Saturday, October 19, 2019
He’s been working hard on several projects and has required a lot of back and forth with emails, which as of late take more and more time and energy to compose. But with one good typing finger doing the work, he perseveres. I marvel as I see him sitting in his wheelchair hooked up to his feed, continuing to be productive in meeting the needs of others. I say that he does what he does not for “the praise or glory”...that is for God. But because God’s given him, after almost 12 years, the strength to do what he does every day.
John’s not alone. We’ve seen some of the strongest advocates for ALS be those that are affected by the very same disease. Our Foundation is a means to fill a need we saw many years ago when we planted the seed of Hope-JG. When a thought crosses your mind and is buried in your heart, you know you need to nurture it and see where it will take you.
It’s been 5+ years since we decided that we knew all too well the challenges of living with ALS and there must have been a better way to help those in need. It’s not an easy task always...heartbreaking most of the time to hear stories of the needs. Basic needs that are no longer “basic”. Accessibility in and out of the home. Accessibility to a bathroom, nutritious food once a feeding tube is placed. The ability to still communicate once your speaking voice is gone or the ability for a family to have a way to be transported and included in a family reunion. Once bound to a wheelchair these basics are no longer “basic”. They are challenges that need to be met with dignity and love from knowing hearts.
Yes, we’re a Foundation with all the administrative, legal and financial stuff that goes with running a foundation. Thank God for our amazing Board. Ultimately we want to be the ALS family member that reaches out and comes along side a pALS facing these “mountains” and move those mountains.
I watched yesterday as John emailed with a company we collaborate with that he pursued until they caught the vision of how they could help. And later in the day I helped him Skype with another person we have worked with and now have a valued friendship with after seeing her speak on TedTalks. (She is creating “voices for those without voices”.) Then back to his email with one finger to coordinate a upcoming accessibility project for a pALS.
And that was just yesterday. I share all this as his proud wife, as I watched this morning a flood of ‘Likes’ to our foundation page (https://www.facebook.com/Hjgorg/). (Thank you!) This is never about us...we can’t do this without all your support. This is also about what you can accomplish when a seed is buried in your heart, no matter what your circumstances are. Able bodied or challenged, pursue that seed until it grows and bears fruit.
When John was diagnosed 12 years ago, I knew that wasn’t the end of our story. I knew it was an open door to walk through to see what God had in the other side for us. We refused to accept his life was over before its time. God is faithful if we trust Him and give it all to Him. It’s been quite an experience and we’ve grown personally from it. We’ve walked along side those God has given us to help, sharing their needs and their hope...in what may appear to be a hopeless situation, there’s always hope!
Unfortunately when you are diagnosed with a disease like ALS and you begin to have needs, that’s when some of the hardest battles start. The needs are great and Insurance doesn’t always meet such profound needs.
So as he wakes up and our day starts with “getting him going”, he’s ready to get back at it. You may wonder...why? Because once you know what this life with ALS is and you have the ability to do something, you must do your part to make this horrible disease easier. We are the tiniest cog in a huge wheel trying to change the disease. We have fellow warriors fighting for a cure, to change laws to try drugs that have the potential to reverse this disease. Others raising awareness and funds to support a cure. Foundations run by family members like ours trying to fight back when ALS walks in and tries to steal your life. It’s all needed. It all helps. Every bucket of ice dumped, every golf scramble attended, every fundraiser donated to could be the one that holds the cure or provides help that’s desperately needed.
The one thing we’ve seen every time we’ve met a new patient is “gratitude” to those they have never met. If you’ve donated or helped in any way, thank you! While John and I may be the faces of Hope-JG, as many others like us are working to change ALS are the faces of ALS, it’s your generous hearts that have made everything possible.
Thank you and God bless you. Today’s another day to change ALS, one project and one person at a time ❤️⚓️ There’s always hope!