I’ve read stories about children with Down syndrome landing modeling contracts. I watch individuals with Down syndrome on the screen in acting roles. At conferences, I listen to adults with Down syndrome give speeches about their lives.

These are good stories. They change people’s perspectives on Down syndrome and help fight stereotypes. This matters to me since I have a 9-year-old daughter with Down syndrome.

But then there’s a part of me that gets frustrated with these messages embraced by the Down syndrome community and the media. Yes, these individuals have certainly overcome obstacles and should be celebrated. But what about my daughter and the countless other children like her? Do we only want to put the extra-special, talented individuals with Down syndrome front and center?

I know there may be unborn babies’ lives at stake when trying to give parents hope. I know there may be many in the public with no knowledge of Down syndrome who need to see there are people with Down syndrome who lead productive and extraordinary lives. But sometimes I feel like I should hide in the corner of the room with my child when it comes to being an “example” of Down syndrome for others.

Jaycee has very limited speech; she’s incapable of standing before a crowd and reciting even one sentence, let alone an entire speech. Jaycee will seldom look at me when I take a picture of her and will almost always have her head tilted to one side. Jaycee placed fourth in the softball throw at the Special Olympics state meet, but there were only four competitors. Jaycee’s favorite thing to do in a store is to start an impromptu race with me. Oh the joy of sprinting past bananas and wondering if your abandoned cart and purse will be there when you get back.

Still, the love I have for my daughter is beyond words. Like any parent, I have my times of frustration, but we overcome them together. She doesn’t have to do anything to earn my love and respect. Jaycee is an important person because she is a person.

Too many times, this world measures success by one’s education, job, marital status, sports achievements and unique abilities. Those of us with children with a developmental diagnosis are often screaming that there’s more to life than this, but our screams manage to get the attention of only a few.

Support comes from all directions celebrating those with Down syndrome with extra-special talents who seem to meet the world’s view of success. These people have achieved something special indeed. With all the celebrating, it appears for the moment that only those who excel with a diagnosis really matter.

Again, I must ask the question. What about people like my daughter? Are we ever going to get to the place in society when the lives of all people with disabilities matter?

I for one am picking up Jaycee and leaving that corner we’ve been hiding in for too long. I’m not sure why I fell into the trap of believing that she was only worthy of recognition when she did something extra special. She’s worthy without doing anything at all.

I believe we are the example people need to see and hear. Our family and extended family have embraced Jaycee. We fervently pray for her to live when she’s sick in the hospital. None of us can imagine life without her. Jaycee gives our family reasons to laugh, smile and feel loved. That is her extra-special ability.

Follow this journey on A Special Purposed Life.


Dear Target Checkout Clerk,

You probably don’t remember me. I was in your line not long ago. I’m the customer who quietly asked you this: “Would it be OK if I hold the soap while you scan it, and then put it in the bag myself?” An unusual request, I know. But when I nervously explained I have obsessive compulsive disorder, and that sometimes shopping is hard for me, you didn’t miss a beat. There was no look of condemnation, offense or even pity (I’ve been met with all three at one time or another) – just an understanding smile and a readiness to help.

You didn’t know my story. You didn’t know I’ve lived with OCD for almost 20 years – that it started with a doorknob freshman year of college and slowly spread to everything that matters to me. You didn’t know I’ve been in specialized therapy for almost a year, learning how to manage this chronic and insidious disorder; and that even as I fight to get better, there are still tough days, like today, when OCD gets its way.

You didn’t know I went to your store that day to get new hand soap because my other hand soap didn’t feel right when I washed my hands. You didn’t know just being able to buy soap from the store is an achievement. You didn’t know the crushing sense of responsibility I felt as I carefully inspected countless bottles of soap, desperately searching for the right one to bring home. And how could you have known as I approached the checkout area, exhausted, I anxiously scanned the lanes for cashiers who looked clean, and prayed to God they would also be kind? Because I know by now one does not beget the other.

You didn’t know any of this when you checked me out of your store that sunny, late summer afternoon. But it was so clear to me you know what it means to be human. Because while nothing you did for me was part of your normal routine, you never made me feel abnormal. Instead, you happily scanned my soap as I held it, and then gently opened a plastic bag so I could put it inside. It had been a rough afternoon, but my heart was near full.

Comedian Maria Bamford has said, “People get really irritated by mental illness.” Thank you for not being irritated. Thank you for treating me like a person instead of a problem.

I’ll admit at the time I was relieved there was no one behind me to witness our exchange. But now I wish there had been. Because while more people need to know what it looks like to have OCD, even more need to know what it looks like to be kind.

October is Down Syndrome Awareness Month, and all across the country there are large organized walks to raise awareness and funds. In my home state of Massachusetts, the largest walk draws thousands around a local lake, and on the best years, the weather is warm and sunny, against a backdrop of New England autumn leaves — just like it was yesterday.

I know this because I’ve seen the photos. Dozens of friends have posted photos of their families to celebrate the day and capture the fun they’ve had connecting with the community. It can be especially encouraging to new families still unsure of where they’ve landed and how they move forward.

The photos, ironically, make me sad — because although this is a family event, I didn’t marry that guy. I didn’t marry the joiner, the guy who loves a good conversation, the man who has rallied around the family’s challenges in a public way, who can walk among the families in our Down syndrome community and be recognized. I married the guy who has kept putting one foot in front of the other, steady as he goes, not stepping off the course of traditional parenting. I’ve participated in hundreds of Down syndrome events, compared to his half-dozen. And those he attended for my sake.

This has made the journey with Down syndrome a bit lonelier for me. Although I’m wise enough to know I have no idea what’s going on behind those beautiful family photos at events like the Buddy Walk, my heart wishes for the entire family that’s rallied together, the one that can encourage new moms and new dads to say, “It’s all right, you got this.”

When my son, Davis, was born with Down syndrome, one of the most frightening numbers I heard — perhaps whispered to me — was the high number of divorce rates for families who have children with special needs. Among all of my other worries at the time — Davis was very sick — was that this thing called Down syndrome could ruin my marriage, that it caused divorces.

Now I realize that Down syndrome does not cause divorce. Marriage is in the best of circumstances a delicate balance. It’s not two individuals joined on a single journey. It’s two individuals who can walk side by side on their unique journeys. My journey with Down syndrome has been social — I need my community. My husband’s journey with Down syndrome is something different. You’d have to ask him about it to understand what it means to him.

So on we go. I’ll try to remember as I look at these family photos that every family is different. For as many families who attended the Buddy Walk yesterday, there are others not there — for whom Down syndrome is not a single rally cry, but different marches within the family in response to a single drum beat. That’s not a bad thing; it’s just hard to photograph.

Lead photo source: Thinkstock Images

Sorry to get your hopes up, but mental health care reform was not given its own question during Tuesday night’s Democratic Presidential debate. Mental health was mentioned once, in a context that will make some advocates cringe.

When asked about his stance on gun control, candidate Bernie Sanders gave a quick shout out to mental health reform:

Also I believe, and I’ve fought for, to understand that there are thousands of people in this country today who are suicidal, who are homicidal, but can’t get the healthcare that they need, the mental healthcare, because they don’t have insurance or they’re too poor. I believe that everybody in this country who has a mental crisis has got to get mental health counseling immediately.

Although Bernie’s response was just a tip-of-the-iceberg statement about everything we could be talking about mental health-wise, reactions to his comment varied.

Some seemed disappointed that Sanders brought up mental health in the context of gun control.

Some praised Sanders for bringing up the issue at all:

Others were just disappointed in general:

Clearly the conversation isn’t over.

What do you think? What mental health issues do you wish were discussed in the presidential debates?

Does it get easier?

I have been asked that on a few occasions.

Does it get easier after my son, Ethan, was diagnosed with Hunter syndrome? I figure that’s what you really meant.

The short answer is…I don’t know.

I remember the day Ethan was diagnosed like it was yesterday. The difference is I can talk about it now. Back then, I couldn’t.

I cried and screamed and told the doctor he was wrong. My child was not fighting a losing battle.

The doctor handed me tissues and repeated to me, “There is no cure, Geraldine. I am so very sorry. This is a fatal condition. Go home and love your son. Love him for the time you have him.”

Does that get easier?

I still don’t know.

I am unsure if I deal with Ethan’s diagnosis in a healthy way. How can I?

I try not to think about that day, but every now and then, like today, it pops into my head. I write about it as a release. I used to cry instead. Does that mean it’s gotten easier? I don’t know.


I see Ethan and his diagnosis as two separate identities. Ethan is my son, my beautiful, smiling little man, and his diagnosis is the other part. It’s the part that rears its head up and forces me to see it, to acknowledge it.

When Ethan forgets simple words or simple tasks, I see Hunter syndrome.

When Ethan has mobility issues, breathing issues, eating issues and sleep issues, I see Hunter syndrome.

I deal with it by doing what I have to. I call the specialist, go to the children’s hospital, arrange emergency appointments. I get through it.

I stare at Hunter syndrome, and it gets my full attention.

Once my boy is stable again, I ignore Hunter syndrome. I’m not sure if that’s “healthy,” but that’s how I get through it minute by minute and hour by hour.

I lock Hunter syndrome away and what it will do to Ethan, and then I swallow that key until I have to open it again.

I can now talk openly about the syndrome without crying. I see it as a separate identity. I don’t picture my Ethan when I answer your questions.

So to answer that question, “Does it get easier?”

I still don’t know.

Follow this journey on geraldinerenton.com and on Facebook at It’s Me, Ethan.

The Internet’s “most hated man” could now be in even more hot water.

Martin Shkreli, CEO of Turing Pharmaceuticals, came under fire from outraged social media users last month after his company raised the price of a life-saving drug, Daraprim, by more than 5,000 percent practically over night. The increase took the drug, which is used to treat AIDS and cancer patients, from $13.50 per tablet to $750.

In response to the avalanche of outrage, Shkreli announced on Sept. 22 that he would lower the cost of the medication, NBC reported. He never specified what the new cost would be and has yet to lower it.

Now, Shkreli may be in trouble for another questionable practice. The New York attorney general’s office is investigating him for intentionally restricting the distribution of Daraprim, WGAL News reported.

New York Attorney General Eric Schneiderman is looking into whether Turing restricted distribution of the drug specifically to keep generic drug manufacturers from getting the samples they need to create their own version, which would potentially affect Shkreli’s ability to maintain such high prices for Daraprim.

Schneiderman’s office sent a letter to Shkreli informing him of the probe and stating that he is required to retain all documents that could be relevant to the investigation.

While competition might ordinarily be expected to deter such a massive price increase, it appears that Turing may have taken steps to prevent that competition from arising,” said the letter, a copy of which was obtained by The New York Times.

The company is currently not permitting Daraprim to be sold in retail pharmacies, opting to instead distribute through “a small number of specialty pharmacies,” according to the letter.

Turing’s actions may be restraining competition unlawfully, and have the potential to greatly impede access to a drug that is critical for the public health,” Eric Stock, the antitrust bureau chief for the attorney general, told the New York Times.

Turing did not respond to the Times’s request for comment, but it released a statement Tuesday, Oct. 13, saying the company’s goal is “to ensure that every patient who needs Daraprim has ready and affordable access to [Daraprim],” WGAL News reported.

h/t The Daily Dot

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.