366 Books Day 16 - The Invisible String - For Sammy

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



  

the day before your 8th birthday

Sammy,

Tomorrow you would be 8 years old. A birthday on earth would be so much easier and simple. But instead you are celebrating your second birthday in heaven, with 6 on earth. Grief math. You do not age beyond 6 years 2 months and 28 days. Every day further is a day you are in heaven. No wishes to blow out. No party to prepare. No friends to invite. No presents to unwrap. Just memories. Memories is all we have. The best birthdays behind us. Every birthday is behind us. We can not document as you grow. As you add another year to your life. I have no idea if your best friend would have changed with entering school? No idea what clothing you would prefer to wear? How you would want your hair styled? What tv show would be your automatic watch? Or what music would be you jam? No idea if you would be walking yet? Or back in martial arts? No idea if you'd be writing your name or using a keyboard? Would you still beg for your 3 books at night? Or would you be reading them to me? Everything about 8 is a mystery. Just as year 7 was all a mystery. I can dream of who you would have been. But dreaming is nothing compared to having you here. And that is impossible. You are forever 6 years 2 months and 28 days old. Your last birthday in our arms was January 16, 2018. So how do we celebrate you? A child who never ages? Who is not here? But our child in heaven?

We find ways to create space to honor your memory. For this year we are asking big. And it is for a lifetime impact on ONE family who will also endure a lifetime of heaven birthdays for their child. A child you will one day meet and welcome into heaven. I'm asking HUGE for your birthday, Sammy. And it seems impossible. About as impossible as living through tomorrow, another birthday without you here. It feels like we are being forgotten. You are being forgotten. That sharing your memory, sharing you is too much these days. That we are old news. You are no longer important. But you are important. You are forever loved. Forever cherished. Forever ours. We love you as deep as the ocean and as high as the stars. 6 was not enough, but it will have to do. Happy birthday sweet boy.

Love your Mom
Always and Forever

It feels like we are asking too much. I've actually been told I'm asking too much. But is it too much? If you were in our shoes? If this check for $10,000 was going to your family because your child died? Would our ask be too big? Our family never received this type of financial help, but we could have absolutely used it. It would have helped our family in so many ways. And we hope to honor another forever FAMily through this gift for Sammy's 8th birthday.

Will you help us celebrate our son? Can you donate $8 for his 8th birthday? Or $20 for 2020. Or $6 for forever 6. Or give big if you are able? Can you share? Tag your friends and family? Can you help make $10,000 happen for his birthday?

Sammy's 8th Birthday Fundraiser for FAM - Fighting All Monsters

Weight of Grief

This is what childhood cancer and grief looks like. This is over 3/4 of a year of being in a hospital room. Nearly 9 of those months consecutive. This was giving up on eating right because it was hard and repetitive with the choices. And I wanted comfort food. I sat for long hours, would walk the hospital when Sammy slept and a nurse would stay with him. But the combination of high stress, eating poorly and being minimally active took its toll. I gained 40lbs in 9 months.

And then gained more in the death of Sammy. I didn't eat, but when I did, it was out. I had no capacity to cook. We were given meals for a short time. A lot of pasta. A lot of comfort foods. We started with asking for our dietary needs, but found it was hard for people sign up, as they had no idea how to make a gluten free, dairy free meals. So we removed the restrictions of the lifestyle we once followed. And the weight just added on.

In April 2016, I was at 140lbs. I was working on getting down to 135lbs. Working to get the baby weight off from Logan being born April 2015. I was eating right. I was active. I would hike often, go on walks, just find ways to move.

Here I am now. 3.5 years later. Nearly 175lbs. I lost the extra 20lbs I gained in grief. My high by end of 2018 was 195lbs. So here I am with an extra 40lbs.

My clothes do not fit. I wear men's large shirts, and leggings. As leggings fit. But my leggings are wearing out after 3 years of wearing them. And I want to buy clothes I feel confident in. Not at a size 16. I want my size 8/10 back. I want my 32 inch waist back.

But grief is a weight. Having the motivation to work out. The motivation to cook. Some days I just do not have it in me. Some days I just want to stay under the covers all day. I want to eat chips and only chips. We have food in our pantry, we haven't in years. Frozen pizzas, boxed foods, frozen meals. I used to cook everyday. Our pantry with minimal foods as we used fresh foods. But grief changed that. We eat out too much. Because it is easier than cooking. Than meal planning. Than grocery shopping. Grief has changed the way I function.

This year I am fighting grief. Taking my life back.

FAM - Fighting All Monsters has created an accountability group for parents of medically complex kids to strive for a healthy lifestyle, despite our complicated lives. This is one of the ways FAM fights for families. Recognized that many of us have struggled in the diagnosis and after of our kids complex life, and created a way to support us. To challenge us. I am taking that challenge. To be healthier and more active starting now.

We are hosting a fundraiser for FAM for Sammy's 8th birthday. Our goal is to raise what FAM gives a family suffering the death of thier child. Their hospice/child loss grant. $10,000. We were not supported in a big way after Sammy died. So we know how needed this grant is for families. Our stress was high and added financial stress did not help. To ease the financial burden allows families to work through the stress of just grieving.

Would you help our family give back, support a family suffering the pending death of their child? Donate even just $1 to FAM in honor of Sammy. Click this link to help!
Sammy's fundraiser for Fighting All Monsters