You never know the plan. You never know what’s going to happen. We are not even promised tomorrow. I just try to focus on one day at a time.
Morgan Wallen
I started this blog because I was struggling enough to recognize that I needed a place to be honest with my reflections and ongoing life as wife, caregiver, and mother to our family, who lives with a neurodegenerative disease that is not only relatively unknown but also unfortunately unrecognized and misunderstood by the medical community.
My initial intention was to put our story out into the cyber universe with complete anonymity since it allowed me to retain my husband's privacy and while having a therapeutic outlet and the "me time'" that has been highly encouraged by my friends, care providers and therapists, and fellow caregivers.
But before I knew it, I felt drawn to be more open to some of my close friends for their outside perspective, who then greatly impacted my decision to allow others direct access to the blog and ideally more insight to our the truth of our life and daily challenges.
Whether it's through text messages from friends and family, conversations with colleagues at work, mom friends that I've met through my Kindergarten girl, or my intuitive mind trying to reflect on how, I am well aware that many people think of us, prayer for us, and also wonder, What is life really like for you and your family?
Just like everyone else, there are good days and bad days. Some hold many moments filled with smiles, laughter, jokes, and happiness, while others cause great fear, stress, anxiety, and sadness.
The honest truth is that most times I don't even know how to answer that question, which is something that probably only other FTD families or chronic caregivers can understand.
It depends on the day, or really the moment.
This disease can be challenging with symptoms ranging from changes in cognition, speech and language, movement, and physical pain and debilitations, but also unpredictable as my husband can appear lucid and his charismatic self but then have a vast change in his personality and behavior, fairly unrecognizable to those of us who have known him as a loving friend, son, brother, or husband.
But despite all of the changes that have occurred since this journey appeared to begin almost eight years ago, we've learned to follow our hearts and fight for him as the wonderful man that he has always been and the friend, son, brother, uncle, father, and husband that we love.
We've learned to live one day at a time, or maybe even more accurately one moment at a time.
Most of our days begin with a cup of coffee together and end with our universally enjoyed "family time", with lots of cuddles, drinks, snacks and a bone covered in peanut butter (for our dog, of course), and some form of TV or ipad entertainment before bedtime. All of the inbetween really does depend on the day, but in addition to work and school, I think it's fair to say that we do our best to make sure that everyone is as happy and cared for as they can be.
Some days are better than others, like today when our entire Chicago-based family (dog included) enjoyed time at the park and simply embraced being together, doing our best to forget about any of the unknowns ahead and focused on the three beautiful children playing in front of us as well as the dog that really does love every member of our family, as well as anyone else she meets.
Today was a good day for our family, and we pray for many, many more.