Bridget's Light

Daily Life

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Parents with a new DS diagnosis, or anyone unfamiliar with Down syndrome, might wonder what daily life is like with a DS family member.  We’re just a regular family, doing regular things.  It might surprise others to know how “normal” things are at our house. Everybody wants to hold the baby, and the biggest arguments around here are about who's "hoggin' Bridgey":)!

A typical day in the life of our family is much like any other household with five children, one of them being a one-year-old :-).  We're involved in all the regular rituals of school and getting kids on and off the bus, doing homework, etc.  Kyle, Brian, Sara and Emmy are participating in after-school activities (Kyle plays football & basketball, Brian plays basketball, and Sara and Emmy take dance lessons), so we are in the car quite a bit Monday-Thursday.  We think family dinners are important, and try to eat together whenever possible.  Bridget loves to be part of the group, and we push her highchair right up to the table. During family reading time, she is happy playing on the floor in the middle of everyone, or having someone read to her.  She is truly the most content when all the kids are around--no matter what we're all doing (homework, cooking, playing, or reading). 


We laugh about how much Bridget is like all of the other kids when they were her age.  She's super busy, curious, sometimes uncooperative and adorable at the same time.  Changing her diaper is like trying to wrap a moving present...just as it was for the other kids when they were one :).  Sometimes people will say that children with Down syndrome are "always happy", which implies that they do not have ups and downs (no pun intended), and that simply is not true.  Bridget is a typical baby in most ways.  The extra chromosome certainly does not define her. 


Bridget is truly adored.  The kids say they can't imagine a more perfect baby :).  In her short life so far, Bridget has already inspired many with her joyful and willing participation in Life, and with her sincere desire to learn and grow.  She reminds us that all people, whether they have Down syndrome or not, are always in the process of becoming.  Each person develops in his or her own way, and on his or her own timeline.   While there are many misconceptions about Down syndrome, what I would love others to see is how Bridget's light illustrates the reality that individuals with Down syndrome possess a wide range of abilities and are cherished members of families as well as important members of the community. 


~There's an amazing, positive undercurrent that’s present even on the most ordinary of days...You just need to be open to seeing it~



Some thoughts about what makes Life with Bridget so special... 

She’s so deliberate.  Watching her learn and grow has been absolutely fascinating.  People with Down syndrome are often viewed in terms of their disability.  Bridget is so determined, and so able to do so many things.  She loves Life, and it's just plain fun living it with her.
 
I've been thinking about how to describe her development.  Kids with DS reach the same milestones as typical kids, just sometimes at a slower pace.   That is true for Bridget.  She is delayed in some areas.  But, it doesn't really matter.  She is progressing, and she is clearly working toward future milestones.  She's happy.  She's thriving.  She continues to grow and learn and show us all how to be content with Life without being complacent.  

It’s easy with typical children to take development for granted, and we often miss seeing the process in things that happen quickly.  When you slow it down, you see the magic.

Take an Olympic platform dive, for example.  In slow motion, you’ll notice the extension, the multiple distinct movements, the deliberate positions, and the angle of entry of the diver’s body into the water.  The dive that, at regular speed, seems effortless and like one continuous movement becomes even more beautiful and powerful when the process—and the effort—is revealed.

Thank you, Bridget, for helping me keep my focus on the process...

A few stories... 


First Smile

“Bridget’s like a Band-Aid.  She makes everything better.”

-sister Emmy, age 4

 

The day our dog died is the day Bridget chose to smile for the first time.  We thought we saw what looked like real smiles for a few weeks prior, but that morning was the first big, long, obvious grin.  I call it a rainbow smile—one that starts with one eye squinted and a hint of the lip starting to turn up.  It builds to a full open-mouth, tongue-out grin that slowly and gently falls back to a sweet, squinty-eyed expression.

I had been holding Bridget as I was telling our heartbroken four-year-old that Holly would not be coming back.  I looked down and caught the first glimpse of a smile on Bridget’s face.  I tried to keep talking, but I couldn’t help notice the huge, silly grin that was evolving as I spoke.  I was already crying, but my tears were falling so rapidly that I had to keep wiping them away to see Bridget’s sweet face.  I cried harder and then I started to laugh.  I think she’s really smiling.  I cannot believe you are choosing now to smile, I thought.  I couldn’t believe her timing.  She must have known we would all be sad.

Re-focusing the Lens

One day when Bridget was just a few days old (and recovering from her surgery in the NICU at Children’s Hospital), a dear friend came to visit.  My heart was filled with love and pride as we admired Bridget sleeping in her little bassinet.  We talked about common stereotypes and the general notion that people with Down syndrome are somehow flawed.   I had a hard time adjusting to the idea that others may look at my daughter in this way.  When I looked at Bridget, all I saw was perfection.  As my friend put it, “The imperfection is not in this tiny human, it is in the biased perspective of the viewer.”

 
It’s so true:  sometimes we need to clean or re-focus the lens through which we are looking.

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