Saturday, July 21, 2012

Summertime blues.

(Charlie 3 years old, asking for/giving me hugs)

This is the third summer since Charlie's diagnosis and Matt and I have been waiting so patiently to get outside and have some fun with her. Problem is, the sun came out (sometimes!) and we've actually been feeling worse than ever about things. 

In the beginning Matt and I constantly lived as if our child was dying, then over time we subconsciously (and then consciously)  began to live as if she was 'just' disabled. When we'd settle on that philosophy, we would soon  be reminded we were walking a tightrope regarding Charlie's life/quality of life every time she was hospitalized and we'd tense up and be on full alert again. After we'd return home from our weeks of touch and go with Charlie in the hospital, things would return to 'normal' again...our normal. Back and forth, back and forth...let's live the most normal life possible/let's live like there is no's enough to make your head pop off!
I recently read a story about a family that had a 'terminally ill' SMA child and were going to grief counselling, the mother talked about how she learned that her 'normal' and what she was used to, was being stuck in the 'fight or flight' mode pretty much being stuck in that moment riiiiight before you almost get hit by that bus. What a fu#cking way to live! And reading that really resonated with me. Just a dance with my daughter has resulted in Charlie choking and my heart stopping...was I seriously so careless as to dance with my daughter at the expense of her life?! How dare me! I have a few of those moments every day and I think to myself, "I better never be responsible for shortening her already short better not be because I was so 'careless' as to dance with my daughter, or as Matt recently did, shared a lick of a chip that she ended up biting down on with the crumbs threatening to go down her throat. Water is my biggest fear...most of my Charlie nightmares are water related....she slips out of our arms for 1 second in a pool...she can't cough up what a healthy kid could, and that's it. 

I think this year is different because people are REALLY starting to notice that something isn't right and they are starting to stare a lot. I'm so tired of seeing someone look at Charlie in her stroller and then look up at me with pity in their eyes. I get it though, I'm guilty of doing the same in the past, and even still. 
Charlie was recently admitted to children's hospital for a minor cold and I left for a bit to drive my friend  back to work when my friend noticed a man pushing a stroller like Charlie's. She exclaimed, "Look, that kid has a stroller like Charlie's." I looked over, curious about whether or not the child had SMA too, and the father saw us both gawking and spit his gum out towards us with a disgusted look on his face. I knew exactly where he was coming from and couldn't really blame him, but it was that moment that i decided to try to understand peoples curiosity.  We recently went to Cultas lake and Matt was carrying Charlie to the lake to dip her toes in when I heard a little girl say, "is she sleeping?" I looked over at her and her friends and quietly said, "no, she's sick." They followed Matt to the waters edge and hovered around and stared as he dipped Charlie's toes in the water and she giggled. Other people began to stare as well. As much as I try to understand the curiosity, It still makes me sad. I mean, even me, following closely behind Matt with Charlie's suction machine in tow, looks at the image of the two of them with a tear in my eye...from an outsiders perspective it looks like a dad with his extremely ill child who doesn't have a lot of time left with her...and sometimes that's the only view I can see from too. It's hard being 'those' people. The people everyone else feels so fortunate to not be. 

We have really lost our perspective on how to deal with our situation we carry on business as usual, or do we just inhale the time we have because we have been forewarned? One thing we can be sure of lately and can agree on, is that our daughter is sick. She is not 'just' disabled, she is very fragile and things can turn quickly. And we need to give ourselves the proper credit for dealing with that on a daily basis for 2.5 years now. Charlie is amazing. She is counting, knows her alphabet, asks for hugs and g-car (guitar) and changes all the words to her favourite songs to "mum, mum, mum, mum..." One of the lines of a song she sings out of the blue, from the end of her favourite movie 'Lilo and Stitch' is: "I will always, I will always looooove yooooo" THE BEST. You just can't help but love that flourishing personality more and more everyday. I will always, I will always loooove yoooo too Charlie!


  1. Too beautiful. You express yourself so well Cher. I think of you three very often <3 I am infititely proud of you xoxo

  2. Too beautiful. You express yourself so well Cher. I think of you three very often <3 I am infititely proud of you xoxo

  3. "And we need to give ourselves the proper credit for dealing with that on a daily basis for 2.5 years now. "
    this is the truth right here
    walking everyday through this exceptional situation facing all you face you must give yourselves credit...lots and lots of credit!

    this is a journey of soul over you watch Charlie emerge...her true essence beyond physical limitations and health fragility you get to see such a pure essence of who she really is...her spirit..this is the diamond in this shit show you are be so close to her soul.

    I say that with great gentleness and knowing I have NO idea what it is to live as you I will not pretend that I do
    I am one of those people who would look at you...but not with pity, with love....with the knowledge that we are all connected and what happens in your world does affect mine, so I would look at you hoping you would see that though I am a stranger I hold a light for you and your family, that even though we may not speak or meet that I hold a light just for you that you might find your way that much easier in this season of uncertainty...not pity...but a deep love of understanding that I have know idea what you are going through and yet I feel something, I see something, I am affected by your life as you are by mine......

    you are amazing Cheri...truly...great things are happening because of Charlie...great wonderful amazing things....

    love and light

  4. As always Cherie, you help us to understand what Charlie AND her mommy and daddy are going through, but at the same time show us what a shining light Charlie is. She is truly a miracle and I don't mean because she has reached birthday # 3 but because through it all she shines, shines, shines.

    Hugs to you all, Linda xoxox