Pressure

I always thought I would be a cool mom. I thought my daughter would outwardly cringe at how embarrassing her mom was with “the Tauntes” or “Auntie C” (etc..), but inwardly she would love how hip I was.

I also thought that I would absolutely win the “best mom ever” award because of how encouraging I would be, and how I would allow my child(ren) to choose their own life path. I envisioned holding her hand for a little while, until she was old enough to make the tough life decisions on her own. And then, when the time came, I would rejoice with whatever she decided to “be”, and how she chose to get there.

Add this to the growing list of pipe dreams!

Ellie is only two years old, and Richard and I are already faced with some incredibly important decisions regarding the outcome of her life. This is profoundly more than hand-holding. This is all encompassing bear-hugging.

How much time and money do we put into Ellie’s therapy? Do we sign Ellie up for intensive summer camp ($1000), or consider hyperbaric oxygen treatments ($10,000), or stem cell transplants ($20,000)?

How many procedures should we allow the doctors to perform on Ellie? Do we allow the orthopaedic surgeon to inject Botox into her tight hamstrings? Do we allow him to surgically lengthen her tendons?

How hard do we push Ellie to accomplish physical tasks on her own? Do we force her to “walk”, or allow her to “rest” in a wheelchair? Do we require a certain amount of therapy each day, or should we ease off sometimes?

I realize that many of these questions aren’t yet directly posed, and we have time to figure out our answers, but they are just around the corner. So much for allowing my child to freely choose the direction she wants her life to go. Her mom may be part of the reason why she walks or uses a wheelchair. Gulp.

I am terrified of making the wrong decision. I read in a CP magazine about a boy whose parents decided that he should have tendon lengthening surgery, and during the operation, the anethestist administered the incorrect dosage, which left the boy with significant cognitive delays (which he didn’t have before the surgery). Could Richard and I live with this sort of outcome?

Furthermore, I am fearful of Ellie blaming me for making a wrong decision along the way. What if she wanted me to push harder for her to walk? What if she felt as though my forcefulness in therapy was too much? What if I scar her for life, both physically and mentally?

I realize that these fears are universal to motherhood. Every mom worries about the way she parents. My fears are simply elevated given our situation. I suppose that every mom, at some point along the journey, realizes that parenting is MUCH more difficult than she ever realized.

I suppose this is where faith and prayer comes into play. My fear brings me to my knees. I beg God to guide me (and Richard) in the decisions we make for our baby girl. I plead with Him to give Ellie a soft and forgiving heart, so that when I make a mistake, she won’t hold a grudge.

And, I hold onto hope.

Tulips and Clogs

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Mean Green

I may step on a few toes with the publication of this post, but since it's MY blog, I'm allowed to do that, bwa ha ha!

It's not very often that I say this: The Conservatives got something right!

Canada's federal budget was released yesterday. Of course, I disagree with many elements of the new budget, but there is at least ONE segment I support wholeheartedly: the levy on gas-guzzling vehicles.

The United States has, for several years, given tax incentives to citizens who purchase "environmentally friendly" vehicles. I think that's a definite step in the right direction. Canada has finally implemented the same measures, and one-upped the US by imposing a tax penalty upon citizens who buy vehicles who are "environmental devils".

I am NOT a tree hugger. I do not kiss the land or conserve water by flushing the toilet once a week. But, I do recognize that our material indulgence is threatening the viability of the planet. And I've NEVER understood why people would not only CHOOSE to drive huge vehicles, but actually emphatically WANT to! I have NEVER understood how people could convince themselves that they would not be able to fit their family of three or four in a "teeny tiny car" (ie: a mid-sized sedan). Our family, which includes a toddler in a bulky carseat, and a nearly 6'4" behemoth, fits perfectly fine in our compact car! Heck, we could even fit the kitchen sink into the trunk!

I believe that the North American attitude towards vehicles is a reflection of our out-of-control materialism. We have fooled ourselves into believing that we NEED to drive a big gas guzzler, because we'd never fit into something smaller! Just like our houses NEED to be over 2000 square feet, or else we'd constantly be bumping into the two other family members.

I realize that many people would respond to this post by saying, "It's my right to choose the vehicle I drive, no matter what the size!" You're correct. It IS your right. What's NOT your right, however, is how much that "freedom to choose" vehicle pollutes the air that I breathe. Or how that heavy and bulky vehicle puts extra strain on the pavement, resulting in (even more) terrible roads. Or how, if you lose control of that mama of a SUV, and hit my car, you survive and Ellie and I die.

Just my two green cents worth...

Shhhh!

I am breaking the law by scanning and posting this picture, so you will have to keep it a secret! Yet, given the fact that this blog isn't public domain (or so my computer-niave mind believes), I will cheat and post it here because I LOVE LOVE LOVE LOVE it so much!

Notice that my 2-year-old baby is STANDING! Amazing how such a "little" thing can mean SO much!

Like A Weed...

March, 2005

March, 2006

March, 2007

Happy Birthday Ellie!

Today is an emotional day. Two years ago today, I was in a hospital room, begging for more "juice" in my epidural. One year ago today, I thought that my broken heart was incapable of being fixed.

For those of you who don't know, or can't remember, we found out one year ago, on Ellie's first birthday, that she had cerebral palsy. What a way to kick off the celebration.

There are so many reasons for me to swim in happiness today. My sweet Ellie is a dream and I could not love her more. She has amazed everyone by her progress, both physically and mentally, this year, and for that I rejoice. Ellie is pickin' FUNNY, and she made me laugh so hard this morning, that I had tears running down my face (she was having a "conversation" with her new doll, and it was blasted hilarious)! Life as we know it in our little niche in Southeastern Manitoba, is great.

Yet, I wonder if Ellie's birthday will always serve as a remembrance to "the day". THE DAY we found out. THE DAY our lives changed forever. THE DAY I became completely broken. THE DAY that I had to start Revising The Dream...

Perhaps that's not a bad thing. Maybe it will be a reminder of how far Ellie's come. How far I'VE come. The desperation I felt on March 15, 2006 has washed away. I have started to heal. I have started to feel peace. What a gift!

Eventually, as the years pass, I would like March 15th to be a complete celebration of Ellie's life. I want to reflect on the day in 2005, when I gave birth to my sweet girl, not 2006, sitting in the neurologist's office. I think that will be possible. I believe that the memories of 2006 will fade.

But, today, I will hold the memories of one year ago as a reminder of how far we've all come. And I will look into my daughter's perfectly blue and sparkling eyes while I say, "I love you, Ellie," as I cry with joy and thanksgiving. I could not be more blessed.

The Sands of Time

You're Invited!

Man, it’s been a roller coaster of a week! As many of you read, a few days ago, I was pretty bummed about Ellie’s development, and threw myself a fancy dancy pity party. TODAY, thankfully, I’m throwing a very different party and you are ALL invited! I’ll even supply the pom poms!

We went to pick up Ellie’s custom pommel walker this morning. We’ve been waiting for it for nearly five months now. As we made our way into Winnipeg, I found myself refereeing between my heart and my head. I wanted so badly to be hopeful about this new device, but at the same time, wanted to guard myself against disappointment. As many of you know, that’s pretty much the story of my life these days.

Thank our good God that my expectations proved to be too low this time ‘round! We placed Ellie into her new walker, said, “Take a step, sweetie”, and off she went! Well, maybe that’s embellishing a bit, as she didn’t just zip to the other end of the room, but one foot went in front of the other and she WALKED. She took a dozen or so really nice steps, and enjoyed it! That alone is a first (she hated her other walker because it required her to hang on to handle bars, and she likes to have her hands free to PLAY)!

This afternoon, after we got home and Ellie had a decent snooze, we put her back into her walker, and I got even more excited! She, again, took quite a few excellent steps, and then she STOOD, with her own strength, in it for about half an hour. I had no idea she possessed that kind of stamina. If she’s able to stand and walk like that today, after owning this walker for a couple of hours, what will she be able to do in a few months’ time?! Eeeeek!

I realize that she has a long, long way to go. But, today, I am putting my fears of disappointment into the penalty box. Today I have unfailing hope. My daughter ROCKS!

The Green Door

(For those of you who are Canadian, do y'all remember the show called, "The Polka Dot Door"? Tee hee, now THAT would be fugly!)

Not lovin' it. Maybe I'm just hurt that the new owner changed things. Or, maybe I'm just not a green door fan.

Smarty Pants

I have a secret. It’s very difficult for me to reveal. But I think the time has come for me to be honest.

I think that Ellie has permanent cognitive delays.

There, I said it.

I want desperately to believe that she is intellectually normal, but as time passes, I’m not sure about some of her cognitive abilities. I absolutely HATE admitting it, because it makes me feel as though I’m telling the world that I think she’s dumb. Which is sooo not the case. I KNOW that sweet Ellie is smart. I know that her wheels turn. I know that she “gets it” a lot of the time.

I also know that she doesn’t “get it” as quick as other two-year-olds. As much as I try to avoid speculation about the future, I often wonder how she will perform in school. Or, more importantly, in every day living.

I’m fairly certain that she will communicate verbally, and that she will be a delightful adult, who is able to hold intelligent conversations. I’m not as certain about her ability to keep up with “normal” schoolwork, or be as responsible and independent as a typical adult.

Am I a terrible mother for admitting this? My heart wages a constant battle. On the one hand, I want to believe, like every other parent, that my daughter is the SMARTEST and PRETTIEST (which she is!) kid on the planet. On the other hand, I want to prepare myself for the possibility that the brain damage affected her intellectual abilities, and be okay with that.

I want to stop comparing. I’m so sick of the charts and the “what she SHOULD be doing” stats. I’ve long thrown out the physical milestone charts. I have come to a fairly peaceful place regarding Ellie’s physical disabilities, and (on most days) don’t have any sort of yard stick by which to compare. Ellie will physically develop in Ellie time. And I know that she may not develop some physical milestones at all.

Yet, if I throw out the “cognitive abilities” chart, am I not resigning myself to the fact that Ellie IS intellectually delayed? If we don’t compare her thought processes to those of a typical two-year-old, are we just saying, “We know she’s delayed in all areas, and we’ve accepted that”?

It’s so much easier for me to accept the fact that she may not walk independently. Wheelchair Schmeelchair. We’ll adapt. But, every fibre of my being wants my sweet girl to be smart.

I still hold out hope. Perhaps she’s slightly cognitively delayed RIGHT NOW, but will catch up by the time she’s in school. Oh, how I pray for that!

Oh, how I pray a LOT of things….