Oh how my heart longs for this. We went through so much together, i was his safe place, and he slept on me everywhere we were. He was such a snuggle bug!!❤️💔 how could he have been so perfect on the outside and his body rotten on the inside..#myheartwillneverbethesame #onedayatatime I met an an another amazing mamma in NY who wrote a book about her sons fight with Neurblastoma and I could not have put this better.. The book is on amazon and is called lessons from my sons tattoo. I cried almost the whole book reading as I know all to well all she talks about, the fear, anxiety, holding out for some good news and not getting it, the doctors, the angel nurses, the life in NY away from your family and living at the ronald mcdonald house, but also the love and support they recieved and the courage they had to have!! I am so so blessed by your words @carynfranca Thank you for takimg the time to put your heart on paper!!❤️she was one of the original members of the band of parents who started as just a bunch of parents wanting better treatment for their babies and have now funded several new trials mainly at sloan kettering. I am honored to be a small part of what they do.. this is an excerpt from her book which perfectly
up my life right now she says "I had a drawn a line emotionally. On one side was the day to day life that we lived. On the other side there was a place i had come to name the dwelling place. It was a place i could fall into head first and remain for hours-with energy drained and pools of tears overflowing from eyes. Images of my beautiful boy in his last two weeks haunted me. Picking up the pieces, Moving on, and just loving life after loosing a child is a full time job. Its like an inner dance done between the noise and bustle of what appears to be a normal life. No one knows the hidden turmoil that stirs like a tornado in your stomach. No one sees how far you push to not fall into the dwelling place-to remain out in the functioning world."