It seems crazy to think that February is less than two weeks away; we really do need to get better about these posts and updating them more frequently. I wish I could say that this journey has been easy and writing these updates hopeful, but they just aren’t. ALS sucks - plain and simple. Watching Ben get weaker each day has been heart wrenching for the boys and me. We have good days and bad days, but try to keep things as normal as we can.
2014 is going to be a year for making memories. We’ve already made some plans to:
1. Go to a Bulls game
2. Return to Athens, GA for the DBT Homecoming
3. See the Avett Brothers in concert
4. See DBT with a large group at the Pageant in St. Louis
5. See Jersey Boys
Hopefully we don’t wear Ben out, but doing things and having things to look forward to keep us going. We treasure the little things. Family dinners, movie nights, games with friends. Everything seems to have a little more meaning these days.
I have to send out a huge shout out to the Auburn Junior High Student Council and Denise Blaney. They planned several fundraisers during the first semester, including selling suckers and a movie day and dodge ball tournament the day before Christmas break. They presented me with a $1300.00 check last week. I am overwhelmed by the kindness and compassion of the students and staff at AJH.
All of the money that has been donated to us has been put into a fund that helps pay for home health care for Ben. Terri comes every day to help bathe Ben, get him dressed, and keep him out of trouble. She also helps me by picking up around the house and general house cleaning. She is a lifesaver and definitely gives both the boys and me peace of mind that Ben isn’t alone all day while we are at school. Then someone comes to feed Ben lunch - while his appetite has diminished lately he still really enjoys the company. Ben’s mom and dad alternate days in the afternoon. They have to put up with his strange music and movies. I think today’s choice is a documentary in Chinese.
All in all, we are ok. I’m not going to paint a pretty picture that things are great because they aren’t. This is hard and sad and painful to go through. So take a moment to sit and be thankful today. Ben can’t lift his head, but he can rest it on my shoulder. Live the Open Ended Life!
Hug your kids-
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