Friday, November 16, 2012

My daughter.


(on the mend @ Children's Hospital)




















My daughter. My daughter. My daugh-TER. Two words that just naturally fell from my tongue the past 3 years and 3 months. Of course for the first few months after Charlie was born those words seemed so strange to say...I loved saying them, but I felt like a fraud and it took a few months for 'my daughter' to really feel legit. After that, it was completely natural and I felt like life had been saving this label for me (Charlie) my whole life, just waiting for me to be ready to accept it.
Lately though, every time I catch myself saying "my daughter" the words reverberate in my head...I feel an immediate flash flood of pride come over me...if I was a peacock my feathers would be fanned so proudly no one could miss me and people would "ooh" and "ahhh" over the glorious display. I'm sure this is happening because I am more and more in awe of Charlie's courage and resilience...she goes through and puts up with so much yet she is the happiest most optimistic little being I've ever met. I have learned more in the last 3 years since being blessed with Charlie, than in my 31 years before her. She is my little professor of life and true love.

Speaking of courage and strength...Charlie was recently hospitalized for 3 weeks with what seemed to be her worst sickness yet. There were at least 3 occasions where I thought we were going to lose her. In one instance I remember there were about 6 nurses and respiroligists in the room...one giving her oxygen, one deep suctioning her, one checking her bipap, it was tense in the room, Charlie's heart rate was high and her oxygen was really low...I was asked to give her chest physio while everyone else carried out their 'jobs', In all honesty, I didn't want to,  it was too much pressure, but I complied...I sorta froze and had an out of body experience...I saw myself above myself watching the stressed chaos in the room, looking down at all the help and Matt and myself. I felt like I couldn't breathe and like I was going to pass out but it wasn't transparent to anyone else in the room, to them I was just doing what they asked, pounding pretty hard on Char's back and chest trying to loosen the plug that threatened her life, but inside I lacked confidence in my ability to help and I saw her dying and I saw my life without her, and it wasn't pretty. In that moment all of the fears I push aside on a regular basis surfaced and I realized I can. not. live. without. Charlie. EVER. Ever. EVER. It just can't happen. Case closed. 

While we were in the hospital as per usual we went over the 'how far are you willing to go' business with Charlie's main respiroligist. Matt and I had always discussed that as a last resort we would be willing to intubate Charlie (a tube pushed down the throat to help her breath when she can't on her own). It was/is the one tool we felt we had in our pocket, the one thing we would try once if nothing else worked. We'd been warned in the past that Charlie's jaw is recessed due to SMA and muscle weakness and it could be pretty painful to intubate her in an emergency situation, but like I said, we just want sooooomething...we need one "in case of emergency break glass"option. Anyway, when we were in the hospital this time and we were discussing this with the doctor, she looked over at Charlie and said, "Ya, I'm looking at Charlie now, and because of the recession in her jaw, I don't think it would even work." My heart sank to my foot at 100 miles an hour. Really?! Please don't take that away from us. And not at a time like this when we're worried we're gonna have to break the glass. We were devastated and felt instantly powerless. The doctor was just being honest but I don't think she knew how much security it provided us with to have that in our pockets. Now we have nothing but hope. Scary Sh#t.

This was Charlie's first hospital visit since she learned how to talk. It was heart melting and heart wrenching at the same time. Charlie would cry out, "moooooomma" every time she got chest physio and deep suctioning, and it would break my heart. But eventually she realized it helped and every time a nurse or therapist was finished helping Charlie, she would say, "Fank You!" OMG, now THAT is the heart melting part! 

After three weeks of many touch and go moments, Charlie made bail and was released for adorable behavior. We are back home where we belong. Her current fixations are Halloween, fireworks, and Christmas. Doesn't get much better than that, does it?

Friday, September 14, 2012

A very happy un-birthday to you Charlie!

(My little lady, Sept 2012)




















A couple of weeks ago I realized that I'd forgotten to write Charlie's monthly birthday posts the past few months. At first I was hard on myself for forgetting, concerned that I was getting lazy and taking Charlie's time here for granted, but when I pondered over it some more I came to the conclusion that 'forgetting' her monthly birthday posts was actually a good thing. I'm not forgetting how special she is or taking Charlie's time here for granted, i'm enjoying it and believing more and more everyday that she has years left in her, not just the months we were initially told she had when she was diagnosed. It took 2 1/2 years to get here, and I'm finally able to relax a litttttle bit...a little bit.

Just when I jumped that hurdle though, another one took its place...I used to (and often still will) worry about keeping Charlie safe and alive, and now I'm worrying about making her life as full as possible...with school, friends, experiences etc. Today we went to the park. I pulled Charlie out of her stroller on my lap, and onto the swing. As we were swinging, Charlie grinning from ear to ear, 4 children surrounded us. They started asking questions...a lot of questions. "Where does she eat from?" "Why?" "Can she walk?" "Will she ever get better?" "What's that machine for?" "Does she have a dad?" "Why do her front teeth stick out?" "The way you hold her, she looks like a puppet." That last one stung.  One of the little girls looked absolutely devastated when she heard that Charlie would never walk, her eyebrows furrowed and her big brown eyes instantly dropped towards the pavement and you could see that it was the worst thing she'd ever heard...her reaction broke my heart all over again too. I answered all the questions as best I could, knowing that all the kids meant well, but I still needed a good cry. The second I got home and my apartment door had closed behind me the tears flowed. Rough stuff. 

Tomorrow is the Canuck Place Adventure Challenge. I'm really looking forward to it. Once I'm in that environment and I am reminded of all the little miracle children and angel children that have come into my/our lives, my perspective will shift again. Every now and then I need a little shoulder shake, and anything Canuck Place usually does that for me!
Charlie and 'Charlie's Angels' thank you for your support!!
Watch Global news 9am tomorrow, we're being interviewed from Deep Cove before the race.

And, if you haven't, join the 'Charlie's Angels' Facebook page!



Friday, August 31, 2012

Summer continued...

Cultas Lake

after a bath.

front yard snuggles.

Nelson Park.

Poolside. 


Pic by uncle Ivan.

Poppa's patio, love her smile.

cuddles with aunty Sandi, Granville Island.

Spanish Banks.

cuddles with mom.

Queen E Park.

Aunty Shannon's and baby Liam.

at the track with pops.

new friends in Granville Island.

snuggles with pops.

hugs.


Tuesday, August 21, 2012

For Inspiration.



(My little Bonnie Rait, 37 months)













Charlie's Angels has signed up for the Canuck Place Adventure Challenge taking place Saturday, September 15th. Shannon, Lyn, Carly, and myself, will run, bike, and kayak to raise funds for the children's hospice that is very near and dear to my heart. Canuck Place is "the most beautiful hotel you never want to stay at" and has been an amazing resource to my family. If you'd like to sponsor us please go to:

www.adventurechallenge.ca  and search 'Cherie Ehlert' or 'Charlie's Angels'. Thank you!

Also, watch our training/results and info about Charlie by 'liking' our Facebook page @


On that note, I've been thinking...I've decided that I'd love for Charlie to start joining me on some of my runs. I figure we'll start with a 10k, if all goes well a half marathon, and then either the Vancouver or Okanogan full marathon next year. When Charlie was little we ran together all the time and she LOVED it, the only reason we had to stop was because her stroller was replaced with a very heavy stroller/wheelchair with a wheel that went all broken grocery cart when I attempted to run with it. So...that will be number 1 on the agenda...new running stroller.

I am currently inspired by Rick and Dick (make sure you have your kleenex handy!).




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 tomorrow...it'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 constantly...so 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 life...it 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 lately...do 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!



Friday, July 20, 2012

Summer so far.


The star of BC Children's Hospital's physio training video.

Birthday girl.

Sunny hangout at aunty Anna's.

Cultas Lake dip.
Cultas Lake.

Playdoh jewels.

Hot tubbing with pops.

Jamming.

Maplewood farm.
Posers.

Sunday, July 15, 2012

Happy 3rd Birthday (June 22nd) Charlie!

On June 23rd we celebrated Charlie's 3rd birthday with a bbq for family and friends. It was a perfect day, Charlie was in a great mood and was loving all of the attention. Here are a few pics from her special day. Wow. 3. Crazy. Absolutely crazy. Crazy good. We love you to the moon and back Char!




Sunday, June 10, 2012

Little breaks.

(Granville Island. 35 months)




















I recently went on vacation to Toronto for 6 days. Before that I'd never been away from Charlie more than 3 nights. That was last January when I went to Hawaii and once the summer before when I went to Salt Spring Island with a few friends. My personal rule on both of those vacations was to avoid talking about Charlie too much...I was terrified that if I did, I'd get overwhelmed with missing my girl and be a plane or ferry ride away and would end up panicking because I'd feel trapped. I ended up really enjoying both of those vacations, I NEEDED both of those vacations. I came home feeling more alive and optimistic about Charlie and our life together.
So, when my friend Brooke invited me out to celebrate her 35th birthday (and surprise engagement!) with  her and her friends in Toronto, I thought, "hey, I've never been away from Charlie that long, but I can do this, I need this, and it's a good thing for all involved." And I was right, it was. 

In general, I feel pretty fortunate about all of the help we get with Charlie. I get little breaks all the time. Charlie is with Matt 3 days a week (although I visit pretty much everyday she's with him) and I get nursing in the evenings on 3 of my nights with Charlie, including weekends. I think about all of the friends I have that rarely get an evening out. They have 'date night' once a month with their partner and it costs them a fortune in child care so they pretty much have to eat at Wendy's just to afford their night out. I consider myself very lucky in that regard. On my first night in Toronto, I shot up out of bed at about 8am...I was having a nightmare about Charlie. I dreamed that Charlie was there with me and Brooke and I just slept right through for 12/13 hours and I forgot to take care of her and when I eventually remembered she was there, I ran screaming to 'her room' and she had passed away. And, that's the 'nice' way of explaining my dream...I'll spare you the details. I thought about my dream and what it meant, and I concluded that even though I get to go out on weekends, like any parent, I'm still always 'on duty', always just a phone call away. I've had more than one 3am emergency hospital visit turned 1 month life or death situation with Charlie, so no matter how much fun I'm having, I am always aware that I'm only a phone call away from an emergency situation that I'll have to tend to. Subconsciously knowing that, you can never REALLY relax. The second my plane landed in Toronto, for the first time in a year and a half, I was officially 'off duty' even though it was still possible something horrible could happen (which I was optimistic wouldn't happen) I knew that I could not tend to the situation. And I guess it just took a day or so for my brain to compute that. With the help of Skype and knowing how happy Charlie was at Canuck Place and with her poppa, I was relaxed and nightmare free for the remainder of my vacation.

Regardless of whether or not I felt I deserved the vacation, on my flight back I started feeling guilty about having 6 Charlie free days of fun. I know some parents who have 5 year olds and have never spent a day apart from them...how come it's so easy for me to do, ESPECIALLY when I'm told my time is short with Charlie. Shouldn't I be greedy and REALLY soak up the time I do have with her? Guilt. Guilt. Guilt.
Anyway, when my plane touched down in Vancouver I turned on my cell phone and Facebook said I had a message. It read:


I read your blog and I heard about your story through a friend. You and your amazing daughter are so inspirational. I am only 25 years old, single and not a mother. I honestly believe you may be THE strongest women in the world. I mean my mom is amazing don't get me wrong, but what you do for your little angel is absolutely inspiring. You are the mother I want to be one day. Please please don't ever stop writing.

I got teary. How did she know I needed that? I wrote her back and let her know how I WAS feeling and that her message made my day/week/month/year. What an incredibly sweet woman. Thank you again!

I'm home and the vacation is over, but I'm back where I belong and my biggest fan seems pretty stoked about it too! Best. Feeling. Ever.


Tuesday, May 29, 2012

Everything you ARE.

(Smiling Charlie, 35 months old)



















On Saturday I took Charlie to go and meet my friend Christie, her husband Ed, and their two little ones, Dani and Elise, and we all headed to the Granville Island water park. It was hot out, and a weekend, so of course it was a zoo. Screaming, bathing suit clad, croc wearing kiddies were everywhere. They have a swing there in the shape of a large disc so its one of the few things at a 'regular' park that Charlie can use. I strolled Charlie up to it to wait our turn. We waited. And waited until another mother asked if we were waiting to use it. I explained yes but that unfortunately, although all the other kids were piling on 5 at a time, Charlie would have to go solo. She gave the kids a time limit, and we were up next. As I was unhooking Charlie's feed and getting her ready to pull out of her stroller I became insecure that two little girls, about 9 or 10, were pointing and laughing at Charlie, I expressed this to Christie who had just walked up to see how things were going. She said, "Noooooo, they're not Cher". I got my back up and got in instant protection mode of my baby, and a future full of gawking and pointing flashed before my eyes. I put Charlie on the swing where she had the time of her life. The two little girls stood in the background waiting patiently to get back on when Charlie was done. When I took her off and put her back in her stroller the little girls, both still staring said, "She's sooo cute!" I thanked them, but still felt uneasy. The girls meant well, but I was just feeling extra insecure about Charlie's differences for some reason, and was worried that they were the focus of peoples attention towards her.

I turned around to see what else we could do. I'd lost Christie and her fam in the kid chaos. I found myself focusing on everything Charlie couldn't do. Can't go through a sprinkler, her machines could fizzle out if they got wet or she could get water in her mouth and choke. Can't go down the watersides, for fear of the same. I stared at a cute little (about) 2 year old girl standing by a faux fire hydrant that was shooting water out. She had her hand in the stream and was just stomping in the puddle that had developed below it. I started getting anxious and a bunch of CAN'T, CAN'T, CANT'S and NEVER, NEVER, NEVER'S went through my head. Can't go down a slide, Can't stomp in a puddle, Can't run through a sprinkler, Will never ever be able to...It just wasn't stopping. The tears came. I turned around quick, and we bolted out of there. I tried to keep my composure as we raced home. My phone rang, I knew it was Christie, I couldn't answer or I'd lose it in public. I texted her back, "Sorry, had to leave, got really emotional, Can't talk. Trying to keep it together." She texted back that she figured that was the case. 

When Charlie and I got home I just put us both to bed to nap it off. I woke up in a strange mood. Charlie's nurse came at 7, so I collected a few of my old CD's and drove out to White Rock to visit with friends. It was nice, and I think I needed the alone time on the road because when I drove home at 11pm I just kept driving...I decided a cruise through Stanley Park was in order. So, I turned my music up, and just drove. It was lovely and just what I needed. I love Charlie for everything she IS, and honestly, most of the time, I really don't see what she can't do, because it's all I really know...but sometimes, it just hits me so hard. I worry for her, and I worry for me. I don't want any of us to ever be left out. But at the same time, sometimes it's so hard to be a part of something that doesn't really 'fit' you either...when you're always the 'different' one. Sometimes I have flashbacks of the dreams I used to have for my daughter/my family and they seems so foreign to me now. Who cares now about which preschool she'll go to or if she'll be rebellious someday? I just want her to wake up tomorrow and smile. That's the current dream, It really is that simple. And it really is the ONLY thing that matters.

I love you Charlie, for everything you ARE. You're everything to me. You're perfect.


Wednesday, May 23, 2012

Happy 35 month birthday Charlie!!

(Charlie 34 months, and mama)






















Well, the marathon went well...It was definitely an experience I'll never forget, that's for sure! And, Charlie's Angels ended up raising $4000 for the Gwendolyn Strong Foundation, so I'm pretty proud of both feats! I'm actually in the process of trying to figure out how to start a 'Charlie's Angels' foundation...more info coming soon!

You might recall that a couple of weeks ago Charlie received her eye gaze system. She was an old pro at it in no time at all but what is even more amazing is that she REALLY started talking around the same time! Charlie is saying a lot of "I wants"now! "I want bubbles" "I want sparkles" "I want Lilo and Stitch" "I want mama" "I want papa". How amazing is that?! It's something new everyday now, she just keeps surprising us! Matt and I are so, so proud of her and regularly discuss our growing love and admiration of the little miracle girl we made. She never stops amazing us. 

Happy 35 month birthday Charlie. We love you, love you, love you!




Thursday, May 3, 2012

Exciting times!


(Charlie and mama at Children's hospital for her bi yearly neuro review)













Last Thursday Michelle Eliot from CBC radios 'The Parenting Project' and 'On The Coast' came over to interview me about Charlie and my blog. It airs tomorrow at 5:20 pm on 88.1FM. This is the link to it as well:




Thank you so much for helping us raise SMA awareness Michelle! 


Well, we reached our fundraising goal for Charlie's Angels! So far, we've raised $3850 for The Gwendolyn Strong Foundation, http://thegsf.org/home/! And they blogged about Charlie's Angels here: http://thegsf.org/blog Thanks to all who donated, and if you'd still like to, here is the link to the Charlie's Angels Facebook page:

http://www.facebook.com/pages/Charlies-Angels/378876302145969

The Marathon is this Sunday, May 6th. I'm nervous! Wish us luck!


Charlie was lucky enough to qualify for an Eye Gaze System recently. Basically it's this really awesome computer where she uses her eyes as a mouse to communicate with us. It blows my mind what technology can do! It also blows my mind CONFIRMING how brilliant my little angel really is. I mean, we always knew it, but now we have proof! She is picking it up so fast. I'll post videos soon. Of course, the second we find out Charlie qualifies for the Eye Gaze, she starts talking more and annunciating her words better...not that I'm complaining! She also just got her standing frame. So, things are getting pretty exciting around these parts! I'm attaching a couple of videos of Charlie in action. Just when you think you can't love her anymore...










Wednesday, May 2, 2012

Hard at work.


Charlie just got a standing frame so she is now STANDING!!! I took this adorable picture of her the other day. I really need to get a life. 




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 http://www.facebook.com/TheAnayaInitiative. 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!