I have great news. Tara is planning to come to the fundraiser on Saturday! Please pray that she gets some rest over the next 48 hours and that everything goes as planned. I know she and her family could use an outing with loving family and friends and a break away from the day to day challenges that come with ALS.
It's been a whirlwind the past few weeks. Cheryl put it best when she said "everything we need, we need yesterday". As an OT with almost 30 years of experience, I am overwhelmed with how difficult it is to navigate the health care system with a disease that is taking over faster than we had expected. Most things take weeks to order, aren't covered by insurance and often arrive too late, or don't meet the need when they do arrive. I am saddened that this is happening to my sweet niece, Tara and at the same time am so proud of Tara, Cheryl, Andy and Lisa as they have united as a family to do whatever is necessary to make it through each day.
The most recent goals for Tara are to modify her home and get the equipment necessary for her to get in and out of bed and into the shower safely. Last week, they tore out a wall in Tara's new home to allow easier access to the bathroom. There is a lot more work to be done and the support the family has received through the meal train and such has been amazing. Andy initially frowned upon the meal train saying "i can cook for them" but very quickly he realized that his day are beyond full and beyond busy and meal prep is the last thing he would have time for.
The fundraiser is coming at the perfect time. The equipment and modifications that are needed are starting to add up and we're finding that less and less is covered by insurance.
Thank you for following Tara on her page and for the love and support that you have shown to our family. Looking forward to seeing everyone this weekend.