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Balancing Life

21 Mar

 When my youngest is at gymnastics I sit on a cold metal folding chair and I watch her on the balance beam.  I can see the determination in her face and see her arms out as she wobbles a bit, then catches herself a step in and refocuses.  Now and then she slips.  But most of the time, she catches herself off-balance and continues on.  Her teacher follows a step behind when she is on the high beam, allowing her to find her own strength and balance, but there in case she were to freeze or fall.  

I balance all the time.  I wobble more than she does when I walk.  I haven’t worn heels since I fell in them and cracked my elbow.  I’m still not sure why it’s called the funny bone.  I balance in my running shoes now.  Between keeping my house clean and spending my much-needed free time exercising and writing.  Staying in to watch another episode of Caillou with a five year old on my lap or going to a Yelp Event with a friend.  Going out on a date with my husband, or catching up on the sleep I miss throughout the week.  Between researching more services we need and just going to Culver’s and eating ice cream.

Some days I balance better than others.  Some days I can smile, I can laugh, I can make those phone calls and doctor appointments easily.  Some days all I can picture is a potential hospital visit for a child and my “fight or flight” response kicks in.  I freeze.  I stare at the neon Post It list of “stuff” I need to accomplish and push my chair away from my desk.  I find my blue running shoes and go pound the path with the steady rythym of my steps. Or I put in headphones and go hunting for my favorite feel-good songs and crumple into the feels of those songs.  Or I open the pages of a book and immerse myself in someone else’s life for awhile.  I feel the clinking of my bracelets reminding me of everything.


But then I refocus and I make those phone calls, I schedule visits with specialists, I ask for help and spend six hours in my van to steal a night away with my husband where I can dress up and feel like the fifteen year old girl he asked out years ago.  I can wear a fiery red dress and heels and feel my legs ache from the hill I walked a few hours before.  I can fill my tub with hot water and turn on the jets, closing my eyes for a few minutes just listening to the pounding of the water.  

I might not be graceful always on my walk.  I might sometimes close my own eyes and repeat the Serenity Prayer or look at my bracelets for inspiration.  I might text someone close to me for just a single boost.  But I continue.  And I make it.  I wobble, I catch myself.  I feel my family and friends a step behind, ready to hold their arms up if I need them.  

But just like she does I continue.  Because that’s what I do.  I breathe.  And repeat.

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.

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.

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.

Sunshine and flowers

20 Sep

I’m not an optimist.  I’m not always a pessimist either (even with the things that make me worry).  I like to see myself as a realist.

But sometimes I need a pick me up.  Some days feel endless, some days I’m caught in the trap of my mind where I test my youngest for diabetes at the slightest symptom because I missed her brother’s early symptoms, cry because I ask my middle daughter how was her day for the millionth time in her school career.  Even knowing that she will only say hi.  And unless I get a note or a project in her backpack I have no clue how her day was.  

Some days are hard.  And I know there are others handling worse things. There are others also handling easier things.  Truth? 

That doesn’t matter.  This is me and I need to acknowledge and take care of me. I am important too.

So in this moment I pause and look at my shrubs to see if they need weeding.  And instead of weeds are flowers.  I didn’t plant them.  I don’t know how they grew there, but I welcome the beauty.  These sunny yellow flowers are my gift to pause and reflect.  And see the endless beauty of life.  And love.  To enjoy the moment.  And sunshine. 

And know that I have a purpose here.  And I am not alone in my journey.  And life really, really is good.

Bad Mom

28 Aug

I haven’t seen the movie yet, but I am a mean mom. Maybe a bad mom too. Probably.  Even this blog has four drafts sitting in it where I compile something sweet about my kids.

But the truth is, at the current moment I hate them.

My oldest spends his time on various video games or biking with friends. And then complains that the cat has pooped on his pillow.  By the way, since it’s his cat the cat boxes are his chore.  Das Booty and I slunk our way downstairs with my new one-handed laundry basket to wash sheets and I checked them.  

There was mold on the cat poop in the litter box.  So next time he tells me “yeah, I scooped the cat boxes” I’m calling absolute bullshit on that.  I’m glad the cat pooped there and I think he needs to use the allowance money he’s clearly not earning by snarling a “fine” to rotating the dishwasher only to put dirty dishes in the cupboard.  It’s a dishwasher!  It does the work for you!  I was his age washing dishes with a scouring pad and a sink full of Dawn dish soap.  You usually had to drain the sink because the water got cold mid-wash or oily.  Yet, my kid can’t be bothered to put the dishes away and set the dirty ones in a rack that you unwrap a soap pellet and push a button? 

My middle daughter doesn’t have many words to begin with.  But lately they have all been forgotten for the scream.  Or should I say scream(s).  The “do not go near me” scream, the “I want that right now” scream, the “no, I mean McDonalds-see right there where I’m pointing” scream, the “I don’t want to ride in the child seat I want to sit in the basket so you have no room to shop” scream, the “I won’t hold your hand in the parking lot” scream, the “I’ll go outside when I choose without telling you, what do you mean that’s not okay” scream, the “not this song” scream.  Even when she’s happy she’s screaming.  She’s swinging her heart out in our backyard.  Still screaming.

My ears hurt.  Redirection no longer works.  My voice seems to make no difference.  If I had a mute button I would make sure that I left that station on mute.  

And then the youngest.  My sucubus.  The little girl who refuses to be quiet and will continue to scream at  me “mom!  I said I saw a blue car!” unless she hears my acknowledgement of this amazing piece of knowledge I have no idea how I survived without.  Forget sitting.  She’s on my lap, climbing on my boot or snuggling up to my shoulder.  Cute, yes, but when you hear “mom! Arm!” because I’m not snuggling right I’m done. 

So, yes, I’m sorry dear children, but mommy doesn’t want to hear “it was my turn!” or “but I wanted to hug you!” I don’t want to hear you scream and I think anyone who throws his bread crusts on his bedroom floor deserves to have the cat pee on his pillow.

But I’ll probably love you again in five minutes.  Or twenty four hours.  It all depends on you.