Hi, everyone.
It has been a busy two months! ALS and FTD are becoming more and more difficult, yet we have had some wonderful experiences and created many lovely memories.
In my most recent journal entry, I wrote about the solar eclipse with 100% totality and how delightful that was. Well, a few weeks later, we had an amazing view of the Aurora Borealis – yes, here in Ohio! My daughter captured a spectacular photo of the Northern Lights over Lake Erie. Phil shared with me that seeing the Aurora Borealis in his lifetime was an item on his bucket list, albeit a longshot; he said that God showed him such favor by letting him see this beautiful show right in our driveway. We both cried happy tears.
Phil and I had opportunity to travel to Sacramento, California and to Smyrna, Tennessee. Flying to Sacramento was quite the turbulent ride, most literally. We had to remain seated from Chicago to Sacramento; it was a bit intense, especially since we had an extremely long layover in Chicago. In spite of travel woes, we were both glad we could go and be with our niece and her in-laws as we celebrated the life of her late husband. Believe it or not, Phil sang his verse of “How Great Thou Art” to bring comfort to the family during the memorial service (I wish I had recorded him singing; it was heartwarming). Our late nephew’s family has such a gift of hospitality even in the most difficult circumstances. I enjoyed taking a quick jaunt to “Old Sac” with one of the aunts; she was so much fun.
Traveling by automobile to Tennessee seemed more natural for us than flying. The anticipation of seeing our son and his sweet family kept us moving. Upon arriving to their home, the younger of two grandsons ran up to both Phil and me with such a big hug. I had the privilege of taking both grandsons to the park during our visit. Phil slept a lot that week, but every time he was in their home, the grandkids loved on him with hugs and words; Phil’s favorite was “I love you Grandpa.” Holding our newest grandchild took our breath away; she’s beautiful and perfectly formed – tiny yet mighty.
While I try to keep readers informed with a positive tenor throughout, I would be remiss if I didn’t share some of the things that stung too. Phil said to us as he held our sweet new granddaughter that this was his first and last time to hold her. We all knew that to be true, but he spoke it out loud. I believe it’s okay to be real and have a clear understanding of what’s happening. None of us countered Phil’s statement with platitudes; we allowed the moment to be its own reality and joy. Yes, I said “joy” because there is joy in processing together. Phil and I are not alone. This is hard, but we have a wonderful village helping us.
Another item on Phil’s bucket list was a visit to COSI in Columbus, Ohio. We were able to go there on our way home from Tennessee, and we rented a motorized scooter. FTD has affected Phil’s coordination, so he had troubles “driving.” We were quite the spectacle with me operating the scooter while walking alongside it. We managed okay. Phil enjoyed the dinosaur section and some of the inventor displays. We are thankful for the provision given to us from family to make this bucket list item a reality.
For Mothers’ Day, my children hired a piano guy to tune and make repairs to my piano. The piano guy had to service the piano three times to complete the tuning and repairs. For those of you who enjoy music and want to tickle the ivories, I invite you to visit and give it a whirl. I’m so thankful; it looks beautiful and sounds amazing!
About in-home health care: it is not an ongoing service. In light of this, when we took all the trips, we determined it to be good timing to suspend their services. Phil still does exercises, not perfectly nor consistently, but it’s still helping him. In-home health care therapy will resume after his powered/motorized wheel chair arrives hopefully later this month. We will need help with that most certainly.
This is a long entry, but bear with me. When my FMLA ran out, I was given the choice to return to work in the same capacity as before I left or to resign. With much disappointment and yet hope, I made the decision to let the job go. The two and a half years with my former employer have been a pleasure and a season when I learned that I can teach virtually as well as traditionally. While I miss my students and colleagues, I will remain grateful in all things.
Again, while I do try to keep a cheery attitude, this is not easy. We encounter new challenges each day. Phil is tired all the time; whether we have a full schedule or a chillax day, he is constantly fatigued and worn out. The FTD brings difficulties too. Not only is coordination of operating a scooter nearly impossible, Phil no longer enjoys reading Wikipedia articles because it’s growing harder for him to understand what is written. Due to the FTD, he is experiencing some confusion with nuances regarding social media.
We are so thankful for our friends and are especially grateful to those of you who continue to help us. Many have stayed with Phil so I can run errands and keep appointments of my own. I would appreciate more people intentionally coming to spend time with Phil. Please reach out and schedule with me. While he doesn’t speak much during these visits, he truly appreciates the company and kindness extended to him.
Thank you again for living life with us through Phil’s journey.
We love you.
