Pomp and Circumstance

My baby girl graduated yesterday!

Oh, it was precious. As I've mentioned before, Ellie has been going to therapy camp for a month. Yesterday was her last day and they made a big to-do about it. Rightly so. Ellie worked her booty off! She was so excited about showing off (parents, grandparents, etc. were invited to watch the "ceremonies"). She was almost *too* excited, because her muscle control suffers when her adrenaline rushes. Sweet girl!




Ellie leads the procession...


One of the things Ellie worked REALLY hard on this month was learning how to get down onto a seat or stool from her walker, or in this case, canes. She's *this* close to being able to do it herself!


Sittin' pretty while the other kids receive their certificates...


FINALLY, it's Ellie's turn!


Precious girl is so excited that her walking is hindered! Gemma still needed to put her foot in between Ellie's legs so that she wouldn't criss-cross. As you can also see, Ellie's been working on walking with canes this month. This is a 'step up' from her walker, and significantly more difficult for her. But, Gemma (her therapist) felt she was doing so well in her walker that it was time to step it up (pun intended)....It's slow-going, but she's gettin' it. Ellie took 4 steps all by herself with her canes this week!






There it is: THE DIPLOMA!


I don't think she's ever been asked to "shake hands" before!


My mom bought Ellie a graduation gift: butterfly/fairy wings. It was nauseatingly fitting, given that the Movement Centre logo is a butterfly (see back wall paintings). Ellie was beyond thrilled, especially since she now has wings "just like Abby Cadabby" from Sesame Street....


Showing off the t-shirt all the kids made that morning. It reads, "I Survived Boot Camp 2009". Pretty accurate!


Mr. Cake-meister Reeechard and his butterfly creation for the post-grad partay...

Get Me To the Church On Time...

I have to be careful writing this.

I don’t want to offend anyone. And I certainly don’t want to betray the feminist air I breathe.

But, it’s where my heart is at, and those are the things I write about.

We attended a beautiful family wedding over the weekend.

Weddings are hard for me. And I don’t want them to be. I want to enjoy the celebration and rejoice with the adoring couple. I want to go back in time to my wedding and recall the feelings of young love that bubbled out of my soul.

Instead, I sit in the pews and sadly wonder.

As the flower girl preciously drops her little rose petals, littering the aisle with fragrance, I wonder if Ellie will ever walk, even with a walker, in church.

As the bride makes her teary way down the aisle to meet her beloved, I wonder if Ellie will ever find that. I wonder if she will have the cognitive abilities to fall in love and start her own little family. I wonder if a boy will see past her physical disabilities and fall in love with her heart.

As the father of the bride holds tightly to the arm of his little girl, I wonder if Richard will ever fill those shoes.

Of course, I realize that marriage does not complete a person. I also know that there’s no guarantee that any child, disabled or typical, will end up walking down that aisle. My head understands this. My heart, however, doesn’t always get it.

I want that for Ellie. And, if I’m being completely honest, I want that for ME.

Perhaps my love for Richard has contributed to this sadness. Ironic, isn’t it? I love him so much and he has brought me so much joy that I want Ellie to experience that with someone too. Perhaps my love for ELLIE has added to this pang too. I am so head-over-heels in love with my child that I want Ellie to feel love as a mother too.

More than anything, though, I realize that the despairing comes as a result of the unknown. My heart cries because I am scared of the future and what it may hold for Ellie. I hate to admit it. I really DO try to cover myself in positivity and concentrate on the good. I really DO try to encourage sweet Ellie at every turn and reinforce my love for her. A love that is unconditional. No matter what she does or what her physical and mental abilities are.

But, sometimes, I wonder. And I go to melancholy places in my mind. I want love and comprehension for Ellie. I want those things SO BADLY. I know the “right” thing to say, especially as a mother, is that I want happiness for Ellie. Of course I want that. But I want her to also have intellectual acuity and I want her to fall in love.

Sometimes (okay, MOST times), I wish I knew what the future holds. I wish I knew if I need to wonder (read: worry) about these things. I wish I knew whether I should accept or hope.

I wish I knew if we should start a “wedding fund” account.

Ellie and the flower girl from the wedding on Saturday. Not the best picture, I know, but I need my I.T. guy to help me get the REALLY GOOD pics onto my computer so I can share Ellie's totally amazing prettiness with you!

Be Still, My Heart

A Little Bit of This, A Little Bit of That

Busy havin' fun 'round these here parts.

It's a bit chaotic driving Ellie into her "camp" session five days per week, but she's doing so so so well. Today she actually side-stepped around a bench on her own! It is so difficult for her to move her legs sideways (it's tough enough to move them forward and back), and they've been working on that skill since day one of camp. And today was a breakthrough day! Breakthrough days ROCK.

I wish every day was a breakthrough day. Ha!

Anyhoo, here's some pics from the weekend, havin' fun and enjoying some summer.













Bath Time with Cousin Zach!

The Obligatory "What We've Been Up To" Post

Well, I haven't yet broken the "2 weeks without posting" ceiling. One day shy.

Things have been wildly busy. How on earth did it get to be mid-July?! Richard was being "Cake Boss" and baking Cookie Monster and Oscar for Ellie's March birthday just yesterday!

The baker and I took our annual "just us" vacation last week. We decided to go to Vegas...again. Oh, sure, we love us some Vegas, but I'm ready to mix it up a bit. The problem is that Las Vegas is so accessible (direct flights from our middle-of-nowhere location) and cheap ($29 one-way!). Where else can you stay in a five-star hotel for $100/night?! I guess Vegas is hurting in this recession because lodging is borscht-cheap. And I love a nice hotel room. Like, one with a TV in view of the soaker tub. BLISS.

It was a good time. Good for the marriage. Good for the rejuvenation. Good for the taste buds (every time we go to Vegas, we change our "Best. Restaurant. Ever." list).

We were gone for nearly a week and by the end of it, I was definitely missing sweet Ellie. This trip was different. This missing-ness was different. No longer was this vacation a "much needed break from parenting and Ellie". This vacation was about connecting as a couple, because we're no longer in dire need of a parenting break. Life is so much easier with Ellie, as she's able to communicate and has better physical and emotional control. It felt good to miss her.

During our vacay, Ellie started her "therapy camp". We are unbelievably blessed to have an amazing sitter/respite worker who was more than happy to look after Ellie while we were gone, and bring the sweet girl to the first few days of camp. And, hoo-wee, is that sweet girl tired! The first week of camp has been a huge adjustment for Ellie. She is so worn out by the end of her day, but we're starting to notice her stamina slowly building, which is great. We're still putting her to bed at 6:30 on weeknights (a bit of a bummer considering it's SUMMER and we have sunshine and nice weather to enjoy all evening!). 'Course, it gives Richard and I a nice long evening together...

...if we were actually home together at night! The day after we got home from our rendezvous, I started my VBS-volunteering stint. I'm currently on night 4 (one more left!). It's fun, sure, but so tiring.

We were gone over Canada Day, but we celebrated July 4th at home, with hopes that Richie-Rich wouldn't feel quite so homesick. Of course, Jelly B'Ellie is the cutest Miss America EVER.

We even had a cookout. How much more US American can you get?!



And there's your 411. Hopefully the next one won't take so long in comin'!

I Just Wanted To Be a Foreign Correspondent

The other day, I was encouraging a cancer-care nurse-friend of mine, commenting on her ability to perform such a difficult job. Not only is she medically-smart (which I am NOT), but she’s also an emotional rock and actually finds joy in spending time with people who are sick and dying. I told my friend that I was so glad that God gifted her in this area, because there’s no way I’d be able to do her job. I’d be having a nervous breakdown within the first week (and that would be IF I could even fudge my way through the biology courses needed to graduate from nursing school!).

She responded by saying,

“Well, I feel the same way about YOU. There’s no way I could raise a special needs child. You’re obviously gifted in that area and God knew that.”

My friend said these words to me out of pure love and I wasn’t offended by them at all. I was, however, struck.

I am NOT gifted in areas of any child-rearing, never mind the raising of a special needs kid. Truth be told, I don’t even LIKE kids that much. Typical or special needs.

When Richard and I decided that we wanted to grow our family and make some babies, there was a part of me that was hesitant. I wasn’t a “kid person” and the baby stage absolutely terrified me. I was always afraid that I wouldn’t know what to do with my own child and sometimes questioned our decision to have kids.

Of course, I knew that it would be different when the kid was MINE. Everyone said that. I had a couple of really good girlfriends who weren’t baby-lovers either, and yet they did a great job mothering and loving their own kids. And the desire to have a baby with Richard, to expand our family, was pretty intense. Somehow, I just figured it would work out. And, if the “baby/toddler stage” wasn’t my favourite, it’d be okay, because my kid would eventually grow up and by the age of 3 or 4, I’d at least be able to hold conversations with her.

Obviously, I knew that there was a possibility that things may not work out just as planned. Sometimes, when things are hectic and overwhelming with Ellie’s therapy and medical appointments, I use the phrase, “I DIDN’T SIGN UP FOR THIS!” Of course, this is only half-true. When that second line popped up on my pregnancy test in August of 2004, I HAD signed up for it. I had signed up for the possibility that my baby could have issues. I had signed up for the possibility that my baby could come early. I had signed up for the possibility that my baby could have an in-utero stroke. I had signed up for the possibility that my baby could have life long delays and be diagnosed with cerebral palsy.

But not really. Because everyone else I knew had healthy babies. And everyone else I knew had nine-month pregnancies.

Sometimes I actually chuckle when I think of the irony of my situation. I’m just a girl who thought it would be cool to have a baby with her husband. A girl who would have rather caught chickens at 5am than babysit. A girl who had absolutely no experience with special needs kids (or adults, sadly enough).

NOT a girl gifted in raising a special needs child.

The reason I am head-over-heels in love with a four-year-old special needs kid is because she’s mine. The reason I navigate the complicated (and often frustrating) medical system is because I HAVE to. The reason my arms are so strong is because I have no choice but to carry around a 33-pound sack of cuteness. Not because I’m gifted.

I am just doing what I have to do. I am doing what (almost) any other parent would do. I have not chosen this road; it was chosen for me.

I know I’m doing a decent job. I can’t think of anything else that Ellie might need to make her life easier, or her future look brighter. Some days, I feel really good about my abilities as Ellie’s parent, and all the extra work it takes to ensure that her chances at an independent future are maximized. But, honestly, most days I feel so inadequate. The farthest thing from gifted. I have not a hot clue what I’m doing. I know how to make phone calls (over and over and over again). I know how to research on the internet. But that’s about it.

I guess it’s not really about my giftedness then. It’s about wanting the best for Ellie and doing whatever it takes to give that to her.

It’s about showcasing ELLIE’S gifts. She has so many that are often hidden by her disability. Precious girl.

So, excuse me while I make a call to a pediatric ophthalmologist, an occupational therapist and a social worker….