I read this article this morning and it brought back so many memories!  At first blush, they were thoughts of anger for the people that would treat my sweet Alex with such contempt.  He kept his pain, sadness and weaknesses all rolled in a ball inside himself.  He wanted to be ‘normal’ to the outside world.  For that he was rewarded with comments like, “You don’t look sick to me!”  “What is your handicap?”  “I hope you die from cancer!”  And the list goes on.  I have written on this subject before I know, but I thought it was worth bringing it up once again to remind people that we do not have any idea what problems the person in the parking lot that we pass by is experiencing, or that the boy you wished to die of cancer lived every day of his life with just that fear.  We all need to think before we speak.

I read further in the piece and found myself smiling with warm memories of Alex loving his cat, Charlotte so much.  When he went to The Boston Conservatory, he flew her out there with him and brought her home for holidays and summer vacation.  There was a ritual of bringing Charlotte to the vet right before a flight to stock up on meds for her anxiety over flying.  Then when they were home safe, they would go back to a vet for the frequent ‘kitty depression’ that she was prone to from such a change.  This was a little gray striped cat that he received for a birthday gift.  It was not long after that she was run over by a car and left to die.  We rushed her to an all night emergency pet hospital to see what could be done.  When we returned the next day, we were told of her devastating injuries and that there was no guarantee that they could save her.  Alex could not even think of losing her and cried and begged for us to help her.  So, we went against the vet’s, our family’s, and our friends advice and paid the outrageous price and prayed for a better outcome than was predicted.  She came home after three surgeries, many tests and with a feeding tube still in her nose and made a miraculous recovery.  Believe me, it was worth every penny.  Charlotte was there for Alex until the day he died.  Their bond remained strong throughout his life.  It truly is the simple things that matter in our lives.

IMG_0124Now, go read the post by Jennifer Fraser PhD:

Family Voices

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

Source: Family Voices


I came across this article this morning and wanted to hug this young lady and tell her that everything would be alright.  The fact is there isn’t anything that anyone can promise her.  She continues to wait for her diagnosis while she is suffering daily with her unbearable symptoms.  Read her story: