Wednesday, October 27, 2010

Happy belated 16 month birthday Charlie!

(Charlie @ almost 16 months)

This is the first time I've left Charlie's birthday post this late. I've just been feeling so stressed out and self absorbed much so that I couldn't even muster the energy, nor did I have the mental capacity to sort through and rehash my emotions. I still don't really. So, I won't yet.

All I can really say is that when Charlie was in the hospital this last time, and after a routine follow up with her neurologist, we were told by both her neurologist and her respirologist that they believe she may be around a little longer than they initially thought she would be. GREAT news, but it really got Matt and I thinking about a lot of things. Like what was really important in life and what wasn't, what was worth putting our blood, sweat and tears into, and what wasn't worth our energy at all. For the past 10 months we have been living our lives waiting for Charlie to pass away, and then we thought, 'after Charlie' we'd begin our lives again...start over. But now, after Charlie's recent, more positive prognosis, whether that means 3 months, 2 years, or 10 years, we've began to think more along the lines of, "This IS it, this IS our daughter, this IS our life we're living, right NOW, so let's start living it the way we want to live it...let's stop planning for something horrible that hasn't happened yet because we'll never be prepared and we'll only waste the precious time we do have, and instead look at this whole situation as a gift and a warning, to start living life NOW, who knows what tomorrow brings. Life is short, lets enjoy it while we can." And, In realizing this, we discovered that our lives are in need of some major renovations for both of us to be truly happy, and for Charlie to be truly happy too. So, we're still figuring out what that will look like right now.

Not a day goes by that I'm not thankful for Charlie. Everyday I unwrap another layer of my little present and I get a better glimpse into what an amazing gift she really is. I was talking to my friend Amanda who has a little girl, Gemma, who has an undiagnosed neuromuscular condition similar to Charlie's and we both felt that as painful as it can be to have a child like this (meaning, it's hard to be told your baby won't be here for long) we also feel like we're the 'chosen ones' like, we've been entrusted with little earth angels. I told Amanda that I often feel Charlie is like my little Buddha, so peaceful and wise beyond her/anyones years..she's better than all of us, so pure and enlightened. Amanda agreed and we discussed how we often looked to our 'angels' to give us the answers and show us the way, and to help us make decisions in our daily lives. It's really pretty amazing. And I wonder why me? Why Matt? Sometimes I'm not sure if I deserve her, but she's mine all mine, and I'll keep her regardless of my prerequisites.
I love you Charlie. I'm glad you chose us. Happy 16 month birthday! xoxo


  1. love this post
    love the hope and joy that comes with it

    love and light to you all!

  2. You word things so well Cherie, what a beautiful post, thank you for including me. I really enjoy reading your blogs because you understand on such another level what this life with our children is all about. I think of you often and hope all is going well with Charlie. Much love, Amanda & Gemma

  3. You are so right!! Live in the NOW is something we all should do... But it is hard! I just wanted to say that we are thinking of you and I still feel blessed to have met you in the park that day even though it probably won't be before germ season is over that I get to see you guys again! Love always! XOX

  4. Wow! Look at that gorgeous hair! Oh my!

    You wrote about a lesson so many of us need to take. Great blog post and I love your candidness of your thoughts and emotions.

  5. love the earth angel phrase :)
    good luck planning the life renovations

  6. OMG, she looks so much like you! So pretty. I wish you guys all the happiness possible. Also, I think you are an amazing writer.

  7. She looks so beautiful and older! You are right that there is a wisdom and light in her that many don't and may never have regardless of age. Thank you for sharing her and your heart with us Cherie, you are a beautiful blessing.

  8. What a truly beautiful and inspiring post! I love the term "earth angel" & I believe that Charlie is an old soul in a young body with many lessons to teach and lots of love to give.

    Why you and Matt? Because you need Charlie and she needs you and you love each other.

    I'm so glad to hear the positive prognosis but not surprised. I've always had the gut feeling Charlie would be here longer than they said she would. She has much to teach and give before she's ready to join the heavenly angels.

    Bless you all,

    Linda xoxoxoxox

  9. Happy Belated 16 month B-day Charlie!


  10. best post yet. amazing. all three of you. happy almost 17th month birthday charlie! reminding us all each day is so special and that making families is such an amazing gift.