Sunday was when the grief starting creeping in.
THIS week is THE week and TODAY marks the two year anniversary of Shane’s passing.
On one hand, time has moved forward slowly and on the other, in the blink of an eye. But, everyday I see his beautiful smile and bright blue eyes and can hear his tiny voice, whether it’s his signature giggle or grunt. I remember so many things about him, yet fear I’m losing some of the details as we move along.
My grief has changed. They said it would. It’s changed for all of us. It will every year, apparently.
For my children, it’s gotten bolder. Their questions and thoughts they formulate and ask have been mature, brazen and sometimes cutting and to the point. We answer them in the best way we can and are so very proud of them for expressing their feelings. We often think of all they have been through and how they manage to be such thoughtful, well adjusted kids. We are very thankful. For us, our grief has softened a bit.The edginess has rounded and things and situations that affected us prior, don’t have the same feelings as before.
I’m often asked how we plan to spend the day marking this anniversary. One thing, time is going to continue. It’s not going to change my feelings or thoughts about Shane or how we chose to mark this day. I realize over time, things may come up, such as events, etc and when that happens we will adjust accordingly. For now, we choose to have the kids continue in their normal routine while Paul and I spend the day together. We spend time outside, we all tell stories of Shane and how much we miss him, eat his favorite foods or head to his favorite places to eat (not Chipotle!) and of course we send him a lantern.
Last year I was just sad, but this year my grief is raw. I keep replaying the days and moments leading up to his passing. People often express how death is peaceful. That moment is, but the approach is not. Often there is such a high point before everything declines.
It definitely hasn’t helped that our first fur “baby” Monty has been sick. Some of his symptoms and behaviors bring me back to those moments.
Today for us, Paul and I, we choose to let ourselves be sad. Every other day, we wake up and face the day with a smile. We choose to live and surround our children in happiness. We move forward with Shane by our side. We advocate for him and children like him to help in our grief. It’s healing to us.
We’ve done a lot since Shane passed to mark his legacy. We’ve raised thousands of dollars and donated so much more. It’s pretty awesome. Shane’s Future Days has donated $35,000 alone to research since Shane’s passing. Thousands more have gone to CHOP and to assist families battling rare cancers.
We couldn’t do this without all of you and our family and friends. From attending our events, donating, and volunteering to approaching us on the street just to tell us you know Shane’s story, thank you all so very much. Thank you for keeping Shane’s memory alive. Thank you for keeping us going.
Today, we traveled to speak at Spring Grove Mini-THON.
Paul attended PSU with their advisor.
There were 15 families there affected by childhood cancer.
It was an incredible event and we were humbled to be apart of it. We met some amazing fighters!
2017 SG Mini-THON raised $102,087.18!!! FTK
Thank you for having us!
Our Third annual Celebration of Life will be held June 17, 2017!
We already have amazing donation sponsors who have contributed to help make this year’s event our best yet!
Special thanks to Tieks by Gavrieli for their generous gift card donation, Southwest Airlines for 4 one-way flight donations and Elite Island Resortsfor donating Caribbean vacations valued at over $14,000!
We can’t wait!
Shane is always on our minds, but today is just one of those days when he’s particularly prominent.
This week we will be announcing the date for our Third Annual Celebration of Life! We’ve been working hard on securing amazing prizes once again!
I wanted to share this video created by The Children’s Cancer Therapy Development Institute in collaboration with a young woman who lost her sibling to cancer.
We were so moved to watch this (you can see Shane’s bench in the video) and know that Shane’s tumors have helped in the research to establish a Phase I rhabdomyosarcoma clinical trial.
This is why Paul and I do what we do. We raise awareness and funding to help support institutions like cc-TDI so that they can make major breakthroughs in childhood cancer research. This is Shane’s legacy. Thank you to those of you that helped contribute to it!
https://www.youtube.com/watch?v=iToF4FGg64Y&feature=youtu.be
On February 3, 2017, our family was wecomed back to speak at ASHS’s Mini-THON. It’s an event we look forward to every year.
Three years ago, we spoke with Baby Shane. It was when he took a turn for the worse, but the support and kindness shared by these students and community helped us get through it.
These students fundraise and create a bigger and more successful event each year with the help of their amazing teaching support staff.
Congratulations on raising over $46,285.17 to help support pediatric cancer through the Four Diamonds Foundation 🎉
Thank you for having for us! We were proud to be apart of it.
Chase and Ella had a blast and we are always humbled by the kindness of these exceptional students!
For every child lost. For every child still fighting. For every child in remission. For every child yet to be diagnosed.
No one fights alone!
Happy New Year!
Ringing in the New Year this year was a bit different from last.
The loss of a chid has no reference. It’s indescribable on so many levels. To say good-bye to 2015 was our final good-bye to Shane.
I remember having so much anxiety during the holidays (still do) and the countdown to 2016 was hard. As that ball dropped, all my memories of his last months came rushing into my mind-the good, the bad and the unthinkable. I was saying good-bye to the year my son lived his last moments & when I held him last. How would we feel in the new year?
Well, we survived.
2016 was a successful year for Shane’s Future Days and we are ready to push full speed into 2017. Thank you for standing by us, remembering Shane and helping to make our events amazing! We look forward to new events this year and have already begun our planning.
Chase and Ella welcomed the New Year with a “cleanse.” We continued our tradition of spending time at the shore and this year both took part in a polar plunge with their Pop Pop.
Ella wrote Shane’s name into the sand. It was like she was including him with us into this new year. Perhaps he was there with us. The picture shows a green orb. I looked up meanings of orbs and found this:
“In spiritual practice, green is associated with the heart. It is also associated with nature. Green orbs are sometimes thought to be an indication of the presence of a human spirit…. Likewise, green orbs may represent love or oneness with nature.”
“Christmas brings family and friends together, it helps us appreciate the love in our lives we can often take for granted. May the true meaning of the holiday season fill your heart and home with many blessings.”
* Special thanks to Heather Milano Photography for creating these amazing images for us.
It was a busy weekend filled with soccer and celebrating the season.
Today we followed one of our family’s traditions of taking the kids downtown to see Santa at Dickens Village in center city. We have been doing this since Chase’s 1st Christmas and have continued it with Ella and Shane and even now. While in line, a woman told us she follows Shane’s story. It really warmed our hearts knowing that Shane’s memory and his story continues on. Thank you for telling us!
As we settle in for the night, we lit a candle for Shane. Today, CHOP held a candlelight remembrance service for worldwide candle lighting day. It’s a day on which people around the world gather to light candles for children who have died and to show that they will always be loved and never forgotten. While, we didn’t attend, we still participated at home. Perhaps one day we will.
Shane’s Future Days was proud to support a team (The ’07 VE Gunners) in the Storm the Heavens Futsal Tournament
We were proud to be apart of a great cause!
The Gunners were 2nd after their friends the Fishtown Rowdies.
Keeping Phil in our prayers
#stormtheheavens
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