So I have sat and stared at a blank screen for what seems like weeks trying to come up with an update as to what is going on in our lives. I feel I haven’t been engaged lately, and I really do not have an explanation other than it was a really long summer.
Summertime has notoriously been difficult for a few reasons. Nathan thrives on a routine. So putting him in a house all day long where he doesn’t do anything other than listen to videos, or play with his toys brings on long bouts of boredom. I work from home and although we had aides that came in to help, Nathan talks non stop. I do not do well with noise (not good for a Batten Mom) I am pretty sure I heard Mom at least 1,000 times a day. He misses his peers, he misses engaging with people on a daily basis. I don’t think we can fully appreciate how social Nathan is and how much interaction with other people is vital for him.
In late April, Jay’s Dad was diagnosed with liver cancer. We had a planned cruise in late May and his Dad was joining us. Since it was so close, his Dad was going to wait to discuss treatment options upon our return. We were leaving on a Friday and on Wednesday his Dad decided not to join us as he just wasn’t feeling quite right. We were terribly sad that he wasn’t going to be joining us, but understood that it was probably for the best. We left for our cruise and on May 27th, Jay and I celebrated 19 years of marriage. The next day we received a call from Jay’s brother that his Dad had gone to the ER and the prognosis was not good. He was given a couple of days to a couple of weeks to live and sent home on Hospice care. The cruise then turned in to a race to make sure Jay got home to see and spend time with his Dad. We got off our cruise on June 1st and the family headed back to Colorado. I had another cruise planned with a girlfriend who had flown in to meet me. I left the same day on another cruise and worried for the next week that I would not get home in time. As soon as I got home, I joined Jay at his Dad’s house and had the honor of spending the weekend with him. Jay and his siblings never left their Dad’s side. Jay just kept telling me “I am going to love him all the way to Heaven”. There were so many tender moments between them, they were able to have conversations that will forever remain with Jay. He made his Dad promise that he would be the first one to greet Nathan when the time came. On Father’s Day, Jay came home that evening to spend some time with our family (he had not been home for a couple of weeks). In the early hours of June 17th, Jay’s Dad passed away peacefully in his sleep. On June 24th we had a memorial service and said our final goodbye to one of the most amazing men I had the pleasure to call my Father-in-law. I looked up to and respected him so much. He raised the incredible man I married.
In July we attended the annual Batten conference which thankfully was held here in Denver. It was wonderful to not have to get on a plane to attend. We were able to reconnect with old and new friends and had a nice time.
August brought the start of a new school year. Madison is now a Senior in High School and Nathan is a Sopmore. We are excited for the upcoming year and know that they are exactly where they need to be. So far, he is doing well adjusting back to school. We have made some medication changes that are always tricky, but feel we are in a pretty good spot right now. We are always cautious as things can change in an instant.
Thank you for continuing to care about our family.
1 thought on “Things around here”
I have the good fortune of being Nathan’s teacher at Chaparral High School. Nathan is an extraordinary young man who brings so much joy to so many. When I met Stacey and Jay I was so impressed with their strength, fortitude and courage in handling their sons rare disease. I recall my first meeting with Stacey asking me to just make special memories for Nathan. I took those words to heart and everyday, Nathan enters our school to make new and special memories. Everything about Nathan is truly so special. His smile, his laugh, his passion when he sings, the smile he brings to all the ladies and his many girlfriends. His heart is big and beautiful and he wears it on his sleeve. Madison, Nathan’s sister is such a bright light. She’s beautiful, sweet, kind and an endearing soul! I feel blessed and fortunate to know this family, be a part of Nathan’s life and share in this truly special journey with an incrediible family. Jay, Stacey and Madison… thank you for the gift of Nathan and entrusting me with him and his memories.