March 21st is coming up which is a big day in the world of Down syndrome. The numbers 3-21 take on a different meaning when you have a child with Down syndrome, also known as Trisomy 21.
Today the site "A Day in the Life of Down syndrome" is looking for day in the life stories. I know how important this is because when we got our prenatal diagnosis it was other parents stories that helped me to have the courage and faith to continue with the pregnancy.
This was especially helpful for me because the way that our diagnosis was delivered was incredibly negative. Having access to another perspective was key to our making the best decision for our family.
To get an idea of how our diagnosis was delivered, I would like you to imagine for a moment that you are pregnant and you've come in for an ultrasound.
The ultrasound tech can't tell you anything, so you wait for the obstetrician. She comes in with a serious look on her face.
"I'm sorry to tell you, but it is highly likely that you're having a boy. We could do an amniocentesis to find out for sure, but given the results of your blood test and this ultrasound, I'm 99.9% sure that you're having a boy."
She goes on to say, "Boys have a higher risk of cognitive and behavioral problems like autism and ADHD, as well as a higher incidence of serious health problems like cancer and diseases of the heart, lungs and nervous system. They also have a lower life expectancy. I can't tell you how severe your baby will suffer from being a boy, but these are the statistics." She goes on to tell you that in the state of Colorado you have two weeks to legally terminate the pregnancy.
Now these statistics are true, boys do have a higher rate of cognitive, behavioral and health problems than girls, and women tend to live much longer than men, but if this was the way parents were informed about their child's simple chromosomal difference, there would be a lot fewer boys in the world.
Replace the word "boy" with the word "baby with Down syndrome", and you have a pretty good idea of how we were informed of our diagnosis.
It is no wonder that so many parents who receive a prenatal diagnosis of Down syndrome choose to terminate. The rates are between 60-90% depending on country and reporting agency. This is heartbreaking when you consider that the differences between people who have Down syndrome and those that don't are no greater than the differences between girls and boys.
A few weeks ago a post circulated of one such story, a woman who ended her much wanted pregnancy after receiving a diagnosis of Down syndrome.
Reading her story made me so grateful to all of the parents who shared their stories of the absolute joy and delight they experience every day raising their children with Down syndrome. It was reading these stories that meant the difference between her story and my own.
So this is why I've decided to participate in the Day in the Life of a person with Down syndrome. You can find my Day in the Life post here, along with many others, or just continue reading it here:
My story is very similar to that of most parents of young babies, a combination of exhaustion and joy.
Nearly every day Benny wakes up with an enormous smile. His smile lights his entire face up, and fills the room with joy.
This morning was not one of those days. Benny is seven months old, and this morning he had a wet diaper and a stuffy nose. My husband took him into the living room so I could sleep in for a few more hours. (And yes, I do know how lucky I am)
After my husband left for work and returned Benny to me I nursed and cuddled with him until the handyman arrived and rang the doorbell. My older son, home with strep throat, jumped into the room with a baseball bat to defend our home from the intruder.
After talking him into putting the bat aside, I answered the door and set Benny down on his play-mat in the living room so that I could talk to the handyman.
When I returned he had rolled over onto his stomach and was happily scooting around on his belly like a lizard.
He is always quite proud of himself when he manages to get anywhere like this. Getting to this point has taken some hard work, and we are pretty proud of him too.
I picked him up and sat down with a few books. The first book had little flaps hiding various body parts like toes under boots. Benny is still getting the hang of using his hands, but he was able to open and shut a few flaps, possibly even on purpose.
Next we read a book about bears. We are teaching Benny to sign, so I practiced all the signs I know as I read the book to him.
Later on I sat him in his high chair and fed him some smooshed up peas and avocado. It was his first time tasting peas and he was a fan.
Eventually he had a nap while I played with my older son who had way too much energy for a sick 11 year old.
Juggling both boys was tiring, and by the end of the day I was grateful to have the chance to sit down and write this post.
It's true that Benny is different than his brother was as a baby. Some of that is due to his Down syndrome, but the majority of the differences I notice are because Benny has a much sunnier disposition.
Despite Down syndrome and undergoing heart surgery at four months, Benny is pretty close to on par with his typical peers. This is largely in part to Early Intervention services that we've been receiving since he was three weeks old. Every week his Occupational Therapist, Sara, comes and works with him.
He adores her, and works hard to impress her. While she is working with him she is also teaching us what to work on in the week between her visits.
When he was a newborn she showed us how to hold his limbs close to his body, and help his head rest in a midline position. This helped combat his hypotonia, also known as low muscle tone. Each week built on another skill that we had practiced the last week, until it all fit together and suddenly he was rolling over, sitting up, reaching for toys...doing all the hard work of babyhood just like other babies his age.
Soon we will be meeting with a speech therapist. I am looking forward to it. Even though he is still in the babbling stage, after seeing the power of working with an Occupational Therapist very early on, I am eager to get as much help with speech as possible.
In addition to these services, I am constantly monitoring the internet for new ways to help Benny. There is so much new research happening, it's really exciting. Already the life expectancy of people with Down syndrome has gone from 11 years to 60, and every day I hear stories of the amazing things adults with Down syndrome are accomplishing now. With modern medicine and our improved understanding of the condition, this is only going to get better.
I've found a great deal of research that indicates specific vitamins and supplements help with trouble areas common to Down syndrome. I started taking some of these prenatally and continue to take them now while I'm still breastfeeding. In addition we are also working with a naturopathic doctor who specializes in Down syndrome. She looked at Benny's thyroid levels and prescribed appropriate medication to help remediate some issues that had come up.
I believe that staying on top of this has helped Benny greatly. And it's not much more than I did with my older son. I enjoy researching and have always wanted to do everything I can as a parent. The biggest difference with Benny is not the therapy or the supplements, it's that I have more support.
And not just support from Early Intervention - the Down syndrome community is amazing. I have yet to meet a parent of a child with Down syndrome that is not an inherently good person. And in talking to other parents it seems that it is almost always the child with Down syndrome that is the easier child.
Yesterday a friend of mine stopped by with her two little sons who had fallen asleep in the car. The weather was beautiful so we drug out two lawn chairs and sat next to her car in my front yard. Benny played with toys on a blanket in the grass and we chatted about various things. Eventually the conversation turned to how funny it is that Down syndrome has turned out to be no big deal.
I am still early on in my journey, but I can tell you that so far I am very, very happy. My husband and I often spend ridiculous amounts of time just enjoying how wonderful our baby is. He delights us with his loving energy that radiates out of him. It is almost impossible to be in a bad mood with Benny in the room.
I know from experience that not all babies are like this. My older son was a lovely baby, but he was not the positive ray of sunshine that Benny is.
I know that we will continue to have our challenges, just like all parents do. I am sure there may be times that I curse that extra chromosome, but I will never regret my boy that has it. He is the sunlight that illuminates our days, and I cannot imagine life without him.
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!