About
Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
Tomorrow is March. I don’t have to look at a calendar to know, I can feel it. The exhaustion, avoidance, sadness and dread has already taken over my body. Paul feels it too. He asked me last night why he was so tired. I just replied, “it’s almost March.”
Grief is personal, random and undoubtedly changes.
For me, the first year was a blur. Dates and situations were triggers.
While I’ve come along way in terms of dates, there are always some that will stick with me… forever. My one dear friend still texts me every 30th of the month to say she is thinking of me and Shane.
In the second year, time softened the sharp edges of pain, but the sadness was greater. The realization was that THIS was our forever. Shane’s story has much sadness to it, but out of the sadness we have created greatness. For that, we are proud.
I was also pregnant (worrying, yet celebrating cautiously) and our first fur baby Monty was really sick. Dare I say it, but his symptoms were eerily similar to Shane’s. The hunger strikes, the celebrations at the little bits of food he could tolerate, his jaundice, his fatigue. It was too much to handle during such a sensitive time. I can say that now. It was really a lot to handle emotionally.
This year, I don’t know how I feel. Overwhelmed and distracted come to mind. Will needs me, but it’s not even March and I want to hide. I have lots to do, especially for the foundation, yet there are always things popping up and distracting me.
I see it in my husband and kids too. Ella asked just yesterday after dinner….”Do you think he will survive?” She meant Will. I’m not going to lie, it’s a hard one to deal with it.
It’s not the first time this topic has come up. It’s been naturally happening since my pregnancy. Honestly, I do tumor checks every time I change his diaper. I question myself on how old he will be when I can STOP doing it.
Our new family dynamic, grief, foundation events and angelversaries….March will be filled with many posts.
Can you feel it?
The hustle & bustle of the holidays.
I feel it too.
I want to put into perspective what some families affected by childhood cancer are feeling. What we felt a short 3 years ago. What we still feel in terms of our grief.
Some of the families we are helping this year are preparing for a wish trip, another has a child on hospice, one is bereaved, another a new diagnosis and one more facing a relapse.
Other families we know are entering their first holiday season without their child. Others have yet to celebrate the holidays even after 3-4 or more years since their child has passed.
Others are like ours and help other families and siblings affected by childhood cancer during the holidays.
It’s what helps when you are reminded of your lost child….
-a simple ornament
-the opening verse of your favorite Christmas song
-the traditions created, such as seeing Santa downtown
-their stocking
The list goes on….
I know it’s been a awhile, but I assure you we have been busy behind the scenes planning and reaching out to begin our holiday giving program. Everything this year has been slow. I mean when the weather has been in the 60’s (not anymore!), it’s hard to think that the holidays are right around the corner!
We currently have families lined up and are awaiting their wish lists.
The arrival of the holidays fills us with excitement and anxiety. We started the month with a scary accident that landed us back in a medical setting. Thankfully it wasn’t serious, but the entire situation sent us into emotional turmoil and we are still feeling its affects.
What others don’t realize is that it creates a ripple effect that triggers things in our and our children’s lives.
After the loss of Shane, I’ve realized that nothing is “normal” for us.
As we balance the emotional affects of the situation, enter in the
holidays. As happy of a time it can be, at times it can be quite sad when you are missing an important piece of your heart and family. Creating new memories and traditions while missing Shane tugs at our hearts.
Will has brought new life into our family unit. We are so blessed to have him and we often say how Shane picked a good one for us. The new baby brings about a new dynamic for us not just in everyday life, but in our life as a cancer family.
Some have said to us that we can move on from what happen to Shane because we have Will. They are wrong. What we do with Shane’s Future Days gives us purpose and continues Shane’s legacy and allows us to live in a world without him.
Helping families during the holidays is therapy to us. It helps us get through the season. We look forward to the shopping as we remember being on the receiving end and how a simple act can bring so much relief and knowledge knowing the kindness of others.
So as the holidays begin, remember to be thankful for your blessings. Remember those who have lost and be gentle. Sometimes in life we create our own stresses, not realizing there are others dealing with much greater and real stresses that are beyond their control.
Happy Thanksgiving. Thank you for your continued support.
Day 3: Lost moments
When you lose a child, you can’t help but wonder what the future would have held for them.
As time goes by, you move along through the motions and sometimes it hits you…what could have been, where would Shane be now and what would he have liked?
Paul and I experienced that this past weekend.
Soccer season has started.
Chase has been playing with his team in tournaments and Ella’s season started on Friday.
As we struggled with some apprehensions, we reminded Ella that Shane would be starting soccer this year too. As the words came out of our mouths, the emotions hit. Wow, he really would have been kicking around that soccer ball and playing in the same program as her.
He was doing pull-backs at 14 months old and made every game of his big brother’s since he was born and then when he could during his treatments.
We know we are not alone. Unfortunately lots of other families experience the lost moments of heading to college, another family vacation, the first day of school pics and the list goes on.
Our children are worth more than 4%.
