December was crazy! Thank goodness for our friends and family!! I was a bit frozen and behind in “normal planning”. The Christmas tree stand broke, and turned into weeks of set up, take down and ultimately returning the fake tree and stand. I was so sore from shingles, with the help of the big boys next door – they embarked on Christmas tree set up for us and endured this terrible process! If I can figure out how to upload pictures – I’ll post the one of the tree disassembled in the back of our truck when I just couldn’t take it anymore!!! Friends pitched in so much and made this season more manageable – they helped decorate the house, assemble gifts, wrap gifts and just keep us moving forward. So having ALS in our family, has required us to let go of how we have done things in the past. When you can’t do what you’ve always done, you break into a new space and sometimes that discomfort is just what you need to be comfortable. We enjoyed having Christmas Eve with Brad’s family and Christmas Day at home was pretty fantastic with ours!!
We completed cycle #3 of treatment before Christmas! A chin rest was fitted for Brad. Its a neck brace he can wear to support his chin. It saves on the energy capacity in his neck, its weak and can rest on his chest at the end of a day. This is great to wear when he’s standing or hanging out. Not so great for eating or sitting!!
UBER! We are using a lot of UBER and so thankful its available in our area. Brad gave up driving, he did not feel it was safe to operate a car with weak arms and neck anymore. We are a one car family now and I have the best “Navigator” in the business!! The kids love to take UBER with dad and go to dinner or into town! Car pooling is saving us for the kids activities and allowing them to continue enjoying activities that serve as outlets. We all need an outlet!
We enjoyed New Year’s away in the Poconos with Brint, Nikki and their kids. It was fun for all, it would be hard work not too enjoy the beautiful setting and great activities for the family. Its the time together that brings the most joy – there are quite a few funny stories throughout our weekend away and we love the laughs! It has also brought awareness to how different traveling is for us, we now know we need extra hands on deck. Although we are staying positive and hopeful, it with extreme passion (and a few choice words) we say good riddance 2017.