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.

Wednesday, March 23, 2011

Strawberry girl.



We've been letting Charlie lick/try food lately. She loves it and its helped make her more vocal. Pretty awesome.





Tuesday, March 22, 2011

Happy 21 month birthday Charlie!!!

(Me and Char, 21 months old)



















A very happy 21st bday to my sweet Charlie Barley! Mama loves you!

Wednesday, March 9, 2011

Mad about you.

(Charlie, 20 months)



















There's a look we've all caught a loved one giving us before. It's a look that's not necessarily intended for us to see, but we consider ourselves fortunate if we do. It's that look that gives you a quick glimpse inside their psyche, where for just a couple of seconds you can see yourself through their eyes. I'm talking about that look that shows you just how much you are loved...the one where you can actually feel how proud of you they are...that look that instantly inflates your ego and makes you feel so completely loved, admired, and appreciated...I get that same look from Charlie about 100 times a day, except she lets it linger and it's completely obvious that she intends for me to see it. Charlie will just gaze directly into my eyes for minutes at a time, almost daring me to look away first, and I can just feel how much she loves me. I swear I can almost hear her professing her unwavering love, admiration, and appreciation for me through her eyes, and it is seriously the best feeling in the world! It's pretty much all I'll ever need to keep on keeping on through the rough spots. I don't ever want to live without that feeling, it's one of my favorite parts of being her mother.

Well, On Tuesday at 3 am we headed to Children's Hospital because Charlie's new g-j tube was plugged. No matter what Matt and I tried, it wasn't budging and we couldn't get any food to her. At the hospital they used a special drug to unplug it and then kept Charlie there overnight to monitor her. Matt and I were lucky enough to both be able to stay in an empty isolation room that they brought two cots into for us...it was actually the best set up we've seen in all of our days spent at the hospital...and just feet away from sleeping Charlie. Everything got worked out and we headed home at 8:30 am that morning.
Despite that blip, Charlie has been really healthy lately, and is getting stronger and stronger everyday. She is now turning her head in both directions...this is new and IMPROVED! This isn't the usual course for SMA and as much as I'd like to know why she is progressing rather than regressing, as is the usual course of the disease, I don't really care as long as she's healthy...let's just keep calling it a beautiful miracle. In my heart I know Charlie will be with us for some time to come...I just feel it.

Charlie has been doing so well and I should be feeling content and relaxed, but instead I've been feeling a little rough emotionally. I've just been overwhelmed with my responsibilities as a mother and a caregiver of a high needs child and its been manifesting itself as major anxiety, panic, and nightmares. I've been worrying about a whole bunch of things I shouldn't be worrying about...yet I am. Fires, earthquakes, car accidents...I'm very clumsy, what if I trip while carrying Charlie from room to room and her head goes flying? You name it, I worry about it. There just isn't any room for error, and that scares the sh*t out of me!! I think I'm just struggling to find my confidence in my ability to always properly take care of Charlie, especially when Matt and I will be living separately in the near future and it'll be more of an individual effort on each of our parts to keep Charlie healthy and safe. Just feeling pretty freaked out I guess. I do realize though, that change is always scary, and it'll all figure itself out in time. Yup, trying to stay strong and positive here.

In just over 3 months we'll be celebrating
Charlie's 2nd birthday. Unreal.
Her nurse keeps telling me to start the planning
now, cause it's gonna be a BIG one.
And she's right, it will be!
Get ready to party hard Char!