Thursday, April 12, 2012

A family touched by a special program....

A family touched by a special program....

I know I’ve written about the Beads of Courage program before, but I have more to share as the journey continues...

My post about my Beads of Courage (BOC) Strings of Strength fundraiser is well past due, just like so many other things I would love to write about but can't seem to find the time. We had three different, small parties, one with my friends, one with my family and one with Jacob's family in Georgia. It’s now been months since my friends and family got together to string the beads of strength to support children who are battling illnesses, but as I sit and recall the fundraiser, I wanted to say it was a really wonderful experience!

When Jacob, Gavin and I left for Washington DC in January, it was very hard to leave Brie behind. She was heartbroken that she wasn't going to be able to be there for her big brother during his surgery. She knows how much I count on her to support me as well. As sad as I was, I felt good about being able to leave her new beads from the BOC sibling program that were meaningful for the moment, a small token of the journey that our entire family makes with Jacob.

Yesterday, Jacob's BOC priority mail came with his newly-earned beads for his recent surgeries, tests, and medical journey. Jacob, Brie and I are looking forward to stringing all his new beads together.

Earlier this week, our BOC representative requested that the BOC Distance Families share stories, pictures, and/or testimonies to include in a grant proposal that will help support the Beads from a Distance Oncology program. I asked TD, who I think is not only brilliant at expressing facts, but also with emotions, to write something for inclusion. I wanted to share with our friends and family what TD wrote...

Jacob’s War

It’s often difficult to stay positive. We constantly remind ourselves that this is what needs to be done, what has to be done, in order for Jacob, and ultimately for our entire family, to persevere. We search deep within ourselves. We search far beyond our boundaries. We rely on God and on others’ prayers. We rely on the opinions of educated professionals when, in all reality, no one has answers for the multitude of medical diagnoses that Jacob deals with on an everyday basis. Jacob’s Neurofibromatosis Type II is a different monster than many illnesses troubling our children. It is not definitely terminal like so many cancers are for so many children, which leaves the only certainty being that Jacob will battle this disease for the rest of his life. By no means are the “benign” tumors benign. They constantly attack, relentless in the pursuit of destruction. The “-oma’s” pervade life now more than ever. It’s reminiscent of Dorothy’s walk down the yellow brick road. Gliomas, and ependymomas, and schwannomas, oh, my. Yet each four-hour drive to Arnold Palmer for MRI’s and chemotherapies, each flight and Metro ride to NIH for bi-annual monitoring of ears, eyes, brain and spine, every early morning and every late night effort to be where we’re scheduled to be, all provide hope. Hope that there will be a light. However small, and knowing that the tunnel will never end with NF2, that hope exists is a battle won.

Jacob’s war against NF2 is never-ending, and like in all wars, there are casualties. Innocence. Normalcy. Physical prowess. Even the dreams most children have of being a sports superstar or an astronaut change to dreams of just being normal. What most people consider “normal” future expectations, such as a career and a family, become far less uncertain for children with perpetual diseases like NF2. Jacob fights on a daily basis, with surgical scars as his prizes. But the fact that he fights speaks to Jacob’s courage. It is monumental. More than in any person I’ve witnessed in my life. Jacob takes hits in stride, and under the guidance of his general, coach, trainer, cheerleader and angel (Mom’s tend to have many roles), shows resiliency toward anything NF2 can dish out. We, Jacob’s family, always try to show support, but more often than not, our words and actions fall short of expressing how we truly feel. We are all proud of Jacob, though “proud” doesn’t come close to the actual amount of emotion that should be expressed. He is amazing. He is awe-inspiring.

Only recently was the Beads of Courage program introduced into our household. I was skeptical of the impact that this program would have on Jacob, not because I thought the program was deficient in any manner, but rather I didn’t think Jacob would take to a bunch of beads as the best way of opening up his journey to others. I look back now and can gladly say that I was wrong. Very, very wrong. The Beads of Courage program, specifically the Beads from a Distance Oncology program, has provided a weapon for Jacob to use in his war. An advantage against NF2. Jacob’s beads give him strength. They depict the battles of the past, the obstacles overcome on Jacob’s journey. No longer does Jacob have to focus on the scars. He can visualize his journey as something much more positive. As a string of courageous acts that have earned him the right to clutch a nearly 5-foot string of deeply meaningful symbols of his strength and courage. He shows them off to family and friends. He explains what each one means if you give him the opportunity, and if you have time to listen to them all. He looks forward to receiving his beads in the mail, adding to his already-arduous journey. Jacob loves them, which, to us, is the only thing that matters.

On top of Jacob’s excitement towards his beads, the Beads of Courage sibling program has integrated Jacob’s sister and brother into the journey. Often overlooked is the fact that Jacob’s war affects our family nearly as much as Jacob. Brie and Gavin have altered schedules and sacrificed activities and emotions to be with Jacob. It is a priority. It is part of life. The Beads of Courage program allows Brie and Gavin to share some excitement with Jacob. To become closer. To bond. As a father, there is no bigger joy than having a happy family. It doesn’t always stick (which is true in EVERY family!), but those moments where laughter and smiles overcome everything else in the house should be cherished, for these are the times that make a life worth living.

Over the past year or so, my wife has been involved in the Beads of Courage fundraising program, soliciting friends to help make bracelets for children who deserve the opportunity to wear their wars on their wrists and around their necks. The program has brought family and friends together, sparked hope during difficult situations and allowed our son to smile about things that most would frown upon. There are no words that could sum up the gratitude towards the creator of the program. To grant families this instrument against perhaps the most difficult situations they will ever face is priceless.


  1. Beads of Courage is honored to support Jacob!!! Thanks for these great words!

    Ashley Lapointe
    Beads of Courage Program Manager

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