trying to take my daughter away from me.

At first, all I could think was, “I don’t want this.” But as I grew and healed, it became, “I don’t want this for Abigail.” Now, almost three years into this journey, it’s, “This is my life, and I love it.”

Down syndrome is neither a blessing nor a curse, it just is. *Abigail* is a blessing. One of the greatest God has ever given me. I can’t imagine my life without her. My plane landed in Holland, and I don’t regret it.

Allison Lindsey-Hobdy says:

March 23, 2014 at 2:36 am

My son was diagnosed at two with a rare chromosome disorder (9p duplication). He is delayed, most profoundly in speech/communication. He didn’t say “I love you” until he was around four-years-old. He is six-years-old now and I am just now leaving the grief stage that you mention. While he is verbal, he lacks the communication skills that the other kindergartners in his class have. Because of his severely limited communication skills, his teachers assume that he has a low IQ. Because he cannot always express how he feels, he can act out, become frustrated and shuts down. This of course makes his teachers and other school officials assume the worst. He has been in speech, occupational and physical therapy since he was two. He has made huge strides in that time however, by the rest of the world’s standards, he is considered “slow”. He is our brightest star and brings joy to our family. We will never give up on him, we will continue to fight for him and even though it’s hard, we will give him the push he needs to succeed. I never considered that I would be a “special needs mom” but that’s ok, I was born a fighter…

Andi at Bringing the Sunshine says:

March 24, 2014 at 1:59 am

When I was first told my child had Down syndrome I was both fearful and relieved, but mostly relieved. I had lost one child to triploid syndrome and my daughter has cerebral palsy. I had believed with my whole heart from the beginning of my pregnancy that I would not bring home a healthy, living child. In that context, Down syndrome was a relief.

My husband, however, was devastated. I won’t retell his story here – it’s been covered on my blog and in my ebook – but he did come around and has never looked back.

Thank you for reminding me that every story can have an impact. I’ve been hesitant to write my own memoir as the mother of a child with cerebral palsy and a child with Down syndrome (both by chance) – mostly because I wondered if there was really a need for “another” T21 memoir – but now I wonder…