Wednesday, May 26, 2010

Sleeping Beauty.

(Charlie, 11 months old, taking a nap with mommy after a bath)

This past Monday Matt and I went and spent the night at my parents place. They watched Charlie while we hiked Teapot hill and when we got back we showered and we all went for dinner. When we got back to my parents place we'd had a few drinks when we decided that it'd be a good idea to scroll through all of our old pictures of Charlie from newborn to now...what a mistake that was. Matt and I haven't really been the same since. When you're living with this on a daily basis, the changes can sneak past you...kind of like when someone you see on a regular basis loses 20 pounds over six months and you notice the difference in them but don't really notice the dramatic change until you see an old picture of them. We realized that only 5 months ago Charlie was sitting upright almost unsupported, when now it is almost impossible to find a comfortable upright position for her nearly completely limp body. She IS using her forearms and hands MORE than ever though, so that is a positive. It was just a rude awakening, like someone threw a glass of ice cold water in our faces when we weren't expecting it.

I've still been breastfeeding Charlie a couple of times a day, but I think that's coming to a halt as well. Today on two occasions I noticed milk on the bed and coming out of her nose a little, which suggests to me that she's losing her ability to swallow and it's pooling up in her mouth, and when it doesn't have anywhere to go, exiting out her nose. I still feel fortunate though that I was able to breastfeed her for this long...'normal' children are usually weaned right about now anyway. But I just don't like thinking about what this signal implies. She's getting worse. And, yes, we know that getting sicker/worse is the only way Charlie is going to go, but I think that although Matt and I have never really discussed it, we have both had our head in the clouds and have been secretly thinking Charlie was going to be "the one". The one that either beats SMA or the one that coasts along smoothly, beating all the odds, cause she's a 'little fighter'. I've always disliked that term (little fighter) when someone 'beats' breast cancer and people say, "Oh, she was a fighter, she wasn't gonna let cancer take her down." To me that suggests that anyone that 'lost' their battle with cancer (or whatever disease/ailment/accident they had or were involved in) was weak and ready to just sounds so negative and disrespectful to me...but that's just my opinion. Maybe I just feel like I need to defend Charlie, I think she is the toughest baby I have ever met and I'll always feel that way about her, even when she 'loses' her fight with SMA.

I've realized a couple of things about myself is that I'm commitment phobic (i know, I'm married, so how does that even work?) and the other being that no matter how many people we have in our lives, and no matter how negative this sounds, we are all alone, now and in the end. This situation with Charlie has shown me that even though I've had long term relationships and even though I'm married now, I've always had one foot out the door and prepared myself for the worst, which has usually been a self fulfilling prophecy, because I was afraid of giving into something and being hurt or disappointed or being trapped, this goes for my education and goal setting as well...I could never commit to anything. How does this even have anything to do with Charlie? Well, this situation in itself is a huge commitment (not to mention just having a baby in the first place). Matt and I are bound to her, and bound to each other. She needs us, both of us. For the first time in my life, I don't have the time or energy to be questioning my place in this world or mine and Matt's marriage or my commitment as a mother. I'm not even overly anxious anxiety was caused by being overly reflective and constantly worrying about myself , and instead of focusing on me and my needs, I'm all about Charlie and what she needs. Charlie is busy saving me from my neurotic self.

As for being all matter how many people I'm surrounded with, I'm still ultimately alone. By that I just mean that nobody can feel what I feel. And I won't feel what Matt feels. And we are both dealing with this in our own way, and honestly I feel like we're usually too exhausted with our thoughts to even discuss them out loud with each other. That and we don't always know how to express ourselves...and I also think we're busy protecting one another, and don't want to lay our worries and fears on the other because we know their plate is already overflowing. And as for my friends, I love them and they are all so good to me, but it's hard to share a breaking heart...and it must be hard for them to understand my breaking heart and to know what to do with it. Nobody can make this feel better. Not my husband, not my mommy, and not my friends...I guess that is what I mean about being alone.

Charlie's big 1st birthday bash is only a month away. We're so excited about it. I think being with our friends and family to celebrate such an important milestone in Charlie's life will help lift our spirits and give us the fuel we need to stay positive for Charlie. Can't wait!


  1. One day we all walk alone, sooner or later... Everybody is alone they just pretend they are not. And no, broken heart can't be shared... Could not agree more... Take care...

  2. Oh Cherie, don't let yourself get beat down by your grief. I know that's an impossible thought right now but really and truly you are not alone.
    Yes, each persons experience with loss is completely individual and even though both you and Matt are traveling the same impossibly hard road with Charlie you will each have your own ways of dealing with it and effects from it. That being said you will both share the same pain and because of that, be connected forever in a way that no one else in the world will.
    And don't forget the joy... when you need sanctuary remember the good things you all did and shared and although you each have your individual takes on that positive memory your shared experience of it bonds you.
    It may sound cheesy but people who have experienced loss, true heartbreaking loss are like trees, individual in our struggle to continue to grow and survive in the cruel environment that we have been set into - fighting against the strong wind of grief that blows at us until we realize that there is strength when we surround ourselves with other trees fighting the same wind. And in this forest of individuals together we are not alone. Much love.

  3. Cherie,
    I've been reading your blog for awhile now and you, Matt & Charlie have really touched me.
    I smile every time I see a picture of your beautiful Charlie. She truly is precious. I have to admit it's hard to read your entries but it's probably harder for you to even write them. I cannot relate to your feelings but I think you and Matt are just so courageous and wonderfully, loving parents. You were chosen to be Charlie's parents for a reason and she was given to you for a reason. I am a mother as well and as you know it's not an easy job. Sometimes it's wonderful and sometimes it's heartbreaking. That's what children do.....send us on the emotional rollercoasters that never seem to end! I hope that you all have an amazing, fun-filled day on Charlie's first birthday that's overflowing with much love and laughter!! Please post lots of pictures of your gorgeous baby girl!! Best wishes to you all.

  4. From one heartbroken SMA mom to another: A very smart woman once told me that feelings are neither good nor bad, right nor wrong. They simply are what they are. Although this may not be a comfort to you now, please know that I am praying for you, Matt and sweet Charlie Anne and doing everything in my power to fight this devastating condition.

  5. Cher- before Charlie came into our life I always considered you one of the most profound women I have ever met. You have taught me so much and how you have grown as a mother and person with Charlie, continues to amaze me with your strength and wisdom. I wish I could reach inside, grab your heart and give it a big hug. I love you, Char and Matt very much. Sending love always xoxo

  6. i continue to love your honesty and the beautiful pics of everyday with charlie. God bless!

  7. cherie i wish i had the words to share with you that you need to hear. you may be alone in your head with your thoughts.. we all are.. but look behind you.. we are all here for you hoping, wishing, praying that each day your time with charlie will be remembered and treasured because beyond her disease her smile is teaching all of us what's really important in life.

  8. Cherie,Charlie has given you the gift of being able to look beyond yourself & your wants, needs & desires. She has given you the ability to love someone other than yourself, fully & unconditionally. I agree with the person who said you and Matt are Charlie's parent's for a reason & she is your daughter for a reason. I'm sure that these reasons, other than the ones I mentioned above, will become apparent as time goes by.

    I have a handicapped son & know how alone you feel sometimes, other people saying they are there for you is great, but the times do come when they've gone home, hung up the phone etc. & there you are.....Alone, alone with your thoughts and feelings, your sadness & your grief. As much as we all would love to be able to take this pain & grief from you, we can't. There are just some things in this life that have to be borne, hopefully with dignity & grace, certainly with anger, tears & grief.

    Although these are times of great sadness for you, they are also times of great joy! How can anyone not look at Charlie & not feel HER joy & happiness in life? She is such a precious, precious gift, a gift to be treasured & loved.

    Thanks for keeping us all updated on Charlie. You have a talent for writing & you are stronger than you think.

    I hope you keep this blog & someday turn it into a book. Your courage, strength, honestly and love for Charlie is an inspiration & hopefully will be shared in a much wider scope than your Blog. It would help so many people.

    Hugs to you both & a special hug for Charlie,


  9. I am in awe of your amazing words, thoughts, and advice. Everyones kindness towards me and my family is totally overwhelming. It never goes unappreciated! xo