So I have too many thoughts racing in my head I think I almost need to make this in parts. The first are my philosophical thoughts and feelings that this situation has left me in and the other how we are doing just a mere week later.......
First and foremost I would like to thank everyone for the most amazing support any family could possibly receive during such a painful time. We have received meals every night, I have read the most amazing and incredible emails, text messages, phone calls, and well wishes. Someone from my preemie web board sent the most amazing collage of pictures of Thurston that they had made with my favorite quote, I cant even believe the generosity and kindness from people I know and love and people I have never met. I also received an email from a paramedic from New York City who endured 9/11 who told me how much hope Thurston had brought back to her, that just blew me away. This process has truly made me a better person, and has imbued me with more hope than I ever thought possible. I want to thank all of you from the bottom of my heart and I cant even begin to tell you what your kindness and thoughtfulness has done for us. That instead of feeling jaded and sorry for ourselves, we feel empowered and grateful and without all of you we would probably have been in a very different place.......
On this very long painful journey, it has been hard not to think of one of my favorite novels, Mary Shelley's' Frankenstein; or, The Modern Prometheus. If you know the story of Prometheus, then you know that basically he created mankind from clay and played many tricks on Zeus(God if you will). He stole fire and gave it to human kind(much like the apple and Eve story) and therein sparking humans to move forward in science and creativity. One of the greatest themes in Frankenstein is how far is too far is science tempering with nature? How far should we really go?
I have often thought about why they would save 1 pound babies, especially my 1 pound baby, who had less of a chance of survival at 27 weeks than a 23 weeker because he had IUGR and was very compromised and stressed already in utero, starved of nutrients and oxygen and not growing because of it. It is definitely still a gamble that doctors, that society, plays with these children who have only percentages to go by and Thurston's chances of survival according to statistics were less than 17 percent if you went by his weight.
Here is where Thurston's chances get murky. Thurston weighed what a 23 weeker usually weighs. So basically he truly only had a 17 percent chance of survival. However he was 27 weeks so you would think, well then he has a 90 percent chance of survival. But the doctors all told me as well as the obgyn, with Thurston who was already sick and compromised in the womb he probably was closer to that of 23 weeks, perhaps even worse. There are also charts that depict the chances of morbidity and disabilities which are I think even harder to quantify but Thurston had an extremely high chance of severe disability and severe medical issues. I will never forget the day Chad and I sat down with the doctors and they had told us that his chances of blindness, severe lung disease, cerebral palsy etc. were so much higher than that of even a normal 23 weeker, he just was such a sick little guy.
I have gone back and forth this last year about thinking if we should be saving these babies, I guess when you fall on the negative end of the percentages and you watch your child suffering endlessly day in and day out, being hooked up to so many machines and enduring surgeries and endless drugs in order to survive for more than a year, there is no way you cannot question; is science intervening where it should not? Was my sons suffering worth the "gamble" that obviously in the end did not pay off and by that I mean not only did he not make it, but he truly suffered greatly, especially in his first few months of life, in August and especially in the last few months of his life. When I was a special education teacher, I often tried to put myself into my students bodies. I thought what would it feel like to have their medical diseases, their aches and pains, their fragility. With my son, every day I couldnt help but imagine how it would feel if every breath I took was a struggle. I imagined it may have felt a lot like having bronchitis or even pneumonia every day for a year. I went back even just thinking about my c-section and how painful that was to recover from and thought about his surgeries and I thought, how can this little being endure so much pain and discomfort let alone how scared he must have been(I saw it on his face) of not knowing what happened to him. I imagine what some medications felt like and all of their side effects, dizziness, nausea, bloating, light headedness, headaches, you name it just think of any medication you have had to take and remember all the side effects and times that by 12-15 a day several times a day. Let alone all the needles, pic lines, ng tubes, loud noises, being woken up constantly right after you had just fallen asleep.....I just cant even begin to imagine
I often go through and think was his painful life worth it? Who is Thurston ultimately here for, us or himself? I know most of you may not agree but if I had a choice, I probably would have preferred that he died in utero when they said he was supposed to. Yes that means that I would have never got to meet him, got to see his sweet smile, got to witness his incredible perseverance, his formidable determination, and I would have been bereft of many of the wonderment that he brought to my life, however, as I have said before, Thurston was not here for me, he is his own person, and watching your child suffer so much, I would have to say that I would trade all of the beauty that I received from him to never have had him hurt so badly everyday of his little life.
Having said all of that he must have wanted to be here for some reason, he fought tooth and nail and lived way beyond all of the doctors expectations. According to one doctor he shouldn't have even lived one day let alone 380 even with all of the medical interventions. I am still left with more questions, than answers, more queries than results, more curiosities than knowledge, more pain than relief; I doubt this passage of my life will ever truly have a neat and tidy ending, it will always be open ended replete with uneasiness and doubt.
The flip side of course are all of the preemie babies who not only made it out, but with very minimal damage in the grand scheme of it all. Yes of course they have issues, I think most have eating issues, and some will unfortunately have life long health issues, but most are doing pretty OK and have a great shot at a happy and fairly pain free life, and that is all anyone can truly hope for for their children. So obviously, for those families the gamble is definitely worth it all and I am truly so happy for all of my wonderful friends and their beautiful babies............
The first few days after Thurston passed I was a complete mess as anyone would expect. His last week he was not doing that well and it was truly painful to see him so sick. The hardest part was when his sweet little body was taken to the funeral home. I curled up in a ball on the couch, I couldn't breath. It seemed like a horrible nightmare and all I wanted to do was wake up..........
After a couple of days I kind of shook myself as if there were two of me. One of me was shaking the other to snap out of it. It said, "you still have a beautiful daughter, you have wonderful memories of your son, and you need to move forward". I realized that unlike someone who suddenly lost a healthy child, Chad, Viola and myself have been literally grieving for over a year now. There was not one single day that I did not tear up in this last year, not one day where I did not grieve for my child. After the event in August, I think I even knew then how fragile Thurston was and I knew that there was a very very high probability that he could die. Even after the trach, although I was hopeful, I knew that even if he caught a cold let alone the flu, that it could possibly kill him. In a strange way, I was prepared for his death I guess, unknowingly.
I have always gained strength from others and the oddest thing is that Thurston's birth and death were bookended by two very horrible natural disasters: Haiti and Japan. When he was first born I kept reading and seeing horrible images of Haiti and I imagined how horrible it would have been, how some people lost their entire families, their homes, their friends, their villages and I realized we are certainly not the only people in the world to suffer, to experience tragedy. Now I think of all of the people in Japan who are going through the same thing. I grieve with them knowing only a little of what they could be possibly going through. It is a strange coincidence that I have had these two tragedies to look to strength for and to count all of my blessings in my life.
There is also a woman who I have never forgotten whose husband was killed in a horrible college shooting and then 6 months later, one of her children was run over and killed by a car. I remember her in the news and when people asked her how she was coping, how she was still standing I remember her saying that she still had so much to live for, that she still had another child to be strong for, I remember thinking what an amazing woman she was with tears streaming down my face. She has never left my thoughts and now I think about her with even more amazement
http://www.signonsandiego.com/uniontrib/20060824/news_lz1e24diaz.html
This week we took Viola to an improv Theatre, one I had taken to her before Thurston was born, and she had a blast. Her life completely vanished this last year too, and I not only grieved for my son but for my daughter as well. She has been the most amazing and patient little girl and truly put up with a lot, going to the hospital on a daily basis, me pumping 6 to 8 times a day for an entire year, me crying all of the time, etc...before all of this our lives were jam packed with library visits, playdates, parks, theatre, art, music, jumpy gyms etc......we truly had something going on almost every day. I want to get back to that and although there is a part of me that will always feel guilty for moving forward which I am sure is a very normal part of grieving for anyone, I must do it for my daughter who deserves to have a full life. I know her brother would want her to.
There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again"..............
