Friday, February 18, 2011
In the last year I have been the parent of a preemie. I then had to transition into being a parent with a child who has a chronic health condition. Now unfortunately I must transition once again into a parent of a child with a terminal illness............
The sheer and utter irony that all of you will be blown away by by what I am about to regale you with may knock you cold on the floor. The utter sadness and devastation you will feel will leave you there lifeless as it has me Chad and Viola.
Last year on February 17th, 2010 we had one of the toughest decisions to make regarding the fate of Thurston. It is the very day that they told us that Thurston was not going to make it out of the womb and that we could either induce him and get him out to end his suffering, or go home and wait for him to die inside me, I remember staying up the entire night trying to make such a horrible decision:
"They went over our options. We could induce him, and get him out, or we could go home and wait for him to die. WHAT THE FUCK KIND OF OPTIONS ARE THOSE.....I thought to myself. I wasnt sure if I could handle the pain of carrying him around inside me, everyone asking me the proverbial onslaught of pregnancy questions "hows the pregnancy going", "how many weeks are you now", "is it a boy or a girl". I thought I would tell them to all Fuck off. I thought a lot of things. Chad and I tried to mull it over, how the hell do you mull something like this over."
Yesterday, February 17th 2011, ironically and tragically to the day, we were given those same options at the care meeting. They told us that by now the trach should have given him the support he needed to start growing. He should not be having these continual episodes. They told us that they now know his Pulmonary Hypertension and lung disease is irreversible, that his lungs are not growing and are too far damaged to fix. ...meaning there is no cure, no going back, no stopping its formidable force; permanant. Its like a cancer that Chemo cannot cure, its like having cystic fibrosis only Thurston's lifespan will not even be 1/4 of the predictions for someone with this disease. So yesterday, like clockwork, we were given the EXACT same options that we were given before he was born, either take him off of the life support and end his suffering or prolong his life and therefore his agony, that will always mean being hooked up to a vent and most likely include him being heavily sedated, and wait for him to crash again into his ultimate demise......
I know many of you are asking yourselves, "but wait isnt there ANYTHING else you can do"......and please bear with me for being extemely frank in the very fragile emotional state that I am in right now. ANYTHING and I mean ANYTHING that you are asking yourself please be assured as astute, intelligent, thoughtful, caring parents it is nothing we have not asked ourselves, asked the doctors, looked up online, asked other people etc. There is always a need for someone to try and help, to think that they may have the AHA solution to our issues and problems, and really we know that you only mean well and of course you would like Thurston to beat this horrible disease as much as we do and we love you for it but trust me it will only make this process more painful for us so if you write to us or call us or text us or talk to us PLEASE I beg you do not berate us with the "isnt there anything else they can do" or "well what about this avenue or this road, have you tried that" "hey I read about this situation...." etc. Please please know that we have been dealing with this situaion for almost a year now. Please know that we have consulted many many people, have done gallons of research and have talked to a multitude of parents in very similar situations. I know it is only natural for an outsider to think that there MUST be something that they can do, but Thurston now has a terminal illness who is being kept alive by life support. That this couldnt be more painful or more tragic or more unreal and what we truly need is just some time to let it all soak in. We have no answers as to when where or why it will happen, much like someone who has been diagnosed with terminal cancer but the doctors think it is only a matter of time........
Having said all of that we are getting a second opinion and the doctors are helping us do that. We still may run a few more tests here and there. We obviously as his parents want to make sure that we have exhausted all possibilities in this manner, to make sure if and when he does pass away, that we did everything we could for him. Trust me we dont want to live in a world of regret either. After we have done all of that we will have the ability to take him home and to make sure that he can be with us. He is still very much himself and has moments where he is kicky and happy and coherent even through all of the sedation which they said they will slowly wean him off of. We welcome all visitors both in the hospital and at home who would like to come see him, to meet him for the first time, to say goodbye, whatever it is we would love it and I know Thurston would love it. He is a very social little guy and I would love that his life be full of as many awesome and incredible people and moments as possible. Thank you for all of your support this last year and continued support helping us get through such an unimaginable tragedy, something no parent or child should ever have to go through.
I clearly remember the one thing that always gave me hope on this very long journey was the fact that I always thought that one day, Thurstons lungs would get better. I always thought about all of the parents who had to drive to the hospital day in and day out knowing full well that their childs days were limited, knowing that they did not have a future with them, and I always thought, "at least we have hope". Well now we are those very parents that I always felt so bad for. I now have to redefine yet again what hope means, if I can even find it. Right now I only feel that all hope has truly floated away.