My Daughter With Down Syndrome Had Open-Heart Surgery

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My stomach was in knots. I was worried and scared. I did’t want my baby to hurt. I didn’t want my baby to be afraid. I looked at my precious little Savannah as I changed her diaper, as I bathed her and as I kissed her tummy to make her laugh. I could not help but think her newborn skin, flawless and new, would be forever changed after having open-heart surgery. I knew there would be a scar.

As Savannah approached her open-heart surgery I had many emotions and feelings kept inside. I stayed busy to occupy my mind. I tend to repress emotions that are overwhelming, as to not deal with them. When I came across photos of a little one after surgery, I gasped and tears fell. I thought about her chest being cut open and someone literally having her heart in their hands. I thought about her being prodded and poked. I thought of countless wires and tubes coming from her body. Then, I thought of the physical strength she would gain.

I believe God promises to never leave us. He created Savannah and made her in His image. He was aware of her heart defect before she was even conceived. God chose to use a surgical team to repair her heart. This is where my faith comes in. Trusting in God and His omnipotence is what strengthens my faith and draws me closer to Him.

 

I wanted to see my daughter Savannah healthy and to feel good and full of energy. I focused on her well being.

I trust in God; I truly do. However, I’m human. I am protective and defensive. Several moms who had been in my shoes reached out, and that means more to me than I can express. I, too, want to be a light and encouragement to others like many have been for me. I hope to be a conduit for love to others, and by sharing our story, help the next one in line.

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Who I Am Because of Clare, My Daughter With Down Syndrome

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Because of Clare, my daughter with Down syndrome:

I rock out to Disney Songs and Uptown Funk while driving her to her adult day program.

I co-lead a monthly Faith & Light group that reminds me of the importance I place on God and community.

I sometimes slow down, when I need to.

I am reminded that it’s the simple things that matter.

I know the importance of structure and routines.

I know I better follow through on my promises.

I know that sh** happens (literally and figuratively).

I have made some incredible, lifelong friends.

I worry about the future, when we can no longer care for her.

We celebrate birthdays (no matter who’s) and holidays with extra gusto.

I get to love Clare’s friends who may or may not have differing abilities.

 

I have traveled to the World Special Olympic Games and met Olympians from all over the world.

I have a child who was on the front page of the Washington Post, was in a documentary and had several TV appearances, including “Good Morning America.”

I am grateful for the medical care available to us in the U.S. that saved her life this year.

I am reminded about the importance of being present to those in your life.

I have learned, but don’t always remember, the importance of being calm when things aren’t going as you planned.

I believe that it is all God’s plan.

I have learned that some days you just have to put one foot in front of the other and somehow get through it.

I have learned there is usually a rainbow after a storm.

I am grateful the world has made such strides in accepting and including those who are different, but am sad that there are still those who shun, belittle and exclude those who are different from themselves.

I have learned that good usually prevails over bad and that life and God are good.

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My Son With Down Syndrome Is 'The Rule Breaker'

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I guess it was one of the first things we learned about you — you would break all the rules. The doctors advised us in medical terminology what would be difficult for you and what you would need to overcome medically to thrive in society.

Prenatally, doctors predicted you would be dead or stillborn due to an enlarged brain ventricle. You were born and although your left-brain ventricle is one millimeter larger than the other, you are alive and well.

Doctors predicated if you were breathing upon birth, you would need immediate surgery because you had tracheoesophageal fistula and would have a three to four month hospital stay for recovery. You only spent two days in the hospital at birth and your stomach is perfectly fine, no surgery or long term hospital stay needed for you.

After an immediate ultrasound after your birth, a radiologist report advised you were missing part of your brain. One road trip to see a specialist determined you have all the pieces of your brain and there isn’t anything to worry about.

At your 2 month echocardiogram checkup, the radiologist advised you would require open-heart surgery for a shunt, possibly two, by your 4 month check up it was established no open-heart surgery was needed.

 

Physical therapists said you would struggle with your low muscle tone in areas such as tummy time and rolling over. You’ve excelled at both and you’re not even 6 months. In fact, you seem determined to crawl more than any other baby I know.

The lactation consultant said most likely you wouldn’t be able to breastfeed, yet this is your happiest thing to do.

The standard medical documentation tells me you might not vocalize, but you’ve been doing so since you were 2 months old. Also, it stated you may have hearing problems, but your latest hearing test established your hearing is perfect. Same with your eye exams.

But alas my son, there will be adversity in your future. You will not be able to escape it, no one is. It is what makes us stronger in ways we are unable to predict. I will have to fight against my motherly instincts to try to make your life easier and without problems. And I think the only way I can do that, is if I can remember that you, my son, are “The Rule Breaker.”

So watch out world, my son has only just started his journey and broken more rules, stereotypes, several predetermined outcomes and many hearts than most of us do in a lifetime. Fair warning.

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The Day a Stranger Recognized My Son Has Down Syndrome

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The day came, the one I wondered about for quite some time, the day a stranger recognized the Down Syndrome traits in my child’s perfect little face, and she approached me.

It was like any other Costco trip before, except this time I only had two of my six children with me (this is rare). We were perusing the aisles before heading for my 11-year-old’s favorite part, the samples. As we wheeled past the cheese and crackers we paused and she caught my eye. Everyone always comments on my little one’s hair; I must say Cedar has some awesome locks. This was not unusual, but once the woman commented on his hair and made a bit of small talk about how old he was, she paused.  She just kept looking at him and I knew something was coming. Her hand lingered on his bare little foot just lighting on his big toe.

This, I might add, is one of those defining moments.  I have had them before, and I have failed. Like the time I missed a connection because I just didn’t want to talk about Down Syndrome. I have wondered, sometimes, if a stranger will catch me on a bad day and they’ll say something rude, or just ignorant.  Another blogger, Erin, at the Lucky Wells, wrote an entire post about just this thing and I read it shaking my head all too knowingly that the day would come.

A mom kissing her baby boy with Down syndrome, he is wearing a stripped red and white onsie.

The funny thing is, sometimes I don’t see Down Syndrome. I mean at certain angles in photos I see the textbook physical traits that my Cedar possesses, but overall, he’s just my sweet little babe and though I know it is a part of him, it isn’t the main thing I think about or see anymore. As a new mom of a child with Down syndrome, I sometimes wonder if people see it yet when they comment on his hair or something about him.

 

Time stood still for just a moment and when it did, I breathed and decided this could turn out to be an educational moment. But then she smiled and asked if we had chatted before. I didn’t remember ever seeing this woman before in my life so I smiled back and said I didn’t think so. She went on to tell me that she had a grandbaby just about the same age as my Cedar. Then she said, “My grandbaby is a twin, and one twin has Down Syndrome.” I was no longer tense, the ease that washed over me was likened to a wave leaving me, feeling refreshed and rejuvenated. I quickly blurted out, “My son has Down syndrome, too!” She smiled again and told me he was beautiful, it melted my heart.

So it happened, the physical traits that allow others to see that he indeed has something a little bit extra were visible to a complete stranger, but it led to the sweetest exchange. I love that this is the first experience I have had in public by a total stranger acknowledging my son’s extra chromosome. It was such a positive exchange and the woman’s eyes lit up when talking of her granddaughter. It was very special to make a connection like that.

I went home that day feeling excited, feeling like I no longer had to worry about the first time someone in public acknowledged my son has Down syndrome, because it had already happened and it was perfect. No ignorant comments this day, no grace-filled smile as I explained what Down syndrome is. Nope, just a sweet exchange between two women who both love someone with a little something extra.

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This Land Was Made for My Son With a Disability, Too

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The Fourth of July is a time of reflection on our nation’s past and present. As a mom to a son with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Troy, a little boy with Down syndrome holding an American flag.
Troy, a little boy with Down syndrome holding an American flag.

When Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence, he probably wasn’t thinking of people like my son Troy, who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son, Troy, was born life expectancy had more than doubled to 60 years old. Many laws contributed to this amazing feat, one of which was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

Troy (left) with his twin, Hunter.
Troy (left) with his twin, Hunter.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash-strapped states would likely cut Community and Home Based programs first.

Troy playing T-ball.
Troy playing T-ball.

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neurotypical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood, Medicaid provides job training, transportation, and independent living supports through local Dayton programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121, remind them how far we’ve come as a nation in the treatment of our most vulnerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.

Save Medicaid - No Caps, no Cuts!

 

Follow our journey of advocacy and inclusion at Inclusion Evolution.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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'The Peanut Butter Falcon' Stars Zachary Gottsagen, an Actor With Down Syndrome

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A new adventure movie is currently in production and it stars Zachary Gottsagen, an actor living with Down syndrome.

“The Peanut Butter Falcon” tells the story of a young man with Down syndrome named Zak, who runs away from a nursing home to pursue his dreams of becoming a professional wrestler. Tyler, a small-time outlaw, played by Shia LaBeouf, becomes Zak’s coach and ally as they make their way to a school for wrestlers. The film will also star Dakota Johnson and Bruce Dern.

The role of Zak was inspired by Gottsagen, who met the film’s writers, Tyler Nilson and Michael Schwartz, while they were working at a non-profit arts organization. Gottsagen previously appeared in “Bulletproof,” a 2012 short film about saving a family business, as well as “Becoming Bulletproof,” a 2014 documentary about the film and the importance of casting actors with disabilities.

“I work and make films with Down syndrome actors. Many of them struggle to maintain a regular life, not because of their disabilities, but because of others disbelief in their talents,” Nilson said in a statement, adding:

I have had many friends with Downs placed in old age homes because of lack of proper care. I know how beautiful freedom is, and I know what it feels like to be locked away as well. I am grateful I know that freedom in the outdoors and my heart aches for my friends with Down syndrome who touch only linoleum floors and plastic all day. I am not making this film for them. However, I am making it for the people who believe it is ok to dismiss them and lock them away. Prejudice towards Down syndrome is costing a lot of young people good years of their lives. Everyone should know what it feels like to go a little wild, even if you’ve got an extra copy of chromosome 21.

“The Peanut Butter Falcon” is scheduled for release in 2017.

The Mighty has reached out to Lucky Treehouse for a comment and has yet to hear back.

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