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Old 01-12-2007, 08:42 PM   #241
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Sheri I am so sorry to hear about Joseph. Reading his journal made it seem like we really knew him. To me he was a very strong determined boy. With alot of kindness, love and generosity in his soul. He has made a huge difference in alot of lives. Thank you for allowing us to get to know this very special boy. I will keep all of you in my thoughts and prayers.
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Old 01-13-2007, 04:00 AM   #242
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Originally Posted by gentylwind View Post
Hi everyone. Thank you so much. I cannot tell you the depth of how touched I am...that you followed his story, that you prayed for us for so long, that you have cared to the degree that you have. It is overwhelmingly sweet to my heart.

I am doing all right. Very busy trying to make his memorial and funeral something full of hope, peace and resurrection, not so much of loss and sadness.

I extend any invitation to any who live in the area who wish to attend either or both ceremonies to do so.

Love to you all. Thank you for loving my son.
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Old 01-13-2007, 06:04 AM   #243
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Originally Posted by gentylwind View Post
Hi everyone. Thank you so much. I cannot tell you the depth of how touched I am...that you followed his story, that you prayed for us for so long, that you have cared to the degree that you have. It is overwhelmingly sweet to my heart.

I am doing all right. Very busy trying to make his memorial and funeral something full of hope, peace and resurrection, not so much of loss and sadness.

I extend any invitation to any who live in the area who wish to attend either or both ceremonies to do so.

Love to you all. Thank you for loving my son.

Sherri,
I am one who has followed this daily though we have never met. I feel such a sense of loss for you and your family and I wish there was something I could do to help you during this time. Your strength thru Joseph's illness has been amazing. My life has been changed by following your journey.
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Old 01-13-2007, 01:05 PM   #244
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Quote:
Originally Posted by gentylwind View Post
Hi everyone. Thank you so much. I cannot tell you the depth of how touched I am...that you followed his story, that you prayed for us for so long, that you have cared to the degree that you have. It is overwhelmingly sweet to my heart.

I am doing all right. Very busy trying to make his memorial and funeral something full of hope, peace and resurrection, not so much of loss and sadness.

I extend any invitation to any who live in the area who wish to attend either or both ceremonies to do so.

Love to you all. Thank you for loving my son.
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Old 01-13-2007, 01:24 PM   #245
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I am so sorry for your loss, may you find comfort in the good wishes and caring of so many who feel effected by it also.
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Old 01-13-2007, 01:26 PM   #246
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My youngest DD is just 10 months younger than Joseph.......I can't imagine what you are going through.

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Old 01-13-2007, 06:47 PM   #247
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My heart breaks for your family Sheri.
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Old 01-13-2007, 07:40 PM   #248
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I'm so, so sorry Sheri. I just cannot imagine
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Old 01-13-2007, 08:23 PM   #249
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Once again I feel the need to tell you I feel for your loss. My daughter is everything and maybe it is because I just had her but she is. Also when she was sick and we were in the ward those other children broke my heart. I knew not all of them would make it through, being a tech that work there and all, but no matter what illness or what brings you there, you feel for every child there. I cant take away your pain or tell you I know how it feels I can just tell you I can imagine how it feels. When she was sick and drs wouldnt explain it makes it worse. I hope that in your moment of sadness you realize he isnt hurting anymore and he will forever be with you. Trust me you will know when he is there.
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Old 01-14-2007, 03:41 PM   #250
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Sheri - I just can't even express how sorry I am that the journey ended this way. You and your whole family are in my prayers. I'm going to try to make it to the funeral on Tuesday...if my work schedule cooperates.

Take care of yourself.
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Old 01-15-2007, 06:04 AM   #251
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Praying for Joseph's family and friends as they attend the memorial service today and funeral tomorrow. May our prayers help somehow to ease your suffering...
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Old 01-15-2007, 11:46 AM   #252
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Just heartbreaking. My deepest sympathies for you and your family. Your little boy fought with such bravery and touched many people here deeply. Rest in peace, Joseph.
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Old 01-15-2007, 01:56 PM   #253
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he's at peace now .. prayers to the family
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Old 01-15-2007, 11:26 PM   #254
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I'm so terribly sorry to hear this.
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Old 01-16-2007, 07:57 AM   #255
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Sherri, I just read your update. I have not posted since Joseph passed and earned his angel wings because I have just not had the words to post. I have kept up with this from the very beginning and I truly feel your pain. We are all hurting and I cry every time I read anything about Joseph and your family. Please know that we all feel your pain. May you find peace today and the days that follow. God bless you, your family, and Joseph. Carol
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Old 01-16-2007, 08:39 AM   #256
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TUESDAY, JANUARY 16, 2007 07:49 AM, CST



It is early in the morning on the day of my oldest son's funeral. I type that sentence and feel the strangeness of it, the niggling hollowness that all these plans and services have kept so neatly within their little box in my soul.... getting closer to the surface now. It feels strange to write here without the day counter at the top. It hurts to write here, as if somehow my coming back to this is forcing me to acknowledge what has happened. He was in the hospital for so long, and in the last weeks of his life his father and I realized the futlity of staying overnight when he did not know we were near and while he needed such intense round-the-clock active switching up of meds, adjusting of his body, treatments into his ventilator, orthopedic boots put on and taken off every few hours etc. There was no rest to be had there and his brothers still needed us too, so we slept at home and spent time with him during the day. It makes it hard to absorb that this is real. I feel like a two year old, believing he is dead for a little while but I will awaken and find out this is all just a terrible nightmare, part of one of those dark thought processes that carried me forward to this point and beyond and for which I felt immensely guilty of and fearful for at the time. Joseph gone? How can that be? His having been in the hospital so much is both blessing and curse. We are already used to being here at home without him for great periods of time. But it makes it hard to believe he isn't down at Medical City anymore.

We had the casket open briefly before his prayer service last night just for family to view if they so chose. He didn't look like himself. His lips were still bruised and torn from the oscillator tube. His face, neck and torso still seemed bloated. The petechial bruising across his body was peeping out from the collar of his scout uniform and his hands still wore the bright red splotches where IV lines had been. I don't know if the funeral home just didn't do a good job with his make up or if seeing a child in this state is just tremendously different from seeing an old person, but he was so devoid of color. He was gray and blue and white, none of the pinkness left. He did not look at peace or as if he were simply sleeping. He looked as if Elvis has left the building. He's gone...fled that shell...not in there at all. It comforted me while at the same time brought back the memories of his death. Watching him die was the hardest thing I have ever had to do. Laying my hand on his chest. Feeling that strong, noble heart flutter, pulse, beat strongly, then flutter, pulse, beat softer, until it simply faded away. I could hardly bear it. I both fear the grief and pain these memories cause me and fear avoiding thinking about them will cause them to fade into a recess of my mind where recollection will be hard. It feels tremendously important not to forget how he died...and in this statement not meaning from the respiratory failure caused by who knows what caused by the preparation for a stem cell transplant needed for relapsed leukemia....but more meaning...the actual physical experience of watching him leave us. I remembered this morning that when we went in after Thanksgiving he was being admitted overnight for IV fluids and that I had felt badly for Joseph, who was so resigned but unhappy, and thought seriously about trying to talk the doctors out of it. He never came home again. I am incredulous.

I am doing his eulogy today. I found out last night that my game face is intact, so that is reassuring. I am not one to weep and wail before others. And I have actually done very little weeping since Joseph passed away. At his bedside, certainly, and in odd moments when the thought that he is not coming back has struck me. But I seem to be functioning about three feet above it all. I fear the moment that bubble fades.
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Old 01-16-2007, 10:42 AM   #257
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I've been thinking about Sheri, Stewart and the boys all day. This is going to be a rough day, but the ones to follow will be even more so. My heart aches for them
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Old 01-16-2007, 11:19 AM   #258
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Sheri, you know that when that bubble fades you have some phenomenal friends who will be around in cyberspace to help make the landing soft. We love you.
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Old 01-16-2007, 12:32 PM   #259
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Here for you Sherri...always.
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Old 01-16-2007, 02:10 PM   #260
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Sheri, I am so very sorry. What a truely wonderful and strong person you have been through all of this. I honestly believe that Joseph is not far away. When the bubble does break, you will have a soft cushiony pillow to fall on and part of that will be Joseph holding you.
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Old 01-16-2007, 02:40 PM   #261
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I am so sorry. Words cannot express how I feel.
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Old 01-16-2007, 07:00 PM   #262
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Oh Sherri, I am so sorry.

You are in my thoughts and I wish you peace and good memories.
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Old 01-16-2007, 08:30 PM   #263
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Dear Sherri, I have been thinking of Joseph, you and your family today. Once again, my deepest condolences on your loss. Your post of this morning is one of the most moving, compelling, personal pieces on grief I've ever read. I hope you'd consider writing something, a book even, on your experiences of this journey. It could benefit many, maybe yourself, too. Thank you, and blessings, blessings.....
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Old 01-17-2007, 03:32 PM   #264
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I just saw this, I am crying just knowing he is gone.. Joseph was a brave boy and my prayers are with his family right now..
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Old 01-17-2007, 04:26 PM   #265
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My thoughts and prayers for you and your family.
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Old 01-17-2007, 09:42 PM   #266
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Sheri your words are beautiful, peace to you, know your little boy is in a better place, and you have a special guardian by your side.
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Old 01-17-2007, 09:45 PM   #267
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I am just seeing this...I am so sorry.
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Old 01-18-2007, 09:37 AM   #268
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So sorry for your loss. Your family is in my prayers.
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Old 01-18-2007, 01:58 PM   #269
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I've been following Joseph's story for a long time now and I'm so sorry to hear this news. My heart just breaks for you and I can't stop the tears from welling up. Your family remains in my thoughts and prayers. ray
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Old 01-18-2007, 07:43 PM   #270
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Sheri posted this today:

THURSDAY, JANUARY 18, 2007 01:41 PM, CST
Joseph's Eulogy (this post and next)
Joseph was an interesting child to raise. He saw the world so differently than most and left me often baffled and amused, frustrated and amazed. He was motivated not so much by a drive to please others, but more by a strong desire for peaceful, accepting and loving relationships. This lack of desire to garner good opinions often frustrated and confused those around him, but he was often successful in drawing people into his world through his funny sense of humor. As a person with Asperger’s Syndrome, Joseph was as accepting of disabilities and challenges in others as he was in himself, even when the challenge presenting was rudeness, intolerance, indifference or hate from those who did not understand him. Ever optimistic, he figured if he just loved patiently and consistently enough affection would be returned to him in time. Joseph adored going to school and He wanted others to feel good about themselves. He felt strong identification with the underdog in any situation.

But Joseph loved what most teen boys loved…. Pizza, McDonald’s, movies, malls, video games and occasionally girls. With his illness though his social occasions and culinary adventures went from trips to the mall, restaurants or movies to trips to the nurses’ station outside his door, or when his immune system allowed, a jaunt to the cafeteria on the bottom floor of the hospital. Other children his age in his condition were in short supply. He dealt with his shrinking world and the enforced solitude with so much grace, humor and acceptance. He never asked “why me”. Entertainment was had where it could be found, though many days were simply passed in endless boredom watching Cartoon Network. Stewart and I tried to keep things interesting, and Joseph enjoyed shopping over the phone by having us make trips to the grocery store and read off the shelves to him, letting him select things to bring him. He enjoyed startling his nurses through such antics as eating Fear Factor Popsicles, which turned his lips and mouth a bluish black color and made them think he was not breathing well and by decorating his hospital room with realistic bloody hand prints at Halloween.
Joseph gave so much back to his Dad and me by how m