I love her.

(Love of my life, 43 months)

We've been home from the hospital for a week and a half now. And something is different in me. I'm afraid. I'm not sleeping well  (even when I have the opportunity to do so) and I'm crying a lot. For the first time I am really seeing things for what they are. Yes, yes, I've always acknowledged that I have a "terminally ill" daughter but honestly it never really, really registers. If I'm with a group of people and the topic of Charlie comes up and someone doesn't know her or about her  situation I will explain that she has a "terminal illness"...I honestly keep saying it so that one day I will really hear  it and it will sink in. I do this because I think it will help me to 'prepare'. I've come to believe that it's our bodies way of protecting us...we shut such painful things out so we can carry on...who could honestly feel the weight of that on a daily basis and still get the laundry folded? What is changing though is that it is all really, really beginning to sink in...I have a terminally ill daughter.

This last hospital visit was intense and eye opening. At one point Matt and I met with a group of doctors and a hospice nurse and discussed our 'options'. Everyone was gentle yet frank, they really wanted us to have as much information as possible to make informed decisions about where we want to go with Charlie's care. We discussed that if/when Charlie dies it can be pain free and in our arms.

My eyes just welled up typing that. 

I can't stop fixating on the fact that in my lifetime my child that I (we) made and dreamed about our whole life and future with, will die in my arms. That is just fuc*ing brutal. I can't believe that I am that woman, that this is my life's path.

It was explained that at anytime, Charlie could get a plug in her throat, start choking and we may be unable to help her. I could be on the seawall, just walking along and this could all go down. I'm terrified of being alone when something horrible happens. I've developed separation anxiety. When Charlie goes to Matt's I get desperate moments to see her. What if the last time I saw her is the last time I ever see her?! But at the same time her care has become so much more demanding that we need the breaks too. Thank god for FaceTime. When we're home alone with Charlie she needs to be constantly watched. When I do the dishes I am continually yelling out to her in the living room, "Charlie say coca cola, Charlie say "Shrek" Charlie say, "momma" if she replies she's not choking, if she doesn't she may be and I need to run in and check that she's OK. This is our normal now.

The progression of Charlie's disease just sort of snuck up on us, like when you look at a picture of your child a year ago and you stare in amazement and really realize how much they've grown. There is no denying that Charlie is not the same kid she was a year ago. Smarter? Yes. Funnier? Yes. Talking up a storm? Yes. More beautiful than ever? Yes. Even sweeter (if that is even possible) YES.  But sicker and weaker? Yes. :(

I pray, pray, pray, that our girl keeps fighting and loving life and that Matt and I have the strength to handle whatever comes our way.

I love her, I love her, I love her.

Keep shining.

(Charlie, still smiling through it all, almost 43 months)

Warning: this is not an uplifting post.

Charlie is in the hospital again. But not because she's 'sick' but because we think the disease is progressing. I honestly don't now which is worse. If she 'just' gets sick, and doesn't die from a plug or any of the scary complications that sickness can bring, she has the opportunity to get better again, IF she makes it through. If she stays cold free and the disease 'just' progresses on its own, there is no turning back from there, it's just the new and less improved Charlie. Two complete shitty ends of the stick. The sad truth is that every sickness Charlie gets and makes it through from is one more X on her borrowed time card...every sickness takes a little something from her that she'll never quite get back.

These past few weeks Charlie has been sounding like an old pug. She has a lot of secretions (spit) building up and we are literally suctioning her every minute. But she's happy. So happy. As was the case with Charlie's delayed/questionable sickness and diagnosis in the first place, how do you know something is really wrong with your child when they are smiling ALL THE TIME?! Charlie has been having laboured breathing and has pretty much just been like, "I can't breathe but whatever, I love my life I'm gonna smile and laugh and sing and randomly say in my sweet Elmer Fudd voice, "I wuv you momma" and make everyone else around me melt to the sweetness that is Charlie." And that's what she does, she sweetly asks me, while batting her eyes, "I want momma to hold me like a baby." And I do, and she chokes, and I hurry to put her down ans suction her. But she just continues to risk it and love and be loved. It's worth it to her. She's amazing.

In the past week Matt and I have both individually experienced an episode where Charlie chokes when we are alone with her and we see her life (and our own as we know it!) flash before our eyes. For myself, I was putting her down for a nap the other day when I saw Charlie's eyes closed, her mouth open and in a circular shape like a person who is experiencing a hard cough, and heard some wheezing...but it was the look of shear fear in Charlie's eyes that told me, "NO, this is SERIOUS!" I started suctioning between POUNDING her back, I was trying to move out whatever was trapped...I looked around my room, I don't know what for, then I wondered where my phone was...I was frantic and wondered, "Should I run out to the hall and scream for help?! WTF do I effing do?!" All while pounding Charlie's back and sides and suctioning as deep as I could go. In the end I decided that running out into the hall wouldn't do any good, NO ONE but me could help her, IF she could be helped. No nurse, no doctor, no one. It would be too late by the time anybody could intervene. Charlie eventually settled. And I sat on the bed beside her and thought, "Holy sh#t. this. is. my. life." I was drained. Imagine your kid running into traffic and coming so close to being hit by a speeding SUV and you going into fight or flight mode and wondering "is this it?" Almost every. single. day. and sometimes a few times a day. It's not right. It's just not right. We are walking a tightrope with Charlie in our arms, who is looking innocently and lovingly into our eyes, and trusts us to protect her and keep her safe from harm. And that's the case with every parent, I get that, but I just feel like our fight or flight life or death scenarios outnumber our carefree breathe easy times, and it's just not right.

The scariest thing that's been on mine (and Matt's) mind is what Charlie getting sicker looks like now and in the long run for Charlie. A couple hours after Charlie was admitted to Children's hospital Matt and I had been given the tracheotomy talk. Please allow me to note beforehand here that I realize that this can be a touchy subject and I do not want your opinions on this nor do I want you to think I'm judging your decisions, this is my daughter, our life, our choice. OK, with that out of the way...from day one Matt and I discussed that a trach would not be our route. We would use bipap, but didn't want to trach Char. Our reasoning is that we felt like she would be letting us know that it was her time to go. Anyway, our discussions on it are not carved in stone, and we will be revisiting this subject tomorrow with all of Charlie's doctors and medical team. Let me just say that it has been a very emotional few days where I wonder "If we trach her she can't talk anymore and she needs 24hr round the clock care and what if she was telling me she wanted to go.." And on the opposite end of the spectrum, "If we don't trach her and they find a cure in 2 years will I be riddled with sadness and guilt at what might have been..." And of course I have NO IDEA how I'll be 'after' Charlie...I'm terrified of the unknown and my grief. There is no definitive answer. And I frankly do not fu*king like that! This is one of those choices in life that I wish wasn't mine (or Matt's) to make.

For the time being we are just going to bipap Charlie more, treat her like the fragile princess she is, and enjoy our time with her. Charlie is the love of my life and I cannot imagine spending my life without her in it. Matt and I are going to consider this hospital stay a reality check, one where we are reminded that our daughter is very sick and to really, really, enjoy her (and life in general) while she's here and happy. 

We loooooooooove you Charlie. Keep shining sunshine!

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?

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!

https://www.facebook.com/pages/Charlies-Angels/378876302145969?ref=ts

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.

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 @

https://www.facebook.com/pages/Charlies-Angels/378876302145969?ref=ts

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!).

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!