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.

 

 

 

 

 

17634391_797573520394713_3637787065412797210_n17621764_797691553716243_171516968270015165_o 17545269_797692717049460_2723022117295770274_o 17492551_797692727049459_6733503917967255601_o 17621789_797692720382793_9149997115596122589_o

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!

 

17353409_789812907837441_6850356615500243238_n 17264531_789812937837438_2690976569991930431_n 17353391_789812954504103_2250903384501623594_n 17308716_789812994504099_6566777097086560885_n 17362070_789813001170765_3860625617088473683_n 17362620_789812911170774_1070861988089023593_n

 

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!

shanes-future-days-217349873_788467501305315_3325307334384077151_o 17358672_788467411305324_142099283264472608_o

17361711_788467661305299_7576991092943692851_n

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!

16473009_765323470286385_6213773269723095614_n 16472874_765323516953047_8047339080136420819_n 16427735_765323473619718_3703256681489434073_n

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!

forks-high

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.”

15822942_744842399001159_4698151079260670235_n 15823532_744842402334492_2883634899210008639_n 15894768_744842405667825_230305841957684671_n

“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.

15493319_731849260300473_7698070509261370493_o 15493778_731849256967140_6093210835411079081_o

15385361_730697473748985_9158987832507805972_o 15391380_730697480415651_2166081037588785371_oIt 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

15317838_729797997172266_504050660648963019_n