Over the past two years, I’ve met a number of people with Down syndrome. Some of them have been adults older than I am, some young adults, some teens, some children, and in almost every occasion I’ve met one or more members of their family. If you listen to the naysayers about Down syndrome, they’ll say that people like me are living in a fantasy world – that I won’t be so happy to have Nathan when he’s an adult and I’m still taking care of him (which incorrectly presupposes he won’t be independent, but I digress…)
But is it true?
I won’t know for sure until Nathan grows up, but based on my interactions with family members of adults with Down syndrome, I’d say it’s a resounding NO. Our interaction with Noah last week in Florida is a perfect example. In a place like Walt Disney World on a summer afternoon, you’ll see hundreds of families in various stages of vacation stress – kids melting down, mothers looking harried, dads who seem to be just trying to get through the day. Noah’s family was different. They were happy, relaxed, and joyful. In between smiling at Nathan, they smiled at Noah, but it wasn’t an ordinary smile – it was filled with not just affection, but also pride.
And it’s the same story every time we meet a T21 family.
Last year, Dr. Brian Skotko published the results of a survey of mothers, fathers, brothers, sisters and people with Down syndrome, and despite the overwhelmingly negative press that Down syndrome receives, the responses to the survey were overwhelmingly positive. Siblings said that they were better people because of the experience and expressed pride in their sibling with Down syndrome, and parents felt that their outlook on life was more positive because of their child with Down syndrome. It’s the same story that I’ve witnessed over and and over again.
A reader tipped me off to the recent article by Marie Myung-Ok Lee, “What My Son’s Disabilities Taught Me About ‘Having It All’“, and if you haven’t read it, you should. As a woman in her 40s, like me, she’s been inundated with messages since she was a little girl about how we women can now “have it all”. We Gen-Xers were the first generation to truly have the option to be successful executives and mothers without overt discrimination. She writes:
When I look at friends and acquaintances, many with perfectly beautiful children and wonderful lives, and see how desperately unhappy or stressed they are about balancing work and family, I think to myself that the solution to many problems is deceptively obvious. We are chasing the wrong things, asking ourselves the wrong questions. It is not, “Can we have it all?” — with “all” being some kind of undefined marker that shall forever be moved upwards out of reach just a little bit with each new blessing. We should ask instead, “Do we have enough?”
Her words resonated with me, because although I’m no longer a work-outside-the-home mom, my view is the same from where I sit. So many of my friends and acquaintances who stay home with their kids could be described in the same way. I’m not suggesting that they are unhappy, or that their concerns aren’t valid, or even that I wouldn’t be the same way if both of my children were typical like theirs are. The only difference I see in me versus them is the hand that I was dealt.
My children changed my focus in a way that little else can. It started when Sarah Kate was born and I gave up the career that I’d been dedicated to for over a decade. With the unexpected move to one income, Mr. Andi and I changed our priorities. It intensified with the arrival of Nathan, who showed us that all we really need is what we already have – food, shelter, and each other.
Recently, a push for “the simple life” has developed.
The message is that if families would just simplify their homes, schedules, and lives that they would be happier. Reading Lee’s article I realized that those of us who have children with Down syndrome have been given the gift of “instant simplification” – much of the fluff that typical families are encased with was stripped away when our children were born. I’m confident that the joy I’ve seen over and over again in the faces of the family members I’ve met of people with Down syndrome is because they feel the way the author feels – that they have enough.
Do you?
Postscript: Today, Mr. Andi’s cousin and his wife will give birth to a baby girl named Megan, who is not expected to survive. Lift them up in your thoughts and prayers, as we will be. We hope for a miracle, of course, but we know it may not come. Remember that these special parents selflessly chose many months ago not to take the “easy way out” of abortion, but to accept overwhelming heartache so that their baby girl could spend her short life in the loving embrace of her parents.
I was with you when we met Noah and I was so struck by what Noah’s dad said when he picked up Nathan. His comment was ” I bet you are such a joy”. It struck me at the time because I thought as I looked at his smiling family of teenagers it was THEM who were lucky to have Noah ! Truly blessed in their happiness to see their teenage son play the role model to a young toddler. Pride and joy can be found in the simplest brief encounters.
Praying for Megan and all of her family.
God Bless
Praying for Megan and your family. I wish that one of my friends could hear this story so she could understand that her having to have a c-section instead of a home birth isn’t truly the tragedy she would like to believe it is. Perspective can be a hammer over the head, can’t it?
<3 <3 <3
Praying for Baby Megan and her family.
Yes, I do believe having a child with special needs can change how you look at things and makes you appreciate the little things. I can’t count how many times I have been truly amazed with Lacey and then think was I the same with her older sisters. Probably not because the expections for them were different from society and family. We have to work harder with people and family to make them realize that Lacey is her own person and will do things on her terms and not one elses and she doesn’t care what the charts say. We just had an appointment with her Developmental Specialist and had to go over a whole list of items and at the end the Doctor says “Not sure you guys are here because she is just perfect.” My thoughts exactly and then we shared the article about my oldest daughter’s speech. The Doctor was so happy and excited and my oldest said “I did it all myself and looked the stuff up on the internet.” The Doctor is going to post on her board for others to see. My oldest always likes to share her story and her sisters and her hope is that people will stop being so mean and get over the fact that her sister has an extra chromosome because it’s really just not that big of a deal. It makes me one proud Mama, because in the end my oldest is teaching her friends to accept people as they are and not to be so superficial.
P.S. My oldest is always asking me when can she see new videos of Nathan. I think she likes reading your blog more than me.