Julie's race has come and gone, but she has one last inspiring and touching story to tell - and it's amazing, as always! On behalf of Outdoor Mindset, I want to thank Julie for sharing her story with us and helping to spread to good OM word. It's stories and attitudes like this that really make us who we are as an organization. That being said, if anyone else out wants to share their story with us, please contact me at firstname.lastname@example.org. Thanks again Julie - and keep running!
It was 7 years ago this month that my Mom, Robin, passed away from ALS - Lou Gehrig's Disease. Yes, my race is over, the fat lady sang and it was loud and clear. But (one last but) I hope you can allow me to invade your inbox one last time and reflect a little. Personally, I gained a tremendous amount from the half marathon race, the Outdoor Mindset experience, the entire adventure. It allowed me to shout from the roof tops that when you have a support network and stick together you can make a difference in the quality of someone's life and give them hope and a smile. I supported others and was supported by others both during my Mom's fight and during this run. That's what it's all about. ALS is not a pretty sight and it never will be. We had other plans but then ALS reared it's ugly head and our family had no choice but to deal with it. The choice we did have was to support each other, deal with it together, dig deep and be real. It wasn't pretty but without that support it would have been unbearable. This race and my connection with Outdoor Mindset allowed me to sum that up, honor my Mom and put a dent in the funding needs for ALS research with the hopes of finding a cure so collectively we are one step closer to ridding humanity of the unbearable that is ALS.
|Julie and her 3-Squeezing Mom, Robin|
Ever since I was a little girl with long flowing blond curls in pigtales, I remember my mom usually hold my hand if we were out and about and would periodically squeeze it three times. This meant: I. Love. You. This was our family thing. When she tucked me in at night just before I fell asleep she would squeeze my hand three times ever so slightly so not to wake me but so I knew just before dreamland that she loved me. If I was sick at home with some flu bug she would do the same. I think I would've died a thousand deaths if my Mom started telling me in the back to school section of the shoe store that she loved me just because she thought I was cute trying on new saddle shoes. It was our simple way of letting each other know we loved each other when it was likely inappropriate to speak it. So, three squeezes did the trick. I just sort of thought everyone did this until I got older and realized this was a Morhouse thing. My older sister and I would do it to each other if she took me to the mall shopping when I was a kid and we were together hanging as sisters. She was 10 years older and cool during those years when my mom was no longer cool in my eyes. You know those girl teen years. I would do this with my younger brother although he would always giggle. We still do this today. I carry it on with my kids. When my husband does it to me, it no doubt makes me teary, every time. It's her living on through us, in my kids whom she never got to meet, in my family. 3 squeezes - unconditional support and love.
As she declined her voice was affected until it was quite hard to understand what she was trying to communicate. For some reason I had this gift, this ability to look into her eyes and just know what she needed after she mumbled a few illegible words. I don't know why but I had this ability to understand her for the most part. It got harder as the months went on but usually we'd get there. It was a gift and it was all we had. Everyone had their role. This was mine. Sometimes she needed dad, sometimes she had to pee, sometimes she just wanted some gooey melted chocolate to suck on.
When Mom was on her last month of life she was under heavy doses of painkillers. She could only use her eyes to communicate in the form of blinking. None of the other muscles in her entire body worked, just those eyelids. We were lying in bed one morning waiting for her doctor to come to the house and adjust her painkillers. It was a beautiful morning, the sun was streaming in the windows that were just above her bed, the clouds parting, a slight breeze. We were just existing together, heads touching and holding hands waiting. Then she gave me three squeezes. They were ever so slight and a magical gift. It was all we had. I gave her three squeezes back and then the doctor came. Sometimes words aren't needed – thankfully.
What I've learned in life is that there are hard times, there are wonderful times, there is life. We plan and plan and inevitably life takes over and creates a new situation we haven't planned for. Those plans are not always welcome but we have no choice but to deal with it. The choice we do have is how to handle this new deck of cards we were just dealt. Turning that negative into something else, perhaps hope and creating positive energy feels good, almost addicting. This is not necessarily easy. This mindset is what lead me to Outdoor Mindset. Their one and only goal is to help and give support to those living with a neurological challenge. Living with any disorder is not what we plan for in life. When “life” happens, adapting to a new personal situation or a new support role for a friend or family member with a neurological disorder is not what we plan for. What we do have is a choice and ability to be strong and reach out for help or provide help, to provide support, to create laughter and love, to be there. Can you imagine living with a neurological disorder and not having that support? Outdoor Mindset does exactly this. They want to be your friend, but only if you're affected by a neurological challenge – that's a pretty great friend. They are that someone that's there to lift you up, help you get outside and feel the elements in whatever way you are ready for them; planting flowers, going for a walk, hiking or biking with the equipment that allows you to get outside, or a talk in an outdoor coffee shop, they will be there to support you, three squeezes.
Maybe I can't give Mom three squeezes now but I can 1) help combat this illness, 2)help others living with other neurological disorders live the best life they can and 3) honor my Mom while dedicating my time to Outdoor Mindset.
So, I continue running and helping.
Thanks for reading my blog series. Thanks for being on this journey with me. Thanks for your care and support while Remembering Robin. Thank you.