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Missing Joel
4/21/2010 3:35:44 PM
First, Sean and I want to thank an innumerable amount of people who contributed to our lives spiritually, finacially and supportitvely over the course of Joel's ilness and beyond. Without these amazing connections it would not have been possible for us to devote all our time and energy caring for our children and each other. We have been humbled by the magnitude of giving in our community and inspired by pure acts of selflessness and sacrifice in order to perserve our well-being. It is a blessing to witness and exerience. There has been no small deed that has been overlooked by our eyes and felt in our hearts.

Undoubtedly, there is no easy way to write about the last months past. I have struggled with putting my thoughts together in a cohesive manner. There seems no real way to express my sorrow. For once I feel a loss for written word. How can I feel so many different emotions at once? I guess they are all just different facets of love. I couldn't feel heartache this bad unless I had felt love of its equal. Some of my internal questions have obvious anwsers, and others do not.

There are so many things I can say about Joel. He was my sunshine, and he was almost too perfect. It was fun to be around him, life was a constant exciting, pace around the room, discovery. I imagine God taking the very best qualities from Sean and I, turning up the amplifier to 20, adding some dirt, and there was Joel. There was a reason his favorite song was " The Spy Who Loved Me" If you haven't listened to this song in a while, it's a great Carly Simon tune, maybe remembered as "Nobody does it better".

He was a marvel, with a keen understanding for the world around him. Back in June 2008, after being treated for two weeks for bronchitis, we had attended an A's-Giants game. My dad told the story of him entertaining the rows around him on the bus ride and a woman who later described him as "precocious". On the car ride back to our home, I knew that he was really sick and the next morning I would be taking him back to the doctor and insist on more tests. We cuddled in the backseat together and he told me there was something wrong with his white blood cells and that they weren't doing their job. It was very matter-of-fact. I would never have guessed that 48 hours later, he would be diagnosed with a blood cancer, specifically white T-cells.

Everyday was bursting with life for Joel, even in the grimmest of circumstances. He had been in the 5-south unit of CHO for months and eventuatlly able to stay off IV as long as he drank enough fluids. This quickly turned into a tournament and soon commotion could be heard at the nurses station. He had engaged all the nurses to participate in this "drinking contest", and now was cheering them on as he had them competing not with him, but with each other! Birthdays and holiday spent at CHO turned into the "best day ever!". Only once had he despaired for all he had endured. It broke my heart to hear him express this after 18 months of strife. The skin on his neck was red, raw, peeling and burnt from the end of his radiation treatments. It itched and stung when touched by anything, and it was painful when wet. I had to give him a shower in order to clean and change his broviac dressing; every other day. The hydrocortisone we were told to use, hurt. The aloe vera stung even worse. He broke down and wept. He lamented about wishing to swim, play baseball, and how his life was ruined. He hurt so deeply. I cried with him, and told him I wished I could have stopped this from happening. It was then he began to ask questions about heaven. I answered him the best I could. Although it was heartbreaking, I'm glad we had that conversation. We never fully believed he was going to die, despite the physical signs. I was afraid he would give up, and I needed hope and time.

The afternoon of February 9th, Sean and I both knew he wouldn't have much more time. We looked at each other and didn't say a word. We called our parents and family to come. He stopped eating. He was in and out of sleep and getting confused easily. When I held a straw to his mouth to drink, he wasn't able to suck on it. I felt like I was being kicked in the stomach. He fought. He wanted to drink on his own. Over and over he wanted to sit up and drink. Sean and I would hold him up and he would grab the air, looking for the cup. We laid in the small bed, with Joel in the middle. That night we moved him to the suite where there was a king size bed. We told him it was our bed at home. I put drops of water in his mouth and put an oxygen mask on him. He would have none of that. He ripped it off, so I set it near him, hoping it would help. He never complained of pain, we asked him constantly. I think he didn't want us to worry. We made sure he had enough morphine to feel at ease. We talked to him all night long. We told him how proud we were and how much we loved him. We let him know if he saw Jesus, he couldgo with him. It was okay. I don't know how we were able to do this. We were weeping quietly, but we need him to know that without a doubt, it was okay. We had to be confident. I didn't want him be scared. I read him stories. The last book I read him was his first favorite as a toddler, Good Night Moon. We hugged him and kissed him, loving his every fiber of being. Towards morning I remember thinking that we were going to have another day with him, that he made it through the night. Close to dawn, he wanted to sit up. We held him up against our bodies and he whispered, "I'm not ready yet". We didn't quite hear him. Dad asked him to say it again. He said, " Not you dad, that man over there." he pointed to the corner of the room. " Tell that man I'm not ready yet." A few days later, we learned that our friend Harmon West, had passed a few hours before Joel. It would be just like Harmon to walk our son to heaven. Maybe he was there.

There isn't a day that goes by without constant reminders of Joel. Lego catalogs come in the mail addressed to him, and I look at pictures of new lego sets he would be thrilled to see. I miss him pulling up a stool to assist me in cooking. His love for my meals gives me heartache to prepare his favorites without him. This time of year, our backyard path would be flooded as a "danger river" and littered with trucks, cars and trains. It seems wrong for it to remain combed and untouched. I want to flood it myself, just so it can look as it should. His blankets and animals still have his scent. I dread the day it fades. I have his first lost tooth safe on my dresser and locks of his long blond hair I saved the last time in August when I had to shave his head. I search for him in Andrew and Sophia, but he's not there. Looking for songs he sang or phrases like "it hit me like a ton of bricks". His excitment and humor just can't be duplicated. I miss my constant companion and inquister. I have an overwhelming desire to go places and see things that he dreamed about, for him. Pet dolphins, visit Australia and pet koalas, go fishing, patent inventions. It will be hard for me to watch his friends grow into young men without him. He was always asking me about finding a wife and how to do this. I was excited for his life and what kind of man he would become. Whatever he decided to put his mind to, he would have been an incredible man. I'm so proud of him; he is a true knight with a noble, loving soul.

As for Sean and I and the kids, days are hard without him here. We talk about him a lot, and we cry together, too. We appreciate the space we have been given in order to heal, and hope that friends will continue to be patient with us. Speaking for myself, I feel a different person. My family and my identity have changed. I feel lost without him, without nursing him. Certain days I feel stressed thinking there is a bandage to change or a line to flush. It feels strange not to worry as much about germs or getting sick. I know he is watching us from heaven. That doesn't make it any easier now,
but maybe someday it will.
       
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