Archive | December, 2016

The Gift of Friendship

15 Dec

My older daughter never had play dates unless it was for her sister (or me).  Birthday parties were family and family friends.  Only once did we get one from school and that was from her school bestie in the special education room with her.  It was wonderful to be there, but it saddens me that she never really had friends.  

I was reminded of this as my youngest came home with a birthday party invitation.  Every day she asks “when do we go there?  We are going to the party, right?”  While I say, of course, and I’m grateful for the friends she has made at her new school.  At the same time I’m wondering how her sister will feel at home while we go to a party without her.  Trust me, I know she will enjoy her time.  She’ll probably be watching movies on her Kindle, throwing things at the fireplace or rearranging.

  And I wonder if her sister has friends at school.  I know she enjoys lunch with classmates daily.  The kids volunteer to eat lunch with her in her classroom.  And her teacher writes that sometimes Nyssa gets silly or just enjoys her peers.  That sounds like her. She loves laughing especially if there is physical comedy involved.

But I wasn’t sure that was friendship.  Until I opened a large mannila envelope from her third grade teacher today.  I didn’t think twice.  As a special needs parent I get IEPs, test results, and the like.  I know her new staff is testing new communication devices with her and expected some kind of paperwork to fill out.

Instead out poured notes of love from Nyssa’s classmates.

I sobbed at the sight of child-like drawings and the sweet spelling of these words.  One friend drew some of their favorite things: biking (even though she can’t bike yet), McDonald’s, dressing up, swimming, and the swings.

In fact, most of them mentioned the swings, the place she loves the most when she’s outside.


She makes them laugh.  They enjoy being with her.  They hope she loves them too. 


Friendship means love and laughter.  It means kindness and the ability to love someone for their strengths and their weaknesses.  My girl might not tell me about her day.  Or all about her friends at school.  She might not tell me who she was playing with on the playground or who she had lunch with, but she has friends.  

And for that I am grateful.

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Summoning my Super Powers

9 Dec

Being a mom is hard.  Before I had kids I struggled juggling college and work.  Always both.  I was always rushing to one place or the next trying to get there on time.  To finish my homework, to put away the thousands of clothes women dropped on the floor of the dressing room (they don’t magically reappear on the store racks.  There’s one or two people out there that get the job of picking up after others.)

I’m tackling this parenthood thing without juggling the work aspect on top of it.  Yes, I’m lucky that way.  But.  It’s vital.  I’m the one watching my son’s blood sugars at school, bringing extra supplies in for him, driving him to/from school so his insulin pump doesn’t shut off from the cold.

I’m the one who is reading the middle one’s communication notebook, trying to assist with the difficult task of figuring out what my nine year old truly understands and is just being sassy refusing to do.  Or if she’s struggling with some unknown illness or injury (she had a cold for a month and daily I wondered is it a sinus infection? Ears?  Allergies?  And then poof-she was better. 

I’m the one that washes the dishes, cooks most of our meals, washes the million loads of laundry we make.  My “me” time without kids is usually buying laundry soap, wrapping holiday gifts, addressing Christmas cards.

Some days I’m tired of caring for others.  I don’t want to wash another plate.  I don’t want to check the blood glucose meter to make sure my son is testing his blood glucose when we ask him to, seeing another blank line in the Dexcom application, wondering why my kid opens her windows in 20F weather when I tried to get the upstairs rooms warm enough before bed.  I don’t want to change my nine year old’s poopy pull up and remind her she needs to use the potty.  I don’t want to wash blankets that have been peed on even though I know bed-wetting is normal in kids.  I don’t want to trip over another stuffed animal or hear my daughter scream she hates me during a five year old’s tantrum.

I’m tired.  I’m cranky.  Quite frankly I’m a bit lonely sometimes because unless I run errands the only people I talk to are my kids and husband or the swarm of friends that live in my phone.

I allowed myself to cry and feel.  Because some feelings hurt.  But then I pulled on my Wonder Woman tiara because quite frankly I don’t have time to wallow in the darkness of depression and feeling sorry for myself.  I cannot compare my parenting to others, nor can I compare my kids to others.  This is our battle, we rise gracefully and we fight our own battles.

And I kind of like my tiara even if it’s plastic and from McDonald’s.  It makes me feel pretty and happy.  Wonder Woman wouldn’t be hard on herself and say “oops, I should have stopped that villain.”  She fights the villains.  So will I.

Power on, my world of Super Moms and Dads.  Whether you’re fighting a world of diabetes, nebulizer treatments, cancer treatments, miscarriages, birth defects, depression, puberty, terrible twos or whatever villain that ails you find the strength.  I send you virtual hugs.  And I’m going to continue scrubbing the toilet and washing laundry before my kids get home and demand something.  But first I need to do some yoga.  And take care of me.

Love is not just Marshmallows

2 Dec

Today my five year old told me about her friend at school.  And her friend’s sister.  Her friend’s sister talks with her, plays Barbie Dolls with her, they practice writing letters and words.

And in her tone was a very sad girl bursting with confusion in a pink tutu skirt.  Because her older sister does none of that.  At that moment her sister, who has Down Syndrome and some autistic behaviors, was sitting in front of the fireplace rolling small plastic hoops onto the stone of the fireplace and giggling.  It’s her favorite game even though we remind her endlessly not to sit by the fireplace.  “It’s hot” we say and sign.  She bellers a “no” and continues.  She’s incredibly stubborn, but that’s the beauty we have grown to love about her.

“I hate my sister.  I wish I had a sister like A’s.” And my heart cracked.  This wasn’t a typical outburst, it wasn’t a tantrum.  This was a five year old who has realized her sister is not “normal.”

I paused with tears in my eyes, trying not to sob for the big sister playing with her rings as if this conversation wasn’t happening.  “Well, I love her” I said, “I love her for who she is, just like I love you for who you are.”

Because a five year old is on a mission to win every argument they start, she continued.  “But she won’t listen.  She won’t play with me.  When I try to talk to her she ignores me.”

And I cannot deny all of these discoveries are true.  Her sister usually prefers to play solo, to swing on the swingset or watch her Kindle, read books, play house.  But she often plays alone.  I have the hunch it’s because she’s hit her wall of interaction after school and the littlest is an extrovert who always wants to be noticed.

I remind my daughter of the many good qualities that we have with her sister.  She laughs often, always wants to dance, is great at peek a boo, and they can teeter totter together as they are nearly the same size with four years between them.  “I love her for being her.  I love you for being you.  Even when we are angry, we still love.”

She may have wanted to keep fighting that fight, but I couldn’t.  I was reminded of the grief process and how I was sad and angry the day we discovered our daughter had Down Syndrome.  Until that became less and less a priority and I just learned to love her as her.  

In time I think she will realize how lucky she is to have her sister and brother.  She will realize her sister is full of unconditional love.  I certainly see it every day.

As I wrote this I managed to leave the two of them in a different floor in our house than I was in.  I came back down to the entire pan of Rice Crispy bars on the living room floor and two girls gnawing at each side.

Apparently we love our sister anyways.  At least enough to share the marshmallowy goodness of the treat Mom said not to eat more of until after dinner.