Today is the first day of Down Syndrome Awareness Month, a fact I would not have been aware of last October. It's only been six months since Down syndrome shot its way into my consciousness.
The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said "that would be the compassionate thing to do".
A sentiment echoed recently by author Richard Dawkins' insensitive tweet in response to a woman who expressed her "ethical dilemma" if she were to become pregnant with a baby with Down's syndrome. "Abort it and try again." he wrote, "It would be immoral to bring it into the world if you have the choice."
It's easy to make statements like this when you have less than a 1% chance of ever actually having to make that decision. When it's a live baby kicking inside of you it's a different situation.
Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn't prepared for. On the one hand, this meant that our child would have at least some degree of intellectual disability. On the other hand, it also meant that our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99% reported they were happy with their lives, 97% liked who they are, and 96% liked how they look.
I'm not sure what the statistics are for the "typical" population, but my hunch would be that the numbers would be almost reversed. Most of the people I know would not say that they are happy with their lives, or that they like who they are or how they look.
Which begs the question, is it more important for our children to be smart or for them to be happy?
Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier.
These questions sat heavy on my mind as my husband and I debated our situation. Religion makes questions like these easier. Since neither of us is religious, we were pretty much on our own.
One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house.
The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself and we began chatting. I asked her what she did and she told me that she was a woman's health consultant and used to be a midwife.
Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be okay.
She told me that she had only delivered one baby with Down syndrome when she was a midwife. She said that the love in the room when the baby was born was stronger than anything she'd ever felt before. She felt that the reason so many babies with Down syndrome had these heart "defects" was because their hearts were so big and full of love. "If love was revered as much as everything else, people with Down syndrome would be held in the highest regard." she said.
It was at that moment that I realized that I was going to keep this baby no matter what. I had already felt that amazing love she was talking about.
And why shouldn't love and happiness be held in the highest regard? What else is there?
A peace settled over me that day, and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be okay. My baby had a complete av canal defect, which meant that instead of four chambers he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me.
Unfortunately, my husband couldn't feel the love coming from the baby the way that I did. He struggled with his fears and worried his way through the entire pregnancy.
The moment our son was born it all changed. The love Benjamin brought with him burst into the room and filled my husband's heart.
It is a strange journey we've had these past few months since he's been born. With the trouble he's had breathing on his own and the heart surgery looming in his near future we live in almost constant terror of losing him.
And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we have already become Down syndrome activists.
This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there.
Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he's just like most other babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard.
When we got there I was surprised by how many people there were, and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I had imagined when the announcer called forward a young man to sing the Star Spangled Banner.
His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears, but couldn't stop myself from pressing my face into my husband's shoulder and bawling.
True love means accepting things as they are, but that is not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think that it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world.
As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins' fat, stupid face. But I don't know what the future will bring. I don't know that my son will overcome all of the prejudices against him. I don't know what level of ability or disability he might have.
All I know is that for me, I've answered the question of whether it is more important for our children to be smart or to be happy. It is more important for them to be loved. And I do love my son, whether or not he's smart or happy. And that is why I have children. To teach me that kind of love. And if Richard Dawkins thinks that's immoral that's just fine with me, because he obviously doesn't know much about love.
We have some news about our baby that we would like to share with you. Our baby has Down syndrome and a heart defect.
This was scary news for us to get, and it’s taken us awhile to process it. Fortunately we live in an area that has a lot of resources for parents like us, and we’ve been able to connect with other parents who have been through this. We still don’t know exactly what to expect, but we have a much better idea now.
In many ways our baby will be the same as most babies. It will be cute and cuddly and need lots of love and attention. It will sit up, crawl, walk, talk, go to school, read and write, learn lots of things and eventually grow up to be an adult. The differences will be that our baby will need extra time, help, and open-heart surgery at 4-6 months.
The heart defect is called an AV canal defect. This is a common defect, especially with babies that have Down syndrome. What it means is that the heart is not separated into four chambers, but is open in the center due to a missing valve. Otherwise the heart functions normally. Eventually this can cause the freshly oxygenated and depleted blood to mix, and can put more pressure on the lungs, potentially causing damage.
Thankfully there has been a surgery to fix this type of defect since the 1950’s. We have a great children’s hospital right near us in Denver with experienced surgeons that have done lots of these surgeries, and the surgery has a 98% success rate. Most likely once our baby has the surgery the heart will be repaired for life.
In addition to heart defects, there are other health problems that are common in children with Down syndrome. Whether our baby has these problems and to what degree we won’t know until we get there. Again we are lucky to live in an area with great support and resources for parents of children with Down syndrome.
At this point we do not want sympathy, but we do want love and support. You can support us by learning more about Down syndrome, staying positive and congratulatory, and recognizing that we might need extra help along the way.
Visits are encouraged! Come get to know our baby, give us a little support and Caspian the extra attention he will most likely need.
Here's a short video of Caspian explaining what Down Syndrome is to my niece Lily. He gets some of the facts slightly wrong (it is a difference between 46 and 47 chromosomes, not 36 and 37, and the soft muscle tone is called hypotonia) but otherwise he explains it beautifully, and I love the acceptance and ease with which my niece receives the news.
Here are links to some resources for you to find out more about Down syndrome and the AV Canal Defect:
A great booklet for loved ones of someone who has received a Down syndrome diagnosis, I highly recommend you take a minute to look through this, it will likely address some of the feelings and answer some of the questions you may have
Information on the AV Canal Defect
Information on the Buddy Walk, a walk to support Down syndrome This is a mile long walk that takes place all over the world to support Down syndrome awareness. Consider signing up for one near you, it would mean a lot to us.
Here are some good videos on Down syndrome:
Caution, this video might make you cry: “Dear Future Mom”
“Just Like You” - Teens with Down Syndrome and their best friends talk about what it's like
“Tim’s Place Albuquerque: Service with a Smile” - An adult with Down syndrome serves up hugs and meals, if you're in Albuquerque make sure to stop here for lunch
There are many more resources to check out, but those should get you started.
Our due date is August 14th, though the baby could easily be born at any time in August, so please don’t rush us as the due date nears, we will let everyone know when the baby is born.
We're very excited that we have been given the go ahead by the cardiologist to have a natural birth, and we've found a great option with great medical care on hand.
We will be delivering with Boulder Nurse Midwives at the Boulder Foothills Hospital Birth Center. This is one of the most progressive hospitals in the country. If the baby does need intensive care, we will simply be moved to a family suite with a special care nursery attached, allowing us to stay close while the baby receives specialized care. (Most hospitals whisk the baby away to another floor, and the parents are only allowed to visit, so we feel so lucky to have this option available to us.)
We are not finding out the gender until the baby is born, so it will be a surprise. Feel free to put your bets in now, you've got a 50-50 chance of being right.
Thanks for your support and understanding,
Taymar, Max and Caspian
I'm 30 weeks pregnant and I love it when people not only acknowledge that I'm pregnant, but marvel in the miracle of it by touching my belly and talking to the baby in there.
I have a message for the pregnant women who have expressed discomfort at people wanting to touch their bellies: GET OVER IT! You are about to have strangers sticking their hands up your vagina and you're worried about someone touching your belly? Seriously, relax. Stop ruining it for the rest of us with your petty complaints.
Saturday I arrived at a barbecue around the same time as another pregnant woman I know. We joyfully rubbed our bellies together while encouraging our babies to say hello. It was awesome! And it made me realize that because of the outspoken backlash of those few people who find having their bellies touched uncomfortable, I haven't gotten as much belly love as I would like.
I appreciate your desire to be polite, but ignoring the miracle that is going on in front of you is a sad state of affairs as well.
I know that nobody wants to be in the awkward position of assuming someone is pregnant who turns out to just be fat, but I am enormous and people are still acting surprised when I mention that I'm due in a few months. Really? You thought that was just a beer gut? Come on people, if my belly is that big and I'm *not* pregnant, we've got bigger problems here than a minor social faux pax.
I've traveled quite a bit recently and been disappointed that nobody has offered to help me as I've struggled with getting my bag up and down from the overhead compartment. This sucks. Being pregnant is so uncomfortable and the only upside is that people should be nicer to you.
The next time you see a pregnant person struggling, offer to help.
And yes, there are people who don't like to have their belly touched, it's true, but they're not the only pregnant ones out there. So if you want to touch a beautiful bulging baby in a belly, just ask, because there's also people like me, who will appreciate the attention.
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!