(Charlie with Daniel Sedin, in the newspaper advertising the Canucks For Kids Telethon)
On Friday I took Charlie for an appointment at Children's Hospital to have her gj-tube looked at because its been acting up a little. Everything was fine and since I'd paid for two hours of parking I thought we'd stop and have a coffee and check out the kids together. It's a bit of an ordeal to get Charlie in and out of the car, so when we actually do, I want to make the trip worth it. Anyway, as we were getting ready to head out, a lady noticed Charlie's gj-tube and came over to tell me that her son used one until he was 2 1/2 years old. We chatted for a bit and she asked me when Charlie would be off of hers, and I explained that she would always have it...she then looked at me and said, "It's sure something having a special needs child, huh?" I nodded in agreement and said, "but a lot of it is good." She looked at me with shocked, wide eyes and seemed like she was either confused or suspicious...her expression made me wonder if I was lying to myself...am I the comedian who is crying on the inside? I self consciously muttered that my perspective on a lot of things has changed for the better. She just looked at me and said, "Im not there yet." And I really respected her honesty. Her two boys, that she had mentioned earlier were 3 and 5, then ran up to Charlie's stroller to check out the goods when I noticed that her younger son appeared to have Down Syndrome...I was left to wonder what her journey looked like.
That experience got me thinking. Am I being honest with myself? Lately I've had two interesting dreams about Charlie one where she was crawling and I kept ECSTATICALLY exclaiming "OH MY GOD, OH MY GOD, OH MY GOD, while my eyes spilled happy tears, and one where I was bawling and pouring my heart out to a therapist about how difficult this situation is on me. But, in 'real' life I feel pretty OK most of the time. Yes, I have days where I actually WANT people to feel sorry for me, and yes, there are days where I just go ahead and feel sorry for myself if no one else will. But, I'd honestly say that's only about 1/4 of the time. I get flashes of 'after Charlie' and I'd consider that to be in the 1/4 of the time catergory, but most of the time I'm just so completely happy with her and EXACTLY what we have and what she is. When you're told you only have three months left with your child anything above and beyond that feels miraculous and amazing. I also think it has a lot to do with the fact that she is our only child and we don't really have a lot to compare her differences to on a daily basis...she's just Charlie, and she's special. I will say that her differences are definately highlighted after a day out with 'normal' kids, and those are usually the moments that I tend to feel sorry for myself.
One of those moments happened this past Friday. Matt and I took Charlie to Science World...we lasted 11 minutes. We walked in, paid 30$ for two adults, and went to watch the 'fire show'. All of the bench seats were taken so I had to stand and hold Charlie. She was hooked up to her feeding pump and I lifted her limp body out of her stroller, her head tilted and squashed sideways into my chest. Charlie is about 25 lbs now and cannot support herself at all so it is extremely difficult to hold her for extended periods of time...she also breathes through her stomach so holding her against you, which is the only option while standing, puts pressure on her stomach making it more difficult for her to breath. It became obvious to the people around us that this little girl was sick, yet NO ONE offered us a seat where she could have sat supported on my lap and seen the show. We put her back into her stroller and started cruising around to see what else we could show her. Within seconds we noticed that Science World wasn't built for Charlie, or kids like her...she couldn't reach anything, and if we brought her to it, she wouldn't be strong enough to use it. And EVEN if she was strong enough to use it, think about all those GERMS! Depressing! We both said, "wanna get our money back and go?" at the same time. And we did. We quietly walked the seawall home, both of us reflecting on what had just happened, and worrying about what was to come. We stopped at a bench, cracked a couple of bananas, and shared them with Charlie. She licked her banana and proudly exclaimed, "MMMMMMMMMM" over and over between giggles. And everything was good again...that's Charlie, that's what she does.