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I get it. I get all the Pinterest jokes. I totally agree it is causing many of us already stressed-out moms to feel like we are in constant competition to throw the perfect birthday party, make the perfect school snack and take the perfect family photo.
And yet, I will totally
own the fact that I am a Pinterest mom. I'm that lady. I threw my
daughter, Elyse, a superhero party for her 6th birthday and made
everything by hand. I create whimsical Halloween costumes. I make
occasion-appropriate snacks.
I do not do this to
bolster my flagging ego or to one-up my fellow moms. I do this because,
as a special-needs mom, there are a lot of "mom" things I am NOT.
My second daughter,
Anabelle, was born with the neurological disorders lissencephaly and
microcephaly. Lissencephaly means "smooth brain" and microcephaly means
"small head." What this means is that while she was in utero, her brain
stopped developing, due to a random miswriting of her genetic code. Now
almost 4, she is cognitively still a newborn. She cannot hold up her own
head, she eats through a gastronomy tube in her stomach, she requires
oxygen support when she sleeps and she cannot control her own body
temperature. She has quadripalegic cerebral palsy, is legally blind and
has severe epilepsy.
It is unsafe to have her
outside in all but the most optimum weather conditions, and it's risky
to bring her around crowds of people and all their germs.
Because of this, my older
daughter, 6-year-old Elyse, spends a lot more time at home than many of
her peers. There are a lot of things Elyse doesn't get to do. I am not a
"Let's join the traveling soccer team and spend hours every week on the
road" mom. I'm not a "Do every activity you want as long as you get
your schoolwork done" mom. I am not a "playdates every weekend" mom, a
"spectator at every event" mom or a "spontaneous family trip" mom."
(Hell, I'm not even a "well-planned vacation" mom.) Depending on
Anabelle's health, I'm not even a "tuck you into bed every night" mom.
I have forgotten to send
my daughter to school in a jersey on sports day, I have missed sign-ups
for things, and I have said no to classes Elyse wants to take because I
cannot possibly get her there every week.
When Anabelle was 6
months old and Elyse was 3, a friend sent me an "invitation" to join
Pinterest. It was like opening the golden gates to never-ending
possibilities for the trapped-at-home mom I so often was!
While I have always
considered myself passably crafty, what I am not is wildly creative. And
there it was: The ultimate guide to the perfect childhood! OK, I admit
that's overstating it a little bit, but I was a desperate, terrified,
newly inducted special-needs mom with a bored, over-active toddler on my
hands. Armed with endless ideas and step-by-step instructions, I could
create wonderful memories with Elyse despite rarely leaving home.
The thing many people
don't realize about being the parent of a special-needs child is that,
for those of us who also have kids without disabilities, it is usually
their well-being and future that cause us the greatest heartache.
Anabelle has never wanted for a thing in her short life. It is Elyse who
never has two parents at her side on outings, or may never get that
trip to Disney World she so desperately wants.
Elyse knows that only
one parent will be there for her school events. We are the family with
only one parent in the stands at sporting events and one parent in the
audience for dance recitals. In Anabelle's case, she is so susceptible
to getting ill that it just isn't safe for her to be in a crowd. Elyse's
father and sister were not at her last birthday party because it was
outside in the July heat, which Anabelle cannot manage.
Elyse does have to pay the price for having a special-needs sibling.
My typical child breaks
my heart much more frequently than my special-needs child. The needs of
my second child restrict the movement most parents of young children are
used to in their lifestyle, and that affects both my children. It is
for Elyse that I have to get creative in the ways I create memories.
It can be really hard
not having the time to be the mom I would like to be. But the one thing I
DO do? I spend a lot of time at home.
Anabelle's fragile
health means she lives in a virtual bubble a lot of the time. I might
not be able to run Elyse around doing fun activities and having
experiences outside the home, but I can create fun and memories inside
the home.
Elyse helps me with most
of my Pinterest-inspired activities. It allows us to bond and express
our creative energy. It allows me to contribute something meaningful to
her childhood beyond hospitals and therapists and holding the suction
wand for her sister.
So please, don't take it
as a challenge when my daughter and I make her teacher's
end-of-the-year gift. I'm just using what I have so my daughter has one
thing about which she can say, "Hey, MY mom does that!"
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