Monday, April 26, 2010


(Charlie at about 8 of my favorite pictures of her)

I just finished taking Charlie for her daily stroll. I can smell summer in the air and it's getting me all excited! We were told by our respirologist that Charlie still has a few months before she'll need any machines, such as bipap (to help her breathe) and I hope that remains true, so that we can have one last somewhat 'normal' summer. Although, I think we'll always want one more summer, one more fall, one more winter...I don't think we'll ever feel completely ready to hand her over to the awaiting, open arms of SMA.

On my walk today a woman peeked in Charlie's stroller (she was wearing her pink sunglasses to protect her eyes because she can't turn her head out of the sun anymore) and said, "Wow, this is the age you start putting sunglasses on them, huh? That way they'll get used to them and they won't pull them off." I just nodded and said, "Yeah." And smiled, but felt like stopping her in her tracks by saying, "Oh no, if she was physically able to pull them off she would, but she's paralyzed and weak because she's got a rare terminal disease. Have a good day." Those thoughts go off in my head constantly. I also shared the elevator with a few people today and an old man looked at Charlie and said, "What a happy little guy, life is great so far." And I again wanted to say, "Um, not so much, SHE's dying!" And the other day I was walking up Granville street and there were a group of religious people being really aggressive and trying to hand me a pamphlet, I said, "No thanks." But what I really felt like saying was, "Why would god want to kill my baby? How great could he be? Apparently he doesn't like me very much." And again, I realize that no one intends to hurt my feelings, and these questions and comments are the usual banter that we all share with one another, strangers and acquaintances, but I guess I just feel particularly quarantined from the regular folk now. My family is not like most, so the usual everyday banter that most people indulge in, often isn't appropriate for us, and I can't always help feeling angry towards innocent people. I do realize that no one means any ill will towards us, but I'm just being honest about my thoughts here. I realize that there are many people dealing with many situations on a daily basis and I've said something unintentionally insensitive to them as well. That's the nature of strangers sometimes.

I'm supposed to be weaning Charlie from nursing right now, but like a lot of mother's, I'm finding it difficult. We don't give her bottles anymore because the flow is too fast and it's possible that she may choke and get the milk in her lungs. Nursing has a similar danger, which is why I'm trying to wean, but, besides Charlie's 4 teeth getting in the way, I just love doing it. Sometimes I'll be working on the computer and I will just look over at her in her chair watching Sesame Street, and I will get the intense desire to go and pick her up and nurse her. She just looks so beautiful and innocent when she's nursing...I stroke her hair and tuck it behind her ears while she stares up at me with her gorgeous big blue eyes that seem to be saying, "I love you mom." And I can't help but melt. I'm also afraid to start feeding her from her g-tube full time, it's not that the act of actually tube feeding her bothers me, it's just that it's not natural and like I've said before, I don't look forward to having to do it in public, it will make people feel uncomfortable, which will make me feel uncomfortable. But, I guess I'll just have to suck it up and get over it.

The other day I was talking to Matt and I said "OK" and all of a sudden Charlie said, "Mmm K" and Matt and I just looked at each other like, "Did you hear what i just heard?" And then we thought that we must have been hearing things. The next day it happened again! So, we realized that we are now the VERY proud parents of a beautiful 10 month old baby girl that says OK. Whenever we find ourselves focusing on all the things Charlie will never get to do, she shows us that there is also a lot of things that she IS going to do. She has amazing timing, and a way of turning our pessimism off and our optimism on.


  1. Charlie is so gorgeous, her eyes are so wise. You are so fortunate to share this time with her as hard as it is for you three.
    I love your blog and look forward to reading your entries. Just so you know, love and light are coming your way.

  2. That's so cute. She's a munchkin. May I suggest you purchase a personal voice enhancer for C. Our children's voices are very low and when you amplify their voices they hear themselves better and in turn it makes them want to use their voices more. We use the Voistra digital amplifier but there are less expensive models on the market.

  3. love love love how you described her saying mmm kay. eye welling moment! and that picture is the sweetest! the same God that made your sweetie gives us those moments too.
    "every good and perfect gift comes from above" james 1:17
    our view of perfect is different than God's. He sees the sweet soul beyond the fragile body.
    thanks for your honest comments on people's shooting the breeze conversation and how hurtful it can be. gives us all something to think about. wishing you a beautiful summer with the family and looking forward to reading all about it.

  4. I feel like a bit of an eavesdropper, not sure I should be reading the mental conversations of someone I don't know, but here I am, and I can feel the love you have for your little beauty. She is a lucky girl.

    Don't brush me off yet. Yes, I did say she was a lucky girl. She is lucky to have you as a mama and be able to spread joy by smiling, laughing and saying "mmm-kay". And I believe you must feel blessed to have your wonderful babe, though you know her time is short.

    My first-born daughter shared 2-1/2 wonderful months with me and her twin brother, before suddenly and unexpectedly leaving us: here one night; gone the next morning. You don't need to hear more sadness in the world, I know, but now (almost five years later) I constantly feel thankful for the time we did share together and would not trade those 2-1/2 months with her for any amount of time with another child. I cannot hug her anymore, but I can still love her.

    Other people don't know what to say. Their conversations all seem so trivial-- so what if your kid is still in diapers at age four? But I am glad they don't understand. The only way people do understand is when it happens to them, and I certainly don't want other people going through what I have been through. People don't know what to do to help either, so (if you have the energy) tell them. I sent all my friends blank writing paper and ordered them to write me supportive, loving letters. If you can figure out what might make things a little easier for you, tell people. Whatever silly words spill out of their mouth, their intentions are good.

    Your Charlie-Anne looks like a sweet little gem.

  5. hi cherie, matt and charlie-anne,

    sending you sweet wishes and dreams!

  6. Hi there.

    Have read some of your blog and and just really admire you guys and your precious little girl.

    Thought I'd let you know about a fantastic blog that I read called 'Hopeful Parents'. It's an online community of parents of children with special needs. It also includes parents of children with terminal conditions or who have lost children to terminal illness. You're wonderful, honest and humorous writing reminded me so much of what I enjoy so much over at that blog. I've shed many tears there, but also had plenty of belly laughs. The 'blogroll' on the side also includes all of the writers' personal blogs, and so it is a wonderful network of mommy and daddy bloggers who parent really special children. You may have already come across it, but thought I'd throw it out there.

    Sending Charlie Anne and all of your family tons of hugs and love.

  7. Oops. Here's the link :)

  8. Annika, thank you so much for writing this. I am one of Cherie's friend's and you couldn't be more right - I really don't know what it is like. I often struggle with what to say and wonder whether I should say anything at all. Do I have "regular" conversations complaining about my baby staying up too late, or childcare woes or do I keep that to myself because Cherie doesn't want to hear it...but then if I'm not 100% myself, then am I treating her differently? I don't know. All I do know is that I am so grateful that through this blog, kind people like yourself have found her and shared with her. Cher- you have given us all such a gift with your honest writing, and by letting us all learn with you.
    Again, thank you to all of you strangers that have kind words for Cherie. This world is filled with so many amazing people.

  9. Oh Cherie! This is such a touching post. The tears are flowing as I type this, so I will keep it short.

    Please don't think that God doesn't like you very much. I think He sent Charlie to you because you were the very best Mum for her (think about it, over 6 Billion people on earth and He chose you!) Wow! I don't mean to sound preachy or trite, but I can't help but see it that way when I read your posts. You are an awesome Mum & Matt is an awesome Dad. The love you have for Charlie is a living thing, I'm sure all who read this blog & know you personally will attest to that.

    Charlie is an awesome little girl!! She is a Love Light in the flesh & her light truly shines, shines, shines. How many hearts has she touched? How many smiles has she put on stranger's faces? How many times has she made your heart melt? Too many to count! Such a special little person! :)

    I'll say bye for now. Sending love, hugs, white light & good thoughts to all of you,

    Linda xoxoxoxo