We wanted to tell you a little about our older son Joseph and why he is now with our family in a heavenly way. Joseph, our oldest son, was a gift from heaven when he was born on Wednesday, November 27, 2002, at 4:51 p.m. He was born the day before Thanksgiving and we called him our early turkey. We were so thankful for him and still are today. Joseph always loved his family and always said that it was great to be a part of this family and that he was so thankful that mom and dad got married so that he and his younger brother could be born. Now with our two gifts from heaven our lives were complete and full of love.
Joseph playing “Soaring Song” on piano
New Year’s Day
I faithfully kept their baby books full of endless pictures to and beyond their first year of life, writing down special things they both would say and do, and still do so even today. Those precious notes are called their Memory Books and each would say, “Mom make sure you write this down so we can remember it.” I wrote down what they asked me to and so much more and am so grateful that I did. Each note in their memory book opens a chapter in my mind of memories that are precious and much of those special things they said are captured in those books and not in a photo or video.
Joseph said so many things after looking back in his Memory Book about Jesus since he was 6 years old as well as after he was diagnosed with a brain disease on January 24, 2014. The day of his diagnosis brought me and my husband to our knees and was the worst news any parent could hear.
Late summer and fall of 2012 Joseph was dizzy at times, said he had a hard time hearing in class, and we noticed his right eye was at times off center. From late summer to late fall 2012 we had his hearing checked, auditory processing testing done, speech and language testing done, cognitive testing done, and an eye examination done. His hearing was normal, his auditory processing skills reduced, speech and language skills reduced, and cognitive skills reduced and the eye specialist suggested surgery.
We received a second opinion from a behavioral optometrist who after intake paperwork and an examination showed that light therapy and eye training could improve his vision. I desperately sought out a local pediatric neurologist that was highly recommended and finally got an appointment in October. All paperwork along with our own concerns and the school’s concerns were sent.
I received a call from that neurologist’s office and I was told by their office that “the neurologist was not going to see Joseph because it sounded like his issues were behavioral” but I knew something was wrong and I continued to seek another pediatric neurologist who gave us an appointment, listened to our concerns, and scheduled an MRI for the earliest date possible at any location which was January 24, 2013. On this date our sweet Joseph was diagnosed with a terminal brain disease.
We saw a specialist in Boston, conferred with another specialist in Minnesota, as well as other specialists in the United States and France. After sending Joseph’s paperwork, blood work, and MRI report we were told that this particular disease was not treatable at the stage it was found and could expect 6 to 12 months more of Joseph’s beautiful life.
We always said that we would always do the best we could as a family and that’s what we did. We loved each other, stayed as happy as we could, and made the days count instead of counting the days we had left. Joseph was so brave and his brother truly was the best brother ever and was even given a framed official Best Brother Certificate from our Town for his endless acts of love, loyalty, bravery and courage for Joseph. We went on our Make A Wish trip to Give Kids the World Village in Kissimmee, Florida and had the best week of our lives. With the help of close family, close friends, Father Anthony Ligato and our dedicated church family we were hugged in support, help, and love to make our days filled with love and joy. We cannot say thank you enough to Dr. Porter at the Journey’s Program with Albany Medical Center Hospital, Dr. Wayne Hogan, and our core team with Hospice, all who walked with us daily to move heaven and earth to ensure that Joseph had the best care filled with love.
Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom belongs to such as these.” Matthew 19:14