This past summer Connor hit another milestone – he no longer
fits in the seat of the grocery cart. There is plenty to celebrate with this
milestone. He’s a growing boy and while
still slender for his age, he is almost six. For part of his early life he had a hard time gaining
weight and doctors were starting to murmur about diagnosing him as “failure to
thrive”. Not wanting that label to follow him for his growing up years, we
added more Pediasure to his diet and pushed through impossible feedings until
he learned to chew and enjoy food. Now he often eats more than Clara at a meal.
Connor’s also come to the point in finding his voice that he has no trouble
telling us where he’d rather sit. He
almost always prefers his wheelchair to a stroller or cart.
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| April 2013 - At 18 months, Connor is finally able to sit in the front of a cart. A happy day!! |
So while I celebrated this milestone, it also marked the end
of something. I can no longer go
shopping alone with my son. I have tried.
I was a spectacle trying to push his wheelchair and pull the cart behind
me. We bobbed and weaved our way through
the store. People gave me sympathetic
looks and tried to get out of
the way. Connor showed a small interest in pushing the cart so we tried that
for about one aisle until I realized it was too absurd and slow to continue. By
the end of our shopping trip I was frazzled.
It’s been at least
two months since I realized he doesn’t fit in the cart and still whenever I think
about it I get so sad. Like really sad. I
hate that this freedom has been taken away from us. I hate that I can’t have
that one on one time with him. Connor likes going to the grocery store and now
we can’t do that when it’s just the two of us.
I hate that I have to schedule my shopping around not being alone with
my son.
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| Little guy loves going shopping with mama |
Since Connor’s diagnosis at six months old, Brent and I said
we were going to try to have as normal of a life as possible. For Connor, for Clara, for us. And honestly, it usually feels fairly
normal. We still do a lot of the things we’d do if
Connor didn’t have Joubert Syndrome. We
go out to eat, even though he usually cries or screams during meals. We travel, even though it’s much harder with a
child who is non-mobile. We go to the
park, play board games, adopt puppies and both parents work full time out of
the house.
And now there’s this one, really normal thing I can’t do with
Connor and it drives me crazy and breaks my heart. I just hate that Joubert
Syndrome limits Connor and limits us.
But we forge on. A
little sad, a little inconvenienced. I try to remember that Clara is the best grocery
shopping partner a parent could ask for and now she just has to come with us
all of the time instead of most of the time.
Or I go alone. Which is ok,
too. Or our local Target has a Caroline’s
Cart which is super awesome and helpful, so we can get some groceries there.
The little things matter. Both the little moments of joy and
the little moments of despair. I think it’s only fair to share our struggles
along with the victories.
