The Invisible String by Patrice Karst
When I began this 366 Day Book Drive, I shared I wanted to take the opportunity this year to share books that are special to some special families. Families of those who have a child with a complex medical diagnosis. Families who would most likely be impacted by book donations to a local children's hospital. While our book drive currently collects for books to be given to the book nook area of the cancer clinic at Phoenix Children's Hospital. I have very big dreams for our book drive. The importance of giving an adventure through opening a book is immeasurable. And all children deserve the simple gift of an adventure. Throughout this year, I will be sharing these special books, but also telling you that family's story. About their child. Creating a space for awareness for families, while sharing our love of books. I hope you will enjoy joining us in meeting these children & their families, and of course reading about all their favorite books.
Today is the perfect day to kick off our Share Our Story posts with our own son Sammy. Samuel "Sammy" Puma. Born today 8 years ago. January 16, 2012. Sammy was our first child we held in our arms. Sammy was always special. He had a way about him that drew people near to him, from his very beginnings. When Sammy was 3 years old, he was diagnosed with autism. This was after a couple years of speech therapy and realizing the concerns went beyond his communication skills. So just after his 3rd birthday, we started the therapy routine with ABA (an autism therapy). It was intense. It was a full time job. But he conquered every skill and task put in front of him. He continuously surprised us. We soon learned that no one could put limits or expectations on Sammy, because he would prove you were wrong. He would surpass whatever the goal. Our therapist could barely keep up with writing new goals and changing his care plan. Definitely not a bad thing. It meant that therapy was working. That he was thriving. And that is all we dreamed of for our child. For him to thrive. To be confident. To be independent (whatever that may look like for him). To know he was capable of almost anything.
Then in October 2016, at 4 years old, Sammy walked into the ER and was diagnosed with a brain tumor. Everything changed. Our lives changed forever. Forever impacted by cancer. Sammy endured horrors for months. He went through a brain surgery, that left him a fraction of who he was days prior. He lost almost all of his abilities. Days after the surgery he was unable to talk, to sit up, to move his eyes, to turn his head, control any of his limbs, eat, swallow. Nothing. After weeks and months of therapy, he eventually regained some of his abilities. But never was the child that walked into the ER again. Sammy endured high dose chemotherapy and a stem cell transplant. He endured months of being inpatient. Never leaving the four walls of his room. It was 6 months before he felt fresh air again on a walk to get a hearing test done, which was not successful. But he got to go outside. It was nearly 9 months later that Sammy was finally released from the hospital, and he got to come home. 246 days. That is how long he lived in a hospital room.
Sammy came home in a wheelchair, with a feeding tube, and needing hearing aides. His life was forever impacted by brain cancer. We slowly adjusted back into normal home life. Making the changes needed to our home, our vehicles, our lives to adjust to caring for a child who could no longer walk. A child who need round the clock care.
September 1, 2017. Ten weeks after we returned home with Sammy, we found ourselves back at the ER. 11 months from his initial diagnosis. Sammy was diagnosed as terminal. No treatment plan available to give us a cure. Just time. The next several months were a fog. A fog of palliative treatment to help give us time and Sammy quality to what life he had left to live. A fog of making the most of the time we had left. Making all the memories we could as a family. Knowing our time was limited. We were on borrowed time. Our son at 5 years old was diagnosed as terminal. We celebrated our last holidays with Sammy. We celebrated his 6th birthday. His last birthday on this earth. We celebrated Easter. And then we took him to hospice to die. On April 12, 2018, at 6 years old, Sammy died in my arms (mom's arms).
Our son deserved a chance at the future we had fought so hard to prepare for him. The future he was striving towards. The life we hoped for him. One where he was confident, independent and thriving, despite. One where he proved the world wrong about labels. All that was stolen from him. From us. Childhood cancer is not a priority in our world. Our son was treated with 40 year old drugs, and hoping the odds would be in our favor. Our child deserved more. He deserved better. Today my child should be turning 8 years old. But instead he is forever 6.
This is Sammy. This is just a part of his story, our story. You can learn more about his story, right here at adventuresofsupersammy.com, on our facebook page Adventures of Super Sammy or on instagram @adventures_of_super_sammy.
The book The Invisible String was chosen to be shared for Sammy. To honor Sammy on his birthday. The first time this book entered our home was in May of 2016. I was looking for books to help Sammy through the time that daddy would be away for basic training with the military. A book to bring comfort and understanding about how even being far, daddy still loved him and he could still love daddy. And they both could know. We read this book a lot from May until when Sammy entered the hospital. Then we read it some more. Because Sammy was isolated from family, friends, his brother. We read it to Logan (Sammy's little brother) to let him know that Sammy still was there, despite not being present. Then we read it even more in the final months of Sammy's life. We had a stack of books that we read often, and this book would float to the top often. And then this was the book we chose to have read at Sammy's celebration of life service. A way to open the conversation for all the children to know that Sammy is not far. That there is an invisible string that can reach Sammy, all the way in heaven. Now we continue to read this book with Logan, as a reminder that we are never far. That Sammy feels us, and we feel him. Our book is well worn and well loved. This is the book chosen to share Sammy's story. This book is for Sammy.
This book is a wonderful tool for a child that is dealing with separation. Whether going to school for the first time, or parent has to travel for a bit, or a loved one has died. It helps to open the conversation that love keeps us forever and always connected to one another. The invisible strings that keep us connected no matter how far. This book is easy to read and understand.
"Mom held something right in front of them and said, 'This is how.' Rubbing their sleepy eyes, the twins came closer to see what Mom was holding, 'I was about your age when my Mommy first told me about the INVISIBLE STRING.'"
Reading of The Invisible String at Sammy's Celebration of Life
Age : 4 - 8
Grade : P - 2
This book can be purchased for donation from our Wish List: 366 Days of Books Wish List
Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326
Paypal link : Paypal.me/pumafamily - Please notate Book Drive