Monday, October 27, 2008

Hi girls,
I want to share with you a post from the blog of another special needs mom.  Her name is Suzanne.  She has two beautiful daughters who both have complex 1 mitochondrial disease.  It is a progressive disease that has no cure.  I have been following her blog for several months, and have been absolutely inspired by her heartfelt words.  
With all of our recent talk of the "my child is different" feeling, she was so sweet to give me permission  to share this with you.  A big thanks to you Suzanne!  I have read it over and over, and it touches me every time.  I hope you'll take the time to visit her blog yourself at   She promises to update it again soon.  I think you'll all relate to it and enjoy her talent for writing like I have.
-Tiptoe Mama 

Dear Little One,

Things are not always as they seem.

We were at the park the other day, you and I, and your big sister too.  She is four, only a year older than you, but she can run and jump and climb.  And you, completely in love with her, always laugh and clap- and share her joy.  Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently. 

On this day we can see the playground ahead, and your sister begins to run.  My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait.  You are impatient; there are probably hundreds of tiny footsteps between you and your sister.  You reach your arms up asking for help.  You want me to carry you.  I refuse the voice in my heart and I say "no".  I take your hands in mine and we begin the slow walk together.

Finally when we arrive at the playground, you want to climb.  I hold your waist, your arms and sometimes just your hand to stabilize you as you move carefully up the steps.  A little boy, almost half your size walks by you, too close - his body briefly making contact.  It is enough to challenge your balance and you begin to fall.  My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide.  I place you in my lap.  You begin to scream loudly and I see the boy's mother studying you and me.  Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment.  We push off the top of the slide and you are crying in fear as you always do.  And five feet later as we reach the bottom I hold you in front of me and you laugh!  We are closer to the boy's mother now, and we make eye contact.  Before I can even consider conversation she asks "How old is she?"  "Almost three", I reply..."And your boy?" She answers that he has just turned one, a few months back.  She abandons the conversation, afraid and unable to ask the obvious questions.  She turns her head and her eyes follow her son instead. 

You see, little one...things are not always as they seem.  When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me.  You may even be restless or fussy.  Others may see your physical size, your neediness and think I am indulging you.  But things are not always as them seem.  I know your needs.

Sometimes, you may cry or scream in public.  It is because I am challenging you.  Expecting you to act like other children as we move through public life socially as a family.  Others may see a tantrum; I know your special needs. 

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior.  But I know you are adapting to the challenges of your environment the best that you can.  I know your special needs.  

Love, Mommy



Happy in Holland said...

I love this. Thanks for posting!

LukErin said...

Wow, that really is very touching! It makes me want to do better... with ALL of my kids.