I sit here sobbing...as this is the most difficult entry that I have ever had to write.
On Friday June 20th at 3pm, I received a phone call that would break me. Our heart friend Stephanie Williams passed away with her family by her side at Milford Hospital. I am so heart broken at her loss. Although our family had not know Stephanie very long, she was one of most valued friends within my contact list. She was Tucker's biggest fan, and helped me through so very many dark "CHD" days She had a million heart stories in her 29 short years and I wanted to hear them all.
I met Stephanie through a close friend right around the time that Tucker was born. She use to babysit for her and I was curious to hear her CHD story. Our family invited her over for dinner several times, and always communicated through texts and/or Facebook. Stephanie was an amazing person, she played with my children like they were her own and told us her story several times. I always asked a bunch of questions, most of my questions were directed to her about her mother and her childhood. I was often taken aback by the fact that her mom treated Stephanie like she was a "healthy" child. Stephanie did all sorts of things when she was growing up, she would tell me that her mother would just make sure that she was always with her.
While we were in patient at Children's Hospital, Stephanie was at Brigham &Woman's Hospital for what she thought was a viral infection. Sadly her "new" transplanted (8 years old) heart was in rejection. The worst part was yet to come, as she would not find out for several weeks that she was unable to be relisted for a second heart transplant. Stephanie and I sat for several hours just catching up about life with the boys and her new nanny position working for an adorable family where the father was a cardiologist at the very hospital that she was inpatient in. She was worried that she would be fired...I told her that he could check her alibi and not to worry about it. Little did I know that this would be our last conversation. Such small talk, but she loved it! Anything that took her mind off of being in the hospital bed. I walked with her to the cath lab for what she swore was her 1,000 cath, and as the doors parted, I surried back to Tucker's bedside at Children's Hospital.
Although Stephanie was born with a broken heart, she had so much love in it. She loved life and never took one day for granted. When I am able to talk to Tucker about Stephanie, I will certainly beam with pride that she had a wonderful life. She lived life on her terms and lived it to the fullest. She would not want us to be sad about her passing. She would want me to tell Tucker all about her story and how strong and brave she was.
I mourn so many things about Stephanie's passing. Death makes you put your own (and more importantly, your CHD son's) life into perspective. There are a lot of "what if's" that can be asked. I try to keep these feelings suppressed, but sometimes I just can't and my emotions get the best of me and all I do is sob. I am not sure if I am sobbing for the loss of Stephanie or that I have lost all hope of Tucker outliving us. I HATE CHD"S!
On Friday June 20th at 3pm, I received a phone call that would break me. Our heart friend Stephanie Williams passed away with her family by her side at Milford Hospital. I am so heart broken at her loss. Although our family had not know Stephanie very long, she was one of most valued friends within my contact list. She was Tucker's biggest fan, and helped me through so very many dark "CHD" days She had a million heart stories in her 29 short years and I wanted to hear them all.
I met Stephanie through a close friend right around the time that Tucker was born. She use to babysit for her and I was curious to hear her CHD story. Our family invited her over for dinner several times, and always communicated through texts and/or Facebook. Stephanie was an amazing person, she played with my children like they were her own and told us her story several times. I always asked a bunch of questions, most of my questions were directed to her about her mother and her childhood. I was often taken aback by the fact that her mom treated Stephanie like she was a "healthy" child. Stephanie did all sorts of things when she was growing up, she would tell me that her mother would just make sure that she was always with her.
While we were in patient at Children's Hospital, Stephanie was at Brigham &Woman's Hospital for what she thought was a viral infection. Sadly her "new" transplanted (8 years old) heart was in rejection. The worst part was yet to come, as she would not find out for several weeks that she was unable to be relisted for a second heart transplant. Stephanie and I sat for several hours just catching up about life with the boys and her new nanny position working for an adorable family where the father was a cardiologist at the very hospital that she was inpatient in. She was worried that she would be fired...I told her that he could check her alibi and not to worry about it. Little did I know that this would be our last conversation. Such small talk, but she loved it! Anything that took her mind off of being in the hospital bed. I walked with her to the cath lab for what she swore was her 1,000 cath, and as the doors parted, I surried back to Tucker's bedside at Children's Hospital.
Although Stephanie was born with a broken heart, she had so much love in it. She loved life and never took one day for granted. When I am able to talk to Tucker about Stephanie, I will certainly beam with pride that she had a wonderful life. She lived life on her terms and lived it to the fullest. She would not want us to be sad about her passing. She would want me to tell Tucker all about her story and how strong and brave she was.
I mourn so many things about Stephanie's passing. Death makes you put your own (and more importantly, your CHD son's) life into perspective. There are a lot of "what if's" that can be asked. I try to keep these feelings suppressed, but sometimes I just can't and my emotions get the best of me and all I do is sob. I am not sure if I am sobbing for the loss of Stephanie or that I have lost all hope of Tucker outliving us. I HATE CHD"S!
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