Friday, March 12, 2010

Bittersweet

(Charlie, 8 1/2 months)


















Well, we're almost half way through our Hawaiian getaway and it's been phenomenal so far! We've done a little exploring, relaxed with Tequila sunrises by the pool, gone to the beach, went to Huggo's On The Rocks (twice), a little restaurant on the beach that has live music, we have had AMAZING sleeps, and Matt has become the barbeque master; last night he grilled up the most delicious Ahi tuna dinner...we need a barbeque back home, I have a feeling it would make my life a whole lot easier.

While this time away with Charlie has been so wonderful, at times it's also been heartbreaking. We've never spent this much family time together since Charlie was born almost 9 months ago. We have had a lot of time to really focus on what has brought us here in the first place...our Charlie and her limited time here. This really is our first and last family vacation. Since Charlie's SMA diagnosis two months ago, we hadn't really seen much more of a decline in her mobility, until lately when things seem to have sped up. Charlie is starting to look and act more like the pictures/videos I've seen of babies diagnosed with SMA. She has swollen hands and feet from limited mobility, her head seems big because her chest is weak so it's remained small, and her belly bulges from overcompensating for the breathing her chest can't do, she has lost almost all head control, where she once turned her head to follow me in a room, now she only follows me with her eyes, her little body is very limp and we have to be very careful picking her up and putting her down, making sure none of her limbs gets tangled underneath her, which is more difficult than you might think. Her breathing is laboured and her chest rattles when we pick her up and when she coughs (or tries to) it looks so difficult for her and her eyes instantly water and go red around the edges, leaving Matt and I frozen with terror until it passes. At night when we sleep (she sleeps with us), she wakes up every hour or two to be turned over...I can't help but think about how awful it must feel to need/want to turn over, but being unable to...and the heavier she gets, the worse it must feel.

Lately when we go out, I can recognize when people notice that there is something "wrong" with Charlie. I almost just want to tell people and get it over with, but at the same time, I don't want to make people feel uncomfortable or darken their day. When Charlie was 6 months old, people just thought we were lucky and that she was just a calm little girl...actually, after her SMA diagnosis, Matt and I would cringe when someone would say, "Oh, what a calm little girl you have." But, now that she is almost 9 months and her symptoms have become worse, people notice right away that something is not right...there is no sitting up, no grabbing, and no crawling, and if they see us pick her up, it's obvious. I'm ashamed to admit this but, I actually lied once when somebody asked me her age, I said 6 months when she was around 71/2...I wasn't ready to talk about it then, or have anybody feel sorry for Charlie and blessed for themselves.

Two days ago Matt and I went for a scenic drive to go and see a black sand beach, and when we were driving back, I saw a lonely looking area with a Veterans Cemetery sign in the front...it got me thinking way too much. I was sitting in the back seat with Charlie and just started looking at her and thinking bad thoughts about funerals and my future without her, and lost it and began sobbing. Matt offered to pull over, but I told him to keep driving and what had triggered me in the first place...we were pretty quiet the rest of the drive back home. It's sad, sometimes I look at Matt and he's staring into space and I know exactly what he's thinking, I don't even have to ask...this happens several times a day. And when it happened last night after a lovely dinner and a sing song with Charlie, I asked the question I already knew the answer to, "Matt, what are you thinking? About Charlie? Are you OK?" He nodded his head and we both cried. I worry a lot about myself and my feelings in all of this, often forgetting about Matt's, and when I really see how it affects him, it scares me for us and our future...how will we ever be the same again?

Charlie is a beautiful soul. When I'm not worrying about my future without her, I'm marveling at how wonderful she really is and why I love her so much. She gives me the most intense eye contact, like she's talking to me with her eyes saying, "Mom, I love you." or "Can you put my shows on." And Charlie can really appreciate the little things in life, more than than the child on the go...a breeze, a feather in her hand, music, bath time when she can make her legs wiggle, and she just loves a nice long walk to stare at the trees and clouds above going by. The three of us go out for dinner and she loves to sit back and look around...she really seems to enjoy seeing Matt and I happy and having a good time. I really wouldn't want her any other way except with us longer.


8 comments:

  1. Beautiful Cherie. xo

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  2. thanks for sharing this... it's hard not to want to cry with you and for you.. your big picture is most overwhelming.. if there was anyway we could stop this.. you would have an army fighting for you.. and don't ever feel like you can't share your world.. i hope you get to savor every last drop on that wee island.. and if you can .. try and save the tears for later

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  3. Thanks for reading friends. Means a lot to me. xo

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  4. Hi guys. All those things happening to Charlie with her breathing etc. will disappear as soon as you get her on ventilation. The poor girl is under ventilated and suffering from sleep apnia because of this and this is the cause of you having to turn her over so much. Our kids are stomach breathers and this is normal. Once you get her on the program she will stabilize and you will be on edge but you will have things in place to warn you if anything goes wrong and her health will definately improve. I see so much of Shira in Charlie and I was told the same things i'm telling you. There is hope and a lot more joy than suffering. Our kids can feel and don't have any pain. Today Shira had a play date with 2 close friends and starts kindergarten in September. I know how you feel. Just hang in there and if you can visit other families in your area so you can see what to expect. Enjoy your holiday and give the girl a hug from all of us here. Shira digs her sunglasses!!

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  5. I just wanted to add that I know how you feel and feel for you. This is the hardest thing a parent has to go through and no parent should have to deal with this! Our thoughts and prayers are with you guys. When I feel like you do I just snuggle up with Shira and absorb as much of her essence as I can. There is no healing from a situation like this we will carry it forever. I can see by some of your friends posts that you are admired and loved and that's what you need to live with something like this.

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  6. Thanks Brad. Yes, things are going to change when we get home. We have her g-tube surgery booked for March 25th and then I'm sure ventilation is just behind that.
    Give Shira a snuggle for us.
    xo

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  7. I would like to suggest you guys have bipap in place before her surgery in case they have trouble extubating to room air from her surgery. B.C. is notorious for saying our kids have to be trached instead of using NIV (non invasive ventilation). At least if you have your bipap and mask ready and she's used to it they can extubate after surgery directly to bipap. This is what we did! Just a thought.

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  8. Oh my dear ... our thoughts and hearts are with you guys. Enjoy your time in paradise with your own little angel on earth. See you soon.

    xo

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