Sunday, October 3, 2010

Human nature.

(Charlie, 15 months)

I'm home alone and I'm supposed to be taking a break, a time out of sorts, from all things Charlie...but how is that even possible? Its day 12 for Charlie at the hospital, and Matt is staying with her tonight, she's on the mend but her secretions are still thick and we find out if we're moving over to Canuck Place tomorrow or staying at the hospital a little longer.

We've been eating shitty, sleeping shitty, and super stressed out...we just want to be home again! We haven't really cuddled Charlie in 12 days, and that's 12 days more than we're used to...can't be good for her either. But, the good news is, Charlie's respirologist came to check on her yesterday and couldn't believe how much she was moving her arms and legs and said "type 1's don't move like this at her age, she's more of a type 1 1/2 and I think if we manage her colds quickly, she'll be around longer than we expected." Great news! And, yes, I've heard SMA parents say their kids were a type 1 1/4's or a 1 and 5/8th's, and I'm not an optimist by nature, BUT, this guy is as frank as they all of our meetings with him he has given us nothing but the grim truth and facts, he's a VERY serious man...Matt and I always leave his office completely deflated and ready to jump off a bridge, so I know he wouldn't sugar coat anything, and frankly, that makes me respect him and his opinions that much more. So, we're feeling a little hopeful again in that regard. We feel like we can dream again...but carefully.

We are the proud parents of the most beautiful little girl in the whole world, but as I've said to my family and friends before, I can't help but feel like I'm/we're in emotional and parental purgatory. We will never really be happy and satisfied with our lives as parents, because she's sick, and we don't really feel like real parents either...not parents of a child like almost everybody else we know is, like we also planned for and dreamed of too, but one they say will be here today and gone tomorrow. And because Charlie is our only child, there will soon come a time where Matt and I will have to give back our titles of 'mom and dad', I really can't imagine going backwards to the Charlie-less couple we were before her. It's frustrating because we all sort of, wether we admit it or not, have children not only when it's 'our time' but also, it seems, around the same time as all of our peers are starting families...we get to a certain age and the pressure is on and we desire to be included in and partake in the evolution of growing up, family, and the 'next step'. When we weigh our options we often think, "Is it really worth waiting five more years? All of my friends children will be in school and I'll have a newborn." And often, that helps in our decision process regarding starting a family, or waiting a little longer. It's human nature to connect with others that are on the same path as ourselves, and to be influenced by them as well.

Matt and I have more in common with the parents we've met in the last 9 months who have children with rare neuromuscular diseases and cancers, then with the people we've spent the past 20 years growing up with...that baffles me...that we're 'those people'. Still. Our future holds many hospital visits, many close calls, plenty of stress, big decisions, loneliness, and isolation from our family and friends, sprinkled with good times. Often we hear people say, "Wow, you two are so strong, you know, whenever I'm having a bad day, or complaining about my life, I think about you two, and how strong you are, and I realize how fortunate I really am." And, I know people only mean well with that statement, but I can't help but feel like mine and Matt's and Charlie's lives are being used as the barometer for a shitty, "Things could be worse, you could be Matt and Cherie" kinda thing. It's almost embarrassing. I feel I couldn't even fake like I had it all and was living the dream (as we often do) even if I wanted to. It's a really good thing I'm a 'wear my heart on my sleeve' kind of person!

I'm thinking too much time in the hospital, in an isolation room with no windows, is NOT a good thing. We're really needing home right about now...and maybe an attitude adjustment...or maybe I've just got a case of the Mondays.


  1. You guys are not a worst case scenario ... you are AMAZING. That's why people think about you and find inspiration from your strength ... not from your shitty deal. You inspire everyone around you, and Charlie is so special, she brings out the best in everyone. Your lives and your experiences are special. All three of you touch everyone you meet with your open hearts!

    Love you,

  2. I still think you are both amazingly strong & I'd bet the farm that if push came to shove & you had the choice of trading Charlie for a "normal" baby, you'd not consider it for a moment. Why? Because you're Charlies' parents, you love Charlie so much, she's a part of both of you, a unique person and a precious gift.

    I know several people who have lost children suddenly, without warning, who never had a chance to say goodbye or tell their child one last time that they loved him/her.

    They are a barometer for a sh*tty life, because their grief and guilt will never be over. They have so many regrets, so many issues, & they have no peace.

    Charlie knows what it is to be loved, & whatever happens, you will always have that & so will she. Not trying to diminish your situation or your pain, just wanted to say that you have the gift of time with Charlie & by that I mean you will never take one day for granted or leave a loving word unsaid, a hug or cuddle undone.

    Yes, it sucks big time what Charlie and you both are going through, not saying it doesn't, but you know to some degree the future, and won't waste one moment of your precious time with Charlie. In that, you are luckier than most, because you understand the value of this time you all have together.

    I'm so glad to hear what the Dr said about Charlie being a type 1.5. That's good news, because it gives more time and with that, hope. Never give up hope, it will keep you going through things you never thought you'd be able to get through.

    Well, I'm babbling again, so will say goodnight. You are all 3, always in my thoughts and in my prayers. Prayers being said for Charlie's cold to be over and for her to be home soon.


    Linda xoxoxoxox

  3. Cherie,
    Thank you for your blog and for all of your efforts in bringing awareness to SMA. Every word you write feels like someone has looked into my soul and started writing the things I think about every day. I almost hold my breath as I read because we are living such a similar life and in such an isolating experience, it is nice not to feel alone. I am so glad that I have met you Cherie. Gemma and Charlie are these super-human, amazing children, they have a different presence about them that I can't explain. They are beautiful gifts that we have been blessed to watch over and like Linda mentioned we cherish every moment with them and don't take anything for granted. We feel so blessed and so cursed at the same time, we love them more than anything and want to let down our guard and just be happy but we sheild ourselves from the fear of pain. I understand what you are going through and I want you to know that I am here to talk whenever you need someone to talk to. Amanda

  4. you will never give up your title as mom and dad. you will always be that. and being "those parents" may put you in the club you never wanted to be in, but the parents in that club are the most supportive friends you could ever want. tell charlie to kick that cold and get home. :)

  5. What Lori said sums up exactly how I feel, well put. I can't believe I missed a post either. Geez, I read this blog because I draw inspiration from your posts, and because I want to know everything about Charlie even if I can't get to see her as often as I'd like because of my own grubby little kid. I am very inspired by your life, and all of the choices that you have made since this diagnosis. And honestly, the only time I have compared my life to yours was last week when little D very narrowly missed getting killed by a car. I thought about how I didn't think I could be as strong as you in the face of such incredible challenges, not how crappy your life is. You inspire people to be better. Seriously. Your impact on those around you is incredible, you radiate an energy that is contagious, and I don't think you quite realize the impact that you have on people through this blog, through the paper, tv, adventure challenges... You are the incredible mother of a very beautiful special little girl, and I am so glad to hear that she is going to be here a while longer.

  6. I know I can really only speak for myself, but I think most people would agree. You are AMAZING parents to Charlie, you surround her with so much love and you cherish all the time you do have with her. We think you're strong because you are so open about your experiences, not because it reminds us that it could always be worse. It is shitty that Charlie is sick, but you handle it with more grace than some people handle every day life.

    You're fighting for Charlie and have not given up hope. There are some parents, who in a similar situation would give their child over to foster care. My cousin has a special needs child in her care, because the parents couldn't "do it" anymore and I think this happens more than we know.

    You are an inspiration and I admire your strength, honestly and your willingness to share your experience. The love you have for Charlie and each other shines through in everything that you write. Charlie's smile and her vibrant eyes are enough to melt my heart.

    We are keeping you in our thoughts and hoping that you're cuddling Charlie at home soon!

  7. ♥ that you have people close to you to draw on and your honesty as always and your beautiful beautiful pic of charlie and that daring to dream cautiously. take care.

  8. You will always be mom and dad...that doesn't stop when Charlie's life here does...forever you are and will be parents. Please hold on to that truth.

    This life you are living is strange and unpredictable, but it is what you have...sink in...sink in and let it take you. Already you can see many things that have come out of this, hold on to the goodness, hold on to what matters.

    You are so brave! I know you don't feel brave, you probably feel the exact opposite...but to the rest of the world they see something else. so when in doubt, ask someone..."hey, how do you think I am doing?" and get the real truth.

    love and light to you, your husband and your precious Charlie

  9. Cheri,
    We are right there with you! SMA has a huge dark side and it is so hard to talk to your closest friends and family because they will never truly understand what it is like to watch your child waste away and eventually die. No matter how hard you work and fight, SMA will still win the battle. While SMA doesn't get easier, the older Charlie gets and the more her spirit and personality comes out, it makes the fight much more enjoyable. I am not a big fan of medication, but anti-depressants have helped me a ton in the last few months. If you ever need another family to talk with, we are always available (865)377-9880.
    Sending lots of hugs and kisses to you and Charlie!

  10. Just want to add that when life gets tough for others who know you both and Charlie, either in person or through this Blog, I'm sure they will look to you guys for inspiration, wondering what would Matt & Cherie do or say in that situation.

    You are truly inspirational, your bravery & love for Charlie & each others is evident to see. That you are able to carry on & do what needs to be done is much more a barometer to a life well lived and a love well given.

    Sure at times you may feel discouraged but you always manage to keep you chins up, your heads high and shine on.

    I truly cannot think of anyone I admire more.

    Many hugs & Blessings.

    Linda xoxoxoxox