Monday, April 23, 2012

Happy 34 month birthday Charlie-Anne!

 (A birthday stroll to Granville Island with Aunty Shannon and Gracelyn)

Last spring I took Charlie to a mom and baby get together at a good friend of mines place. Matt dropped us off and I told him I'd call him when we were ready to be picked up. The hostess and all the ladies, most of whom I knew, were all lovely and hospitable. But, I was having one of those days. I just didn't feel comfortable. I felt 'different'. As is the usual case of a good party, it ended up in the kitchen, where all the yummy food was. I joined for a bit, but Charlie can't be held long...she's heavy and she breathes with her tummy, and to be held safely her tummy is usually pressed against my chest, which stifles her breathes. My arms were going numb, and Charlie was struggling to breathe so I headed into the living room where I placed her down on the couch and we sat alone. I was feeling a little awkward and out of sorts so I texted Matt, "Don't go far, you'll be picking me up SOON!" That's when I met Gracelyn for the first time. This perfect little blonde haired blue eyed 4 year old with the cutest little glasses came and sat next to Charlie and started talking to and caressing her. So sweet! She just melted me. I instantly felt better.

Eventually everyone moved downstairs. Most of the kids were running around outside and I was in the rec room with Charlie and a few moms when about 15 feet away, at the door to outside, another little blonde haired blue eyed angel stopped in her tracks, made eye contact with me, and just stared me down. She then came galloping down the hallway, stepping over Charlie to get to me , squashing her feed bag on the way, and propped herself up on her tippy toes, snot dripping from her nose, which usually terrifies me more than garlic or a cross does a vampire, and planted a big sloppy kiss on my cheek, and then turned around and ran away. I was speechless, and my heart was officially warmed to the gills.  I later found out she was Gracelyn's little sister Olivia. OMG! Could these girls get any cuter?! They seemed to sense exactly what I needed. It was definitely one of those days/moments you don't forget.

A few days later I was on Facebook when I noticed that Gracelyn and Olivia's mom Shannon thanked our mutual friend Tschessey for hosting the party. I decided to message Shannon, who I'd never met before that day, and who I actually never even spoke to at the party. I told her how I was feeling that day and how her daughters had made my day and that she was obviously doing an excellent job raising them. I then asked her if I could add her to Facebook so I could check out pics of her little angels. And, that's how Shannon and I became friends. The first time we went for a drink we clicked instantly. She has since helped me raise money for Canuck Place and SMA research and I would now consider her a great friend. And her daughters are seriously little D-A-R-L-I-N-G-S! Gracelyn is so gentle and jumps at the chance to spend time with Charlie. It's so heart melting to see.

Yesterday, for Charlie's 34 month birthday me and Shannon and Gracelyn and Charlie walked to Granville Island. On the way there we walked by a woman, her young daughter, and what looked like her mother. As I passed by her she said, "I read your blog, you don't know me but I used to live where she had her birthday and I've been reading your blog ever since." She made my day and reminded me of one of the reasons I write this blog. I want people to get to know and love my little angel almost as much as do. I want her story to affect them. I want to show people how resilient and strong she is and to learn valuable lessons through her life. And I think it's working. Charlie does it again. And again. And again. And again to people. I've got a a smile ten feet wide across my face right now. So proud of my little red head. SO proud. Happy birthday miracle girl!

Wednesday, April 18, 2012

Share the love.

(Red Fraggle, I mean Charlie, 33 months old)

About 5 months ago, I happened upon and 'liked' a page called 'The Anaya Initiative' on Facebook The page was/is about a little girl Charlie's age that had Krabbe Leukodystrophy, a rare terminal degenerative disorder. Anaya reminded me so much of Charlie...weak, unable to stand or walk, fed through a g-tube, and using bipap. I'd just happened to 'like' the page about 2 weeks before she passed away, and to be honest it was often hard for me to read the posts and look at the pictures because Anaya reminded me so much of Charlie. I was really, really affected by her story.  Camara, Anaya's mother is a very candid woman who was/is not afraid to bare her soul and share Anaya and her story with the world. Not everyone can do that, but I am similar, so I could really relate. Reading about and seeing pictures of Anaya's final days made me feel like I was having an out of body experience and looking down at my own life. I mourned with thousands of others when Anaya left this world November 13th 2012.

After Anaya's death Camara decided to devote her life to helping families dealing with not only Krabbe Leukodystrophy, but all sick kids. She started working for FundRazr, a company that created a fundraising/marketing app that she used on Facebook when she needed financial support for Anaya's health care costs. She started a new division of the company where she specifically helps families  with sick children create campaigns to help them raise money for their medical needs. About 5 weeks ago a post came up on 'The Anaya Initiative' about Camara needing an intern to help with the campaigns, I wrote back right away, Camara called me a 1/2 hr later, we met up that Tuesday, ended our 'interview' with a hug instead of a handshake, and I've been helping out ever since (even starting my own FundRazr raising money for SMA research which has raised $2400 in less than 2 weeks). 

I went to school for social work and counselling, so this was right up my alley. I'm dealing with families I can relate to and empathize with. I'm helping them create campaigns to help minimize the financial stress in their lives so they can keep the focus on their sick child. That feels good. And, I'm working with a woman who lost a child only 5 months ago, and is still a fully functioning human being. I honestly believe I was supposed to meet Camara, learn about Anaya, and find this path. I spend a lot of time worrying if I'll even be able to breathe again in the possible event of an 'after' Charlie. Now I get to spend time with someone 'after' and she is living proof that it's possible I'll not only be able to breathe again, but perhaps I'll even be able to smile and laugh and work again 'after'.
But, as my friend Ivan says to me REPEATEDLY, "We are here today, tomorrow does not exist yet." And today is good.

Camara has a blog about Anaya, check it out here:

And here are links to a recent campaign that is very close to my heart. Raising funds with Bobs and Lolo for BC Children's hospital. Help if you can!

Love, Love, Love.

A few recent pics. Better hang on to your heart, she'll steal it!

Friday, April 13, 2012

Guilt free.

(Charlie, 33.5 months old)

Not that I'm in the position to do so, but I go back and forth on whether or not I want another child. Part of me thinks Charlie would looooove a sibling, and another part of me thinks about the time another child would steal from Charlie. Sometimes I think I NEED another so that I have a reason to carry on 'after', and another part worries a new baby would steal too much of the precious time I do have with Charlie. I think about things like how I would get around with 2 kids...we have a van with a ramp, Charlie's stroller fits in the middle of the van, newborns can't be in the front seat, where would the new baby go? Charlie needs to be within reach to be suctioned. And what about walks? How would I do that? Of course, to make this baby I'd need/have a partner, and they could help sometimes, but what about when I'm on my own, how would that work? Of course we do have nurses, so they could help out a bit I guess. Currently Charlie is waking up MANY times during the night (seriously 16 times in an 8 hr period last night, I counted!) and needs to be repositioned and scanned to figure out what the issue is...I could pretty much guarantee ZERO sleep if there was a newborn in the picture as well. No sleep ='s CRAZY! A lot to ponder, but luckily I'm not in a rush, and I believe that in the end, things will turn out the way they're supposed to.

I think I'd be starting from scratch if I did have a new baby though. If you look at the average parenting manual, I've/we've basically taken the tried/tested/and true advice and information 'they've' provided and done the exact opposite in regards to raising Charlie. We don't have specific nap times, all Charlie really eats (tastes) is sweets and yummy stuff, we put absolutely ZERO vegetable licking pressure on her. Charlie watches A LOT of movies and cartoons, definitely more than the recommended couple hours a day, her number one sense is sight and all you have to say is "Lilo and Stitch" and she'll grin from ear to ear, how could I deny her?  Most regular toys don't apply to Charlie, I was laughing on the weekend when I realized that her three favourite toys that day were a tampon, a small plastic bag, and a (needle less) syringe. Awesome, MOM OF THE YEAR right here! I'm constantly looking for light weight 'toys' that fit perfectly in Charlie's little hand to make her feel strong and proud, and often those things happen to be tampons and syringes. Haha. So, yeah it would definitely be starting all over again if I had to follow the 'rules'. I have a lot of friends who talk about being judged by others for their parenting techniques, I say, if you can tell a mother loves her children and they're safe, leave her alone because that's really all that matters.

If Charlie cries we figure out what she wants and make it happen. When Charlie cries it makes more secretions which puts her at risk for choking, so baby gets what baby wants. When it comes to flu shots and immunizations we say, "bring them on, and double dose us too!" We rely HEAVILY on these things to protect Charlie from as much as possible. Now, if she were 'normal' we'd probably investigate these things further, but at this point we'll take all the protection we can get. Just after Charlie got her 4 months shots is when we started noticing she was getting weaker. I remember thinking it was the shots, "I should have waited" I thought. I was blaming myself, I looked up everything immunization related. I also thought, "Maybe It was that glass of wine that one night before I breastfed..." Then, "Maybe it's botulism." We had recently ripped up the carpets in our new place, and apparently it can be found in dust. I'll never forget being in the hospital with Charlie for 4 days, no answers, not sleep, and googling everything it could be...what could we have done wrong? A nurse walked in and I practically grabbed her by the collar and shook her while crying and angrily questioning with her, "Why aren't you doing any tests?! Why are we here?! What's going on?!" Then I softened up my approach and desperately begged her, " I know I sound like I'm grasping for straws, but I think its botulism, we just ripped up our carpets...can you PLEEEEASE test her?! It's just a simple stool sample!" Looking back I feel sorry for that nurse. She just stood and stared, taking in my manic outburst  and said she'd look into it. Soon after the doctor came in, lowered the blinds on the room door, and told us what was really going on. My point? Parenting can be so guilt fueled. If your intentions are good, go easy on yourself.

That being said, it's so beautiful outside today that I feel guilty being indoors. I'm gonna pack my little red head up, pick up some Timbits, go find a patch of grass somewhere, and perhaps play with an inappropriate 'toy'. Sounds like a pretty nice little Friday to me.

Sunday, April 1, 2012

Twisting with Charlie!

Dance party with miss Charlie. This went on for about 45 minutes...good for the arm muscles! When I eventually put her down she cried, she wanted to keep dancing!