Time Discovers Truth — 5 Minutes for Special Needs


                               

Then

And Now

Before I became a mom, I did everything at high speed.  My long legs galloped through airports, trade shows, malls, corporate hallways- purposefully propelling toward my destination. I assessed people too quickly, rushed through conversations, and often missed the simple beauty of everyday life.

Fast forward years later, when my second daughter Zoe was 5- I was standing in a small social circle of busy moms lamenting about their general lack of patience. I joined in agreement, quick with my own confession.  “No, you  are so patient..” a friend argued. I have seen you with Zoe.”

Zoe was in kindergarten then, her metabolic disease, epilepsy, and other issues stabilizing enough so that she was able to begin kindergarten with a full time aide. Each day we arrived at school, with her walker, her power wheelchair and all the tools she needed to start her day. This mom had probably seen me slowly trailing behind Zoe in her wheelchair, with Zoe’s miniature little old lady walker slung over one shoulder, the other loaded down with her two backpacks.

With Zoe it has always been about time-the extra time that she needs. When she was a baby we kept count of the frequent infections, hospitalizations, and developmental milestones that were supposed to occur at certain times, yet always passed us by. Meetings with specialists spent looking forward in time – will she walk? will she talk? when ? will she ….? and the worst  questions that sometimes would  linger unanswered ….how long can she? will she ever? .. how long will she…?

Zoe has taught me all about time. .That to feel and do her best, she must never be rushed, especially by the high speed of life that used to consume me, Now I ” tell Zoe time”, gently reminding others that snack time takes 20 minutes, assisted bathroom breaks fifteen. That there is travel time getting out the door in her walker, down the driveway, into the car, packing her walker alongside the power wheelchair, mealtimes that include medicine. As Zoe’s mom, I also have learned to negotiate extensions of time for Zoe.  Time to adapt activities so she can participate fully, negotiated time to try different medicines so that we can stay out of the hospital, time to explore new therapies and new approaches to life’s everyday challenges.

Zoe is now 8, and ironically time is a concept  she has trouble mastering , the sequence of days of the week, and the time segments of each day -instead she memorized her routines. She has mastered living fully at her speed,  the way she dances- moving her upper body to music in her own sensational groovin’ kind of way-  every time she hears a tune she likes. She sings along to Radio Disney , many beats behind the music, but content to sing out the lyrics to each song. She gives hugs in a fierce, slow motion, emptying of the heart , complete way – like no child I have ever held. And the day the eye doctor told us she would eventually lose her vision, she began to really show me the way she see’s life- and all the beauty within it , in a way I had never known.

Time does discover all truths, that a silent and sick little girl can grow up to be a sassy little sister, who laughs at her own jokes, and makes life fun for her family even when she is not feeling well. She has taught us to embrace the simple things in each day; the way she  appreciates  the scent and beauty of the roses from Daddy’s garden, to  see the brightest colors in the crayon drawings her big sister makes for her, to savor the experience of rolling out pizza dough and spreading sauce, and the importance of making the most of morning cuddles. And she has taught me that there is a time to run -and a time to wait, a time to stand and even a time to fall- but most importantly ..that for those who love, life is timeless.

Email Author    |    Website About Suzanne

Suzanne is the motivated mom to two daughters affected by mitochondrial disease. She shares a cozy home in Scottsdale with her handsome husband Bruce, smart and spunky daughter Olivia (10), sassy yet sweet daughter Zoe (9) Frankie the Bernese Mountain dog and Max, the Golden Retriever. She is an avid reader, obsessive coffee drinker, wannabe knitter, advocate for kids with special needs, and a reunited adoptee.

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1 bubbleboo November 14, 2010 at 2:33 pm

Thank you so much for writing this. I needed to read it today.

I am about to walk into a difficult situation at my son’s school, to ask why they are not doing all that they can for him – this has strengthened my conviction that I am doing the right thing: Because it is all about the child.

Such a beautiful post.

2 Suzanne November 14, 2010 at 3:38 pm

It’s funny in the beginning of the journey, we care SO much what others think, doctors, therapists, mom friends.. as we go down this road intended- its our own ” gut” instinct we learn to rely on, and our own ideas, expectations, and goals that matter the most.

Stay strong. You may be surprised that the team at school comes to understand your own way of thinking. it is always about the child!

Good luck, and thanks for your comment on my first post here!
Suzanne

3 Judith Potter November 14, 2010 at 4:29 pm

Thank you for sharing with such honesty. A beautiful piece….needs to be read by so many others. and thanks for your reply to bubbleboo – my lovely, special daughter. xx

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