Monday, March 29, 2010

Debby Downer

(Charlie and mommy, 8 months, Photo by Cindy Penner)

I've been super moody and emotional regarding Charlie, just finding it hard to look at the bright side...there just hasn't seemed to be a bright side this past week. Ever since all of the medical mishaps I just feel like Matt and I are walking around narrowly escaping land mines. Not a good feeling. I am constantly feeling overwhelmed with information while at the same time constantly feeling under informed. There just seems to be so much conflicting information out there and I'm beginning to feel like a burden on the medical system...are they just trying to make Charlie comfortable while she dies or are they trying to help her LIVE comfortably...I can't tell yet, and I think I'm beginning to get a little paranoid...or am I? I do want to say though that we are working with about 12 specialists right now and I really don't believe any one of them tries to intentionally make us feel this way, it's just that I don't think they get the chance to come together too often to combine all of their information to help them make the best decisions regarding Charlie's care. BUT, they all do what they do really well, and we are fortunate to have them on our team.

We have so many great friends and family members that have been supporting us through all of this...even complete strangers! Wow! It feels really amazing to know that you/they are rooting for us and keeping us in their thoughts. And of course there always has to be a few insensitive people out there, just to keep you grounded. We've been told, "Don't worry, you'll have more kids." And yes, hopefully that's true, but not quiiiiite the thing to say...she's not a gerbil. When I told someone that Matt and I had a 1/4 chance of conceiving another baby with SMA, they told me "You need a new husband." Neat. And when Matt was trying to explain to his uncle in an argument that we were really hurting about this situation, exclaiming "My daughter is DYING!" His uncle replied with, "Oh Matthew, you're going to Hawaii, it can't be that bad, she's not dying for a year or two!" Suggesting we get over ourselves and to stop being so dramatic. Yup, that one's my personal favorite. I will NEVER get over that one. I do realize though that people don't always know what to say in these situations, and most people mean no ill will, it just comes out wrong. But please, I'd prefer you kept talking to us rather than avoiding us because you don't want to say the wrong thing!
Luckily, most people are beautiful. Actually, since we became aware of Charlie's situation, I've never been more in awe of people. I have learned that it is generally human nature to want to take care of each other. This is a situation which almost everyone can picture themselves in, and I have seen it break many hearts, which in turn fills mine up with gratitude and love. I'm not saying I want people to hurt like we do, I just really appreciate the empathy.

Charlie's breathing has gotten raspy this week which either means she's getting a cold (right before surgery) or she's becoming unable to handle her secretions properly...either way, it's bad news. When Matt and I see a new change in Charlie such as this, it reignites the fear of the future in us...we seem to go up and down in between the changes in Charlie. Right when we get used to something (no head control) we get a new ailment (difficulty breathing) SMA really keeps us on our toes. We have an appointment this week to get Charlie fitted for some foot splints, her feet are starting to curl closed. We were also told to make sure we exercise her legs because they are stiffening up in the 'frog' position, so we've been working on that as well.

I'm really anxious about both a long AND a short future with Charlie. If she's here for a longer time, my new career is nurse Cherie. I will be suctioning her, feeding her through a g-tube, exercising her, performing CPR, medicating her, etc. And if she's only here a short time, I will spend my life missing her and forever feeling like a huge piece of me is missing. Obviously I am willing to do whatever it takes to to keep her with me/us as long as possible, I'm more worried about whether or not I can fulfill all of my duties as nurse Cherie. My friend Christie and I have some pretty good chats about life, marriage, babies, babies, babies, and careers...we were talking the other day and she asked me what my future plans were (because I'd just finished school for social work before getting pregnant) and I thought about it a second and said, "This is my job." and for a second (a fleeting second) I felt a little ripped off again. I don't get a choice in career anymore. This is it. Until it isn't it. And then my career will be long does mourning last? Do you work while you mourn? I don't know the answers to these question, but I think about these things all the time. When you decide to get pregnant your future flashes before your eyes, babies, toddlers, kids, teens, least that's what I, I'm still getting used to things not turning out the way I/we thought they'd be.

My parents are on their way here right now. That's been a positive in this situation. We've gotten a lot closer since Charlie's diagnosis. My mom hasn't always been the best with expressing herself to me and I've always felt like she's never really acknowledged my success' in life, but lately, she tells me she loves me all of the time. She texts it to me and Matt almost every morning. She's also started telling me how proud of me she is and that I'm an awesome mother, and as much as the old rebellious teenager in me would like to think I don't care what my mom thinks, I totally appreciate the recognition and praise, it means the world to me, and it couldn't have come at a better time.


  1. beautifully put. i can't believe the things people say. they are obviously missing the boat in terms of life's big picture. all the best to your little family as you move forward uncertainly, enjoying your sweet one

  2. We follow the NIV Protocol of Dr. John Bach. Following this program has insured Shira has outlived all the grim statistics but Dr.'s here in B.C. move very slowlly because most have no experience with SMA Type 1 as far as day to day care goes and most kids pass away very young because of this. I had to reach out to the doctors in the u.s. and implement the protocol ourselves. We aren't doing our own thing we are following the protocol that many hundreds if not thousands of parents are follwoing and most of these parents have children like Shira and older. You have to find it in yourself and believe you can help, you can research what to do, and that you can do it. Don't wait for doctors here because they are slow and conventional. SMA Type 1 is severe and you have to do something or as doctor Bach puts it, "Non intervention in fatal illness is a self fulfilling prosphecy!" Again you are more than welcome to visit us and see what we do and I can also introduce you to another family with an almost 4 year old girl also in Victoria following the NIV Protocol. Just let me know. I understand how you are feeling, I really do, but action is needed to keep Charlie healthy if that's the way you want to go. In B.C. Dr.'s are mainly focused on end of life care. I like this defiinition of palliative much better below, "Palliative care works with - not instead of - other treatments. It can start as soon as the family knows the child is ill. Palliative care does not mean "giving up." Good palliative care can help all seriously ill or injured children, not only those who are dying." -
    When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families

  3. Cherie & Matt,

    It never fails to amaze me how insensitive some people can be. However, for every person like that, there are ten who are not. Have faith in people and in the basic goodness of human nature. There are so many people who care about Charlie, you & Matt. I'm sure you know this in your head & I hope you are knowing it in your heart. If not, that will come in time. Please don't let the insensitivity of the few make you down hearted.

    I understand your feelings so well & it's perfectly normal for you to have all these feelings. Go right ahead and feel whatever feelings you have. Your feelings are not debatable.

    Just remember that sometimes feelings are just that....feelings. After you've cried and ranted & cried some more, you will be stronger and ready to do whatever you have to in order to be the best Mum Charlie could ever have.

    You are blessed to have Charlie as your daughter, but Charlie is also blessed to have you and Matt for parents, of that I have no doubt.

    Sending many hugs to you all & prayers always.

    Linda (Carol's sister)

  4. Sheryl Davis-KahnApril 15, 2010 at 6:55 PM

    HI Cherie, Matt and Charlie. I think of you all often, haven't seen you lately, but know that you are otherwise consumed with more pressing, life-preserving activities. Cherie, your blog is a truly beautiful testament to the love you have for Charlie (and Matt.) You have the voice of a woman who has changed and "grown" through a life-altering experience and the wisdom of a sage who has endured tremendous pain and suffering (is enduring) yet has the courage and drive to go on. From the moment I met Charlie, well before her diagnosis, she radiated
    the gentle spirit and sweetness of an angel-perhaps she truly is one! Cherie, you have found an outlet (your blog) that is both therapeutically healing as well as an enduring transcript of how much love and light Charlie has brought into your hearts and your home. Always thinking of you, Sheryl Davis-K.

  5. We miss you Sheryl...hope to see you again soon. xo