Perspective from an outsider....

When we would attend family reunions with our cousins on my mom's side, they always called the husbands and wifes that were non-related by blood "outlaws".  So it is appropriate that I use the word "outsider" when I talk of Mary Jo. While we are related by blood, she was tossed into our journey and really is an outsider, luckily, like many of you are who share our burdens and tears, heartaches and joys, but know how truly lucky you are to have skirted tragedy thus far.  Mary Jo is my older cousin.  She was my sister Lou's best buddy when they lived in NY as children, childhood cousins, and they were in each other's weddings, and now, with Lou hanging with Evan in Heaven, Mary Jo and I are best friends. I know why Lou loved her so much.  I asked Mary Jo to guest blog about her meeting another ALD mom, thrown into this new world with us, and her perspective on her experience with Lee and Stevie....

Last week I met another boy with ALD, a disease that I didn’t know existed until almost four years ago. Four years ago, Evan and Stevie were both vibrant active boys. That’s two boys too many suffering from this dreaded disease.  Any number is too many. Four years ago, Steve was diagnosed with ALD after his parents noticed his head dropping. They visited Steve’s pediatrician. The doctor sent him to the hospital for a Cat Scan believing he had had a stroke. He received the diagnosis at that time. Steve Sr. and Lee brought him to Duke University for treatment.  At this point he could not walk or see. The doctors said the disease was too advanced for a marrow transplant and he was sent home to die. Four years later, Steve is still holding on.  Stevie lives in Manhattan with his mother Lee. Lee, like Gina, is an adoring mother who fights daily to make sure her child is getting the best care available. They live in a neighborhood that I love, behind the American Museum of Natural History, blocks from my favorite place, Lincoln Center – home of the Metropolitan Opera, close to Central Park. Across the street is PS 9, the very highly rated school that Stevie attended before his diagnosis. This perfect world was where Lee and Steve Sr. lived. Lee’s partner, Steve, tragically died from a heart attack last year leaving Lee alone to care for their beloved child. She is no longer able to work outside the home. Stevie comes first.

Stevie spends his time on a hospital bed in their apartment. Every open space piled high with supplies and equipment for Stevie.  He cannot speak, hear or hold his body erect. He receives his nutrition through a tube to his stomach and has a trach in his throat to help him breath. His mother, Lee, communicates her love for him by getting close to his face and cooing soft loving words to her ‘Boo’. She says he is like a baby who recognizes her by her smell. When I met them, Lee was concerned about Steve’s oxygen levels and the prescription of antibiotics that he was taking for pneumonia. He had spent a few days the previous week in the intensive care unit of Columbia Presbyterian Hospital and needed to return to get his medication adjusted. She got on the phone very business-like and called for an ambulance to take him to the hospital giving careful, specific instructions. She luckily lives next door to a firehouse, the firemen know about Steve and help the EMTs take Steve from the second floor apartment into the tiny elevator and out of the building every time he has to go back to the hospital. He was released on Thursday. Yesterday (Saturday) I got a call from Lee telling me that he is in the hospital again. The doctors want to take him from the ICU and put him into a regular room. They need to give him antibiotics intravenously. The doctor also talked to Lee about a DNR - a shock for her regardless of the circumstances. She cannot make a decision on that subject now.

Like Evan, Steve is a beautiful child. He has the enormous brown eyes that you can drown in. Angelic is the word that describes him best: Angelic in his innocence and his beautiful face.

Despite these impossible circumstances, Lee is upbeat. She has a can do attitude and is making plans to move with Steve to the suburbs: Stamford, Conn. Today she told me yes she is upbeat but inside she is crying. Still, her mind is still working on fund raising for Stevie, for the firehouse to show her appreciation for their constant help. 

Forever keeping it in perspective,  Mary Jo