“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!