Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support
A fellow rare caregiver: “I am struggling a lot with feelings of isolation. The sad truth is that I shared my heart with those closest to me and just came away feeling even more alone. They had the best of intentions but nobody yet is supporting me in the way I need. Should I just stop looking for help? Maybe I would be better off that way?”
Becky’s response: I want to start by saying that when the unthinkable happens and your whole world feels turned upside down, it is totally natural to need someone by your side. When what you see up ahead feels way too enormous and scary to manage by yourself, it can leave you feeling lonely and vulnerable. There can be a lot of trial and error involved before you finally find the one who finally hears you and tells you those words you long to hear.
It is okay to feel it, ALL of it, to dive right into the good, the bad, and the ugly of what you are going through. Accept with love for yourself that it is all a natural part of the process on your journey. To healing, growth, and acceptance.
“When we decide at our very weakest points to be strong, to keep putting our feet on the floor every morning, and stand tall to face another day, we become the hero of our story.”
I think the key word here is acceptance as you cannot process what you don't accept as part of your story. I had to accept the heavy, painful, tearful weight of guilt I carried as a result of passing on a rare syndrome to two of my three beautiful children. Through acceptance, I could become the hero of my own story. Compassionate insights from a genetics counselor were extremely helpful for me. She gave me permission to feel and accept the dark depths of my raw emotions, my guilt, my trauma; and, with acceptance was healing, from which I rose with an inner strength that I never knew existed. It was always laying dormant within me, I had just never had life shake me up enough to need to use it. When we decide at our very weakest points to be strong, to keep putting our feet on the floor every morning, and stand tall to face another day, we become the hero of our story. That is a gift we can only give ourselves and our rare and wonderful children who need us most.
The most important people you can meet in this life are not the ones who make it all feel better in the moment. Instead, the ones that serve as a powerful reminder that you already have it within you to be who both you and your family need to thrive. By embracing and living the real truth about yourself and fully exploring all you can become, you will see that you are the constant companion you needed most. Not only that, you will find those genuine friendships and connections that you longed for. You will find people that are able to relate and connect to the real you and meet you where you are at. You and your family are never completely alone on your rare journey as long as you truly have your own love and support. Not only that, the wonderful, memorable one of a kind, diamonds in the dirt, rare partners who soon teach you that you are so much more capable than the person you once were.
Your tribe is out there and only the raw truth of who you are will draw them to you. Dare to speak your truth and share your story, as in doing so lonely isolation will be replaced with authentic connection and you can be the voice reminding someone else in their darkest times, they too are never alone.
Becky shares her experience living with and parenting kids with Koolen-de Vries Syndrome. Click here to access the full article!
