...Don't Say Anything At All (A Continuation)

After writing my last blog entry, I got to thinking (I do that occasionally…). I realized that the subject of “inappropriate comments” includes many facets which I left unexplored.

Then, my sweet Peitricia Mae left a thought-provoking comment, which only solidified the fact that I needed to delve deeper into this topic.

I know that *I* say a lot of stupid things too. Perhaps my sensitivity towards issues of disability and a-typical children has increased, but that doesn’t mean that I’m immune to foot-IN-mouth disease. In fact, I catch that virus OFTEN.

For example, I know that I continuously say the wrong things to two people who are very close to me, who are both dealing with issues of infertility. They are both sweet confidants and I feel safe telling them what’s on my heart. So, they are often privy to my griping about the difficulties of parenthood. I know they love me, and they love Ellie, and I *think* there is a small amount of empathy in the fact that all three of us struggle with the knowledge that our dreams of motherhood have had to be revised to some degree.

Yet, they must sometimes think, “At least you HAVE a kid, Chrystie!”

And they probably feel the same way about ME as I felt about Jennifer.

Each one of us struggles with SOMETHING in life. Everyone has had to revise a dream in some way, shape or form. Some husbands suck. Sometimes being single sucks. Finding out that your unborn baby has a significant health problem sucks. Watching your mom die of cancer sucks. I don’t know if we can “rank” the suckage either. Is a failed marriage easier than raising a disabled child? I doubt it.

So, Peitricia Mae, to answer your question of how to “recognize differing abilities without a) ignoring the difference b) pretending it isn't there?”, I say this, and note that it’s derived solely from personal preference: Talk about your problems (in this case, parenting issues as they pertain to perfectly “normal” and healthy kids) freely, but don’t ever preface it with a “You’re so lucky you aren’t dealing with this…”

I LOVE hearing about my friends’ chillin’. I especially love stories of H and E. I laugh wholeheartedly with each one whose kids say funny stuff (“Mom, dad’s busy, he’s on the can.”). I love knowing when your kids excel in school, and when they’re the only ones wearing sweat pants and runners to “ballet” class.

Just don’t ever say, “You’re so lucky that Ellie doesn’t say inappropriate things.” Or, “You’re so lucky that you don’t have to discipline Ellie for sticking her finger in the electrical socket.”

I HOPE I’ve learned this lesson for myself. You will never hear me say, “Oh, at least now that you’re divorced, you don’t have to deal with cleaning up the dirty socks off the bedroom floor.” Or, “Since you can’t have kids, at least you don’t have to worry about sleep deprivation.” Because just as I would give anything to be embarrassed by something Ellie SAID or to give her a time out for WALKING over to the outlet, so, too, would my girlfriend give anything to clean up dirty guy-socks or wake up at 3am to feed her baby.

If You Don't Have Anything Nice To Say....

Why are some people so insensitive?

There is a new boy in therapy. His name is Matthew. His mom’s name is Jen. It took me by surprise when he WALKED into class. Upon further observation, it became evident that he has a very mild physical disability, and I understood why Jen wanted to join our therapy session. I will admit that I was a tad jealous, as Matthew is MUCH more physically advanced than Ellie, but those are MY issues (and material for a separate blog entry!).

You’d *think* that a mother of a special needs kid would be super sensitive, and think before speaking, but apparently, that’s just my silly assumption….

At the end of class, I decided to feed Ellie a quick yogurt snack, as I needed to run some errands before driving home, and didn’t want a hunger-induced tantrum to happen at Wal-Mart. It’s faster, easier and neater for me to feed Ellie myself, so I propped her on my knee and started shoving the yogurt in her open-like-a-baby-bird mouth.

And then I heard THIS, from across the room:

“Aww, look at how sweet she is. I wish that Matthew would sit still like that, and wouldn’t always try to take the spoon away from me so that he can do it by himself. I miss those days. You’re so lucky.”

Um.

I’m LUCKY because my daughter can’t jump out of my lap? I’m LUCKY because my daughter doesn’t have the hand dexterity to feed herself with utensils? ARE YOU FOR TRUE?!

It got me riled up (what a surprise!). This is one of MANY comments I’ve heard that start with, “You’re so lucky….”

“You’re so lucky that you don’t have to babyproof the house.”

“You’re so lucky that you don’t have to listen to constant blabbering all day.”

“You’re so lucky that you don’t have to discipline your kid for taking someone else’s toy.”

I would give my right (and left) arm to chase Ellie down, or to hear her sweet voice jabber in English sentences (French or Spanish would work too).

I just wish people would think before they speak. Think about the BLESSINGS of their healthy, mobile, talkative kids.

And by the way, it has nothing to do with luck.

Look Look!!

I now know how to post videos! Just call me a computer engineer.

I know it's a bit old, but I love this one of Ellie in her walker for the first time.

This "Learning to Feed Yourself" Thing May Take a While...

Book Worm

Seriously. Ellie's favorite thing these days is to be read a "beb" (book). Or, in this case, "read" it to herself. And did you know she was bilingual? Problem is, I'm not sure if anyone else understands her "other" language!

Little Miss Ellie is Standing Sooo Well!

I Remember Thinking....

...how envious I was of Sharon.

Sharon is my mom and dad's neighbor across the street. When I came home the first time with Ellie, in June of 2005, I remember watching Sharon plant petunias in her front flower bed.

I saw her walk outside with her baby monitor and place it on the top step, turning up the volume. Then she dirtied her hands in the soil and started digging holes for the roots. Happy as a clam. No worries. Her perfect 8-month-old sleeping in his crib for most of the afternoon.

And I was so jealous. So, so, so jealous.

Because I was watching her from the living room window, while I feverishly rocked back and forth in the glider, praying that my wailing daughter would sleep in my arms. Praying for five minutes of peace. Just FIVE MINUTES.

I remember the tears streaming down my weary face, and saying, "I'll NEVER be able to plant flowers again."

I truly thought I would never have a "normal" life again, that I would never have moments of peace and happiness. That my baby would never stop crying or learn to sleep in her crib. That I would never grin from ear to ear again, or laugh till I cried.

Looking back now, of course, I realize that I was in the deep dungeon of post partum depression and that my daughter was dealing with much more than "just" colic. And, thank the GOOD, GOOD, GOOD Lord that those days are long gone. Yet, a part of me wants them to remain close in my memory. Those dark days made me a better person. They gave me a sense of empathy and understanding I would not have had otherwise. They make me so much more thankful for the happiness I feel today. They make me want to pray steadfastly for new moms.

And, now, I will put on my gloves and grab my hoe. I will fetch the baby monitor and bring it outside with me as I ready the flower beds for planting. And my heart will smile and be glad.

Good Ole Hockey Game...

Happy Birthday to me! Last Saturday, April 7th, "the fam" and I went to watch the Canada vs. USA women's hockey game. It was the perfect birthday present! We, of course, had to take Ellie, and deck her out in a "Can-Am" t-shirt. I told her that she could cheer for EVERY goal! She had a BLAST, and it was a fantab game. Can't get much better than hockey in April.

Oh, and CANADA WON!

Fair Shmair

I went to renew my driver’s license today. And, indicative of my wacky life, I had a “moment” at the insurance agency.

Ellie was along with me, being a wiggle worm in her stroller. As I approached the insurance agency building, I realized that I would have to maneuver up two rather steep steps. This is highly annoying with a 10 pound stroller, carrying a 30 pound girlie.

Then it hit me. How would Ellie ever make her way into this building in a wheelchair?

My first emotion was anger. Why would you not make your entrance wheelchair accessible? Doesn’t the law make it mandatory? (Said insurance company had opened a new office in this building only two months ago, so current building codes would certainly be in effect.) I wanted to boycott the company! But, before leaving to patron their competition, I wanted to march inside (after awkwardly fumbling the stroller over the stairs and grappling with the non-automatic door), raise my voice and yell at the owner!

Instead, I simply fumbled and grappled, and stood in line to pay for my driver’s license. I gave the agency my money, said thank you, and fumbled and grappled my way out. Not because I was afraid of raising a stink or drawing attention to myself, but because I didn’t want to deal with it internally.

I don’t want to think about the future involving a wheelchair. I don’t want to imagine how I’m going to run errands with Ellie. I don’t want to plot my route according to which stores have handicap accessibility. I don’t want that to be MY life.

But what if it IS my life? More importantly, what if that’s Ellie’s life? I can choose to run my errands or shop without Ellie. However, Ellie will never be able to escape it. If she ends up using a wheelchair, she will have to be forever mindful of entrances and elevators, of parking spots and aisle widths.

It’s amazing how your life lenses change when you have a disabled child. Three years ago, I would have rolled my eyes at the required “excessive and expensive” handicapped accessible building codes. I would have curled up my nose in jealousy over the “awesome parking spot” someone snatched, simply because they had a handicapped sticker.

Now that accessibility is hitting so close to home (heck, it’s hitting INSIDE my home!), I’m singing a different tune. It’s NOT fair that Ellie would have to drive an extra three miles to find an insurance agency that has a wheelchair ramp. It’s NOT fair that Ellie’s Sunday School class will have to meet in the boiler room, because it’s the only classroom on ground level. It’s NOT fair that Ellie may not have a junior-high locker beside her friends’, because she’ll need one downstairs.

I realize, of course, that Ellie is the far minority, and that it may be unreasonable to ask churches and schools and stores to spend tens of thousands of dollars on their buildings in order to accommodate her. As a parent, how passionately do I fight for these things? At what point do we sigh, and simply come to terms with the fact that life ISN’T fair?

I've Never Really Thought of That Before...

My dream phrase!

I’m not referring to ignorance or stupidity. There certainly are things that everyone SHOULD think seriously about (that’s an entire blog entry in and of itself!). However, I often wonder if I think TOO much. Not about politics or world hunger. About things I have no control over. About the future. About scary things.

For instance:

Mysterious Acquaintance: Chrystie, have you ever thought about how difficult it will be to carry Ellie around once she’s 50lbs?

Dream Answer: I’ve never really thought of that before!

Truthful Answer: Why yes, MA (Mysterious Acquaintance), the thought gnaws at me. In fact, I’m often concerned over how much Ellie eats every day, for fear that she will gain weight faster than needed. Because the solution to this “problem” is to put a perfectly healthy two-year-old on a diet. Uh huh. Don’t you wish you could live a day in my warped mind?

Mysterious Acquaintance: Chrystie, do you ever think of how you’d manage if Richard suddenly became unemployed?

Dream Answer: I’ve never really thought of that before!

Truthful Answer: Even though there’s not ONE indication that a lay-off is coming, I think about this possibility at least once a day. I’ve always sided with paranoia on this issue, but it’s escalated since I became a stay-at-home mom. I feel guilty for not contributing to the joint bank account. I feel that by relying completely on Richard for financial security, I am allowing the situation to slip through my fingers. And I HATE being out of control.

Mysterious Acquaintance: Chrystie, do you ever feel cheated that your uterus is a piece of crap?

Dream Answer: I’ve never really thought of it before!

Truthful Answer: My friends are having second (or third….) babies now. I’m not. I can’t. For some strange reason (grace?) I don’t blame God for my body’s failure. I don’t blame ANYONE. I just feel a tad bitter. Not a lot. Just a tad. If adoption weren’t so expensive, I’d feel less sour. It irks me that I’ll have to pay $20,000+ for each of my children (although, at least they’ll both know they were passionately wanted!). I know that they will both be worth every penny (Ellie already is!), but it would be a lot more fun to blow $40,000 on a European vacation.

Of course, I realize that the tables could turn, and the conversation could read as follows:

Mysterious Acquaintance: Chrystie, do you realize how blessed you are, to raise a daughter who teaches you patience and perseverance in an incredible way? And to be married to a genius, who is valued by a great company? And to have the resources to expand your family, regardless of non-working girlie parts?

Dream Answer: I’ve thought about that constantly!

Truthful Answer: I need to write it on my heart and think about it unceasingly.

It's Raining, It's Pouring...