It has been extremely difficult for me to blog about Lottie. I have attempted so many times in this past year and it is not like I don’t have so much to say about such an incredible soul. It is simply that it is hard to put into words how grief and peace can coexist. I don’t know from experience what it must feel like to grieve a child that was healthy and ripped from the life of their parents. I cannot imagine. What I have to share, is a much different story. I can share the story of a Mom who knew that it was time to let go because she was given exactly the gift of peace she had prayed for so many years before.
Lottie was diagnosed with GAN at the age of 10. We were devastated after learning the extent of the power of this disease and the path of devastation and destruction it would take on it’s way to rob our child of everything that made life worth living. After learning what the end stages of GAN would bring with it and that it would rob Lottie not only of his health but of his dreams for his future, dreams of a first love, marriage, children, a career…I had a real frank talk with God, the universe, and whomever else was out there listening. I said I would accept this diagnosis and I would give Lottie the best life possible under the circumstances and I would do it day after day, tough decision after tough decision, loss after loss but when the time came and his quality of life started to diminish, when his days were spent in the hospital instead of at home and school, when he began to lose the ability to do the things that were most important to him and the bad days outnumbered the good…I needed wisdom, strength and most of all peace. I needed to know when it was time.
This day, one year ago…February 8th 2017, Lottie laid in a hospital bed in the ICU, hospitalized for the fourth time in months, second ICU stay hooked up to machines, facing yet another life changing surgery. As Lottie began to decline even more early that morning and even the medical interventions seemed to be failing him, a clarity came over me. I had the wisdom to know that it was time, the strength to make the decision and the peace that Lottie’s time here on this earth, this go around with these circumstances had come to an end and that all those years ago what I had asked for…had been given to me.
It was hard for the outside world to see, because through the bravery and strength, Lottie made it difficult…almost impossible for you to see his suffering but his body failed his spirit. Now his spirit lives on. It lives on in the lives he’s touched and the lessons he taught. I am so very grateful for my time with him here on Earth. I am grateful for the person I am because I loved him and he loved me. I am most grateful for the peace that came with Lottie taking his last breath surrounded by the people who he loved most in no pain with no suffering and most of all no fear. It was such a gift to him and us.
“If ever there comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.”
lilyinaparknlot 