In 2009 at 6 months old, Charlie was diagnosed with the terminal genetic disease SMA type 1. This is our story.
Cherie,You can check out www.liasophia.ca/christine and see if you would like to be part of the worlds largest direct selling company. It pays 30% commission and is $165 for a starter kit that should get you through your first 5 shows. Christine
love and light to you and yours
sending love to your family.
Delurking to say that I am thinking about you all. All my best wishes to you three.
Dearest Cherie, My name is Cassie Graves and I recently read an email you sent to me regarding my story after my baby boy, at almost 17 months old, passed away. I have sooo much I would love to share with you. It is a hard transition but when being strong is your only option it is something you learn how to do and do well. I am happy to say that it does get easier with time. The first year is by far the hardest. Every holiday, birthday, memory of your child stays with you and bothers you for a while. You learn how to "go on" not necessarily "move on", it's too blunt and meanly put to "move on" but you learn how to "go on" with time. What I have learned from this all and what I have discovered myself is that you kind-of in a sense have to discover a new kind of "normal" for yourself. I think I am still in this transition and it has been two years. My therapist told me at one point that it would be healthy for us to have our next child. He said it would be something to help us go back to somewhat of a normal life again. Kolby was my only baby at the time he died so I went from having a child and being a mom to not having a child and you know. It was hard and in a sense I think if I'd had another baby/child in the picture it "might?" have been a bit easier to cope? I don't really know that though either. The pain and the memories will never go away or fade. It will always be a sore spot. But it does get easier with time. Just remember that. BUT the first year, as time goes by, it got harder for me. It's weird but it's true. Anyway, I hope that helps in any sort of way. I'm so sorry to hear about your beautiful daughter. My heart truly breaks for you. I wish there was something I could say that could make you feel better about all of this but I know there is nothing I can say that will make anything seem better. Today my baby boy Kyler turns 17 months old. Kolby was 5 days shy of being 17 months old when he passed away. This is a hard time. I know, this too shall pass. It doesn't make it any easier though.Let me know if there is anything I can do. I am always here as a friend if you have any questions or just need to vent or cry or scream or feel like being sad, I have truly been there and no one else understands unless they, too, have lost a child. Always, Cassie
You and your family continue to be in my thoughts Cherie.
love knowing that people like cassie can send u beautiful letters like that when the rest of us have no idea what to say.hugs and ♥ to your family. adorable polka dot pic of charlie :)
Charlie-Anne, Cherie, Matt...I just recently became aware of your blog and through your writing have been reliving some of my own experiences with SMA. My heart breaks for your family and what this terrible disease is doing to all of you. I respect that your experiences are unique and that it is a terribly difficult time to reach out, but I want you to know that if you would like to connect with a Vancouver family who has lost a child to SMA, please visit the FSMAC website for our contact info (in the Newsletters -> Contact Families in your Area section).
I'm so sorry to hear things are more difficult now. So glad to know though that Charlie is safe at home. Keep fighting to get the things you all need to make life easier - sooner, not after the fact. That must be so frustrating. The way you are trying to do things make sense - why wait to source equipment when you know you need it soon anyway?!?! Keeping you in my thoughts. Xoxo Judie
Awwww Cherie.:(You are going through so much, I feel so awful for you and wish there was something I could do or say to put a smile on all your faces, if only for a moment.Just know that I`m always keeping you in prayer & thought, wish I could do more.Hugs, Hugs, Hugs,Linda xoxoxoxoxox
Cheri, I've been following your blog since this summer after one of your friend's mother posted the link on a message board. I sat for 6 hours reading your blog,I rejoiced,I cried,I laughed,I cheered. Just read your Oct. 20th entry and wanted to send gentle hugs and to let you know that you, Charlie and Matt are often in my thoughts.