When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!
Many years later, when I was in my early 20’s, there was a
thought to revive this old tradition. Several of us were excited when Uncle
Victor suggested we hit the ol’ park again. My daughter was a toddler and I was
having a (very) difficult time with adjusting and accepting life as we knew it
but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with
my family. By this time, I was in a very deep depression over my
daughter’s state of health. She couldn’t sit on her own, let alone walk; she
was non-verbal so there were no first words or “mommy”; she was having seizures
that were progressively getting worse. When I was pregnant, as all moms-to-be
do, I had these visions and fantasies of how life was going to be. Her first
steps, first words, going to the playground together, shopping for school
supplies, sleepovers, giggle-fests…Everything crashed and burned the day she
was born. I found myself constantly running through flames, trying not catch
fire as I stumbled through the burning building that became our lives. Every
milestone missed, every specialist appointment, every “normal” kid who walked
by us was another spark, a new fire threatening to engulf me. I can tell you
that practically nobody in my life had even an inkling that I was feeling this
way. I’ve always had a hard edge to me and I’m sure I came off as angry or
bitchy. But I felt tremendously lonely and terrified and sad. These are still
feelings that stick with me today, thankfully not to the same degree, and I
know that the majority of parents who have children with disabilities know what
I’m talking about. I was having a tough span of days filled with these icky
feelings when I wrote “A Mom Missing Out On Her Milestones”.
It was difficult for me to enjoy the day at K.I.S.S. park even
though I had hoped that it would be a great day. There they all were, those
walkers & talkers, flitting about, eating burgers at the picnic table we
couldn’t get a wheelchair under no matter how we angled it, playing kickball,
just doing what normal people do at a park. Enjoying the sun kissed summer
afternoon, their laughter floating in the peaceful breeze as puffy clouds
gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft.
Velvety. Melodic.
All I could think
about was the uneven ground that I had to fight with the wheels of her chair.
There were tree roots and branches littered about, hilly sections, small
ditches and other barriers that come naturally in a park. We were supposed to
walk over to the canoe area – a walk that we always enjoyed in the past – but I
kept thinking about the struggle I would have pushing the chair over the grassy
areas to keep up with the rest of the group. Not to mention the uncomfortable
bumpy ride for my daughter who was sitting in
the chair! And what about the canoe ride itself? How were we going to safely
transfer her into the canoe when she can’t help at all? She can’t sit without
full assistance – how can we get her to actually stay in there? And if we do
manage all that and make it back, how will we get her out of it now that we’re
IN the water and the canoe is bobbing about?
These of course were only (some of) the PHYSICAL worries
that consumed me. I haven’t mentioned the bigger meaning behind the physicality
involved in bringing along a person like my daughter to a fun day at a park! Seeing
everyone else dashing about care-free made our reality (mine & my
daughter’s), our differences, actually palpable.
These differences weren’t just a notion. No, they were real; unquestionable;
cold and hard. The toll this takes on a person’s psyche is sometimes unbearable.
There are some days where I have to work
at keeping my joy.
She is now 15 and looking back I wish I had done so many
things differently. Isn’t that how it always is; 20-20 vision tends to be
perfect. Why did I allow myself to focus on the negative parts of the trip?
Thinking back on it, the only memories I have from that day is a sad game of
kickball (for me; everyone else was having a great time, as I should’ve been)
and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still
little so transferring is not the game of logistics it is today. But even
today, I have Nick Vujicic to remind me that pretty much anybody can get in
and out of water!) Because of my own personal issues, I didn’t allow myself to
enjoy what she could do. She was
having a beautiful time with her cousins even though she couldn’t run around
bases or get a turn throwing the boomerang and wasn’t that the point of the
day?
I find myself still paralyzed with fear to this day. I want
to do things or go places and decide that I will take her no matter what but then
I chicken out at the last minute. I start thinking about the things that can go
wrong – maybe there won’t be an accessible area for us to sit/stand; maybe
there will be steps we can’t get up; maybe it will be too crowded and she won’t
be able to see anything except strangers’ butts; maybe we won’t be able to find
parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building
that housed the resort’s pizzeria, arcade and ice cream parlor because it had
steps, even to the first floor!
But what if things like that don’t happen?? What if we go
and there is a spot waiting for us to park in, the venue has curb cut-outs and
ramps leading to it so we can get there and there’s a wheelchair-accessible
area so she doesn’t have to miss out on seeing what everyone else is seeing?
What about that?
There are some things that we just can’t do, for logistical
and emotional (on my part) reasons. We can’t go to certain people’s homes
because they're just not accessible. Taking the train into the city for a day of
sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach
from dusk till dawn with coolers filled with bagels, cold cuts and bottled
water – a thing of my past. But why should that stop us from creating
wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t – and it won’t!
Did you have fears or sadness surrounding family outings like
me? Do you still? What do you do to try to get past these feelings?
