Timmy's First Protest

 Two weeks ago we learned through an email that the clinical protocols that Timmy has been enrolled in and following, the very treatments that has allowed him to regain his health and have moved him into remission, has been summarily shuddered by the republican administration.  Neither the researchers, his doctors, nor his parents were provided time or resources to prepare for this sudden change. Now my child has been thrown into medical peril so that Presidents Musk and Trump can appease the base.  I am devastated and disgusted that my own country would discard my child so callously.  

Timmy, upset about the sudden changes and fearful of what we really don't know, has been wanting action. I can't change President Musk and Trump's agenda, but I can force our local representative's staff to look into my child's eyes and explain why he is not worth funding. How does a man who touts himself to be pro-life, who poses with priests and nuns at every opportunity, reconcile canceling life-saving medical treatment for children?  In reality, and like the majority of MAGA republicans, they are actually pro-procreation, not pro-life. 

Today we are heading to the local offices for our representative and one of our senators. Do I expect it to change anything? Absolutely not. But Timmy deserves to see me fighting for him. Silence is normalizing the chaos of this administration. Ripping research away from sick kids is not normal. It just isn't. So today Timmy will attend his very first protest, and I couldn't be more proud. 

Travels

 The past few days have been busy and stressful. Thankfully my Mom was able to watch Timmy for us, allowing Scott and I to focus on the issues without distraction. Yesterday morning we woke up, headed to PA to meet my Mom and to retrieve Timmy (and Friend.) We have spent a lot of hours in the car over the past three days, but it is nice to be back home. 

Speaking of home, Robby is coming home on Saturday for Spring Break. It is so hard to believe that he is already at the midpoint. He hasn't been coming home as much this semester, which is a good thing for him because it means he is settling in and making friends. Of course, it also means that we don't get to see him as much.

Today will be spent cleaning the house. After being sick for a few days and then traveling for the funeral, it is getting ahead of us.

Next Steps

 My Aunt Judy, my Dad's beloved older sister, passed away peacefully a few weeks ago. Judy has been sick for the majority of my life and, although she was the source of adoration for my father, we were never close. My Dad kept his family at length from his children. I always believed that this was because he was we embarrassed him. Whenever we made the pilgrimage back to his childhood home, I always felt insecure, inadequate and not good enough. Because we were kept at a distance, any familial relationships with his relatives became nonexistent upon his death. 

Unfortunately, and despite my best efforts, this included my Aunt Judy. Scores of phone calls went unanswered after my Dad's death. It became a bit of a joke that I would hear from Aunt Judy when she was drunk enough to remember that we existed and that she liked us. Through her slurred filled words, I would hear her tell me about how much she misses my Dad.  This happened about every 18 months. 

Because I was not able to develop or maintain a relationship with my Aunt Judy, I was unaware of the cognitive decline of her partner. Out of respect for her privacy I won't go into details, but J is no longer capable of living an independent life. This shocked my sister and I who feel quasi responsible for taking care of our Aunt J. Although not a relative by blood, she has been in our lives since our birth.

So, how do you help somebody who desperately needs supports? While her friends are helpful, they are struggling with their own health issues and living life in their 80s.  Immediately after my Dad's death, during one of Judy's alcohol fueled calls, they asked me to assume power of attorney should something happen to one or both of them. I agreed, but the only information I was sent were funeral arrangements (which ironically were not followed because of Aunt J).

What am I supposed to do now? Thank goodness Scott is retired and we are able to take trips to Pittsburgh, because this is shaping up to be a real mess. But it is a mess I feel beholden to assume because of my Dad's love for his sister.