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 intentions. 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.
My life is kind of like said 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? Yup, that’s my life.
That book is still in there, too. And I’ll pull it out of the drawer soon enough. I WILL.
Liv turns 5 years old today. I’m blown away by all that has happened in the last five years… 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 angry. 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.
In honor of Olivia’s 5th Birthday, and as I reflect on the last five years, I’d like to offer up some things I’ve learned. Nothing earth shattering, I’m sure, but bear with me as I open my junk drawer…
1. Having a child with special needs 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.
2. Having a child with special needs can suck sometimes. This contradicts my previous point, doesn’t it? Let me explain. Olivia is amazing. Having her in our lives is wonderful, but society’s limitations for her make it very difficult sometimes. I’m talking friendships, education, traditional social conventions, job placement and her future… We, as a collective people, put others in boxes. And the stereotypes that come along with the ‘Down Syndrome Box’ are very limiting. And frustrating. And mostly wrong.
3. Some people will always be ignorant or downright mean, and I have to accept that. This is a toughie for me. Probably the toughest. In fact, I still haven’t learned it. My mom once said to me, as I was struggling with someone’s behavior, “You can’t control other people’s actions, Dear. Just your own.” She’s right. And I have to repeat this mantra daily.
4. 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 is reading sight words. And she’s potty trained. 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 at first. 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. Because I can relate.
5. Watching Amelia learn and grow is icing on the cake. This kid amazes me with her compassion and patience for her little sister. 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.
6. I don’t have to be a perfect mom, but I have to try. My kids deserve that. All (almost three) of them. Advocating and educating for Olivia is a big part of that, but I can’t ignore Amelia’s needs. Balance.
7. 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 YOUR KID HAS DOWN SYNDROME. Simmer down.
8. Communicating is an art. Glad I studied it in college. To advocate and educate, speak as eloquently as possible. If you’re angry, keep your cool. If you want to make an impact, you have to be taken seriously. Believe me, I’m still perfecting this.
9. 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.
10. Olivia can put her toes in her mouth. She can contort her body in the weirdest of ways, and it mostly entertains us.
11. It’s ok to be happy for friends whose kids are typically developing. Or excelling, even. 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. Everyone’s kids are precious and doing exciting things. Should that not be celebrated?! I say, brag on. And I’ll do the same.
12. Having time for yourself and as a couple is vital. VITAL. Make it happen.
13. 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 can be strong (or weak) depending on the behavior and attitude of its citizens. Basically, uhhhh, don’t be a jerk.
14. Our family is just like any other family. No, really. I know it’s difficult for people to grasp that. But it’s true.
15. 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. But, my gosh, that was five years ago. 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…