The Sound of Silence.......

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

I apologize for not updating as the last couple of weeks have been a whole lot of crazy. This will be a brief update. We got to take Thurston home on hospice on his birthday March 8th. It was a glorious day but also bittersweet as they told us that without a couple of the hospital medications, he probably would not survive the day. In true Thurston fashion, he hung on and we have been able to enjoy some wonderful moments with him, however, we have also encountered some very scary, sad and heartbreaking moments as well. Its only a matter of time and we are keeping him comfortable and loving all over him.

I also wanted to ask in the coming days and weeks that although I do not expect anyone to ever know what to say to us in a situation like this, I do have one request and that is the one and only thing I do not want to hear is the phrase"at least". "At least you got to take him home", "at least you got to spend a whole year with him", "at least he is in a better place now".......I dont want to have to smile and pretend that what you say to me does not hurt, does not sting, does not sear into my soul. I have been standing idly by watching almost everyone I know for over an entire year live their normal lives, have normal births, have normal children, and I am so happy that most people will never have to go through this very long elongated process of suffering, but at the same time it hurts so much that Thurston had to be the one to go through all of this. My son has suffered greatly in the last year, it has been horrific watching my sweet child get poked and prodded, stuffed full of drugs you cant even begin to imagine, endured two surgeries, both which left him in great pain, pumped full of oxygen that I can only begin to imagine how uncomfortable that must have been on both the cannula and the cpap, lying in a lonely hospital room for over a year where he was constantly woken up, especially in the last three months almost every hour if not more, where everyday he had circles under his eyes because no one would allow him to sleep, and I really dont feel I need to go on, you get the gist. I would also like those few people that think my son still might "make" it that as his mother, I have accepted his disease, that death is not horrible especially when you are suffering, that I truly believe it will give my son the peace that he deserves and that if I can accept it, and that if I can wrap my brain around it and that I have been with him through thick and thin and I KNOW HIM BETTER THAN ANYONE ELSE ON THIS PLANET! then I please ask that you refrain from thinking that you know more than me.....it is extremely insulting and although I am not religious, I have always felt that it is ironic that people who believe in a place like heaven are so afraid of death and according to their belief systems, death actually should bring beautiful and wonderful things to my son. Ultimately, Thurston is not on this planet for me, for Chad or for Viola. He is not here to amuse us, to bring us joy, although those are all benefits we have received by his mere existence, but Thurston is his own person, he is suffering and when he chooses to go, he will, just as he has chosen to hang on as long as he has.

This has been a trying couple of weeks and although we are relieved he is home and that he is in a better place, it has not been easy on any of us to watch our son go through this process. Right now he is comfortable and sleeping and at this point, all we can hope for is that he does not feel any pain. I have truly been coasting on autopilot, which is the only reason I am standing, almost like an out of body experience. I so appreciate all of your support, prayers and everything everyone has done for us and would like to thank my preemie moms, Candace, Beverly, Michelle, and Jennifer for their wonderful gifts and for my father and mother, both of whom extended their stays to help out in this impossible circumstance and for Thurston's Ami mommy whom I couldnt begin to even think what this experience would have been like without her.

I wish things had turned out differently and sometimes I often exist in an alternative reality where Thurston was born normal. Every day I think about what we would have been doing had that happened what life would have been like for us if Thurston had been born under normal circumstances. You never ever forget about the dream that you once had no matter how tragic the circumstances......"and the vision that was planted in my brain, still remains, within the sound of silence".......