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Friday, March 18, 2011

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 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".......


  1. I have not been able to stop thinking of you guys. I check here multiple times a day for an update. I am sending you all much love, hugs and peace for comfort. You are an amazing little man Thurston!!!


    ~trach mommy~

  2. My thoughts and prayers have continued to be with you everyday. I cannot relate to what you are going through nor act as though I know it all, I am simply a mother and from one mothers heart to another I send you my heart filled wishes, and love.

  3. Dear Donna,
    Thank you for the update lovely lady. I, too, think about you and your little Thurston often.
    Sending a big hug to you and your beautiful family!

  4. Donna, I think of you every day... and keep you, Chad, Thurston and Viola in my heart at all times.

  5. . My heart breaks a little bit more each time I think of you all. Yet I think of you daily, pray for you constantly, and wish I was able to throw my arms around you. We love you so much

  6. We've never met but I feel compelled to say something, to let you know that yet another complete stranger is thinking about you and wishing there were some way I could help.

    I am so proud of you. I am proud of the way you have handled yourself (even when you are feeling at your lowest), and how you have expressed what you want and need. I join you in looking forward to peace coming to Thurston, and to your suffering as well.

    Thank you for sharing your experiences, and being so brave.

  7. My heart is breaking for you because I know what you are going through. I know the feeling of the world carrying on around you while sitting in an out of body experience. I am sooo sorry that you all are going through this. I love this post because you said what you feel and for that, I admire you. I have been following your blog and how Thurston (and you all) were doing every couple of days....I prayed that he would beat the I pray that he (and you all) are not in pain and you can get through this...which you will. Thank you for being an inspiration to me. For saying things that sometimes I couldn't. May god bless you and wrap his arms around you all. Thank you Thurston for making our lives just that much better with you're birth and courageous fight and beautiful little soul.

  8. I am so very very sorry. On march 1, 1979, my son Justin was born. He had Down syndrome and an incomplete and disconnected digestive system. The Downs was apparent right away but we didn't know about the digestive system issue until i tried to nurse him and we realized he couldn't eat because the food had nowhere to go. We were given some surgical options but they were few and mostly involved him "living" in the hospital probably for the rest of his life. My OB finally told us we could decide whether or not to treat him. We researched the possible outcomes for his quality of life and it was grim. We took him home and he passed away two weeks after birth. People told me "it's God's will", "he's in a better place", "he's not in pain now" etc etc and pretty much I just wanted to scream. The bottom line was I didn't have my precious boy, my 2 year old didn't have his little brother and no "right" words could fix any of it. I was so angry I cant describe it. I came to realize that people said whatever they could think of because they had no idea what to say. None of their words can heal your broken heart. Only time will help and only you will know when enough time has passed. There is no "appropriate" length of time to grieve. It is what it is. Last May 11 my first grandchild was born at 26 weeks, 2lbs, 3oz. We were incredibly fortunate that he is doing well but I am painfully aware that it could have been different. I am so very sorry for the pain you are feeling. There truly is nothing anyone can do to make it better, but I will keep you in my heart and hope for a better day when you will remember your baby with more peace and less pain.

  9. took a little of all of you back with me...including every smile thurston gave me. Each one lit me up like the brightest sunlit day. I love you all very much Love you Thurston :)

  10. Dear Donna,

    My heart is broken into a million pieces :(. I am so sad and angry that Thurston is losing his battle!!! This is such horrible luck. I am sending you a virtual hug.


  11. Dear Donna,
    My thoughts are with you and your family. I can not imagine nor would I pretend to, what this past year has been like for you and your family.

    I am grateful to hear that Thurston is home and getting to sleep and rest and be with the love of his family 24/7.

    I wish you all peace through this.

    We love you Glow-worm!! We honestly do. I was sunk from the first time I saw him all dolled up in his little Glowie outfit...good gosh no one does adorable quite like Thurston.

    Cat/pekeluvr on inspire

  12. Thank you for sharing your story and realize that I need to thank the Lord that I still have my children and that they are truly a gift. I pray for your sons miraculous healing and your end to suffering. I dont know all the facts of your sons illness. But Ive been researching a lot of holistic healing. Check out Gerson Therapy. Most doctors dont approve but it's not traditional. There is no money to be made on the treatment. I would feel it would be an injustice on my part not to at least mention the treatment. There are documentaries on the treatment. God Bless your little boy and your family

  13. I love you mossholders. I think about you everyday and feel very fortunate to get to see thurstons sweet smile. Xoxo, sharon

  14. You are so strong, courageous and a fierce momma cat. Peace, love, and continued strength as you pass through this stage of Life. Only you know and only you can do what's best.

    Much love and hugs.

  15. I know that you said you weren't religous, but I have known of many unexplained miracles in the name of Jesus. Ask Him to show you His soverignty.

  16. Donna as usual well said. I just want to thank you and Thurston for allowing me into your lives via the post. Thurston's life has given me more hope than you know. And although I have never met you before,I am feeling your pain and Thurston has a special place in my heart. My Maicee got tired of struggling 8 days after she was born(she was the oldest identical twin),she found peace beyond my understanding and I found comfort in knowing that she knew that I loved her with my entire being and she was no longer in pain. I miss and think about her everyday but not in a mournful way,she is just an integral part of my life whether she's in the flesh or not. Stay strong and continue loving up on Thurston, love is the greatest give we can give. My thoughts and prayers are forever with you all.Shonda

  17. I can't begin to imagine what this year has been like for you and your family. You are all in my thoughts and I wish you peace and much love.

  18. We love you guys. I'm holding your hand in my mind right now.

    -Jen, Scott, Zosja and Kai

  19. I love you, Glo-worm ever since the day I met you on the preemie board. You are all in my thoughts and prayers. I am so happy he is at home with all his loved ones and sleeping when he wants and loving all of you loving all over him without the hospital distractions. You are an amazing family and have been through so much. I am still hoping because I can't allow my heart to break just yet for that boy. I know you understand. Continued prayers....

  20. I have no words. Sending prayers, thoughts and hugs.

  21. Sending you support and love. You are an amazing woman and Thurston is an amazing little boy. The stars will shine just a little bit brighter for thousands of people because of Thurston.

    I wish you and your family some form of comfort in this extremely difficult time.

  22. There are no words that you haven't heard and said and thought, so I Just want you to know that I'm always thinking and wishing on your whole family's behalf. You're more than just a cousin to me, and so is Thurston. Always will be.

  23. I am so sorry, Donna. I wish I had any idea what to say to comfort you. I wish I even knew what to hope for, but I don't. I cannot imagine your pain. Sending my love to you. --Heather P

  24. Praying for peace for your family and sweet Thurston.

  25. Thank you for sharing your story! He is a beautiful soul and what beautiful parents and family he has! I will pray for all of you, for Thurston's pain to go away, for strength for you and your husband above all but also for Thurston's whole family, for understanding and comparing from those your surrounded by especially that it be shown in their actions to support you and their words to not hurt and only comfort you. You are always in my thoughts and prayers and I admire your candidness and honesty in your posts. Love Jessica

  26. Donna. Again with such power and grace.

    You are a bad ass and my hero.

    Thurston a precious gift that has enlightened us all with his amazing will to live and love.

    Love to you and all , Gale

  27. Donna

    I am so glad you are honest. People struggle with what to say and I hope this helps them be better to you.

    My heart is breaking....I have not been just where you are, no one has, but I have been close enough to understand. With all we have been through I still do not have the words.....

    Please know Thurston is always on my mind and I am sending him much love. I am so grateful to share in his life and yours.

  28. Donna, Chad, and Viola,
    My thoughts and prayers are with you and that you will be able to grieve, and love each other fully through this process. I am so proud of you and your family. May my love and admiration for you fly across the skies.
    Love- Kyndel

  29. Dear Donna,
    I have been thinking about you, your family, and Thurston. Sending love your way.
    A Friend from Inspire

  30. Donna,

    I don't have words... I wish I could make everything perfect for you. All I can offer is love. I wish I could do more.


  31. I've been following your story on Inspire and your blog for a while and I am sitting at my desk crying for you and Thurston. I pray for you and your family all the time and I don't know what else to say. Hugs to you and God Bless.

  32. My heart goes out to you and yours in your pain

  33. My heart has shattered. I can't even fathom how you must be feeling. The sorrow in my soul must not even hold a candle to your pain. So sorry for this. Thurston, you will be in my heart!

  34. Donna/Chad.

    I can't express to you how sad we are; for us, the event that saddens us the most is the passing of a child.

    Uncle Pat