Wednesday, September 29, 2010

Get better Char!

(Charlie, 15 months, getting music therapy)

It's been a week since we brought Charlie to the hospital, and we're still here. Initially we thought we'd only be here for a couple of days, but I guess Matt and I have been a little naive in thinking that Charlie's 'tough' and isn't your average 'weak' SMA type 1 baby...but, she is. Matt and I spent 11 months preparing for and avoiding this day, all the while not expecting it to look quite like this. It's scary seeing our little baby laying in a hospital bed with cords attached to her little body and a beeping machine that is either trying to console us with its mellow beeping, or scare the crap out of us with its frantic beeping, attached to the other end.

Charlie is doing OK but the doctors just want to be sure that she's doing really OK before we either head home or over to Canuck Place to help us transition back home. Her secretions (phlegm) have gotten thicker and if we don't take care of it, Charlie is at risk for a chest/lung infection, as well as pneumonia. She has been getting chest physio 3-5 times a day right now so they can loosen up the goo and deep suction as much of it out as possible to avoid complications. It could still take months to recover after and if she gets a cold while still recovering, it can look a lot worse than this.

I've been staying over most nights and Matt does days...only now are we beginning to lose our minds a bit. For some reason though, time goes by really fast here. That's not how it usually works...usually when I'm not enjoying myself, time drags, but here, it goes by so fast! I think it's because we're on a pretty tight schedule with feeds, physio, playtime, naps and swapping off, that time just slips away. But, we're beginning to feel the effects of this stressful situation now. At first, when we thought it was just precautionary bringing char in, we didn't feel too stressed out, but now, several end of life/palliative care talks, and more details and understanding of the disease later, as well as seeing how weak and helpless Char really gets when she's sick, we're feeling it. Charlie is still ALWAYS smiling, but she's sleeping more, and not recovering very quickly from what is considered a 'weak' cold to the average person...and knowing and watching this breaks my heart. And, makes me love her even more. I really, really, really, really, really, can't imagine ever having to say goodbye to her.

A couple days after we got here, a counsellor from Canuck Place came to Charlie's hospital room to talk to Matt and I. You'd have thought that we had never ever met another human being before...especially one who'd asked us about ourselves and how we were doing with this whole situation. We were both finding it incredibly difficult to give the other a turn to talk...just sitting in our seats, wiggling around restlessly, trying hard to contain ourselves and keep our mouths shut until it was our turn to was obvious we were both overflowing with emotion and definitely needing to do that more often. I think she just meant to drop by, but a half hour in, she was sitting on the floor nodding back and forth between Matt and I, barely able to get a word in herself. An hour and a half later she was on her way out...but, I think she could have stayed 6 hrs, and we would not have run out of things to talk about. I asked her about grief...I'm obsessed with it...I NEED to know how I should plan to feel...knowing and preparing has always been half the battle for me. I asked her how past 'clients' have dealt with thing she said that really resonated with me...she said that she's heard a lot of grieving people say, "I want to be alone, but I don't want to be alone." I get that. So much. That's me in a nutshell. And, I know I'm not fully there yet, meaning our situation will get much worse, but I'm like that now. She said one woman told her she wanted people there, but she didn't want to talk about anything, and that she just preferred to lay in bed and hear other people out and about the house doing their thing, but leaving her alone. I totally get that. I often think, "Oh god, don't ask me, I don't want to talk about it." While at the same time wondering, "Why aren't we talking about it?!" I feel sorry for my support system sometimes, I really do. But, I'd be there/go away, talk about it/not talk about it with them if they ever needed me, no problem.

Despite mine and Matt's lack of patience and understanding with one another sometimes, we've been a pretty good team this past week. I know both of us are at least grateful for that right now, if nothing else. It's good to know someone understands you and has your back in times like these. So thanks Matt, keep up the good work!

Charlie is probably up from her 7 pm nap, so I'm off to entertain and cuddle her now.


  1. Hey Cher... you guys are the strongest people I have known to date...
    Regards and love from Prague...


  2. You are so open and honest and that is going to take you far. Give that baby girl many smooches.

  3. You are two of the bravest people I can think of & two of the strongest.

    As far as how you should "plan to feel", you can't plan how you will feel. You will feel how you feel and there are no right or wrong feelings to have in a situation like this. Don't stress about it and don't worry about it. Just enjoy and value the time you have NOW. The reality is, is that this is the only time you have. The future isn't here and yesterday is gone. Embrace today.

    Big Hugs to you all and keeping Charlie in my prayers for healing of her cold.

  4. I think of you and Charlie often. You have taught me so much. Sending lots of hugs from Vancouver Island.
    I have attached an article that I just read on I hope it helps a little.

  5. My warmest and deepest thoughts are with the 3 of you.......I am keeping Charlie in my heart and praying that she will pull through. xo

  6. I can't begin to tell you how reading this has opened my eyes to so much. I pray for you and Matt and precious Charlie so often, what a gift that you have shared with us as it costs you so much more than I can understand. I pray for strength and rest for you and Matt that can only come from God and for healing for Charlie. May you all continue to find joy in the priceless moments you share with her right now.
    A while back I read your post about everything having a reason. God has allowed me to learn from Charlie's quiet peace and joy. She is a precious treasure. Thank you.

  7. Wondering how Charlie is doing today.

  8. I think of you three often as well. I am sending you all virtual hugs and strength.

    Much love