A loving tribute written by a father to his son who has neurofibromatosis.
Written by Derek Depelteau
The gift you have given to me to become your father is one of the single greatest honors I will ever receive. I am truly inspired each day witnessing your love for life, pursuit of laughter and relentless spirit. With this letter I hope to capture the essence of how proud I am to be your father and how inspired I am by your fearlessness to fight this disease we have come to know as neurofibromatosis (NF).
You were born on December 26th, 2015 and I remember feeling such a sense of pride as I held you for the first time. You had let out a huge smile in those first moments and I knew immediately that the name Isaak, meaning laughter in Hebrew, would serve to be an important piece of your life journey.
In just a few short months we would learn of your diagnosis. Your mother noticed that your left tibia appeared more curved than normal and some spotting on your body were later identified as café-au-lait spots. Neither your mother nor I had heard of neurofibromatosis let alone pseudarthrosis – a fracture that will not heal and is often called a “false joint”. Naturally, we were struck with a rainbow of emotion after learning about the vast spectrum of severity this condition could bring to your life. Our emotion was raw and overwhelming. We wanted to control it, take it away and trade places with you out of sheer love, fear and an insatiable desire for your life to be without pain, burden or any limits! Your mother began to form strong relationships online with other parents struggling with children with this diagnosis as well as with organizations like NF Northeast. These critical friendships and bonds played a life changing role in our and your life in just a few short months.
On July 8th, 2016 a most terrible thing happened…. your left tibia fractured while playing in the driveway. We knew right away that your leg was broken despite trying everything in our power to protect it since learning of your diagnosis. Unfortunately, after 10 long weeks in a cast, the break in your leg had not healed. Our options appeared limited given both the complexity and rarity of the condition. I felt defeated and scared, but it was your bright smile, energy and fearlessness that fueled our hope that we would find a path forward. Over the next year, we met with and spoke to specialists nationwide. We were faced with ultimately two choices, commit to multiple rod placement and leg lengthening surgeries over the duration of your childhood or amputate your lower left tibia. Both options made our hearts ache with agony as neither path was painless, simple or guaranteed. No parent wants their child to experience such things and no parent wants to be forced to make such a life changing decision.
The days between the fracture and your actual surgery were the hardest yet most thought-provoking days of my life thus far. I will be forever grateful to the community of families around the world who continue to provide us with their insight, love, encouragement and support. With the strength of our faith coupled with the support of those families we made the gut-wrenching decision in February 2017 to amputate your precious leg. For us amputation was the only way to achieve “No Limits” for your life. This decision went against what many in the medical community had advised, but we knew in our hearts that this was best for you. It was absolutely overwhelming and heart-wrenching for us to have to make this decision…to know that your precious foot would be removed never to be seen again, that your life as we know it would be changed forever becoming an amputee. I worried that others would look at you as different and that someday you would be angered by our decision not to try and save your leg. These were all fears and unknowns, but our faith teaches us that such fears have no place in our lives.
Your amputation took place on May 22nd, 2017 at Boston Children’s Hospital. I will never forget the smile you gave me as you hugged your baby bear tightly while being rolled into the operating room. After 4 long and agonizing hours of waiting, we received word that your surgery was over and everything went beautifully. In that moment, a weight was lifted and I felt assured that everything would be okay. Thanks to the many selfless professionals at Boston Children’s Hospital your recovery went smoothly and in 6 days you were ready to return home and begin your 7 week journey to receiving your new leg and a life of “No Limits”! Before we knew it, your cast was scheduled to be removed and we would all see your amputated leg for the first time. Anxiousness set in again and the three of us held hands as the technician removed the last of your dressings. Your leg was beautiful and unique, and seeing you marvel in this change made me proud and inspired. You kissed your leg and let out that magnanimous smile and I once again was filled with peace and assurance that you would be okay.
Your spider man themed leg was presented to you on August 2nd. Your ability to walk once your new leg was on was instantaneous. It was as if you were overcome with super hero powers!! There was and continues to be no stopping you…you are truly “without limits”. I remain a humbled and proud father by the gifts you have given me through this most incredible year. While we may have lost your left lower leg as part of this journey, we have gained more than we could have ever imagined.
In closing, I want to encourage you to never lose that fighting spirit that God has given you or that bright smile that melts hearts and inspires those around you. While NF may always be a part of your life, never let it define you or get the best of you. Please know that I believe in your strength and will remain by your side no matter what the future may bring. We will continue to fight NF together and always!
With all my love,