Saturday, May 21, 2011

Fragile.

(Me and Charlie, 22 months, on the swing at Canuck Place)


















I haven't written in almost a month. Well, I have...but I just couldn't seem to finish an entry. This isn't unusual for me, especially when I'm feeling extra emotional and overwhelmed, which I have been. It's crazy, whenever I'm feeling this way, I always get self conscious and think I should quit my blog, or at least privatize it...I start to obsess that the world (or whoever reads my blog) have front row seats to the 'Unravelling of Cherie Show', and my cheeks go red and I'm instantly mortified. But, EVERYTIME I've decided it's time to quit, something happens to remind me why I need to keep writing.

Last week I got a message from a woman in the States who follows my blog, It read simply: "Hope you guys are well." Just 5 little words, but it meant the world to me and reminded me that people care, STRANGERS care. And that was all I needed. Two days later Matt and I took Charlie to the Aquarium where they were holding an event for Canuck Place and Children's Hospital kids, on the way there I told Matt how I was thinking of quitting my blog and how that woman had changed my mind, he agreed that it was important to keep it up. By the time we hit the line up to get into the aquarium I knew it was going to be a BIG lesson in composure. All these little kids who have battled things most of us adults could never imagine having to deal with. The worst part for me was that Charlie was so happy to be there yet my tears were still just dangling there on the edge, threatening to jump any second. I couldn't even be happy for Charlie, I was just so caught up in my own emotions. We walked around, checked out the Charlotte Diamond and dolphin shows, and bumped into old Children's Hospital friends and fellow Canuck Placer's. I'd almost reigned in my tears when I saw a family there that I recognized from Canuck Place, their teeny tiny baby barely holding onto this world...I motioned for Matt to look. Like me, he couldn't stop staring, and I knew his mind was going to the bad places mine was. I mumbled, "I need to go...now." He said, "Yup, OK." and we did a quick spin around, and headed out.

I couldn't wait to get to the car. I had it all planned out...I was going to get Charlie all buckled in, get in the car myself, and commence a big ugly cry, snot and all. I could see the car, It was 10 meters away, when a woman yelled from behind me, "Hey! I know you." I didn't recognize her. She came closer and said, "Charlie?" and looked down at Char. I said, "Yes." A little confused. She said "The Internet, I know you from the Internet, my counsellor who was your counsellor recommended your blog." She then said, "Your blog is so beautiful, your words are SO true...I feel like it's my thoughts exactly, your honesty...oh my god..." I looked at the car that was only 10 meters away from me and I knew I wasn't making it back there with the dry eyes I had barely clung to for the past hour and a half. We both started bawling and spewing our private and painful thoughts. I walked to Ani's car and met her 5 year old son who has a severe form of Cerebral Palsy because he had a stroke in utero. He was beautiful, but like Charlie, a lot of hard work emotionally. It was definitely a profound moment in my life, and yet another reason to keep blogging.

A couple of weeks ago we took Charlie for a swallow test. We just wanted to see where her swallow was at. We'd been giving Charlie licks and tastes, we just wanted to know if she could perhaps handle a little more? In the waiting room one of Charlie's doctors came to say hi and asked why we were there, we told her and she expressed great concern and told us, "you have to be VERY careful with these special kids." Matt and I were second guessing the testing but she assured us that Charlie would be very taken care of during the testing. And she was. But it only lasted about 30 seconds. We strapped Charlie in an elevated chair, put x-ray machines on either side of her head and I gave her about 2ml of water with barium in it while they recorded the track it took down her throat. It wasn't good. They played the video back to us where we could see that Charlie was struggling BIG TIME, to swallow the water. They said they worried that they could see some of the water going down the wrong tube (aspirating) which pretty much is EVERYTHING we are trying to avoid with Charlie because it goes to the lungs causing pneumonia/drowning in ones own lungs. We left radiology and I bawled. Matt said, "Cherie, you had to expect this, right?" And yes, I did, but when you're told at 6 months of age that your baby only has a few months to live, and a year and a half later she's still here, you kind of start to think she's tougher than she really is, especially when you have nothing to compare it to. And that's how I felt before the test. I felt like I'd be sucker punched after the test. Expected? Yes. Does it hurt any less? No.

Well, Matt and I are now living separately. Its been a little difficult working out our custody plan with Charlie. We both just love her so much that we want to be with her all the time...especially waking up and going to bed with her. But, so far it's going as well as can be expected for something so fresh. BUT, being separate we've both noticed how important our nurses are to us. I have spent a lot of time trying to use as little hours as possible for a couple of reasons...one being that as her mother I feel like I should be able to provide all her care, ESPECIALLY when I'm not working yet, Also, I felt like if Matt and I are sharing custody, we should be able to get away with using less hours because we're both getting 'breaks' during the week. Matt's always been more of an advocate of the nursing, and I'm beginning to understand why. Charlie is 25 pounds of dead weight ( I hate using that term, but it's the only one I can think of) She seems to be getting weaker lately and several times a day she starts choking on her saliva and we think its the end (the worst feeling EVER, especially when you're dealing with it alone) and she can't really be left out of ones sight anymore in case she chokes. She just seems so fragile lately. Even getting her in and out of the car now is a scary production. Its a backbreaking effort for us and uncomfortable for Charlie who usually cries, creating more secretions, which puts her at a greater risk for choking/aspirating.

Speaking of suctioning and secretions, On Thursday I went for a walk to Granville Island with Charlie and my friend Sandi. About 20 minutes in, and finally at the bottom of a VERY steep hill, I noticed Charlie needed a suction. Charlie now relies on her suction, it could mean the difference between life and death if she doesn't have it. Anyway, I went to start it and noticed that I had forgotten a very important piece to it, it wouldn't work without it. I freaked out! What the hell do I do?! Omg!! I remembered that I had a portable emergency suction, and found it and used it for my first time ever. It required me to put a tube into her mouth, while I manually sucked on another tube...like sucking a really thick milkshake, but the saliva stays in a little vile attached to both tubes. My parents were meeting us at Granville Island so we hurried there and waited for them. I continued to suction Charlie with this portable device and I'm sure people were a little grossed out. All I could think was, "How the hell did this end up my life? I'm siphoning spit out of my kids mouth every five minutes in public." I ESPECIALLY thought that when I accidently let the little vile overflow and sucked up all the old warm, thick saliva into MY mouth! I learned my lesson, I'll never let that vile overflow again!

We recently spent 4 days at Canuck Place. Man I love that place! EVERYTIME we're preparing to go to Canuck Place and I pack Charlie's bags and round up all of her equipment, I think to myself, "Really? All of this work to go a few blocks down the road and possibly get ourselves and Charlie all outta sorts?" And EVERYTIME I'm proven very wrong. It only takes about 10 minutes to feel completely at home there. Matt and I are still shocked, yet weirdly put at ease when we hear a feeding bump go off that isn't ours. Finally! We're among some of our kind!
We booked our stay at Canuck Place so that Charlie wouldn't be at home while I was packing and the house was in chaos, and I'm really glad we did. Emotions and boxes were all over the place and Charlie didn't need to be home for that.
While we were staying there I noticed that one of the nurses I take crossfit classes with at Canuck Place, had a foot injury. I asked her about it and she said she had hurt it running and then said she wouldn't be able to do the BMO 1/2 marathon the following Sunday. She then said, "Why don't you do it? You can do it, you've been training enough...take my place." I gulped and stuttered nervously, "Ummm sure." And that was that. I had two days notice and was all of a sudden running a half marathon (21.1k) And I did it! And I was on FIRE! I DESTROYED it! I ran it in under 2 hours non stop. I was high for days after. Thanks for that Sandy!

Tomorrow is Charlie's 23 month birthday! UNBELIEVABLE! I'm sooo looking forward to her 'terrible two's'!!
Happy Birthday Princess!





21 comments:

  1. proud to know you Cher...

    and happy bday Charlie...

    gordo

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  2. Don't ever give up. This post means so much to so many. We all believe in you and love you. Stay strong!
    Sending waves of love.

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  3. I have been following your blog for more than a year now. I have a daughter the same age as Charlie. I was starting to get worried that something had happened when you didn't post for so long. So glad that you are back at it. Thanks.

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  4. Hi Cherie,
    You have tons of people who support you and Charlie and care about you both. I worry when I don't hear from you. I'm so happy to have 'met' you and really look forward to hearing from you and Charlie. I think about you two often. Sending positive vibes and thoughts your way tonight.
    Christine

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  5. as crazy as it may seem, some stories and families stick to you. while i may never meet you or charlie, i want you to know that i will always be rooting for you and wondering how you are. our lives may be different in very profound ways but we are still connected by that bond only special needs parents know and the fact that i am a carrier for SMA tightens it even further. keep sharing, SMA awareness has found a loud voice in you and other families dealing with these emotions need to know they are not alone.

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  6. Courageous
    Honest
    Beautiful Human

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  7. Caroline and EliseMay 21, 2011 at 8:38 PM

    don't really know what to say, except I think you are just simply amazing!!!
    Sending you lots and lots of love and strenght!!
    Next time I see you, expect a big hug!!

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  8. Thank you for your honesty. May today hold something wonderful for you and Charlie.

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  9. Cherie
    I am so glad that you have decided to continue with this journey....
    there has been times when I have felt that way of being on the other side....should I be here, reading your story like this
    but every time I do I see the beauty of life and how fragile it really can be...
    Your voice matters...your story is real life
    I wish there was more of this kind of thing on the news...and in movies...real life happening to real people...

    Sending love and light to you and your precious Charlie

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  10. Hi Cherie,

    So glad to read a new post from you. I love your blog and how brave you are. Thank you for sharing your life with all of us, it is truly amazing.

    Sending warm thoughts your way and to sweet little Charlie.

    Katrina

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  11. Thank you so much for sharing your life with us. Much love to Charlie, you, and your family.

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  12. I've been wondering where you have been. I was wondering (hoping!) if you might be at the Vancouver Mom top blog party last week. Keep on writing these posts. Your love for your sweet girl is evident.

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  13. Thanks for your kind words and positive thoughts everyone!! Means a lot to me!
    Much love!!

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  14. so amazing 23 mos! :) you are both beautiful. stay strong.

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  15. As a mother of a child with severe Special Needs, I have never used the term Handicaped or Disabelled since Anthony was born 5 years ago, it was my priviledge to have met you. I do not believe in coincedences, I know that everything happens for a reason. You are going through exactly what I have gone through and still am going through to this day. My life will never be "Normal", but it is my "Normal" and I do own it. Sending you lots of hugs and kissess... May God be with you always......

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  16. Your Blogging is a wonderful thing Cherie, I hope you don't stop. In fact, I hope you write a book someday, this Blog is a great resource for that.

    I admire you immensely, you are a strong woman. I hope Charlie is doing OK with this terrible so called "spring" weather. More like "Sprinter & Mayvember" than Spring.

    Happy 23 month Birthday Charlie! & sorry I'm a bit late.

    Linda xoxox

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  17. Hi Cherie. I too was waiting anxiously for your next blog post and am relieved that you and Charlie are fine. Firstly, you look gorgeous in the photos. I haven't seen you since you started running and exercising and you look fit and beautiful! Congratulations on running a half marathon in under 2 hrs-that is a phenomenal time! I can only imagine how difficult and emotionally draining some of the blog posts must be for you to write but your voice has touched the hearts and lives of so many people, some of whom share similar stories and some of whom simply care about you and Charlie. I continue to be amazed by your strength and courage. Remember, you are not alone Cherie, not for one minute. There are so many people out there cheering for you and thinking of you. Sheryl.

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  18. I pray for her everyday she's such a little angel

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  19. Haven't seen an update in a while - and wanted to send you a note to say that I still keep Charlie in my prayers. I look forward to reading all about her terrible two's!

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  20. I just stumbled upon your blog and when I was about to leave it, I kept reading. YOU made me cry over here. I have a baby myself and all I could think about, thanks to you, is how lucky I should feel and to honor that because health is priceless and sometimes taken for granted these days, especially when it comes to our little ones. Keep blogging, you need the therapy of letting it all out and us we need it as a reminder to stop complaining about vein things.

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