You are not broken, sweetheart.
At least, not in any way that really matters. Not like people who are spiteful or small-minded or utterly self-absorbed. I hope the day never comes that you suspect “special” is a code word for defective. Or that having “needs” is a shameful weakness.
There are people that think this way. Ignorant people who simply don’t understand. Cruel, stupid people who simply don’t care. Less than there once was, but still… too many people.
Part of me wants to take a swipe at anyone who suggests you need fixing. To crouch in front of you and bare my teeth and unleash my primal maternal instinct on them all. Because the possibility, the mere hint of the idea that you are less than anyone else is repugnant.
You are different, sweetheart.
This is the truth. You work harder than anyone else around you. So many skills and activities which other people take for granted are a real struggle. Your health has to be monitored closely as you contend with a number of medical problems and risk factors. It takes longer for your brain to process the words you hear and the memories you are trying to recall. Your best efforts don’t always make the words clear enough for us to understand. You are often frustrated and overwhelmed.
I want to fix that for you. Not because you are less; because you deserve more.
You are so precious, sweetheart.
Your sense of humor and your kindness and your stubborn will come to mind. And so many other wonderful qualities too numerous to describe here. There is no one in all the world like you. The world may look at you and see Down syndrome. I look at you and see… you.
Down syndrome is part of your story. Maybe you wouldn’t be quite so exceptional if you didn’t have all these struggles. This reality has significant challenges, but there are gifts also. One extra chromosome has not been a tragedy for you.
You are so precious, exactly the way you are, sweetheart.
So when I was asked to speak on a radio talk show this week (CBC Radio – The Current) about breakthroughs in genetic research (Researchers turn off Down syndrome genes), it was harder than I expected.
Of course when the news agencies use provocative words like “eradicate Down Syndrome” it conjures up thoughts of Nazis and final solutions, not dedicated scientists striving to make the world better for you. Of course I have reservations about safety and risk factors. Of course I hope that the professionals involved will continue to be respectful of our children’s needs, and strengths. Of course I wonder if this is yet another false hope alongside the dubious therapies and vitamin regimes often peddled to desperate families.
But after a deep breath and a closer look I realize that it is incredibly good news.
I’m thrilled about the possibilities the future might hold. Targeted therapies which ameliorate the harmful, even life-threatening effects of Trisomy 21 are more possible than ever. Research may not translate into reality for many, many years, but it isn’t overly idealistic for me to hope that early onset dementia (which affects 60% of adults with Down syndrome by age 60) will not be a problem for you. After all, they still have 52 years to figure it out.
So why the difficulty? Why a panel to express a range of opinions? What could possibly be controversial about this?
We all agreed, from Dr. Jeanne Lawrence (the head researcher who now has a HUGE fan in me), to the show’s host, to the rest of the panel, that anything which leads to longer, healthier lives for people with Down syndrome is a wonderful thing.
But it always comes back to the question:
what if we could “fix” Down Syndrome entirely?
(We can’t, by the way; the geneticist made it very clear that while the research makes the treatment of symptoms of Down syndrome a possibility EVENTUALLY, eliminating it entirely via gene therapy is extremely implausible.)
Nevertheless, this is where controversy finds the most traction. Is Down syndrome a problem to be fixed? Or is it a part of our genetic diversity to be embraced?
There was a mother on the other side of the country, and the other side of the argument presumably, who was on the air with me. We don’t disagree about much. I appreciate her viewpoint and share her enthusiasm for the unique Down syndrome culture that has emerged in recent years. It makes me happy to know that you’re a part of it.
People with Down syndrome are worth celebrating. They are a remarkable group of unique people who share a common struggle. Some lead meaningful, rewarding lives. Some don’t. Some are kind, affectionate and openhearted. Some aren’t. Some are funny. Some are serious. Some are sociable. Some are shy.
None are pitiable creatures to be patronized, nor angels to be revered. First and foremost, they are individuals who each have their own story. They are not extraordinary because they have Down syndrome, but because they overcome and thrive and contribute so much to the world. The Down syndrome community is inspiring.
But Down syndrome itself is not something I celebrate. As grateful as I am for the many positive aspects of our experience, it is a medical condition that needs treatment, just like diabetes or asthma. So when asked if I would eliminate Down syndrome if I could, my answer is yes.
I would choose this for you, sweetheart.
I am so proud of all the challenges you overcome almost daily, and of the person you’re becoming because of it. But I would bulldoze every one of those obstacles if it were in my power. Life is hard enough.
There was a time when a child with Down syndrome was considered a hopeless case, when parents were encouraged to stash them away in an institution and try again. There was a time when children with Down syndrome wasted away and died due to a number of undiagnosed medical conditions. There was a time when children with Down syndrome were not expected to learn or participate or reach any level of independence.
We’ve come a long way since then. I can only be grateful for the research that has brought us this far; not just the education and social support, but medical science also. Now minor heart defects and thyroid deficiencies and a host of other problems are detected and treated as a matter of course. Maybe someday, speech delays and low muscle tone and leukemia will be dealt with as efficiently. And maybe someday, Down syndrome itself will be little more than a passing mention in a medical history.
I want that. For you and for the children with Down syndrome who haven’t yet been born. But it was hard for me to express that, both on the radio and here in the blog. Because I don’t want you to hear me wrong.
You are not broken, sweetheart, not in any way that really matters.
You are different, sweetheart, and life may never be easy for you.
You are so precious, sweetheart, exactly the way you are.
So here’s us, grateful for what is, and grateful for what could be, just as long as it involves many, many years with our sweet girl!
Beautiful photos by Taliah Leigh Photography
- Breakthrough may one day prevent Down syndrome (newsfixnow.com)
- Breakthough! Can Down Syndrome be turned off? (wnd.com)
- Scientists take step in “fixing” Down Syndrome (reviveuhealthblog.wordpress.com)
August 1st, 2013 at 6:34 am
This is the best thing you’ve ever written.
August 1st, 2013 at 12:17 pm
Thanks, coming from a great writer like you, that really means a lot!
August 1st, 2013 at 8:52 am
Beautiful! The little lady in the photo looks like she is full of joy. Some people search for joy their entire lifetime and never find it.
August 1st, 2013 at 12:18 pm
Thank you! She really is a sweetheart and brings us so much joy!
August 1st, 2013 at 11:34 am
Thank you for expressing these thoughts so well! If there was something to get rid of Alex’s stomach problems or help him communicate better or enable him to live on his own-We would do it for his sake. Alex has enriched our lives just the way he is-but he is not our ‘pet’, he is a person who desires to live as independently as he can.
August 1st, 2013 at 12:22 pm
Exactly! Independence and individuality are more important than all the “cute” stereotypes that make DS seem like no big deal. I’m so grateful for how far we’ve come already. I hope someday B and A won’t have to worry about all these health problems. Or at least in the next few generations.
August 1st, 2013 at 6:03 pm
Well said Christy, well done.
These children are a gift from God, but the world is not yet ready to accept a child that is different, and sadly enough, we also see this attitude in the “Body of Christ” If you were set apart from the rest, then you were on your own. I found that out when I was very small.
August 1st, 2013 at 11:02 pm
[…] researchers, with Renee Forrestall, and with Christie Hoos, a parent of a Down syndrome child whose views differ from Forrestall’s. By themselves, these interviews would have made a […]
September 7th, 2013 at 12:02 am
all the time i used to read smaller articles or reviews which as well clear their
motive, and that is also happening with this piece of writing which
I am reading here.
December 30th, 2013 at 6:00 am
[…] There are people that think this way. Ignorant people who simply don’t understand. Cruel, stupid people who simply don’t care… Read More. […]
January 23rd, 2014 at 6:07 am
I am really enjoying the theme/design of your weblog.
Do you ever run into any web browser compatibility issues?
A small number of my blog audience have complained about my site not operating
correctly in Explorer but looks great in Safari.
Do you have any tips to help fix this problem?
September 13th, 2014 at 11:19 am
You actually make it seem so easy with your presentation but I find
this matter to be actually something which I think I would never understand.
It seems too complex and extremely broad for me.
I’m looking forward for your next post, I will try to get the hang of it!
September 19th, 2014 at 1:19 pm
Heya i’m for the first time here. I came across this board and I find It truly useful & it helped me out a lot.
I hope to give something back and aid others like you helped me.
September 27th, 2014 at 6:21 pm
An impressive share! I’ve just forwarded this onto a co-worker who was conducting a
little homework on this. And he in fact ordered me breakfast due
to the fact that I stumbled upon it for him… lol.
So let me reword this…. Thank YOU for the meal!! But yeah, thanx for spending the time to talk about this subject here on your internet site.
September 28th, 2014 at 4:04 am
What’s up, after reading this amazing piece of writing i am as well glad to share my experience here with friends.
September 28th, 2014 at 6:42 pm
magnificent submit, very informative. I’m wondering why the other experts
of this sector do not understand this. You should proceed your writing.
I’m confident, you’ve a great readers’ base already!
October 3rd, 2014 at 8:46 pm
October 1st, 2014 at 1:26 pm
Touche. Outstanding arguments. Keep up the good work.
October 3rd, 2014 at 8:45 pm
October 21st, 2014 at 10:05 am
Hi there everyone, it’s my first visit at this website, and paragraph is actually fruitful for me,
keep up posting these posts.
November 7th, 2014 at 8:16 am
Amazing blog! Is your theme custom made or did you
download it from somewhere? A design like
yours with a few simple tweeks would really make my blog stand out.
Please let me know where you got your theme. Thanks
June 11th, 2015 at 8:02 am
Hi, I recently spotted a picture on some web pages,
and here https://soheresus.com/2013/08/01/does-down-syndrome-need-fixing/
it seems to be a photo made by Thalia Leigh – now I would like to know if you are informed that the pictures offered here
and is in use here
http://www.genoma.com/ (scroll down) for marketing purposes.
And – if possible – I would like to know if this picture is free from your side (copyright) as parents for advertising purposes, if this is your daughter?
Thanks for an answer, I hope I didn’t bother you, rgds, Chris
June 11th, 2015 at 4:46 pm
Absolutely not! Thank you for bringing this to our attention Chris. The idea that people would take advantage of our daughter like this, particularly a corporation like Genoma doing prenatal testing, is horrifying. Heads will roll!