"Celebrating Monotony" & Other Confessions

I have a confession to make.  I've been on etsy looking around at various decorations for a walking party I can't wait to have one day.  It's going to be a bash when my girl takes her first steps.  What I haven't fully decided yet is if we should do a walking party when she walks independently with a walker or when she walks fully on her own...
Decisions, decisions.
Meanwhile, Will doesn't remember his walking party (although every year, on Dec. 8, I remind him of when he took his first steps and we watch the video.)  So I don't want him to feel left out or uncelebrated.  We've been talking about different things he is working really, really hard at (bike riding)  and maybe we will throw a celebration for him when he masters some of his goals.

We celebrate our kids and their accomplishments.  They work so stinking hard for each milestone.

I was struck by a comment I heard last spring.  I sat with a group of parents of kids with limb differences.  One of the parents mentioned that his biggest fear upon having a child with a limb difference was that he would be relegated to always "celebrating monotony."  He feared that he would end up cheering every time his son picked up a cup or a utensil - as if that would be the ultimate accomplishment for his child.  And he deemed those everyday tasks "monotonous."  Really, he feared that maybe his child would never accomplish anything beyond everyday tasks.

It rubbed me wrong.  Big time.  So I bit back my own fears and spoke up.  As we discussed it within the group, I think that what the parent perhaps really feared was that maybe his child would never accomplish anything beyond everyday tasks and he would need to readjust his own perspective and goals... and that scared him.    (Isn't that just a critical component of parenting?  I think we all end up adjusting our perspectives and goals - at some point we have to let the kid set their goals and priorities and we have to back off, I think... In my opinion, I just think those of us with special needs kiddos face this reality that it's not about us a lot earlier.)

I suppose I took offense initially because that is what I do.  I celebrate "monotony."  It may be monotonous to watch a child walk or run or jump.  But when my kiddo missing feet does it, it is worth celebrating.  Most kids ride bikes.  My kid does it with 4 prosthetics - one per limb.  How can I not watch in awe and praise his efforts when he manages that?  He speaks clearly despite multiple mouth surgeries.  Most four year olds can talk no problem.  Mine has major challenges yet you would never know it.  It's not monotony for him.  He feeds himself and writes his name.  I suppose other four year olds do too... but mine does it with 3 partial fingers.  My daughter moves around by scooting.  It's exhausting.  (I've tried.)  Someday she will walk.  And there won't be any monotony in that accomplishment - she has spent hours and hours of her life in therapy, we've invested tons of money in therapy and equipment, she has endured surgeries... and she will walk.  I will never take her steps for granted.

So here's the thing.  It seems I can remember a lot of my life spent working for the big accomplishments.  And with the exception of being a finalist for teacher of the year in my district, I didn't really have any huge accomplishments in life (at least according to the world's standards.)  In fact, I pretty much followed the typical pattern.  I learned to walk.  I learned to talk.  I was potty trained presumably although thankfully I don't recall that.  I learned to sleep all night.  I learned to ride my bike.  I learned to read and write.  I did not every really master math.  I graduated high school and college and grades were fine.  I got a job.  etc.   I ran a marathon but so did fifteen thousand other people on that day in February.  And though I'm super proud of my accomplishments in birthing two babies... roughly half of the population has done the same thing for centuries (& most without medical assistance or the comfort of a hospital.)  I'm not exactly extraordinary.  At all.

Growing up, I don't remember most of my "accomplishments."  But I do remember many a dinner time when I had the "you are special today" plate at my seat.  I must have accomplished something worth celebrating with our family on those days.  I remember loving seeing that plate on the table.  It was fun to celebrate!

I've continued to think about that parent's comment and my response over the last several months.  Here's the thing.  As parents, we celebrate a lot of "mundane, monotonous" things.  Potty training comes to mind.  My goodness - when Will was potty trained, I called grandparents and greats and friends and my sister in law.  We celebrated big time!  He got candy!  For using a toilet!  At some point, I stopped giving him candy every time he remembered to use the potty.  I suppose, it's even to the point of being monotonous.  (Although I don't take it for granted - I am so so so grateful he can use a potty!)  So we don't continue celebrating it, I guess.

Ellie has not yet mastered getting to a sit.  Typically, children master this by 6 months of age.  She will be 2 years old next month.  She has done it independently... a grand total of 6 times.  To say I am so ready to lose count would be a huge understatement.  She is so ready too.  It probably seems monotonous to celebrate each time she gets to a sit but it doesn't feel mundane to us... it feels like a culmination of lots of hard work and prayers and cheering loudly.  It feels celebratory each time.

I want my children to accomplish big things.  I want them to set goals and achieve them.  And of course we will celebrate those achievements.  But I'm not opposed to celebrating all the little steps on our way to the big ones.  I want a home that celebrates.    It's a whole lot more fun to be celebrating often than just holding out for the WORLD'S BEST _____ (fill in the blank) once in a lifetime achievements.  I prefer to think of it as celebrating the "first" in a series of lifetime achievements.  (First steps, first potty, first sit, first bike ride, etc.)  I kind of like living a life where we don't take much for granted... where we spend a lot of time hoping and praying for "typical" milestones... and then celebrating them.  It makes life more exciting.  And then those extraordinary milestones?  They are even more awe-inspiring when a child with differences accomplishes them.  (Can hardly wait to watch Oscar Pistorius run August 4 in the Olympics.. the "fastest man on no legs!"  Might just have our own family celebration that night for Oscar!)  I have no doubt my kids will do extraordinary things.  But I don't want them living life glossing over the little things just because they are holding out for extraordinary.  Little things matter.

When I was pregnant with Will, shortly after we learned he would have limb differences, I can't tell you how many people said, "We just know this child is going to accomplish great things."  R & I both felt like that was a lot of pressure!  I remember thinking what if he/she wants to be a sanitation worker?  What's wrong with doing regular, everyday things?  What if he/she wants to work hard at a 9-5 job and come home to a wife and kids someday?  On the other hand, as a proud mama to be, I thought, of course - all my children will accomplish great things!  I guess it seemed that my child would already have challenges just doing regular things in life... I hated to add to those challenges with the pressure to accomplish extraordinary goals too.  (Plus - that seemed like such an unfair prediction - like can't any child be destined for "greatness?"  Why put kids with limb differences on some sort of pedestal?) I do believe my children will do great things - I just am okay with those great things seeming "ordinary" as long as it brings them great joy and serves God and others.

What are your thoughts?  If you are raising a child with special needs or differences, what is your perspective?  Am I too defensive here?  Should I not celebrate things that most people consider "typical?"  Should I only "expect" these "monotonous" tasks and hold out on the celebrations for the big "once-in-a-life-time" feats?

4 thoughts:

Anonymous said...

I really loved this post. I have 3 children and my baby, Ulysses, has differences of all four limbs. He is 8 months old. He crawls now. I feel like we SHOULD have thrown a party. he wouldn't remember it, no. But I would. I remember how scary it was to learn about his differences. I remember when all the doctors we consulted with thought he would probably die soon after birth. I remember how I wondered how he would do anything at all, and would he have any "quality of life". And now, he crawls. Like a zillion other eight month old babies before him. The epitome of monotony! And yet, it's brilliant and amazing! And I am so thrilled to celebrate.

Barb said...

Love this post! We, too, had the "You Are Special Today" red plate that Mom pulled out for many occasions of celebration throughout our childhood. (In fact, she still does sometimes, and my sis and I are 31 & 32!) Teaching, working with, and encouraging our kids regularly is our job as parents. Your kiddos (and you!) work so hard to accomplish/master certain skills and that should be celebrated. Keep enjoying all of those 'red plate' moments. They're big. :)

ywilbur said...

Well I practically cry every time I watch JK sprint around the Martial Arts room running laps!

BANNERDAY: I love the name Ulysses! Ulysses Graham and Arkadius Graham were my 2 names for JK but I was too cowardly to tell the stern looking Russian judge I wanted to name my child Ulysses when she asked 'and what is the practical American name you have chosen for your new son' so I went with my 3rd choice. Jonas Kharan has a much different felling then Ulysses or Arkadius for sure.

Greatmomfish said...

Well, I for one have celebrated with a special prayer each morning when my kids wake up..."Thank you God for another day with these sweet blessings." That will never be mundane.

To add a practical scenario to your post...Luke is practicing standing right now and everytime he puts weight through his legs he has a room full of cheers....mundane - maybe, but I guess my emotions haven't caught on because everytime he gives his proud little look at what he can do I want to cry and say LOOK, LOOK what my baby can do....sure I'm holding his feet to the floor and sure I'm helping him lock his knees but who cares he can put weight on his legs and that is a reason to celebrate!

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