Friday, April 16, 2010

Life's too short.

(Charlie, 9 1/2 months, with Elmo)

I feel trapped...which is making me feel claustrophobic...which is making me feel extremely anxious. I hate knowing that no matter what we do, Charlie will still only get worse and worse until she dies. There is no hope and nothing to look forward to. Who even thought of SMA? It's such a cruel disease...a child/baby slowly becomes paralyzed until they eventually suffocate, the whole while being completely all there and aware. Just thinking about it I get the feeling that the walls are closing in on me.

We'll never be able to get annoyed with Charlie and say, "Go outside and play."
I took Charlie for a walk yesterday and ended up at David Lamb Park in Yaletown, school had just been let out so there were at least 60 children and their parents there. Charlie loves to watch other kids so I strolled her up to watch the kids on the swings, she did, with a big smile on her face...I just looked around bitter and resentful because to the naked eye, all the other kids were healthy, and I thought to myself, SO NOT FAIR! I left upset and called Matt, I don't like feeling jealous or envious of other people, and I honestly wouldn't wish an illness like this (or any) on any other child. It's a vicious cycle...I have those thoughts and feelings, then I feel guilty for them, then I get angry at myself for the thoughts and the guilt, then I forgive myself, then something triggers me, and the myriad of emotions begins again.

I have had a couple of emails with the women that I met at the hospital the other day...she told me that she has to change her daughters diapers with gloves on because her urine is so toxic and that she's sick from the chemo. Those are the types of situations that I find a little solace in...I'm at least thankful that Charlie doesn't hurt.

Matt and I took Charlie to her respirologist yesterday...he is a 'tell it like it is' kinda man...he doesn't sugar coat anything, which is good, but sobering. He told us Charlie would need Bi-pap (a machine that helps her breath) in a few months and discussed her average life span (2 years old...maybe 3) explained suctioning her secretions, how we'd probably have a few long term hospital stays in the future, etc. Just completely deflating information. Two days ago Matt and I were watching Dave Letterman and Matt was feeding Charlie, she started choking and gasping, I grabbed her and started hitting her on the back and Matt snatched his phone from his pocket and was about to call 911 when it subsided. We both looked at each other with terror in our faces, collapsed back into the couch and stared into space. We didn't even have to say anything to one another, we were both thinking "Holy F*#k, welcome to my life! How is this my/our life? Saving our daughter on a daily basis?" Way too much responsibility!

When we first found out About Charlie, I wanted to get pregnant right away. I couldn't imagine losing her and not being a mother anymore. I felt like I was part of a whole new world with play dates, new friends I'd never have connected with childless, family vacations, etc. But lately, I'm thinking no more babies for me. Besides the stress of all the testing and worry and fear while I'm pregnant (unless i get invitro) I just don't feel like worrying or caring this much about another human being again. I think. Like I've said before, I'm not good with stress, and after Charlie, I think my stress meter will have blown up. That's just this week though, who knows what next week brings.

I have the house to myself right now...Matt took Charlie and his Dad and Jenny to go and see his Nana, we've been on the outs with her for about a month, we just felt like Nana and her son Matt's uncle, were being really insensitive about our whole situation and that they were putting a lot of pressure on Matt to 'be a better grandson' and so the relationship began to dissolve from there. BUT, since all of this began with Charlie we have realized how short life really is, so he's up at Nana's hoping to get things good again, and i wish him luck. In the meantime, I'm going to use this time wisely and take a nap, ALL BY MYSELF! ;)


  1. Maybe one of Charlie's amazing gifts to you will be to blow up your stress meter, once and for all!

  2. Cher you have so much love to give. Now and always that love is for Charlie but one day another special little life will be fortunate enough to be on the recieving end :)

  3. Cherie,
    I grew up the youngest of four girls. There should have been five of us. My mother's second daughter died of a congenital heart defect at three and a half months of age. Growing up, I always knew this, even though she was rarely talked about. There is a look in her eyes when she talks about her that is indescribable, and I've seen it my whole life. She heeded doctor's advice to have more children quickly. I will never know if it has helped her, I don't even know if she would be able to say for sure herself, but I do hope that the love I give her
    helps to ease that ache.
    You are a hero. Every second of every day you choose to allow more and more love to flow through your heart to Charlie and back again. Love is courage, whether you keep putting a positive spin on things or spend days crying in bed; those are just different faces of love.
    Thank-you for sharing you and Charlie's life in this blog. She did get into my heart from the first photo I saw of her. Like Susan, I showed my boyfriend and sisters the pictures of "the sweetest baby ever" that Cindy posted in the Fall. I think the world is a better place already, having been given the gift of her smile.

  4. That's beautiful Judy!
    Cherie-I love Charlie's little Triceretops lips I'm this picture. She is so special. I don't have much time right now but when I do I love going through pictures of her on here and following her little adventures. Keep blogging Cher. You are so talented and so strong.

  5. Hi Cher, I've been lurking here since you started, roughly. We met at Cohen's birthday party, by the hot tub. You had just given birth to your little angel the day before, I think?
    You inspire me to make every day fantastic and appreciate all the little things in life. Reading your blog gives me so much perspective and makes me realize just how precious every moment is and how so many people take it for granted.
    Charlie is teaching so many of us to really appreciate our lives and to make the most of it. Keep writing, your strength and positivity amid all of this is inspiring and beautiful!

  6. Thanks ladies! I'm honored you're all reading and appreciate your thoughts and kind words!! Much love!!

  7. Your feelings are normal and natural. Don't be ashamed of them and don't try to not feel them because that is very unhealthy. You NEED to feel all these things.

    A friend of mine had a little boy named Cole who was born with SMA & sadly he's gone now. However, 3 years ago she had a beautiful little girl who does not have SMA. Her name is Peyton.

    Peyton's parents had all the feelings and anxieties you are having. When Peyton's mum was expecting her, she was scared through the entire pregnancy. In the end all was well & in no way diminished their love for Cole or their memories of him.

    Each child is a unique individual & can never be replaced. But love can be regenerated. Love is the only thing that the more that is given the more that is received.

    Whatever the future holds for you and no matter what happens, Charlie knows she is loved unconditionally & completely and it's sad to think that there are many children in this world who do not have that. Charlie is so lucky to have you both as parents!

    I know that God placed her in your care because He knows there is nobody else on earth who would be better parents for her.

    Take care and God Bless,


    PS I think Charlie looks so much like your Mum.