It is hard to explain in words how Bert and I feel about all the people who have showed us support. ALS is scary, Bert describes it mostly as frustrating. He says it is frustrating when your mind works perfectly fine and it tells your body to do something like it always has and your body won't do it. You know it will never do it again the way your mind tells it to and eventually you know it will not do it at all. For me it feels like continual loss which is followed by panic when I see Bert struggle. It is difficult mostly because life goes on, we still need to take the kids to school, go to work, take out the trash and fulfill all the responsibilities of life. ALS is slow and yet fast, what is beginning to not work takes awhile but also makes you feel like the clock is ticking. For our family it is what we think about all the time, even when we don't want to think about it we think about it. All the little things you take for granted are realized, walking up and down stairs, taking out the trash, writing with a pen, parking and walking into a store, going out to get the mail from the mailbox...all the little daily things need to be thought about in advance. Everyone else is not thinking about ALS all the time so it is hard to concentrate at work and at home and I am sure for my children at school and sports at times. What eases this fear or frustration, however; is support from other people.
The support that we have received from our friends, family, and really complete strangers is amazing. Thank you doesn't seem like enough. Our family loves us unconditionally and is here for us. Our parents, sisters, and brother in laws have been here, they have taken care of our children, taken care of us, cooked, cleaned, mowed, shoveled, vacuumed (for three hours:), moved furniture, put up railings, listened, cried, and believed for us. We love them very much. Aunts, Uncles, Cousins, and Grandparents have sent cards of encouragement inspirational DVDs, ipods with music and a bible with a personal touch. Our little nieces and nephews have loved us and entertained us, helped distract us and made us smile. Our friends and co workers have listened, cried, covered for us at work, helped on the soccer field, picked up our kids for practices, put together the Freeze Out Friendly Fundraiser, cooked, volunteered, let us come to their house for vacation, sent cards of encouragement, drove from a far with bike trainers and workout clothes to work out with Bert in our basement, stretched, balanced and meditated at karate, said prayers, and generally just supported us and we are beyond grateful. Friends, teachers, and coaches have supported our children. Strangers and people we didn't know well have put together fundraisers and donated a really awesome bike trainer, helped Bert out of the car at rest stops and offered support and encouragement. To all these people we are forever grateful.
ALS is scary and frustrating, but with all the support we have we feel like it has met it's match. We feel empowered, hopeful, full of belief that things will be ok no matter what happens. The generosity shown by all the people who support and love us make ALS seem weak. Bert prepares his soccer team Panther Claws with a chant, they say it before taking the field, I think it sums up the support we feel. One player leads and the team follows.
I believe. We believe.
I support. We support.
I trust. We trust.
He explained to the team that Believe means going through life you need to believe that you can do anything you set your mind to. There is always something to believe in that can push you forward to succeed and overcome anything. Support means in life it is important to know that you have people in your life that will help and be there for you. And you need to support others in times of challenge. Trust means others need to have trust in you. They can count on you anytime.
Grateful is how we feel, and the team we have behind us makes us feel like we can overcome all obstacles.