Sunday, March 27, 2011

Special bananas.


(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.

video

11 comments:

  1. Everytime I read what you have to say it is like I am reading a book about a mirrored story of my life. Like someone else gets it. I feel and understand every single thing you say and I think I catch myself sighing a breathe of relief that someone else understands. We don't have other children to compare a 'normal' life to but the life that we have is so special and like you said, we love who they are. I spoke to someone on the phone the other day and mentioned how I can't easily leave the house because of having a 'special needs child' (a term I find being used more and more often), and he asked how much the gov't was paying me to have a child like that. He thought I was a foster parent making money looking after this unwanted child. It made me sad to hear that. 'She is my daughter, I don't get money for her', and then continued to tell him what a joy she was, like I had to justify her. Our children are what is right with this world, their love and innocence. I wouldn't trade Gemma for anything. Thank you for your postings, I could read them all day. Amanda

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  2. i don't think you are kidding yourself. i am at peace with rachel having down syndrome. but i know many people that have taken months, years or are still on that journey. like charlie, rachel is our one and only (at least for a couple months), and we have no one to compare her to. and i think that is a blessing. we got to know our rachel without comparing her to her siblings. while it is difficult and will become even more difficult to find activities that are at rachel's developmental stage, they are out there. you just have to look. :) i am shocked that no one offered you a seat. i bet if you had called ahead and explained your situation they would have accommodated you and had seats waiting. something to think of next time? i also heard that disney world/land is a great place to take special needs children. the staff there is trained to make them feel like princes and princesses. a second birthday trip maybe? :)

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  3. The video is a delight! It's wonderful to hear Charlie giggle.

    Please don't get down on yourselves for being human. It's only natural to have ups and downs. You're doing great.

    Linda

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  4. I love her! Had awesome dreams about Charlie last night. her video made Cohen laugh.

    Love to all of you!

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  5. Charlie brings a smile to my face and warmth to my heart whenever I look at her and you get to live with that...Cool Cher. Beautiful post, thank you and love to all three of you! <3

    L

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  6. Haha-btw I forgot to say how freaking cute she looks in her jersey!!! *melt* :D

    xo

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  7. OMG her laugh is AMAZING!!!!!

    I am a firm believer in everything is a choice.
    Simple.
    The glass is half full or half empty...
    there are days that are better than others...and some when we just need to retreat and acknowledge the emotions of the journey, grieve, be still, reflect....
    but this is life, a real life, that is how I see it...and that was what I wanted...a real life that wasn't "normal" because I just am not quite sure what "normal" is, so I am more at ease with the opposite.

    love and light

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  8. I kept hitting the replay button over and over again just to hear Charlie's adorable laugh. Her excitement at tasting the banana was palpable. Charlie is a beautiful, happy and very much loved little girl. Her world as she knows it has everything she could possibly want -two parents who love her to bits, flowers, sunshine, rainbows, smiles, movies, friends/family and so much more. While most of us gulp down bananas without really tasting them, Charlie savours them with relish and delight-tasting and appreciating every subtle flavour and texture, being mindful of the moment-something which many of us aspire towards. Thank you for sharing these special moments. Sheryl

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  9. i was searching through the craigslist ad's in the childcare section, and came across something that made me grin from ear to ear. it was a job posting for caring for a 5 yr old child with SMA type 1! yes...5 yrs old!!! i imediately thought of Charlie (as ive been following since she was 10 months) it got me thinking...wow! this is so great, Charlie has just as much possibility of reaching 5!! thought id share some positive light :) keep doin what your doin Charlie!! you too mom! ;)

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  10. I have been reading your blog for the better part of an hour now. Thank you for sharing your story. I am now a follower and look forward to reading more.

    Amanda

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  11. just wanted to pass this along. it's the top travel destinations for kids with special needs. http://www.abilitypath.org/health-daily-care/daily-care/playing/articles/travel-guide-disney-special-needs-disability.html

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