Tuesday, March 16, 2010

Palm trees and waterfalls.

(Charlie and mommy, 8 3/4 months old, Hawaii)

Catastrophist, anxious, panicky, hypochondriac...these are just a few of the things I've been labeled as in the past (I've labeled myself with these terms as well). I am my mothers daughter, full of opinions and full of fear...of earthquakes, of flying, of driving, of health issues...you name it, it scares the shit out of me. BUT, I've always known my fears were irrational, and I've tried to face them...well, most of them...you'll still never catch me sky diving or riding a Harley on a cross Canada trip. I'm pretty good at convincing myself that I'd rather live while I'm alive, as opposed to avoiding everything "unsafe" just to live the longest and most boring life ever. So, when Matt and I got the news about Charlie, I had already pretty much prepared myself for just such a scenario...I thought. I had "prepared" to lose my mind in a circumstance such as this, to roll over and die, to be a lifeless zombie that my friends didn't recognize... but I'm not any of those things, I have pulled things out of me that I never knew existed. Seriously! I can still laugh, put make-up on, go to the gym, love my beautiful daughter with all of my heart...and not just because I have to, but because I WANT to. I have totally and completely shocked myself with what I am capable of...since day one with Charlie, my life has changed so much for the better, SMA or not.

I was always 50/50 about whether or not I wanted children, until I turned 30, then I started thinking about kids more and more. I thought I wanted one...I wanted to experience pregnancy and motherhood...but, I was really nervous about labor and giving up the life i was accustomed to living...was I ready to commit to diapers and a 9pm bedtime? Of course, in a very Cherie way, I worried about everything my entire pregnancy, but when I met Charlie I was instantly in love...she came out smiling, and Matt and I were honored to meet her. Any apprehensions I once had were gone...those days seem like forever ago... I lived 32 years before Charlie, but its the last year and a half that I remember the most and the fondest. It has been the most life changing experience ever.

With everything that's been going on I worry most about how I will be strong enough for Charlie. She doesn't even know that she's slowly dying. She has absolutely no idea. She is the happiest little girl ever. That's almost the worst part. Matt and I often look at her and she is grinning from ear to ear and we smile and point it out to each other, and than reality hits...like how can somebody so happy be dying?! It plays over and over in our heads. A rage bomb goes off inside of us when we can't shake the thought. Sometimes we talk about it and try to think of a way we'd be able to accept this situation better...like we'll think, "If she was slowly losing her mind, than maybe we'd understand and accept it better." But, she's not, she is smarter, more aware, more vibrant, than most babies, and it's because she only has her mind...so, we love that we have that, but sometimes that makes it worse too. Just being here and seeing beautiful two year old girls running into the pool in their cute little bathing suits hurts my feelings...yesterday we took Charlie into the kids pool and put her feet into a waterfall, it was a great moment for us; and when not less than ten minutes later another couple brought their 'normal' baby girl about the same age as Charlie into the water and re-enacted our toes in the water scene, we again got hurt feelings. We don't not want other children to be happy and healthy, I think it's just a natural envy that only time will heal...we'll get tougher.

Matt told me today that he read a story about a 17 year old girl who has SMA type 1 who was carrying the torch for the Vancouver Paralympics. I started crying after he told me. I felt bad...he told me because he was full of hope - I of course, became full of fear. I'm afraid that I'm not that mother who makes it happen for their child against all odds...every article you read with a story like this, the mom fought with schools, government, medical professionals, etc. Can I do this? Holy pressure! I know Charlie can, she's amazing...but will I/can I fight for everything she needs to live the best life she can? Charlie is teaching Matt and I something new about ourselves everyday, that's one of the positives in this situation. We have never been closer. I have never felt stronger. And we have never loved more.

We have 4 days left in Hawaii, it has gone by so fast. I can't even tell you how much we needed this time alone together. We will ALWAYS have Hawaii.


  1. You are stronger than you realize. I could see it in you right away. I think you will just become stronger and stronger through all of this. You can do whatever it takes for Charlie ... thats really what being a mom is all about. The joy she brings you will always inspire you.

  2. Hi Cherie,

    You don't know me, I'm Carol's sister. I've known your Dad, Wayne, a long, long time. Your Mum sent me the link to your blog. I just want to say that Charlie is absolutely beautiful & she is precious beyond words. Please know that there are many, many people, people you don't even know, who are holding Charlie, you and Matt in their hearts & are sending so many positive thoughts, white light and prayers to Charlie.

    Keeping you all close in thought and prayer.



  3. My god, you guys amaze me. You will never know how much impact your strength has on others. I know that isn't nearly enough, given all that you hope for. But to the rest of the world, you are amazing. And we love all three of you very much.

  4. Thank you friends! We are so glad we have your support and love.

  5. its amazing the strenghth that is in us moms,stay strong you are a role model for your bravery and dedication keep it up cox's family you are in our prayers

  6. Cheri, Your words, your spirit and your honesty are so powerful. I'm thinking of you, your beautiful daughter and family. With all my love, Ellen