re-orginizaing our fund, taking steps to incorporate it and then filling out the paperwork for our 501 (c)(3) status. We have asked 2 wonderful people to be board members which we will announce soon.. We are very excited about our adventures.
Another bit of good news is that we found another manufacturer for our products. Finding a sewing manufacturer is not an easy task in New England.. Ug.. We are also pretty much all converted over to Organic Foods. You can read more on Kezia's new blog http://livingorganicforlife.blogspot.com/
Anyway.. I miss my daughter deeply .. my pain is deep today. It gets better, then it gets worse. Normal I am told. I am moving forward though and we have some great new money raising campaigns coming up soon to raise money for clinical trials, research and a better quality of life for children, parents and caregivers of children with Neuroblastoma.. Our goal is a cure. .. More details soon..
For those who read my blog.. I want to thank you all for reading, commenting and sending your encouragement and love. You are all wonderful and it means a lot to me when I get feedback. This is a great healthy release for me and it really helps..
In closing.. I want to leave you with something to think about..
What do you think she was thinking about? When I took this picture she was just staring out into space..
Thank you for your post today. I love that little girl of yours even though I've never met her. I know the grieving process is up and down! But know that there are families in Utah praying for you and Kezia. Excited to see the changes coming! I know that when I've had a really hard time that the easiest way to cheer me up is to serve others.
ReplyDeleteHer eyes show strength and courage and I think she was thinking what wonderful parents she has. I've never met you, but your story moved me and makes me want to continue the fight to raise awareness and funds for curing childhood cancer. Your daughter is beautiful and she will live on for forever.
ReplyDeleteHi Mike. I'm sorry today is hard. I hope that hope for the future, for bringing about a cure, helps some days. So happy to read your posts--I'm glad you take the time to share them, and know they must come at a cost sometimes to you. They help the cause I think. Must talk with you soon--this weekend if possible. Some things I want to share that could change many things for the better. Anyway, strength to you today. Oh, and I think that she was at peace in that picture because of you both. When children feel safe and have the comfort of their parents with them, they are quite amazing in that they just accept that and are happy with it. No worries about the future, no fear of prognoses or possible outcomes....just happy that their parents are with them and that they feel love.
ReplyDeleteLove to you both today,
Audra
I always do wonder when they stare off, what are they thinking...it looks like she was looking out a window. maybe she was thinking about going swinging? maybe she was thinking about nothing in particular the same as we do. just powering down a bit and, as another commented, content in the moment b/c you were there.
ReplyDeleteHi, Mike,
ReplyDeleteI wish there was something anyone could say to ease your pain today but there isn't. You should be so proud of yourself though, both you and Kezia, what you are doing and planning sounds amazing and I just know it will help someone in the future who really needs it. And my first thought when I looked at the picture was she was thinking of Fallon, maybe looking for her furry friend to snuggle up to because you could tell that Fallon gave her peace and comfort.
Thanks for sharing your beautiful daughter with the world.
I agree that emotions go up and down. It takes time to process. As for Saoirse's deeply stare or look thoroughly, she could think of anything that she enjoys/loves so much.
ReplyDeleteMIKE, I HAVE BEEN FOLLOWING YOUR FAMILY'S STORY SINCE LAST WINTER AFTER READING OF KEZIA AND SAOIRSE'S CANCERS ON THE INTERNET. I REMAIN IN AWE OF THE ABILITY OF ONE LITTLE BABY TOUCHING SO MANY LIVES WORLDWIDE. I KEEP YOUR FAMILY IN MY DAILY THOUGHTS AND PRAYERS, AS I AM SURE MANY OTHERS ALSO DO. I FELT A SENSE OF CELEBRATION WHEN KEZIA'S SCANS WERE REASSURING. YOUR DEVOTION TO YOUR CHILD AND WIFE ARE EXAMPLES OF TRUE UNCONDITIONAL LOVE. I, PERSONALLY, HAVE NEVER HAD TO DEAL WITH THE DEATH OR SERIOUS ILLNESS OF A CHILD AND PRAY IF I EVER HAD TO, I WOULD BE ABLE TO MIMICK YOUR AND KEZIA'S STRENGTH AND DIGNITY. I SENT SAOIRSE A CHRISTMAS TREE ORNAMENT IN EARLY DECEMBER. IT WAS AN ANGEL WITH HER NAME WRITTEN ON IT. I THOUGHT THE ANGEL DEMONSTRATED THE BEAUTY AND INNOCENCE OF A CHILD. I FELT SO GOOD THAT DAY THAT I BOUGHT AND PACKAGED IT UP FOR POSTAL DELIVERY. I WANTED TO MAKE A POSITIVE DIFFERENCE IN YOUR FAMILY, AS YOUR FAMILY HAS CERTAINLY MADE A DIFFERENCE TO MANY, MANY OF US "FOLLOWERS". I SENT SAOIRSE THE ANGEL WITH HER NAME AND YEAR WRITTEN ON IT HOPING IN YEARS TO PASS SHE COULD LOOK AT IT AND MARVEL AT HOW WELL SHE HAD DONE AND AS A REMINDER OF HER PROGRESS.I NEVER DREAMED OR WOULD ALLOW MYSELF TO IMAGINE IT WOULD HAPPEN ANY OTHER WAY. I,AMONG A MULTITUDE OF PEOPLE, GRIEVED DEEPLY WHEN GOD HAD ANOTHER PLAN.I HOPE YOU ALL RECEIVED THE ORNAMENT AND FEEL ALL THE LOVE AND PEACE, THAT YOUR ONE SWEET LITTLE CHILD, MADE SO MANY OTHERS FEEL! THE IMPACT THAT ONE LITTLE BABY HAD ON A WHOLE WORLD CAN ONLY REMIND ME OF A SEASON SO VERY LONG AGO WHERE ANOTHER BABY IMPACTED MILLIONS OF PEOPLE. A SEASON THAT WE AS CHRISTIANS CALL CHRISTMAS.HOLD YOUR HEAD UP HIGH AND BE EVER SO PROUD OF YOUR HIGH INTEGRETY AND THE VALIANT FIGHT YOU AND KEZIA FOUGHT FOR SAOIRSE.IN YOUR REACHING OUT AND SEARCHING FOR ANSWERS FOR HER,SHE BECAME NOT ONLY
ReplyDeleteYOUR CHILD, BUT EVERYONE'S CHILD.WE WILL NEVER FORGET HER. GOOD LUCK WITH ALL YOUR ADVENTURES. ALWAYS LEAVE TIME FOR YOU TO LOVE ONE ANOTHER AND SAOIRSE'S LOVE WILL ALWAYS REMAIN IN YOUR HEART.WHEN YOU LOOK AT SAOIRSE'S ANGEL, REMEMBER ALL THE PEOPLE IN SAVANNAH, GA , AND PEOPLE EVERYWHERE ,THAT LOVE YOU!
WISHING YOU HAPPINESS AND A NEW SEASON OF LIFE, DORI WILLIAMS 602 JACKSON BLVD. SAVANNAH, GA 31405
She is a true angel
ReplyDeleteCL
Hi, Mike. First and foremost, thank you so much for continuing to share your stories and thoughts with all of us that have been following you and your family from the beginning. It really means so much to us that you take the time to share with us. I don't think you realize how much Saoirse truly touched our lives and will stay in our hearts forever, as will you and Kezia. As for the picture you posted, I think it is a beautiful picture of your daughter. I think she looks very content and peaceful, and is perhaps dreaming of what is ahead. She's such a smart girl, though, she could very well have been writing a song to dance to or a story to tell later. Whatever it was, it was peaceful...and probably had to do with her loving parents and faithful Falon! I know how difficult it will be for you and Kezia to go back to the Jimmy Fund, but those families will be happy to see you and need to see you. I spent many months in Swedish Hospital in Seattle on the Children's Cancer floor in 1991 when my 8-month old nephew had leukemia. You get very close to all of the families and its so difficult to watch the children and their families go through the different stages of different cancers. They need you and you need them. Take Saoirse's strength...she'll be with you! God Bless You and Kezia, and know you are in my thoughts daily in Idaho!
ReplyDeleteHopefully she was thinking probably about her favorite things and thinking of her amazing parents. I am deeply touched by your story - I read about so many blogs and posts about these amazing children fighting and it breaks my heart...such a testament to how much one person or a family can endure. I try to step away from myself and really try to put myself in this child's shoes or their parents and I can't do it - I can't even imagine what it must feel like. So...I thank you for being amazing inspirational and for having the strength to use this pain and use it towards making a difference in Pediatric Cancer and NB. I thank you for sharing your journey with us all and for sharing Saoirse. Hugs from Long Beach, CA.
ReplyDeleteShe was thinking how amazing her parents are and how lucky she is.
ReplyDeleteTo me.. her eyes show wisdom well beyond her years, strength, love, and understanding
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