Ryan was a survivor from Day 1. He was like my little Duracell Battery. The doctor’s told us when he was born that he probably wouldn’t live to be a teenager. He survived numerous pneumonia’s, surgeries, and hospitalizations and always bounced back to his normal happy self.

Three years ago he was hospitalized for a month and I thought he would “bounce back” again. That was the beginning of the end. He was discharged to his Group Home with Palliative Care assistance. There was “hope” he would get better but we were told from the physicians that he would continue to aspirate and was now considered terminal. We did the paperwork with the APRN and the Physician to initiate the DNR/DNI. He had been on life support during that last hospitalization and we all decided he had suffered enough. No more pain and suffering for my sweet Ryan. It was the most difficult and sad decision to make for my child.

Ryan came home in April 2015 from that hospitalization. He could no longer stand or support his own weight. He was bedridden. My heart broke worrying if he understood what was happening to him and why he could no longer be his busy self. It was a constant struggle for me between the Hospice nurse and Group Home nurses. I insisted he wasn’t himself and had to fight just to give him Tylenol for comfort. One group home nurse even said I was making him anxious and writing him off cause I use to say that I worried he wouldn’t live to be 30?! She was in denial. Mind you I’d known my son for 29+ years and she knew him for just 7 years. Hospice discharged Ryan from Palliative Care because his symptoms hadn’t worsened. Ryan was sent to ER on September 5th and he was put on Hospice. The ER doctor promised me he would make sure Ryan would not suffer and I wouldn’t have to fight to keep him comfortable like before. He ordered Ativan and Morphine. It was heart wrenching watching my boy prepare to leave us. Four days later (two days before his 30th Birthday), he became a CdLs Angel.

It’s been three years since Ryan passed and I miss him with all my heart. I’ve been seeing a Grief Counselor. The Compassionate Friends (TCF) Support Group monthly meetings have helped me. Babysitting for our three new grandchildren has helped bring joy and fill the emptiness in my heart. I feel his presence around me at times and he likes to give me signs that he’s near me. I was blessed with Ryan and now picture him smiling, giggling, talking, and running around in Heaven with all the other CdLs Angels. I look forward to the day when I join him in Heaven and we have that “first conversation”. Till then, I try to concentrate on all the happy memories I had of my Ryan.