Oh no, Joseph is gone...

[sunset]

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.

[Abbey32]

Originally Posted by gentylwind

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.

[qtip1269]

Originally Posted by gentylwind

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.

[AFwife]

Originally Posted by gentylwind

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.

[tinge_of_crimson]

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.

[GApeach23]

My youngest DD is just 10 months younger than Joseph.......I can't imagine what you are going through.

[dreamseeds]

My heart breaks for your family Sheri.

[Boujie]

I'm so, so sorry Sheri. I just cannot imagine

[krisiee]

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.

[parrot]

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.

[Lisa Marie]

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...

[FirmJuneBug]

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.

[XxSpacegirlxX]

he's at peace now .. prayers to the family

[soon2beskinny2]

I'm so terribly sorry to hear this.

[TxLady]

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

[Stormyskies]

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.

[FurkidsMom]

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

[mmmommmy]

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.

[tyler43836]

Here for you Sherri...always.

[USMCmom]

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.

[lisamoran]

I am so sorry. Words cannot express how I feel.

[Besos]

Oh Sherri, I am so sorry.

You are in my thoughts and I wish you peace and good memories.

[walkthebeach]

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.....

[AnnaBanana]

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..

[igirl]

My thoughts and prayers for you and your family.

[katrun]

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.

[Just Martha]

I am just seeing this...I am so sorry.

[happycat]

So sorry for your loss. Your family is in my prayers.

[turtlegirl115]

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

[FurkidsMom]

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 much he both tolerated and trusted our help. At an age where most kids start to resent any intrusion on their desire for autonomy, Joseph held both an air of peace for the dependence cancer brought him but also one of expectation, that forces and persons more knowledgeable than himself could and would fix this. His attention was ever forward, on the day that he would be well and free from the prison of his treatment. That is not to say he was sweet natured or okay with his illness. What intrusions he could tolerate from his dad and I he resented and fought in medical personnel. Their constant interruptions frustrated him endlessly and friendly overtures were met at best with indifference and at worst with open hostility. He desired no lasting connection with the hospital or the workers who labored so hard to heal him. He fully intended to recover completely and have no lasting bond of any kind with that world of sickness and pain. But his father and I remain ever grateful, not only for the incredible medical expertise that gave him eight wonderful months of remission, but for the humbling emotional and mental investment his physicians and nurses allowed themselves to feel for our frustrated young man and that they showed to us, particularly when it became clear this would not turn out as we had prayed.
I have questioned over and over if Joseph knew toward the end if this was his fate and whether he was at peace. During the final night before he went on the ventilator I had stayed close to his side, helping him keep the oxygen mask in place. It was an hour or so before dawn, that long, dark time when all the world is thick with silence and the demons of the mind haunt so freely. We lay close together, protected in a kind of communion where the heart speaks louder than words, neither able to address or deny the incredible effort it took him to breathe and the serious decline it represented. We had a two sentence conversation which now has comforted my heart for weeks. I asked him “Do you know how much I love you?” and his voice was so soft and breathless behind the mask. He answered me “A whole lot”. Then I simply asked him “Are you scared?” Just as simply, he said “no”.


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THURSDAY, JANUARY 18, 2007 01:41 PM, CST
So perhaps now he asks of us those same questions and desires for us the same answers. Do you know how much he loved you? Are you scared? For me, the honest answer is yes, to both. I don’t anticipate having the ability to meet this new debilitating pain with anywhere near the dignity or courage that my son showed as his body began to fail him. It is amazing that I lived 20 some odd years before each of my children came into my life with no sense of incompleteness or yearning, but once they each arrived, they filled a lonely place in my heart I had not recognized until their presence healed it. I do not relish a world without my oldest son. But Joseph taught me…that the only way to the other side…is through. And so it must be for us all, to soldier on through the pain. He hovers a mere breath away, beyond sight and touch but forever within grasp of spirit, emotion and heart, once again a soft whisper from my soul to his.
Most every parent desires their child to grow into a person of character, strength, compassion and contribution. Joseph only got 13 years to accomplish what takes most of us a lifetime of growth. His life had meaning. His illness was not a waste nor his death the final blow of defeat. His spirit touched others. Joseph fought while there was fight to be had and defined the face of his battle, his courage and tenacity drawing heroic hearts across the globe to his own. His life has now evolved, his spirit grown beyond what ours can yet conceive. His illness was a tragedy but his legacy now legend for those who knew him. He exceeded my expectations in attitude, strength and accomplishment. I could not be more proud and whatever rewards he now enjoys are both hard won and well earned. His spirit was too bright to be contained, too bright to be held back by his fragile body and too bright to ever be forgotten by those his life has touched. Well done, Joe-Gi. You did so great.


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THURSDAY, JANUARY 18, 2007 01:29 PM, CST
It seems the sun has hardly shown at all since the day Joseph died. And all this winter weather...so unusual. Yesterday was the final step in the formalities of Joseph's death. We awoke to snow, sleet and ice on the day we were to travel to DFW National Cemetery for Joseph's graveside service and burial. It took two hours to get there. I cannot help but feel Joseph has had a hand in all this, doing his best to bring some fun to his brothers and the other kids, trying to give them snow days to play. Nick and Alex were throwing snowballs and building a little ice fort while waiting for all of us to arrive at the cemetery and I found myself smiling softly as I watched them. Joseph would far and away prefer a good old fashioned snowball fight to bowed heads and weeping. Still, as we drove to the pavillion where the services were to be held, we passed the hole that had been dug for him, the freshly turned dirt, the backhoe still there that had dug it and I shuddered. There are no words for the horror. To think all the kids of Plano yesterday got a snow day while Joseph got put under six feet of mud.

I struggle with an amazing fluctuation of emotions that go so far one direction and then the next that I have kind of begun not paying much attention to any of them. They roll through my like thunder and passing showers. I have only now, with all of family gone, Big Joe gone back to Detroit and the boys back to school today, begun to assimilate what just happened. Joe-Gi is gone and I must live the next 30, 40, 50+ years never seeing him again. It is too much to bear.

Many of you asked for a copy of my eulogy from Joseph's funeral. This is it....