November is National Care Partner Appreciation Month

This November, we celebrate a very important group of individuals within the rare neuroimmune disorders community: care partners. 

Whether you are a caregiver/care partner for someone with a rare neuroimmune disorder or know someone who is, join us this month for National Care Partner Appreciation Month as we recognize the power of a care partner’s love and support. 

One way to acknowledge care partners is through words of gratitude. There are many wonderful individuals who care for those in our community. Read the kind words some of our community members shared with us about their care partners below.

“To know her is to absolutely LOVE her! She is everyone’s friend. We were born one year apart on the same day.  She has always been very nurturing even as a young girl. She is always willing to jump in and make life as comfortable as she can make it.  I watched her take care of her mother years ago and thought to myself “Wow! If I ever get sick I’d love for her to take care of me.” Little did I know that I would be very sick and she immediately put herself out there to help me however and whenever I needed.  She is truly a blessing to me and my family. #Blessed”

– Chantal Banks about her friend, Lynnette

“My love and my beautiful caregiver showing me light where I thought only darkness existed.”

– Paul Garrett about his wife, Brenda

“It’s all the little things. I’m fortunate to be relatively self-sufficient but there are still so many tasks that my wife, Jane, has cheerfully taken over to keep our world humming. Her dedication and support have made this journey so much easier. She’s a true partner in good and not-so-good times.”

– Alan Finger about his wife, Jane

“My mother once told me that if she could have NMOSD instead of me, she’d take it in a heartbeat, despite knowing just how awful the illness can be. After understanding how easily I could go blind, my father said he needed to show me all the beautiful things he could. They were the guiding hand helping me to walk down the hospital’s children’s wing hallway when I lost strength, shoulders to cry on when I lost hope, and lighthouses when NMOSD obscured my sense of self.”

– Ireland Thomas about her parents

Being a caregiver can be both rewarding and exhausting. It’s critical that we acknowledge this and provide resources and support for caregivers so that they may also feel cared for. “Being Mia’s caregivers has been the hardest and most fulfilling job we have ever had. It has taught us how to prepare for the unexpected, how to listen to our bodies and most importantly, how to celebrate the little wins. Life caring and advocating for a child with a rare neuroimmune disease is scary and full of surprises. We have found it is so important to find the silver linings, celebrate the small things (like really celebrate! Make a cake and have a dance party. Top it off with an at home spa day), and always trust your instincts.” says SRNA Support Group Leader Megan Willis-Beikman and husband Matt.

Resources for Caregivers/Partners 

We are beyond grateful for the special people in the SRNA community who care for those with a rare neuroimmune disorder. You are seen, heard, and appreciated. We celebrate you today and every day. Happy National Care Partner Appreciation Month!