A Walk Beside You : Rare Disease Advocate

For those who know me I read. I read everything. I look for signs, signs of hope and courage everywhere. We join support groups, we advocate. We grow. I’m creative to a fault. My mind wanders to a fault. But I am working on it.

I hadn’t blogged in awhile so I thought it was a perfect time to write about today and a support group who has helped us see a brighter tomorrow. Because of these support groups, Samantha and I are about to begin a new journey together.

Today I join Samantha on the Rare Disease Advocate journey. I originally decided to take a step back and encouraged her to do this for herself. A couple of months ago she called from Washington D.C and said “Mom you need to be here with me.” If you know me I asked around for advice. This time I should  have taken my own advice. I listened to others who stressed it was time for her to do this herself. Well, truth be told she’s been doing all of this herself for years. The Day Dr. Menezes took her aside and looked Sam straight into the eyes, held her head into his hands and said “WE CAN DO THIS, YOU CAN DO THIS, IF YOU ARE WITH ME. NO ONE ELSE. JUST YOU.” Oh the chills I still get when I think about that day in June of 2006. Fast forward to the day she left for Samford … the decision to attend Samford was the day I knew we were BLESSED to seek individuality and presence of FAITH, BODY and MIND. Every single day is HER journey. I just have the BLESSED opportunity to go along on her ride! We all have been BLESSED to jump on each others ride into tomorrow. Building a legacy for others to succeed.

Because you see …

For those of US, facing major life changes, including medical issues, we learned we are an isolated group. We have support groups of friendships and healthcare professionals to guide us – to share in life’s journeys where other’s haven’t and to share experiences and advice that can be healing to the mind, body and spirit other’s cannot view from our walk. I can only do the best I can. I am a people-pleaser and I need to learn sometimes it’s best to go with my gut. It’s time to listen within more.  It’s ok to take a break from every day and let it happen. Let go and trust in the journey – GOD has a plan. Trust.


In Judith Johnson’s and William McCown’s wonderful book Family Therapy of Neurobehavioral Disorders, they state: “Although support and self-help groups can vary greatly, all groups share one thing in common—they are places where people can share personal stories, express emotions, and be heard in an atmosphere of acceptance, understanding, and encouragement. Participants share information and resources. By helping others, people in a support group strengthen and empower themselves.”

The level of stress, loneliness and depression many survivors and caregivers experience can have a negative effect on health at a time when they most need their strength. Often the ability to maintain social contacts – friends and family, recreational activities and social outings -are no longer possible due to the effects of the injury. As these previous friends and activities fall away, the survivor and caregiver can feel like they are the only people in the world who have ever experienced this.


I recently stumbled across an article by Deborah Raeiss-Dana (Arkansas Children’s Hospital) that resonates in my soul. Raeiss-Dana writes, “When your child is diagnosed with a life-threatening illness, the world seems as if it has been knocked off its axis and everything is spinning wildly out of control. There are new medical terms to learn, and new procedures and routines to master. You want to provide your child with every opportunity for survival without making any mistakes. Life as you know it is put on hold and you rely on adrenalin to get you through the initial crisis. Perhaps the hardest thing to deal with is the overwhelming unfairness of the situation. “This shouldn’t happen to kids-especially my kid!” But it has.”

Last week I happened to have the opportunity to visit my “Support Group” of friends and families back in time when I needed the most support. When Samantha was diagnosed with a very rare condition, we had to seek care in a city I was not too familiar with. I guess by now after following along on this blog we found out that life is complicated, but never too complicated to seek out the good and cherish every moment life has given to us.  I am not an accomplished writer but I can tell the stories. AND I LOVE MY FRIENDS! I am also a Mother who deeply LOVES her Children for who THEY are.

If they build it, we will come … and in our case we came, we found courage, we stayed, we prayed, we healed, we loved, we made friendships, we found the meaning of JOHN DEERE GREEN, we continue to create and walk along with a successful network of caregivers. And with the trust in faith in our healthcare professionals, we thrive. We build a world of support from those who were fighting for the same causes as we were. We will forever be changed for this opportunity in life. So we advocate.

Quote of the Day

“Bravery is not a quality of the body. It is of the soul.” – Mahatma 💗💪🙏 https://www.instagram.com/p/B0VznwZlWJ5/?igshid=r5ez00upp4ef


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