Tag Archives: Down Syndrome

To the Mother I Met at the Mall

2 Feb

I have a distant memory of you.  I know it was a cold winter day where the temperature was too frigid to bundle up my toddler and let him play in the yard, but he needed activity to keep from running laps down the small outlets of our hallway.  Neither my carpet nor my patience could handle the jumping off furniture.

I remember standing in the middle of the mall by the play area, holding my baby girl close to as she was still so fragile, tiny and ill pre-heart surgery days only a few months old.  I can picture her on my shoulder, petite frame and giant blue eyes watching the world as I watched my son run on the gym mats and climb on foam filled play equipment.  I already had a container of disinfecting wet wipes open by the stroller, already considering how to clean his hands and mine after his sister was strapped back in her stroller.  I remember the faint rainbow pattern of the stain glassed pattern through the ceiling windows of the mall, the sound of the elevator music over the speakers and the murmur of costumers walking and running their errands.

But I don’t remember your face.  I remember you coming to me with tear filled eyes, your eyes barely moving from my daughter’s soft and beautiful face to meet mine.  I’m sure I tucked her closer then, because I always did with her.  I was always anxious and fearful of an illness that could take away my daughter before we allowed her heart to grow big enough for the surgeons to repair the hole in it.  I’m sure that I was still contemplating whether the fun of the play area was worth the exposure to those germs.

You paused before you spoke.  As a mother I could feel the heartache when you shakily told me that this was the day you had lost your daughter.  You told me her name and that she had been beautiful and loving and kind.  And you were struggling today with the pain, the heartache, the loss.  I saw you had a small support system that was quietly waiting behind you.  And as my own eyes filled with tears you shared that our daughters both had an extra chromosome.  And that you knew seeing my dark haired, blue eyed girl was your daughter telling her that she was okay.  And you smiled, even though you hurt.  You said that seeing my girl was her daughter’s way of telling her that she was okay and still watching her.

I no longer remember what I replied.  Again, I no longer remember your face.  But I remember holding your heartache in my heart as I kissed the soft hair of my baby girl.  You left then and even though I know I had been terrified to bring my daughter to that play area that day I never regretted it that day.  Because we were meant to be there.

To you, dear Mom who lost your daughter with Down Syndrome, I have never forgotten you in the last nine years.  I have never forgotten how you admired my little girl as I always view her myself—seeing and loving those extra quirks of her flatter face and small nose, her beautiful blue eyes set far apart in a head that was then too large for her body.  I think of you nearly daily. I can only imagine what your girl looked like, but I know how much you love her.  And I’m thankful that you gave me that moment to remind this young, scared mother that sometimes you just need to stop and be grateful for the moments you have.  I can only wish that time eased your pain, but a mother should never lose someone that was literally a piece of themselves at one time.

To the Red Haired Girl at the Splash Pad

26 Jun
IMG_7836

I saw you with your frizzy red pigtails, freckled face and your soaking wet yellow dress.  I saw you watching my daughter.  I saw you sitting near her, not too close, but close enough to watch her expression as she concentrated on watching the buckets fill with water and then pour down.  Most kids would be standing under that water.  Mine likes to watch from a distance.  I saw you smile at her.  And then I saw you look up at me.

You walked to me, shivering in the air, soaking wet.  And you smiled this beautiful, crooked smile with your front teeth missing.  I smiled back.  And you sat next to me and watched my daughter again.  Here is where I brace myself as a mom.

My daughter has Down Syndrome.  She’s non verbal and has some autistic tendencies.  She doesn’t know how to relate to other kids, sometimes doesn’t mind just watching others.  Some kids watch it and ignore it.  Some kids ask questions.

What is wrong with her?

Why doesn’t she talk?

Why is she mean? (If she pushes somebody too close to her out of the way)

Why is she yelling?

As her family we are used to it.  The kids she has gone to school with for the past few years know her quirks.  But “strange” children are rarely accepting of a child with special needs.  Especially when she’s nine and doesn’t speak.

So I braced myself when you looked up to me.  Because even though you look so sweet I get tired of explaining my daughter’s quirks. It hurts every time I have to explain that my child has special needs.  “Is that your daughter?” you asked.  I said yes.  “What is her name?”  And with that reply you got off the bench and went back to sit by her.

“Hi!” you said brightly, plopping yourself on the cement right next to her.  She looked at you, but instead of shrieking, she smiled back.  You wrapped your arm around her and laughed as the water bucket poured down.  She looked at your arm and I stood up, expecting her to shriek now and push you away.  See, she generally doesn’t like being touched.

But my daughter, like me sensed your beauty.  Instead of yelling “nooooo!” she did something amazing.  She leaned in and hugged you back.  And laughed as well.  And I sat down again.  You were too far away for me to hear your conversation.  But I saw you talking to my girl.  And not caring if she didn’t reply back.  I saw you both laugh.   I saw her touch your red hair and smile.

When your mom called you, you walked over to me wrapped up in a beautiful handmade quilt.  I smiled again, as I was still speechless.  Instead of me thanking you, you thanked me as your teeth chattered.  “Your daughter was so much fun to play with!  Have a great day!” you chimed as you started to run to your mom.

I’m sorry I couldn’t say thank you at that moment.  But, you see, I rarely see friends with my daughter.  You gave us the most beautiful gift that day.  You gave us a day where she was a typical child.  Making friends and laughing.  For that I will always be grateful.  And I hope I see your frizzy red pigtails again.  This time I will make sure to thank you.

 

Surely, just slowly

28 Feb

I was so excited to work out this week after joining the YMCA.  I went on Sunday and did my week two workout of my Couch to 5K workout.  Even though my knees hurt during impact I stuck through it.  After all, it was only 9 minutes of running.  

On Monday my 10 year old really wanted to check it out, so at dinner time (fed the young ones a quick “early dinner” so we could do family dinner afterwards) we headed out as a family this time.  This was my first time bringing my younger two.  My daughter is five and has Down Syndrome.  She has her moments of “stubbornness.”  She can, and will, do most anything.  It just needs to be at her own pace.  That pace at the Y means stopping frequently to watch the swimmers in the pool, the people playing racquetball, and she really wanted to dive into the gymnastics area once she saw all the girls in their leotards.  (Mental thought to enroll her in that program!).  As I’m convincing her to keep walking I’m toting her 28 pound one year old sister on my hip and a diaper bag on the same shoulder.  Forgive me for wanting to walk a little faster.

Then comes the stairs. Our Y has a great program where they watch your little ones while you stay on site and work out.  But it’s located in the basement.  So down the flight of stairs we meander.  I was thankful to have my son there holding my five year old’s hand so I could shift the baby to my other hip.  Those stairs were not fun after the night before’s activity, but dang it–I was going to get a second workout in!

We finally made it around the corner and while I had to hand the little one over, Nyssa’s slow pace turned to a quick jog as she spotted slides, tumbling mats and tons of toys.  I didn’t even say goodbye as she was off to play.  Works for me.

Back up the stairs.  Drop off the 10 year old in the youth zone (bonus as one of his good friends from school was there).  I was thrilled to leave all three of them and even handed my son some quarters for the vending machine.  Repeat on the treadmill.

On Tuesday we went again in the morning.  This time I had to park on the street as the lot was full and carry the little one just as far.  Again, while trying to convince my five year old to move a tad quicker.  (Instead, she thought it would be funny to try to turn around and cruise the other direction.  It was not.  Not funny that is.)  I missed my 10 year old when it came to the stairs, but I followed my peanut and she did amazing all by herself.

What I love about my little girl is the same thing that drives me crazy–she’s often slow and steady.  She takes the time she needs.  I am impatient.  I want to just get to what I’m doing. I want results.  I want to step on the scale and see that it’s moved.  I want to be able to just start running even though I haven’t in years.  But my body is not used to it.  Thanks to overdoing it I have knee pain, back pain, and a lot of frustration.  I want to get back on that treadmill, but instead I’m going to do some lower-impact workouts.  And the scale?  It will move, but not at the pace I want.  But that’s part of a lifestyle change.  This will not be a diet that will fail.  This is what is going to get me playing soccer with my son, running around the park with the girls, and help me look and feel better.