Don’t Accept My Daughter’s Down Syndrome

October is Down Syndrome Awareness Month, and what I would normally write are bullet point facts about Down syndrome explaining the parts of that 47th chromosome and what it means for my daughter to have it.  I would probably write about why I feel it is so important to advocate for Tessa and others so glamorously sporting an extra chromosome.  I would intensely push for people to stop using the word “retard.”  And in mercy I would normally plea for acceptance and respect for my daughter, ultimately giving people two options:  either be nice or don’t be.

And you know what?  That is crap.  Let me tell you why…

(This is one of the posts where clicking publish took a while…)

For three years I based my advocacy efforts on accepting and respecting my child with special needs.  I threw her into the hands of the world as a child with Down syndrome before I ever gave anyone a chance to know her as a child, even though my message was always rooted on treating her equally–driving home the point that everyone should accept her and accept her Down syndrome.  After all, wasn’t that the right thing to do?

What I unknowingly did was join in the hierarchy of the human race, where people with special needs don’t necessarily have the highest rank. I was rooting for the underdog with Tessa in the forefront, but only speaking to a small population of people that is greatly out numbered by a larger population people who would always accept Tessa–Down syndrome or not.

What was my goal?  What did I want from everyone? I was focusing on one part of her that I wanted that small population and everyone else to overlook…Down syndrome.  Like I had created so some of invisible five-step list (expectation, rather) for each person that would encounter Tessa:

  1. Meet Tessa
  2. Learn that she has Down syndrome
  3. Act like you didn’t learn she has Down syndrome
  4. Get on over all of that
  5. Be her friend

In a way I don’t totally disagree with my steps here, friends. However I don’t see myself with such automatic expectations for my youngest Kendal, now do I? I expect Kendal to be treated with respect and to be treated kindly, despite the fact that she is a total control freak.  I do not expect anyone to accept Kendal for any one specific reason. That is where the problem lays.  I was begging people to accept Down syndrome, as though I was saying “Love Tessa.  Love her even though she has Down syndrome” without saying it at all, blindly robbing her of the chance to be seen as a person.  Therefore, was I any better than the people I was trying so hard to make an impact on?

Accepting Down syndrome.  That is what it was all about.  I wrote of it numerous times.  And if it would not be accepted, I would write about the unfairness of that.  It is easy to get caught up in wanting everyone to see your child as a child, despite having a disability, because a part of our society says that that is how they should be seen.  Getting caught up meant focusing specifically on everyone accepting her disability.

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My goals for her are unfolding as I find our place in the Down syndrome community (where I am often very misunderstood), and more importantly in the world of motherhood.  Have I not been honoring what I originally set out for–for people to like her for her? Don’t we want that for all of our children and loved ones, regardless of lingering circumstances?

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So here is what I will say for this Down Syndrome Awareness Month: Don’t accept my daughter’s Down syndrome.

Be aware that Down syndrome exists (and more than just the 31 days of October). Learn about it.  Ask about it.

We do not need to accept Down syndrome.  We need to accept each other.  Accept her for her.  Respect her as a human being.  Trust her. Listen to her. Befriend her. Understand her.  Defend her.  Love her if you want.  Invite her to birthday parties and sleep overs.  Tell her when she is wrong.  Be honest with her.  (You know, all of the things our parents wanted for us when we were little…) Just don’t do any of it because she has Down syndrome.

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In honor of Down Syndrome Awareness Month–all October long, we are selling 47 Strings: Tessa’s Special Code for just $12!

Head on over to Little Creek Press and grab your copy!

$12 book month

An Open Letter To Hoda Kotb: Thank You.

Dear Hoda,

(Let’s assume that she will probably never see this, because I am almost certain that she won’t…but if she does…)

When I was pregnant with my first daughter, I watched you and Kathie Lee religiously throughout the entire nine months.  I always enjoyed the fourth hour of the Today Show.  I also caught a lot of grief for having the time to set aside each day to watch it.  I didn’t care though, because I would have done anything to have had a glass of wine and kick my feet up at that point, and watching you two funny girls sip away and chat on TV was deliciously hilarious and heartwarming.  It was also as close as I was going to get to wine for a long time…

Fast forward to today where I now have two (toddler) daughters, a 9 year old step son (which I had back then as well) and a growing home business.  All of which means I never watch the fourth hour on the Today Show…I don’t even get to watch the first.  But I do follow you on Twitter and Facebook. Yesterday while scrolling through my Facebook account, I came across the Today Parents page sharing your story about Project Truly Brave, where you teamed up with Cyndi Lauper and Sara Bareilles to create an anthem for kids fighting cancer in the hopes of raising funds for pediatric cancer research. I was leaving my dentist office, but I sat in my car and cried my eyes out as I watched the video.   Today I saw the beautiful completed music video of “Truly Brave”, and I ran my tear ducts dry.  Because I have been there.

You see that daughter of mine, that I spoke of in the first paragraph, entered this world in August 2011 with a surprise for my husband and me.  She was born with Down syndrome.  Her name is Tessa–we call her Tessa Bug–and she is my warrior. Her surprises didn’t stop there. Two months after her second birthday she was also diagnosed with Acute Megakaryoblastic Leukemia, a form of AML.

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We knew she would have leukemia eventually.  For roughly eight months, she endured numerous blood draws and bone marrow biopsies.  Tessa was initially diagnosed with MDS (Myelodysplastic Syndrome).  Our doctors laid out many scenarios that would/could take place in the months to come.  In October of last year she transitioned rapidly to AML.  Nothing could prepare us to receive that news…not even knowing for months that she would eventually have cancer.

Tessa fought an extremely heroic fight.  There certainly were times when I feared and even planned for the worst.  On Tessa’s last day of chemotherapy, we celebrated gleefully in her hospital room.  Her nurses made signs, and I kissed her over a thousand times that day.  I promised her she would never have to do any of it again and that life was starting over.  That same day we learned that her latest biopsy indicated a small population of cancer cells had resisted treatment and that the road ahead was very unclear.

We completed treatment in April and started life over at home as a family.  In the two months that followed, she had two more bone marrow biopsies to see what those cells were doing.  The first one showed a slight decrease in size.  The following month showed that it had gone back up.  We waited two months to do another to give her body a much needed rest.  Finally in late July her biopsy indicated that she was finally in remission.  Her doctors were stunned and we were, too!

Tessa mom

What I learned most throughout my daughter’s treatment is that hope is the most real thing that I have ever experienced.  We had more than one reason to give up hope, yet it was the one thing that kept us going–hope.  Hope exists despite all else that says otherwise. We are all entitled to it, and not one person or nothing can take it away. And you, Hoda, are giving the gift of hope to families like mine…to children who deserve barrels full of it.  You have redefined to thousands what it truly means to be brave.

Here you are, a woman who had every reason to do something similar for breast cancer awareness (and maybe you have or will)–especially on the heals on breast cancer awareness month–yet graciously decided to use your incredible voice to stand up for children fighting cancer everywhere. I can’t help but feel humbled by your nobility. Thank you.  No really, thank you!  Because what our kids need is a voice louder than their own and someone like you on their side.  They need hope.  As a mother to a child who has had cancer, I cannot fully express my gratitude for Project Truly Brave. These kids are truly and incredibly brave.  I know that you have definitely witnessed that in your experiences with pediatric cancer patients.

To those two iconic musicians that you hand-picked to carry out your message, Sara Bareilles and Cyndi Lauper–THANK YOU, TOO!  You are right–there is something about a good song that makes me believe that anything is possible.  We listened to Sara’s (like I am on a first-name basis) song “Brave” a million times over during Tessa’s treatment.  If I couldn’t take cancer down myself for my girl, I was certainly going to stand up strong to it! That is exactly how I felt when I heard that song.  Therefore, I totally get where you are coming from with music.

last chemo

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All I really wanted to tell you was thanks, and maybe to give you a huge virtual hug.  Thank you for your beautiful crafted anthem that reminds me of a difficult and yet somehow strangely beautiful time in our lives. Thank you for honoring the strength and courage in children fighting battles twice the size of themselves.  I can hear “Truly Brave” now ringing through the halls of children’s hospitals where moms and dads and little warriors find themselves planted in battle with their new fight song pumping them full of courage…and hope.

Most of all, thank you for opening a spot in your heart and for caring so deeply.

Sincerely,

Becky Carey (and Tessa Bug, too)

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***Donate to Hoda’s amazing effort on Crowdrise!***