Sad Hopefulness

A very sweet work acquaintance of mine said something thought-provoking to me last week:

“Chrystie, I’m just so sad for you.”

We had been talking about Ellie, and her cerebral palsy, and how we experienced a rough doctor’s appointment a couple weeks ago, and that was her response. There is no doubt in my mind that she meant it in the most sincere and loving way, and her words were not offensive whatsoever. BUT, they took me aback.

I quickly answered, “Oh, no, please don’t feel sad for me! We really ARE blessed beyond measure.”

Sure, my response was soiled with lip-service, but I wasn’t sure how to react to her words. I’ve always said that I hate it when people feel sorry for me. But, is feeling SAD the same as feeling SORRY?

It got me thinking about one of my sweetest friends. She found out this week that her mom has terminal cancer. When I heard the news, my heart dropped to the floor and my knees buckled as I wept for her. I FELT SAD FOR MY PRECIOUS FRIEND. From the depths of my soul, I was covered in sadness, because someone I love is hurting. My kindred spirit of a friend has been through more than enough pain and disappointment in her life, and I wanted to cry out at the unfairness of this big blow. I wanted to fix it and I wanted to take this burden from her.

Perhaps that’s what people, at least those who are genuine and true, feel for me. And for Ellie. They don’t feel sorry for us in a benevolent way, just as I don’t pity my sweet girlfriend. Maybe they just wish that our burdens weren’t so heavy, and that they were able to fix it.

I’m okay with that. I guess, then, I’m okay with people being sad for me. I’m NOT okay with that sadness overriding the hope and blessing though. Just as I can’t dwell in the “what if”s and “what should have been”s, I can’t accept other people floating along that river of despair. Be sad, but then dry yourself off and jump on the hope boat.

So, to my dear friend, know today that I am sad for you, but that I also hold your hope desperately. I love you.

Easter Thank-You

I only have a few minutes before heading out for an Easter family gathering, so I will be a speed blogger with a Thankful List. I'm overdue for one anyway!

1. I am thankful that Duke is out of the Tournament. And even better that West Virginia was the one to knock 'em out!

2. I am thankful that I have an amazing husband who made THE cutest cupcakes for our gathering tonight:



3. I am thankful that I had THE BEST 3-hour long breakfast this morning with two of my dearest kindred spirits.

4. I am thankful that Ellie is so very well behaved. I remember when she was first diagnosed with CP, and the neurologist "warned" us that many brain injured kids have significant behavioral problems. Ellie is truly one of the most laid-back, easily entertained 3-year-olds on the planet. We are so so so blessed.

5. I am thankful that this huge fundraiser I'm organizing for work will be done in a week. It is causing me MUCH stress.

6. I am thankful that it's stopped snowing. I have to find SOME sort of silver lining in the fact that I woke up to snow in SPRING.

7. I am thankful that Ellie's peed on the potty nearly every day this week!

8. I am thankful that our church finally found a youth pastor. He (and his wife) are stinkin' precious.

9. I am thankful that Ellie's new outfit is beyond cute and that she is my FAVORITE in it:


10. I am thankful beyond words for my Savior. I've thought a lot this weekend about how much Jesus sacrificed for ME, and what that means for my future. It means that I get to spend eternity with Him and those who have gone before me. It means that Ellie gets to RUN in heaven. It means that bad things here on earth have an end. Literally, THANK YOU JESUS.

Party Numero Deux

Richie insisted on making Ellie's birthday cake, because he has such fond memories of the special cakes HIS amazing mom would make for him. I said, "As long as YOU'RE the one making it..." And, voila! The boy did GOOD.


More gifts, more smiles:




And now we clean up...!

Party Number One

Ellie's so popular that she has to throw TWO birthday parties! Yesterday's brunch bash was held at Grandma's. I was sooo thankful that we didn't have to host two parties back-to-back. It's already a stretch to dust on top of the fridge for ONE!

Cinnamon Bun Birthday Cake:


Ellie takes present-opening SERIOUSLY:





Following in her brilliant percussionist-Mother's footsteps:

Three Years Ago Today....

...Richard and I were watching the start of March Madness, from a third floor hospital room, on a rainy DFW day. I was happily drugged, oblivious to the intensifying contractions, awaiting the early arrival of our little girl. (Am I the only one whose mom started every birthday off with, "xx years ago today...." ? Good Lord, I AM MY MOM!!)

My sweet girl turns THREE today!

As I was lying in bed this morning, waiting for Ellie to wake up so that I could burst into her room, singing the Birthday Song, I realized that I *still* approach her birthday with a tinge of sadness. Her first birthday was obviously stained with grief, as we had only two days earlier received her cerebral palsy diagnosis. Last year's birthday was a reflection of how difficult those first twelve months post-diagnosis were.

This year, on Ellie's third birthday, I can truly rejoice and celebrate with my daughter, but there still remains an underlying sadness. And I wonder if every birthday will be like this. Because birthdays often bring me back to the original dream. Lying in that hospital bed three years ago, I had an image of what Ellie would be like in 2008. I imagined her running out of her room on her birthday morning, jumping into our bed, and screaming, "Mommy, it's my birfday!"

Of course, this morning didn't quite happen that way.

My heart gets teary when I think of the dreams that I've had to revise. It cries selfishly for me, but mostly for Ellie. Because I know she would LOVE to leap onto the bed. And she'd LOVE to be able to better verbally communicate with us.

BUT, this year's slight sadness is just that: slight. I know I have only two previous birthdays to compare, but it seems like every year gets easier and funner. Each year, I find myself more able to suppress the sadness and cover it with joy and celebration. I can only hope this is a growing trend.

Because today, I want to rejoice in the revised dreams. They are GOOD, GOOD dreams. They are BIG dreams. They are GRAND dreams that, without a doubt, Ellie can fulfill. Instead of grieving Ellie's inability to jump on our bed, I am going to rejoice in the fact that my girl will be opening her birthday presents while she sits independently on the floor. She will be able to point with one finger at the package she wants to open next, and she will be able to say Thank You. She is a living and breathing miracle.

Happy Birthday, Ellie Mae!

Two Years, Eleven Months, Ten Days...

...in the making, but my baby can now get up in her crib!!!






I'm NOT complaining, because I've been waiting for this day, but I'm also REALLY anticipating the day that she can get down on her own and not feel the need, at 5am, to holler for "Mommy! Mommy!"

A New Day

And a new perspective.

Obviously, last week was rough. The appointment with the physiatrist and therapist was a gut-puncher, and I allowed myself to wallow for a good couple of a days (because it's all about ME, you know).

As usual, my profound sadness and despair has been replaced with good ole ticked-off-ness. I will NOT allow ONE opinion by ONE professional to alter my belief in my incredible daughter. I realize that there is a possibility that Ellie will never walk, but I'm gonna cross that mental bridge if I get to it. Right now, I still believe and I still have hope.

Many people have encouraged us to seek a second opinion. I agree, that's a great idea, but it's much more complex than many of you realize. Not only do we live in Canada, but we also live in a sparsely populated area. There is ONE CP doctor in this province. So, in order to see another doctor who specializes in spasticity, we either have to travel to a larger Canadian city (a 15 hour drive MINIMUM), or we have to pay $500 to see a professional in the States. It's never as simple as opening up the Yellow Pages, picking a specialist out of the dozens listed, and driving ten minutes to see the (hopefully) good Doctor. Oh no. That would make life much less interesting.

Richie and I are still wondering if Ellie will be a good candidate for selective dorsal rhizotomy surgery. (This is the procedure I asked last week's therapist about, and her reply was, "Why put Ellie through invasive surgery if she'll never walk anyway?" GRRR...) When I was perusing the St. Louis Children's Hospital website, and found the criteria for SDR, I realized that, on paper, Ellie fits nearly every one.

Essential Criteria:
At least 2 years of age
Diagnosis of spastic diplegia , spastic quadriplegia or spastic hemiplegia (Ellie has been diagnosed with either diplegia or quadriplegia, depending on the doctor)
Some form of independent mobility, for example, crawling or walking with or without an assistive device
History of premature birth; if born at full term, child must have typical signs of spastic diplegia
No severe damage to the basal ganglia on MRI examination (Ellie's radiologist even mentions specifically on her MRI report that the basal ganglia look perfect)
Patients exhibit potential for improvement in functional skills after dorsal rhizotomy

Interesting, huh? We think so too!

I emailed St. Louis Children's, and they requested we send a video tape of Ellie "in action". We have a list of different movements they need to see on this video. Dr. Park and the team of therapists will evaluate Ellie via the video for free! How amazing is it that we can obtain that coveted "second opinion" for free, via a VHS tape?!

Don't worry, I'm not getting ahead of myself. I know that the team in St. Louis may reject Ellie as a candidate, or may say that she's not ready yet. I'm okay with that. It's not like I look FORWARD to the possibility of my kid's spine being cut up. I just want to know that we've pursued every option, every "second opinion".

So, pray! Pray that we can capture a realistic video snapshot of Ellie, and that the St. Louis doctors are wise. Pray that Richard and I make the *right* decisions (I try to alleviate some of the pressure by telling myself that there are no "right" and "wrong" decisions in regards to Ellie's care...).

So, TAKE THAT, raunchy therapist from last week! (Can you see me sticking my tongue out??)

The Facts

I am going to attempt to write an emotion-less piece today. I’m not sure I have the ability to do that, since for me, writing is all about expression and feelings, but I don’t have the time or energy to cry right now. And I feel the need to process a bit longer before spewing out my feelings to the world.

What: Ellie’s appointment at the Spasticity Clinic, seeing a physical therapist and the “CP Doctor” (aka: physiatrist)

When: Yesterday

Where: Rehab Centre, where we co-ordinate her CP-related medical stuff (she gets her equipment through the Centre, and also sees an orthopedic surgeon there)

Why: To see if there’s anything else we should be doing to help decrease Ellie’s tone (tight muscles)

The results: The therapist spent about half an hour working with Ellie, stretching her muscles, measuring her legs (to see at what point the tightness kicked in), etc. She kept saying, “Ooh, yeah, she’s very tight,” or, “Wow, she’s quite involved.” So, I knew that things were going less than swimmingly. At the end of the assessment she said,

“Well, I’m fairly certain that Ellie will never walk functionally.”

She went on to explain that, even if Ellie could take a few steps in a walker, her gait is so affected by the tightness in her hips, that walking would be completely inefficient, and a wheelchair would most definitely be her main mode of ambulation.

(Keep to the facts, Chrystie. Keep to the facts…)

I asked her about the possibility of Selective Dorsal Rhizotomy, a surgery that involves cutting the nerves in the spinal cords, which results in looser leg muscles. The therapist (and later, the doctor) said that Ellie was NOT a candidate because they only refer to surgery patients with less severe CP, who are expected to eventually walk.

We talked about the possibility of Botox injections into Ellie’s tightest muscles. For those of you who are unfamiliar, the procedure is to inject Botox (or botulism poison) into the strongest muscles, rendering them paralyzed. This allows the weaker muscles the chance to work and gain strength. Botox is temporary, usually lasting 2 months. We were told that because Ellie’s hips were so incredibly tight (spastic), it would require 20 needles (injected directly into the muscle…ouch!) each time. They asked us to weigh the pain vs. gain. In other words, if Ellie’s not gonna walk either way, is it worth the pain and trauma?

Lastly, we discussed the option of oral Baclofen. This is a prescription muscle relaxant. Adults will often use it for back pain. There are some side effects (grogginess, constipation), but the starting dose is fairly low, so the instance of major side effects is minimal. We left the clinic with a prescription in hand. We’re still unsure if we’ll fill it. We need to do some research and soul-searching first.

We heard the therapist and doctor use the words, “very tight”, “severe”, and “incredibly involved” many times in those 3 hours. Not my favorite phrases.

So, there are the facts. I’m sure you can all imagine the emotions I’m feeling right now. It was NOT my best day. I’m still trying to process it all, and figure out my “plan of attack”. Do I come to terms with a wheelchair? Do we pursue another opinion (especially in regards to surgery)? Do we push Botox?

My brain is a bit mushy right now.

Team Ellie

I woke up today to a shower of fluffy, melt-on-your-nose snow flakes. It was magnificent, sure, but it made me want to scream. I am so very sick of winter. Ellie's birthday notwithstanding, March is the worst month of the year in this barren Canadian land. Your internal clock realizes that spring is just around the corner, but Sylvia Kuzak, the trusted weather-woman, tells you otherwise. Some of the nastiest blizzards take place in March. And it wears me down. Every March day I ask myself, "Self, WHY, oh WHY did we move back here from Texas?"

Of course, today is Tuesday, which means that Ellie has therapy at the Movement Centre, a 50-minute drive away. The snow is pretty, but it sure makes for crappy road conditions. Not only that, but this was a special morning, as Richard was planning on taking Ellie to therapy, and I was going to spend 4 hours of quiet bliss at home, working, cleaning, blogging and drinking coffee. I don't get those kind of mornings very often, so I was pretty pumped.

But, then there's the snow. And the roads. And the question of driving 60 miles...

THANKFULLY, I married a superstar who, despite his Southern American background, is growing a Manitoba-driver spine. Good ole Richie braved the elements and whisked Ellie away in the Malibu at 8:00 this morning! I've already talked to him on the phone, and know he's okay, so here I sit, happily blogging in the quiet of the snowy morning, while my daughter learns how to walk, and my husband peruses the aisles of "Party Mania", in search of Elmo decorations for Ellie's birthday party next week.

When I was thinking of blog topics, my first instinct was to spew out my disdain for the lingering winter and how much I hate that part of living here. I wanted to reveal how often I question our decision to move back to Canada based solely on weather, and to gripe about how long it takes for the plows to clear the Trans-Canada highway.

But, then I got to thinking about Richard and Ellie zooming along the snow-packed highway, on a mission. A mission to get our amazing daughter to therapy. And I thought about how Ellie's therapists and helpers would be waiting for her, and how the three other kids with CP in her therapy class would be watching the door for her. All of a sudden the snowflakes seemed prettier, and my heart felt warmer.

Ellie has an incredible team, rooting for her every STEP of the way. There are lots of reasons to detest living in the tundra, especially in March, after 6 months of winter, but there are also SO MANY reasons to be unbelievably thankful for the warm people who make up Ellie's cheering squad.

*Agnes, Ellie's physical therapist at Children's Hospital
*Susan, Ellie's occupational therapist at Children's Hospital
*Anna, Ellie's conductive therapist at Movement Centre
*Gemma, Ellie's other conductive therapist at Movement Centre
*Laura, Ellie's private physical therapist who comes over once a month
*Daniel, Ellie's private speech therapist
*Tyler, Jaxon and Cameron, Ellie's buddies at the Movement Centre, who know exactly what she's going through, cuz they have CP (or spina bifida) too

And these are just the people associated with therapy! I can't even list all of Ellie's doctors, who have always treated us with the utmost respect. We have been so blessed by the doctors we've seen, as I've never questioned their intentions to make life better for our sweet kid.

The amazing thing is that all of these incredible people have also chosen to stick out the brutal Canadian winters. Thank the good Lord they have persevering spirits! They are rays of sunshine, and make this life so much more bearable. They believe in Ellie, and want to see her reach her highest potential. They are SO worth the drive!