Saturday, October 22, 2011

Happy 28 month birthday Charlie!!

(Charlie, pretty in pink, 27 months)

Growing up my mom called me 'Emma Clutz'. She said I didn't fall down the stairs, I tripped up them. If there was a piece of string in my path, it would drop me to my knees. To this day I don't exactly consider myself graceful. I've got weak ankles, a horrible sense of balance, I'm covered in unexplained bruises on any given day, and I look like an inebriated 5 year old playing dress up in my moms clothes when I wear high heals.
Being a clumsy person isn't exactly conducive with taking care of a totally dependant 2 year old that has zero room for error in her care, and that is FRIGHTENING.

I bring this up because I've had three nightmares in the past week that highlight the need for nothing less than perfectly executed care when it comes to Charlie's needs. It really is life or death. Has your baby ever fallen off the bed when you turned around for just a second? Well, that just. can't. happen. with Charlie. I dreamed that I was passing Charlie to Matt and she slipped through his arms and I screamed "Noooooooooooo" as she hit the ground like a 30 pound bag of sand. I woke up breathless and sweating and quickly reached over and put my hand on Char's belly to make sure she was breathing. After I got back to sleep I dreamed that I was at a party with friends and family...I had put Charlie down for a nap, and when I came to check on her there was a little girl sitting on the couch holding her all clumsily. It was a perspective I'd never really had of Charlie...she looked like a big flaccid doll in that little girls made me so sad. Then the little girl went to position her thumbs under Charlie's armpits in an attempt to sit Charlie up to face her...that's when my sadness turned to fear and hysteria...Charlie can't do that I thought, she needs major head support...I yelled "STOP" but it came out in slow motion, and too late. I saw Charlie's head slam backwards and that's when I jolted awake again. I grabbed my Iphone and wrote down my dreams in the notes section because I have a feeling these nightmares are affecting my days. I jolted awake again last night when I dreamed that one of Char's nurses put her suction too far down her throat and she wouldn't stop throwing up. I was freaking out because it is so dangerous for her to get sick because she can't swallow and is at high risk for aspirating because of it.

So yeah, stressful stuff. And I'm beginning to think that it's those dreams and thoughts that cause me to get stressed out, and have made me sick. I'm happy to say that my cyst disappeared and I won't need surgery anymore. But, I'm still losing weight and feeling sickly which I'm getting looked at, but I wouldn't be surprised if it was all stress related. How can someone have constant nightmares and it not affect their days? So, I'm currently working on a stress reduction plan.

We took Charlie for her bi annual check up with her respiratory therapists and her neuromuscular team this past Tuesday. They say she is doing well, and of course that's great news...but I notice that I get super bummed after these appointments. They are a reminder of how 'different' Charlie really is. We discuss cutting tendons, future back surgeries, being bipap (breathing machine) dependant eventually... It just drills it all home. I notice that I just sort of plug my ears, fidget, and lalalalalala it all out and Matt is always super immersed in talking to the doctors and leaves feeling empowered with a pocket full of knowledge...I'm glad one of us does!

Charlie is 28 months today! I said 28 months!! We're celebrating with a Max and Ruby marathon. Pretty nice little Saturday I'd say!
Happy Birthday baby girl!


  1. do you have any other families to talk to that are dealing with SMA too? i think having nightmares about your child are normal. i still have thoughts during the day about charlie smothering himself or rachel falling down the stairs and smacking her head on the hard floor. it's hard to rid your mind of it sometimes. i can only imagine it's 10 fold for you. i hope you have other families to talk to.

  2. Dearest Cheri
    those night mares are definitely a reflection of what is going on deep within you, and of course that makes total sense. You are not living a "normal" life in anyways and that has got to feel like an up hill battle.
    My prayer for you is that you find your path of healing...don't wait till Charlie leaves...start now so you can live whole with her now. This sort of inner work would take you into the spiritual realm which has many many different options in which i am sure you will find one that fits you.
    You are doing an amazing job Cheri
    know it
    believe it
    Charlie picked you for a reason....there is no other life or mother for her...this is her journey and for whatever reason whe knew you were the best mom to journey with

    Love and Light to you

  3. happy 28th month b-day cutie pie.
    x j

  4. I agree with all of the above.

    You are having these nightmares because you are so afraid of losing Charlie. Do you belong to a support group for parents of terminally ill children? Dumb question I know.If not, I'm sure Children's Hosp will know of many.

    As I've said before, Charlie was sent to you because she needed the best Mum and that's you.

    Never, ever doubt that. I know it's hard, so very hard, but just think if Charlie had any other mother she may not be celebrating her 28 mo birthday. You have much to be proud of.

    You are doing the most awesome job in the most difficult circumstance there is. Charlie always looks so happy and content and that's all due to you and Matt and the unconditional love you give her.

    Happy Birthday Charlie!!