Smelly Cat

My precious friend, Laura, warned me about this blog. She said that reading it would make me bawl. Perhaps she even used the words “ugly cry”. As usual, sweet Laura was right.

I read this blog yesterday morning, and haven’t stopped thinking about it since. For reasons that are much more complex than “heart-wrenching” and "touching".

I am so in awe of Angie’s ability to paint a picture of heaven through her ordained words. Her writing is inspirational on a level she likely doesn’t realize. Oh, how I’d love to express myself the way she does. What an undeniable gift.

I am also completely astounded by Angie’s faithfulness in our Saviour. I want that. Oh, how I want that.

I’m almost embarrassed to compare “my” story with any of Angie’s. Every day I realize that Ellie’s life, no matter what obstacles she may face, is a miracle. I know that Angie would give all four of her limbs if it meant that Audrey would be LIVING with cerebral palsy.

So, for me to compare my emotions to hers is near blasphemy. I realize that.

But, how, then, can SHE find such solace in Jesus, when I continue to search? My breathing, speaking, preciously sleeping daughter is in the next room, and I continue to hunt for peace and acceptance in the Joygiver. Angie’s Joygiver.

I have often wondered if I emit the fragrance of Jesus when I’m sitting in a doctor’s office with Ellie, or when I’m bearing my soul to one of our therapists-turned-confidantes. I want to. I want their noses to tingle with the smell of a loving and faithful Maker. I want them to talk about us when we leave, saying, “Wow, I’ve never met a family so at peace, in spite of dealing with a severe disability.”

Yet, deep down, I realize that, if I smell fragrant in any way, it’s only because of a temporary smile that masks the odor. Just call me God’s “Glade Girl”.

I’m not a very faithful follower, because I spend a lot of my time questioning and worrying. I don’t leave Jesus in the doctor’s office, because I feel He's left ME. I shouldn’t BE in the doctor’s office to begin with. I don’t find comfort in His presence when I’m told that my daughter will never walk. I can’t leave behind a sweet aroma when my heart is dead and beginning to rot.

Yet, I know that Jesus loves Ellie. I know He loves me. I know He continues to love his sweet angel Audrey. I know that He has gone before me and that He can bring me joy. I’m just not sure how to trust Him ALL the time; how to grab onto His faithfulness during times of grief. The way Angie has.

Of course this has nothing to do with Angie. She was a God-given catalyst yesterday, and her appointed words were meant for my eyes; for my heart. See, yet another poignant example of God’s faithfulness at work! This is about ME, and my relationship with my Saviour.

I just really want to know Him more and feel Him in my heart. I want Him to use Ellie, and me as her mom, to glorify Him. I can’t do this without Him. I can’t cry for the future, or for the “what could have been”s for the rest of my life. I want to find joy in the mire.

I wish I knew how to get there. I wish I knew what it takes to meet God in that heaven-on-earth place. Because I want to, with meaning and unabashed belief, say,

Blessed Be the Name of the Lord.

And smell really, really good.

Cuteness to the Max

We found the most amazing tricycle for sweet Ellie! It's got a strap across her waist, and then Richard, being his awesome Tim The Toolman self (not to be confused with Martha Stewart, of course), added straps and soles to go around and over her feet. As you can see, the girl LURVED it, and I personally don't think she could be any cuter! Sometimes it's just fun to buy a "normal" toy for a "normal" 3-year-old at a "normal" Toys R Us.

Best. News. Ever.

I'M GOING TO BE AN AUNTIE!!!!!!!!!!

I can finally shout it out to all my bloggie-friends! My sweet sister is preggers! I am beyond thrilled, as Ceese (what Ellie calls my sister) has wanted this for a long, long time. I am selfishly pumped because I get to spoil another baby and Ellie will have a precious cousin to hang out with. It is MUCH, MUCH happiness!

Ellie's cousin is due to arrive at the end of October, and of course, we're praying that s/he bakes till the very end.

Yay, yay, yay!

I *KNEW* I Forgot Something!

So, we went away to Grand Forks, North Dakota (you are ALL jealous, I can tell!) for the Canadian long weekend AND WE FORGOT OUR CAMERA!! Since I am such a devoted blogger, I was incredibly disappointed in this misfortune because I was wanting to post the weekend pictures on here!

Needless to say, we had a great time, hanging out with Mama, Papa, Ceese, Dodo, and Ceese's baby. Ellie swam like a fish and decided that since she was on vacation, she should also be able to sleep in the same bed as Mommy. Good times. It was a much-needed break from work and life and computers and surgery-thoughts.

Since it's about time I post some pics (the reason why the camera was supposed to come along with us, grr!), I figured I'd search in the recent archives and pacify my readers that way. Enjoy!

Ellie hard at work with her physical therapist at Children's Hospital:

When Richard's mom came up last month, they went on a local sightseeing escapade while I brought home the bacon (ha!). Here's a few pics of Ellie in front of the signature windmill at the Mennonite Museum. Yeah, it was a bit windy that day....

Looking contemplative in her red wagon (always my favorite place to figure out life's problems...):

And We All Know What Happens When We Assume...

Every few months, these STUPID emails slip into my inbox. I hate them! HATE, HATE, HATE them. I have even asked Pampers to take me off their mailing list, but to no avail. It makes me want to boycott buying their product (but, dangit, they fit Ellie best!).

Each time one of these "Parent Pages--A Monthly Guide to Your Child's Development" bypasses the spam filter and makes its way into my inbox, my heart aches. I try to press "delete" before I read 'em, but often the title alone takes my breath away.

I KNOW I'm not the only one who loathes these "milestone marker" emails. How many excitedly pregnant women have signed up for the "This Week In Your Pregnancy" updates on the Pampers webpage, only to miscarry a few weeks later? How many other parents, whose children are obviously not hitting the "NORMAL" milestones cringe each time they find one of these messages in their inbox?

And, today, how many women who are desperately trying to conceive a sibling for their 37-month-old, cried inside when they read the title of one of the Pamper Pages articles:

Having Another Child?
When Mom's Expecting
An optimal age for a child to experience a new sibling is between 2 and 4 years. The older child can become a nurturer by imitating the parent. A pregnant parent can share the excitement and anticipation of pregnancy.

It just angers me to the core when companies such as Pampers generalize and assume. They ASSume that my 37-month-old will love to learn how to play tag. They ASSume that my 37-month-old has a problem with getting out of bed and walking into my room at night. They ASSume that my uterus works and I'm planning on bearing another child sometime soon. They ASSume that my 37-month-old should have the vocabulary to sing her abc's.

Well, you know what? Assume that I no longer want your stupid emails.

Sometimes It's Nice To Know You're Not Alone

Not that I would ever wish these decisions or heartaches on anyone, but if the world's gotta semi-suck, then it's sadistically comforting to know I'm not tromping through the crap all by myself.

Case in point:

Hard Choices About a Child's Special Needs
By Jeff D. Opdyke

Marsha, Marsha, Marsha!

As I was paging through the Free Press this morning, I came across this satirical cartoon, and stopped in my mindless reading tracks.

How true. How sadly true.

I have been so very self absorbed these past few weeks. MY problems are more significant than yours. MY situation with Ellie's surgery trumps anything *you* could possibly be going through. ME, ME, ME.

My life is so very good. I am blessed beyond measure and the mere fact that we can even consider costly non-life-saving surgery for our daughter is an incredible gift. We could sell our house, collect the equity to pay for Ellie's surgery, rent a one-bedroom apartment and STILL live a financially better life than 90% of the world's population. We still wouldn't be faced with the question of where our next meal would come from, or how we'd be able to afford clean drinking water.

I hate how easily I get consumed in my selfishness. I hate how easily I forget how good I've got it. I hate how easily I succumb to the pressures of consumerism and want more, more, more.

I've really tried to take myself off the pedestal today. I don't deserve to be there. It's amazing how thinking about and praying for others can calm my heart. For the first time in a week, I've really felt as though things will work out with Ellie's surgery; that we'll come up with the money, and that it'll be okay.

What Would You Do?

Those of you who know me well already realize that I've spent the last couple of days in a dizzying, all-consumed thinking haze. I've had three near sleepless nights, trying to figure out how we're going to make this surgery work. OF COURSE, I realize that *I'm* not the one who has final say, and that this is an opportunity to put some hardcore trust in God. However, knowing something and FEELING something are two completely different things.

As I've been playing out different scenarios in my head, I'm starting to wonder if we're going to be faced with a really difficult decision. Okay, ANOTHER really difficult decision!

Selective Dorsal Rhizotomy is a surgery that is offered in hospitals other than St. Louis Children's. In fact, I believe that there is a doctor in Vancouver, BC who also performs the surgery. SDR is also offered at Shriner's Hospital in Minneapolis (a couple of kids who go to Ellie's therapy center have had SDR there, in fact).

The difference between Dr. Park in St. Louis and other SDR surgeons is in how the surgery is performed. Dr. Park cuts less nerves in the spine, and the recovery time is much shorter. According to Dr. Park, and outside research I've performed, here are the benefits to *his* SDR technique over the others:

Reduced risk of spinal deformities in later years
Decreased postrhizotomy motor weakness
Reduced hip flexor spasticity by sectioning the first lumbar dorsal root
Shorter-term, less intense back pain
Earlier resumption of vigorous physical therapy

I have to inquire of our doctors as to the validity of these claims, but from what I can tell in my initial (and non-medically trained) research, these are pretty accurate points. Also, from what I can tell, Dr. Park is *the* best SDR surgeon in the WORLD. He's performed over 1600 of these surgeries. Of course, I'm not sure how experienced doctors in Minneapolis or Vancouver are.

Here is the kicker, and where the decision becomes TOUGH: The surgery in Canada or Minneapolis would likely be FREE. Seriously. Shriner's even pays for transportation, hotels and meals.

So, assuming our insurance won't cover a dime of the surgery in St. Louis (which I think will be the case because a form of it IS offered in Canada), is it worth $40,000 to go there, to Dr. Park? Or should we go the "free" route?

It seems sick and wrong to be factoring cost into the medical care of my precious kid. I hate that it's a consideration. But, it IS.

So, what would YOU do?

Drumroll...

This is what came in the mail today:



THANK YOU, JESUS!!

As you can imagine, I am emotion-crazed after reading this letter. I am most definitely thrilled and excited, but I also find myself a tad disappointed in the fact that even with the surgery, they don't think that Ellie will ever walk independently. I'm also scared. Really scared. I know that we need to pursue this. I know it means that my daughter will undergo major neurosurgery. I know it means that we have a lot of work ahead of us. Yet, when the fear starts flooding over me, I just go back to that initial feeling of elation and relief. My baby can be helped. That alone is amazing, and I fall to my knees in pure gratefulness.

'Course, part of that fear is in response to page two of the letter:

Gulp.

I have no idea how much of these expenses, if any, our Canadian insurance will pay for. We have lots of calling and letter-writing to do. Today, I am going to focus on the miracle of this letter, and trust that God will make a way for Ellie to get to St. Louis.

God is faithful.

Email From St. Louis

Hi Chrystie

I got the packet and Dr. park has it. He’ll probably screen your child some time next week. I know the wait can be hard, but he tends to screen a number of them at one time so I hope that within a week or so I’ll have answer for you.

J

So, we'll keep waiting and praying. And praying and waiting. And...

I Totally Moved Back Home For the Weather...

Just when I was starting to get sad that winter was ONLY 8 months long... Gotta love it when the snow falls in MAY. (Grrrrr!)

Richie and Ellie made a little video for "Mama" (Southern Grandma):



(Notice the two big-butt trucks in our neighbor's driveway. Another GRRR! I was talking about YOU in my last post, Mister Neighb!!)

Politics Schmolitics

It’s been a while since we talked politics, which, of course, PAINS me. There’s no need to worry that I’ve been so consumed with life that I've had to put politics on the back burner. Never fear! I am as left-leaning fiery as ever, it’s just been difficult to find time to blog.

Today, unfortunately, is no exception. I only have a few minutes of blog-time, so I will bullet-proof the political issues most plaguing my thoughts these days:

*WTO (World Trade Organization). I’ve been anti-WTO since my early days in university, studying developmental politics. It’s ridiculous to think that a globally sanctioned (well, realistically, it’s more WESTERN-sanctioned, which is all that matters in the world of developmental organizations) supports anti-agriculture policies in developing nations. The WTO has been DISCOURAGING impoverished countries to grow their own food, because, in their opinion, importing cheap food from overseas was the answer to the world’s hunger. Well, hit me with a hot note and watch me bounce, this policy is coming back to bite the overly-compensated scientists and politicians in the butt, isn’t it? A part of me wants to scream, “I told you so!”, but at what expense? The fact that MILLIONS of people are starving does not make me feel vindicated.

*Immigration. Did you know that sneaky-snake Stephen Harper hid an immigration bill in the budget last month? Oh yes. Bill C-50, if passed, would give the Minister of Immigration God-like control over whose applications for immigration are accepted and expedited. It’s pretty terrifying to think of a right-winged, Capitalist-crazed, power-hungry politician holding the key of entry into our country. Unless, of course, you agree that anyone who looks differently, thinks differently, prays differently, and has no formal education, should be pushed to the back of the line.

*SUVs and not-for-farm-use trucks. I know a lot of you readers, some of my dearest and sweetest friends, drive SUVs and trucks. I’m not trying to step on your toes, and I respect everyone’s freedom to choose what type of vehicle they will drive. But, I have to admit that I would throw a huge party if there was a moratorium on SUV manufacturing. I’m selfishly hateful of the gigantic pieces of steel because THEY are part of the reason why I’m paying more to fill up my compact car, by increasing demand for fuel. It also hurts my heart to think that our society has become so very wasteful and entitled. SUVs are so disproportionate to what we need. I can’t tell you how many childless couples own SUVs. WHY?? I can understand the need for vehicle space when you have 3+ children, but for any family smaller than five, an SUV seems ridiculous. (Chrystie waves good-bye to half her readers, who are so offended by this last paragraph that they’ve decided to remove “Revising the Dream” from their favorite list…)

*Good Policy. I don’t want this to be a complete government-bashing session, so I will close with a list of some really great laws:
*No tax (well, PST) on books in Canada.
*Free counseling at the Rehab Centre For Children (where Ellie gets all her equipment and sees many of her CP doctors. Parents can access free therapy from counselors who are familiar with special needs parenting and all that entails).
*Tax deductions for charitable giving.
*Income Tax due date extensions for those who receive any self-employment income (not just because Richard started doing our taxes at 10:00 THE NIGHT BEFORE THEY WERE DUE, oh no!).
*The adoption tax credit. Unfortunately this is only in the US, but I love the concept nonetheless. You can get back nearly $11,000 of what you paid for adoption because of this tax credit. Awesome!