Thursday, November 19, 2009

Hershey Visit 11/18/09

"Hershey day today!
I never look forward to Hershey day....after I get to Hershey and see the support we receive, than I know it is the best for me to go to understand our journey with ALS. The past 3 months our journey has been very hard....We had to get adjusted to so many changes and are still dealing with them. Gordie's breathing went from 93 to 58 in late August. He had to get a breathing machine, feeding tube surgery and other changes. In 3 months he went from eating his favorite Tuesday night tacos to having formula every meal. Gordie eats very little solids anymore. Our good news today was that breathing went up to 65...what a relief. When it gets under 50 than he will need to be on oxygen. His strength in legs and arms tested about the same that it was the last time, changes in his hands and swallowing. He is going to get a speaking device in the next 6 months.

Every time we go to Hershey they ask him about his quality of life, so they can see how his spirits are. The past 3 months have been very hard for Gordie, he said in a soft voice....some days he finds it hard to find a purpose and meaning for his life. After he was done talking we were all in tears...he is so amazing, he can take things and bless so many people. At the end of the visit, his comment was that I am on the other side of it now and doing better. Wow! how he deals with ALS is so amazing and he touches so many lives, when we go to Hershey he lifts everyone spirits that we are in touch with. I love and admire my husband!

A bright thing in October was Chad & Noelle's beautiful wedding, he had a great day. Thank you Clint & Tanya and Chad & Noelle for our precious family time together, this makes our day when you come home.

Thank you Christine (caregiver) for coming with us today....

I love and appreciate our friends & family

I just want to add, this journey with ALS is not for the faint of heart. When your body slowly begins to rob you the ability to do less and less for yourself, it can make you wonder what is my meaning and purpose for existing. Sometimes I think It would be easier to just give up fighting, but then I am reminded that God is sovereign and even though I have this disease, he has a plan for what he wants to accomplish in my life. Yes, at times I struggle to find purpose and meaning for my life, but I am confident there is. He gives all of us purpose. It is when I live beyond myself, then that is where I find a purpose and meaning for my life. My life isn't always about me. It's more about what I can do for him, forgetting about myself and allowing him to be glorified through me.

Since ALS, I can say God has blessed me in so many ways. God has given me a wonderful family, supportive friends, a church family that loves and support us, great caregivers that help me every day, and so much more. Through it all, I can say God is good! This Thanksgiving season I have so much to be thankful for.
Thank you all for your prayers and support!

1 comment:

Anonymous said...

Gordie and Emy, you are both an incredible inspiration to us. Your courage to face the future and to continue to put your trust in God is amazing. We love you guys and are praying for you. Love, Vern