Saturday, January 22, 2011

Happy 19 Month Birthday Charlie-Anne!

(Charlie 19 months old, with Iggle Piggle & Upsy Daisy)

“If you had no bones at all

Then you couldn’t run or crawl

And you couldn’t stand up straight

Or eat dinner off your plate

Without bones we’d all fall down

Just like puddles on the ground

Just like melted ice cream cones

If we didn’t have our bones”

These are just some of the lyrics to one of Charlie’s favorite Sesame Street songs sung by The Count. I get that the song is trying to teach children about what bones are and what they are used for, but if you ask me I think it’s a tad insensitive…I mean there are handicapped children on Sesame Street, kids who can’t “stand up straight or eat dinner off their plate” and they are comparing them to “melted ice cream cones”. But, Charlie loves the tune, and so far she doesn’t understand the lyrics, so I let her watch/listen to it because this is MY reaction to the song, not hers.

I do worry a lot though. I worry about when Charlie really notices she’s different. It breaks my heart to think about it. I know she notices some of her differences now, but she spends a lot of time indoors and with adults, so I wonder if she thinks, ‘when she grows up’ she’ll be able to do the things we do. Charlie’s two favorite ‘family time’ TV shows are ‘Dancing With The Stars’ and ‘American Idol’…she LOVES singing and dancing…and that breaks my heart too. She loves the two things she can't do, and will never be able to do. We’ve been spending a lot of time lately trying to get Charlie to talk. She babbles a bit, and says mama and dada, but not much else. SMA children often whisper because talking requires their weak lungs to constantly be taking breaths in, which is exhausting. And, we’re not sure if this is actually a symptom of SMA too, but we’re worried Charlie’s mouth might be seizing closed a bit. We have a speech therapist coming next week that will be able to answer some of our questions, and hopefully ease some of our worries.

Well, Matt and I have started our paperwork and planning for separating. And actually, we’re managing to communicate a little better with one another because of it. Obviously it’s stressful, but it really is the right thing to do for Charlie, and we both recognize that. We can now 100% focus on her, individually and together. We were wasting too much time being resentful with one another and not enough time enjoying our daughter, but we’re well on our way to figuring it all out. We’ve always been a good team when it comes to taking care of and loving Charlie, and nothing will change that.

I am getting super excited for spring! I can’t wait to pull the stroller out on a daily basis and take Charlie for long walks on the seawall. Lately, the highlight of her day is a 5 minute walk to the grocery store, and she oohs and ahhs at me picking out bananas and onions…BO-RING! I fantasize about sunshine and picnic blankets quite regularly. I am counting down the days!

Charlie is 19 months old today! 19 months! She is now closer to 2 than she is to 1! She has broken all the rules of SMA, and we’re gonna do our best to ensure she keeps doing so! We love you Charlie, stay amazing and keep smiling!

Friday, January 14, 2011


(Charlie 18 months, in the tub at Canuck Place)

Last Saturday I walked to a friends place for dinner. Upon leaving my house I grabbed my door handle and pushed a button to call the elevator…once inside the elevator I pushed another button to get to the main floor. I then walked towards the front of my building and grabbed the door handle to exit my building. On my walk, I pressed one crosswalk button, in one of the ‘undesirable’ areas of downtown. I then obsessed about reaching into my bag for sanitizer, but couldn't help but imagine the germs multiplying in my purse as my hand blindly reached down, down, down, searching for the 'decontaminate' so I decided against it. When I arrived at my friends apartment building, I pushed four separate number keys on the front directory before I was buzzed into the building where I grabbed another door handle, pressed another elevator button to get in, and then another to get up to the apartment, where I immediately washed my hands. Germs. Germs. Germs.

This is how my brain thinks now. I obsess over germs. I am Jack Nicholson in “As Good As It Gets”. I am that weird lady with chaffed hands from scrubbing them so much. I give sick people dirty looks if they cough in my direction. If I get a tickle in my throat I go through my mental Rolodex of recent people and situations that may be to blame. It’s an exhausting obsession to have. Matt was sick for two weeks and I managed to keep Charlie healthy…it’s so rewarding to know that all of the effort I put into keeping her healthy, worked…but at the same time it causes me to be RELENTLESS in my quest to keep her that way! Day 7 into Matt’s sickness, and 3 days before I left for Hawaii, I was sitting in the living room with Charlie’s nurse when Charlie sneezed…I instantly started bawling…I had failed at my attempt to keep her healthy, I thought. But, the nurse calmed me down and told me not to worry yet and that it was probably nothing, and she was right. Now I find myself counting her sneezes and ‘allowing’ her a daily quota…any more than 4 and I’m officially allowed to lose it. I am constantly giving Matt grief over where he should kiss Charlie… “NO! Not on the face, FOREHEAD ONLY in the winter!” And, “No hand touching, grab by the wrist only!” Just crazy demands, or so it would seem to others…but this is the love of my life we’re talking about, and if a thoughtless kiss could steal her from me, well then it’s just not worth it. I’ll risk being/seeming ridiculous in exchange for a healthy Charlie, any day.

Hawaii was amazing. Lyn and Carly SPOILED me! Definitely one of my best trips. Thanks ladies! When I was making plans to go to Hawaii I booked Charlie into Canuck Place for 5 days, I was back on day 4 of her stay so I also got to join in on the relaxing Canuck Place action. We ended up extending our stay (twice) to 10 days! It’s strange, we feel SO at home at Canuck Place…we live 6 blocks away, but what a difference 6 blocks makes. We spent our days with several amazing kids…an 8 year old, a 10 year old, a 12 year old, and a 18 year old (he celebrated his 18th birthday while we were there) I fell in love with every one of them. We spent every lunch and dinner with them, wrapped around two or three tables, and I came to the conclusion that these kids are pretty much the best kids on earth, and I really felt privileged to be able to spend time with them and get to know them. And, if it wasn’t for Charlie, I’d never get to know these kids and their parents…she never ceases to amaze me and is constantly teaching me/us something. I feel more connected to these kids and their families then I do with my own family and friends (no offense family and friends). They share something with us, that few people do…and it makes for a pretty intense connection.

The kids that frequent/use Canuck Place are really spectacular…I overheard one little boy, about 8 years old, saying, “Dad, I thought that after my surgery I wouldn’t be able to use my power chair for like weeks, but like 5 days later, I was fine.” He said it like it was no big deal…all impressed with his speedy recovery…what kid should have to get used to surgeries and the healing process? If that was me I’d complain about the fact that I had to get surgery, the fact that I had to be on a wait list to get surgery, the fact that I hurt for ANY amount of time after, and I’d tell my HORRIBLE story for years to come. I also met a woman who’s 15 year old daughter was diagnosed with Juvenile Huntington's disease…her daughter was a gymnast who didn’t have any signs of Huntington's’s until 10 years of age….and now, at 15, she can barely move or talk... her dad suddenly started showing symptoms and died from the disease as well, before they knew that it was in their genetic make-up. Just so sad. Kids are so innocent and resilient…and it’s so humbling to spend time with these little hero’s. By day 9 I was trying to contain my tears whenever we had dinner with them, it just really put life into perspective for us. That, and the fact that I seriously couldn't help but feel honored to be able to spend time with these little troopers who are constantly putting what really matters to the test. By the time we left, begrudgingly, we were preparing ourselves to miss these kids we had just met, and hoping we’d see them again soon.

We’re home now, and Charlie is the healthiest she’s been in months…we’re seeing plenty of leg and arm action, as well as some long term sitting up action which hasn’t happened in at least 4 months. She’s just unbelievable, beating the odds at almost 19 months old. I love her more than I’ve ever loved anything, and she’s in this stage right now where it obvious she feels the same. What more could I ask for?