I really thought I would have
written a short book by now. It’s on my ‘to do’ list. Ha. I really think it
should be called ‘the junk drawer list’, because it’s just like that drawer in
the kitchen that catches all your stuff. You know, the bottomless crapfest
you open when you’re “cleaning” in order to toss the stuff you want to organize and put away (there’s just no
time!)…the seeming treasures you’re not ready to throw in the trash just yet.
“I still need it,” you justify to yourself. Or, “I’ll get around to it.” And
eventually the drawer won’t close anymore. Or you have to shove everything down
in order to get it to shut.
Yeah, that. My life is kind of like that junk drawer lately. Which isn’t bad. I mean, that drawer does have some cool stuff. Ever dig around and find a
gift card you forgot you had? Or a rad package of stationary? Or something your kid handmade years ago? Yup, that’s my
life.
That book is still in there, too. And I’ll pull those good intentions out of the
drawer soon enough. I WILL.
Liv is 10. I’m blown away by all that has
happened since she was born… to me, to our family, to Olivia. FOR us. The
time has gone extremely quickly, yet excruciatingly slow at times. Time has
power like that; it seems to hold abilities that no other entity could dare
match. A friend and I were talking about how “Time”, as compared to a person,
never takes a break. Never stops or hiccups or sneezes, even. It’s an
overachiever, much like that guy in your class that sits up front every day.
“Weren’t we supposed to have a quiz today?” Take it easy, Time, you’re making
the rest of us look bad.
Time is also that guy who shows
no mercy when you need it most. “I wish I could turn back the clock,” we’ve all
said. And haven’t we all wanted the world to stop spinning, if even for just a
moment, to allow us to catch our breath? And when it doesn’t, we get overwhelmed.
Because we have to move with it. Time
takes us along for the ride, whether we want to go or not. Hmmmm…kidnapper,
maybe?
Time strips us of loved ones, faculties, our lives as we know
them.
Then again, Time can be our best friend, our salvation. We can
all relate to ‘the best of times with friends’ and ‘the passage of time helps
to heal’.
Such an enigma, that Time fella.
As I reflect on the last 10 years, I’d like to offer up some things I’ve learned. Nothing earth
shattering, I’m sure, but bear with me as I rummage around in this junk drawer...
1. Having a child who experiences disability isn’t the worst thing that could have happened to our family. I remember thinking it
would be, if it ever happened. And it was, when it did. But on the contrary,
having Olivia has done nothing but strengthen our family dynamic and add a bit
of uniqueness and FUN.
3. Some people will always be
ignorant or downright mean, and I have to accept that. Ignorance is tolerable. Meanness...not so much. This is a toughie
for me. Probably the toughest. But effective advocacy has taught me how to respond...how to feel, even. Ultimately, if someone wants to be a jerk, that says way more about them than my daughter.
4. I rely on my friends. They are everything.
5. Olivia has shattered
stereotypes that I’ve bought into my entire life. Her life and
attitude are examples to me, as she learns more every day. The kid reads and is in her gen ed class. She's in ballet and tap. She's involved in theater. She’s doing things I seriously thought
she’d never do. I get angry with my former self for being so ignorant and
expecting so little of her. But it reminds me where my mind was then…and that
many people are stuck there. I guess it makes it a little easier to forgive
people.
6. Watching Liv's sisters learn and
grow is icing on the cake. Kids are amazing, compassionate, and inquisitive creatures. Of course, they’re sisters first, and they do fight a lot. And I’m glad, because it
represents a typical sibling relationship. Someone asked me just the other day
if Amelia knows that Olivia has Down syndrome. Or if she understands what that
means. Funny thought, but I suppose it means different things to different
people. To the ignorant person I used to be, it meant the person had a sad
existence and would amount to nothing. To Amelia, it’s just a term. If she
hears it, she just says, “Ok, whatever.” Olivia is just her sister. That
innocence is so refreshing. And let’s face it: in that regard, she’s learned
far more than the typical population.
7. I don’t have to be a perfect
mom, but I have to try. My kids deserve that. Advocating and educating for Olivia is a big part of that, but I can’t ignore my other kids' needs. Balance.
8. It’s easy to get wrapped up
in Down syndrome. Don’t do that. If a kid doesn’t show up
to the birthday party, or if someone seemingly looks at your family in a
curious way when you’re at Target…IT DOESN’T MEAN THEY ARE DOING IT BECAUSE MY KID HAS A DISABILITY. Simmer down.
9. Communicating is an art.
Glad I studied it in college. To advocate and educate,
speak as eloquently as possible. If you’re angry, try to keep your cool. If you want
to make an impact, you have to be taken seriously. Effective Advocacy.
10. It’s fun to celebrate the
milestones you once thought were “little”. First steps, words,
that moment she says “mama”… Nothing should be taken for granted. Feels good to
realize that perspective.
11. Olivia can put her toes in
her mouth. She can contort her body in the weirdest of ways, and it
mostly entertains us.
12. It’s ok to be happy for
friends whose kids are typically developing. Or excelling, even. It's also okay to be sad. I admit, this one
has stung me before. I don’t like hearing that “my 12 month old can speak
fluent Spanish”. Ok, I’m exaggerating. But the point is, I just have to get
over it. Child development is not a competition. Everyone’s kids are precious and doing exciting things in their own time. Shouldn't that be celebrated?! I say, brag on. And I’ll do the same.
13. Having time for yourself
and as a couple is vital. VITAL. Make it happen.
14. We’re all in this together. I’m just a big
hippie at heart, but I think it’s important to remember that a community is strong (or weak) depending on the behavior and attitude of its citizens.
Basically, uhhhh, don’t be a jerk.
15. Our family is just like any
other family. No, really. I know it’s difficult for people to grasp
that. But it’s true.
16. Time has been my biggest
enemy and my best friend. Remember when I said it has moved exceedingly fast yet
excruciatingly slowly? Yeah, that’s true. Olivia’s birth day in 2005 was one of
the most difficult days of my life. As well as her open heart surgery date. I remember wishing that time to be gone,
because I knew things would get easier. I was right about that. But watching
time fly by is so bittersweet.
Time to close the junk drawer; sorry for the spillage. Feels
good to look around in there, though. Now, if I could only find that book…
Comments
Post a Comment