Today is World Down Syndrome Day and we are Rocking our Socks!!
Sitting here trying to write an intro for you is failing me . . . trying to put into words a glimpse of who I am and where I am coming from and they are just not coming together. Not because I don’t know, not because I’m not feeling it, but because I have one of the sweetest little girl trying to singing Old MacDonald, at the top of her lungs, and absolutely insisting that I do the animal noises. As a pastor’s wife and mother to five absolutely wonderful children, including one extra special kid with two extra chromosomes times can get busy and little moments like these can pass all too quickly, so you stop and you sing and make the best animal noises you can for Old MacDonald with this sweet little girl. With a love to travel we have lived and seen some pretty cool places, meeting amazing people along the way. I have passion for music that I am happy to see living out with all of our kids. I am a special needs advocate and a perfectionist who is absolutely perfect at not being perfect.
It makes me so very sad to hear that people cannot see the value of a life with Down Syndrome. Each person, no matter if they have 46 Chromosomes or not, is unique, and no one thing will define them…especially not something as simplistic as a prenatal blood test. Don’t get me wrong–I understand the value of a prenatal diagnosis. I am aware of the potential benefits of knowing early on that your child will have Down Syndrome. The opportunity to prepare for any potential health concerns can be helpful, and even life-saving. But the sad truth is that the majority of doctors only tell you the scary stuff, the sad stuff, and the long list of reasons why “its okay to terminate” when that diagnosis comes in. They don’t give any hope.
When I found myself pregnant at 35 (surprise!!!), 12 years after my last pregnancy, I opted not to have any testing. My Noelle was born with two chromosomal abnormalities. She has Trisomy 21 (Down Syndrome) AND she has Trisomy 18 (Edward Syndrome). The statistics say that 50% of babies with T21 will be born with serious heart conditions, and 90% of babies with T18 will have the same issue along with a horrifying list of other birth defects. If I had learned these things while I was pregnant I would have spent months and months preparing to lose my baby. If I had been given her diagnosis prenatally, it would not have changed my mind. Noelle was never a choice–she was only ever a gift. A blessing. I am so thankful that I was not given a prenatal diagnosis. Noelle was born with a healthy heart. She was born with no other serious medical issues. She is smart (she knows all her ABCs and can count to 20!), and kind, and feisty. When I look at my beautiful child, and hear her say she loves me, or hear her sing Twinkle Twinkle Little star at the top of her lungs (because music runs in our WHOLE family, even the extra chromosomes) I cannot imagine why anyone would possibly want a world without people like Noelle.
I am not saying that there aren’t struggles, and I am certainly not saying that it is not a bit scary sometimes, but it is a special kind of wonderful that I cannot even begin to describe. You take NOTHING for granted. It is like God just stops the entire world for a second whenever a new skill is mastered, whenever a new word is said. Noelle has only been here for three years, and she has already taught me more than I learned in all 35 before she arrived. It’s okay if you don’t know anything about Down Syndrome. It’s okay if you have questions. PLEASE ask me. I just so badly want you all to think about the value of Noelle’s life. Because when I hear people talk about the importance of testing, and the importance of giving women the opportunity to terminate if the baby has T21, what I am hearing is that babies like Noelle are “less than”, or “too much work” or not “perfect enough”. I know they are wrong, but it still hurts my heart, because what they are saying indirectly is that if someone is pregnant with a child like my daughter, they should have the option to opt out.
World Down Syndrome Day is not something I ever celebrated before Noelle was born, but now our family and friends embrace this opportunity to celebrate the absolute gift that Down Syndrome has given to us. We have learned kindness, patience, tolerance, and a love in ways that we didn’t know even existed.
I hope that you too will celebrate with us & get a chance to learn a love like this.
Special thanks to my beautiful cousin Tara for coming out here today and sharing a bit of her story. I am always inspired, hoping you will be as well. To find out more please check out the Waterloo Regional Down Syndrome Society where you can still get your 2017 calendars done by One For The Wall Photography!! ( I have one & they are beautiful!)
A beautiful post that brought tears to my eyes and a swelling of my heart.
Beautifully said Tara. You & Perry are such a super couple with wonderful children that God sure knew what He was doing when He blessed you with Noelle. She couldn’t ask for better parents & family and the love you all have for her is so heartwarming and shows in every photo I have seen. You are all so blessed and the perfect example of what a kind and loving family should be. The world would be a much better place with more fine examples of truly good human beings like yourselves. With the greatest respect and love. Bernadette