Today we took Charlie to Canuck Place to see Fred Penner. Besides the initial few tears, it was obvious from the huge grin on her face, that she was having a great time. So why does it ALWAYS make me emotional to see her having such a good time? Why can’t I just enjoy the moment too? Why do I always gotta take that happy, amazing experience to a dark, sad place? For the life of me I’ll never understand why.
(Image: Charlie 33 months, with Fred Penner)
I feel so selfish taking Charlie’s special moments and making them all about me. I see her smile and hum along to a song and instead of thinking, “Wow, Charlie’s really enjoying this, I should find more things like this to take her to.” I find myself thinking, “Oh my god! She could die soon and I’ll never see that smile or hear that hum again…I CAN’T live without that smile and hum!” Or, I feel guilty thinking I haven’t appreciated her enough lately…I go to the gym, I work, I spend time alone with friends….why am I wasting my time on those things?!
More than once today I thought, “I’ll just go out to the van and have a cry and Matt can bring Charlie out when the show is done”. And then, OF COURSE, I felt selfish and guilty again. “Let me get this straight…” I thought to myself, “I’m gonna leave this concert Charlie’s having so much fun at, so that I can go and cry in the van because I’m afraid I’m gonna lose that smile someday?” Kinda didn’t make a lot of sense to me…seemed a little counter productive…choosing to miss something I fear I’ll be forced to miss in the near future. I’ve never claimed to make emotional sense. But, at least I realized it and I decided to suck it up and stay and enjoy Charlie enjoying herself.
I scanned the room. So many beautiful kids. Some (seemingly) a little sick, some VERY sick. It will never stop breaking my heart. But I also feel so lucky to be in their presence. I really, really, do. I always look around at these events, see the little earth angels and feel instantly connected to their parents, even if we’ve never even introduced ourselves to each other. It’s an instant bond, at least on my part anyway.
Today, after Fred sang “You Are My Sunshine” all I could focus on was “please don’t take my sunshine away” and I couldn’t help but think bad thoughts. I was trying my best to hold back my tears and I wondered if I was the only parent who could not just appreciate this happy moment and again I thought, “what the hell is wrong with me?!” I looked around the room. So many smiling faces. Then, Fred sang, “This Little Light Of Mine”. Half way through I saw the mother of a very sick young boy and her sister? trying to hold back their tears, the mom eventually had to leave the room. My tears started slipping. I felt ‘normal’. I felt for her. I think I knew where her mind was going. I wanted to hug her. I still do.
I know it must sound like going to Canuck Place is too emotionally draining for me, but it’s actually just the right amount of emotionally draining for me. I ALWAYS leave feeling less alone, and more understood. The connections I form with people, many who don’t even know they affected me, are extraordinary. I get so used to being the mother of a sick child, that in a way, as we all do, I still take her for granted. Canuck Place does a good job of reminding me of how lucky I really am, and how precious our time really is. So why not smile and hum in the meantime?
This article has been featured in The Best of Everything.
About the Author
My name is Cherie Ehlert. I am a 35 year old mother to Charlie-Anne who was diagnosed with Spinal Muscular Atrophy Type 1 (SMA) at 6 months of age. SMA is a terminal genetic condition, Charlie was initially only given a few months to live, but is turning 3 years old on June 22nd.
I write a blog called ‘Sweet Charlie-Anne O’Mine’ about my experiences and emotions regarding my daughter’s diagnosis.