A Mother’s Perspective on SRNA Family Camp

By Rebecca Whitney

I know it sounds cliché, but it is the truth when I say that my most challenging, yet most rewarding job, is being a mom to my three children. There are days when I am so exhausted from the physical and emotional strain, that I simply can’t sleep. I’m just that tired and overwhelmed. Then there are the days when I am elated and have a sense of peace because my children’s smiles, excitement, happiness, or joy is so conspicuous it permeates through to my heart and soul.

When the stressors of a rare diagnosis such as TM compound the day’s exhaustion, the moments of peace and happiness can seem to be few and far between. Those moments are still so precious and hold a very special place in my memory and my heart.

One of these special moments, in particular, was when our family attended the SRNA Family Camp for the very first time. It was a time in our lives when we were coming to painful realizations that our family’s life, our son’s life, were indeed very different from most of our family and friends with children because of our son’s diagnosis. It was when he also really started to understand that some of these differences weren’t going to change; that he wasn’t going to grow out of the challenges he had always known. The same year we attended camp for the first time was the same year our son had met another young boy with the same diagnosis. He had found a comfort in getting to know him and was excited that his family was attending camp, too!

At camp, we met many other families who understood what made our lives different from so many other families – but we were so much like the families at SRNA Family Camp. Some had been on this daunting journey for many years already, and others were newcomers to this world of “rare,” and they had bewilderment in their eyes much like I know we did when we heard our son’s diagnosis. My other two children even remarked after our first day at camp how it was so comforting not to feel so “different” from everyone else. We were able to talk with medical professionals from world-renowned centers that we never even fathomed we may have access to for our son. We learned so much as parents and as a family from not only the medical professionals attending, but from the other families, parents, and children. We came away with a renewed sense of hope and a fighting spirit. My son had cried the night before we had to leave, he simply didn’t want to leave the magical place of camp and his new-found friends. He had found joy in attending the camp that he hadn’t experienced before, and it was so hard to leave to go back to our day-to-day routines. It was tough to see him so sad about leaving, but I knew it was only because of the happiness and excitement he had found with this extended family; a family we knew would be a part of our lives for the long-haul.

It is my sincere hope that if a child, a parent, or a sibling, must face a life-changing diagnosis of one of the rare neuroimmune disorders, that they may have at least one time at SRNA Family Camp with their SRNA family. My life as a mom caring for a child with TM, my son’s life, my entire family’s life changed after our first time attending camp. We found perspective and hope, a joy and a sense of peace that I’m not sure we would have found otherwise. This mom found other hearts who knew what her heart had been and was going to go through.

This Mother’s Day, celebrate the moms in your life and the love they have shared.

Support children and families diagnosed with rare neuroimmune disorders by giving them a chance to attend our Annual SRNA Quality of Life Family Camp; we will honor your mother by sending them a Mother’s Day Card on your behalf.

Click here to send a card: https://ow.ly/NeNu30beUad

SRNA Quality of Life Family Camp is a unique and life changing experience that provides children and families living with rare neuroimmune disorders (ADEM, AFM, NMOSD and TM) a chance to experience the joys of a completely accessible camp and engage with leading medical practitioners so they can be better advocates for their own health. At camp, these children can be themselves, free of fear and stigma and not be reminded of their daily challenges.