Our story: siblings, Down syndrome, & unexpected beauty

J&J2&3

(c) Mark Leach, www.downsyndromeprenataltesting.com

A good friend found this photo of my kids earlier this week and posted it to Facebook. I found myself transfixed by it. I wonder if you see what I see?

I expect complete strangers who see this photo will likely just see two cute kids about to give each other a smooch. That alone is a really sweet photo. I hope they enjoy it just for that.

But, for those who find it on this blog, or know me, then, they know that the girl in the picture, in addition to having cute ringlets and pursed lips to kiss her brother, also has Down syndrome. (I also think those that have only known me since my mid-twenties will be equally surprised to see what beautiful hair they both have). Upon learning that the girl has Down syndrome, many people will think of that first: “oh, look at that sweet photo of that girl with Down syndrome about to kiss her brother.” That’s the world we live in. 

But for many, who know Juliet or know I have a daughter with Down syndrome, they will see a lot more in this photo.

Those of us who have cared for a toddler with Down syndrome can look at this photo and appreciate so many other things:

  • Look at how well she’s holding her head up, the result of weekly physical therapy sessions through early intervention services mandated by federal law.
  • She’s holding a crayon and drawing, again, the result of bi-monthly occupational therapy early intervention sessions.
  • There’s books on the floor around them, books that she enjoys looking through and sounding the words out thanks to developmental intervention and speech therapy.

But what I hope everyone sees is the pure love between Juliet and her little brother James in this photo. And, appreciate how no one can expect that beauty when the diagnosis is first delivered. Or, at least I couldn’t.

I don’t mean I couldn’t fathom my little girl loving her little brother. I mean factually, when we received the diagnosis there was no James and no foregone plan to have another child. Instead, we were advised of the likelihood of having another child with Down syndrome should we become pregnant again.

So, we could not have expected, just 3 years after she was born, she’d have a two-year old little brother (when this photo was taken).

That they’d love each other and love playing with each other.

That they’d spend a cold winter day in the front room coloring together.

That spontaneously they’d give each other a kiss because they love each other.

You just cannot expect all of this when you get the diagnosis that your child has Down syndrome.

But it can happen. And when it does, you will have lived with your child, loved your child, cared for your child for thousands of days and tens of thousands of hours.

It happened for us.

The proof is in that beautiful picture.

Comments

  1. Beautiful post and what two gorgeous kids (siblings) I see. Such love. Warms my heart. Best wishes from one proud parent to another…

  2. Great post. I look forward to the day when parents will know this if they receive a diagnosis.

  3. JoLee LaRock says:

    I’m 38 and just had a sweet baby girl December 3rd 2013, she was diagnosed a week later with Down’s, though I knew in my heart almost from the start when I first became pregnant and it was confirmed for me when the first time I saw her pretty smiling face (yes, she was smiling right after being born) There was one nurse in particular who was adament I needed to get my tubes tied because God forbid I have another baby with that terrible disease *sigh* . What that nurse didn’t see was what an amazing child my Brianna already was, she has no idea how hard this wee limitless child works to accomplish what others take for granted. That nurse has never seen the happy tears of love and pride her daddy and I cry with ever accomplishment, big or small. She’s never seen all the love she has for everyone and how truly happy she is, yet I’m branded as one who should never have had this child, let alone another one. At first, I agreed but after about a week, I cancelled my appointment and have decided to let God decide. If her blesses me with another child, I will be grateful, Down’s Syndrome or not. Every child is a blessing.

  4. Amy cajigas says:

    I know this To be true…wish i kmew it when i was pregnant..the way his brothers. And sister love him..and he adores them

  5. Great picture. And yes, they do have great hair.

  6. So great you are taking about this. The decision to have more children after having a child with Down syndrome. We had a 2 1/2 year old boy when Grace was born. I think most people assumed we were done having children after Grace. So when we announced we were expecting baby #3 it was a shock to a lot of people. (I was 38). Our third child, a girl, was born 15 months after Gracie. It was the best decision we ever made. My kids all have this amazing bond. They are their own little pack and they are my greatest joy. I always tell parents who have kids with Down syndrome to consider if they want more children. It is definitely not a forgone conclusion that your family is done growing.

    • Thank you for sharing your experience. Having been raised with two brothers, I wish you all the best in your household with 3 kids. We stopped at 2 so the parents could run man-on-man defense–you now have to go to zone coverage. 😉 And, for those families who may want more children, adoption is always an option.

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