Tuesday, May 7, 2013

Remember.....

Remember. Memories. Some are sweet, some are sour, some are painful. This is a difficult time of year. I haven't talked about it in depth here. It's always in my heart, always under the surface of a smile. Always. I'll never forget. Ever.
Nine years ago we lost our oldest child, our son T.J. It's not just a day, the day that he was declared brain dead - Mother's Day, May 9, 2004. It was a week of events, more if one starts to think about the last times before he died and then the first times after he died. T.J. was just past 19 when he died as a result of a traumatic brain injury he sustained when the defective tailgate he was sitting on collapsed. Nineteen. He had really just started living, though I'm grateful we had 19 years with him. So many parents have less time with their children.
T.J. didn't have an easy life. He had a full plate of neuro-biological disorders and learning disabilities. Every day was difficult for him. Some days were dark. Always, he tried. He tried to be the best person he could be. He tried to be the best student he could be. The best brother, son he could be. Some days he was successful, some days - not so much. He had a smile that would light up a room. He was curious - I had oatmeal stuck to my dining room ceiling for a while as a result. T LOVED Legos. Loved them. Any Lego that came into the house, ultimately ended up in his room. He loved his family deeply - he was fiercely proud of his brother and sisters. He wanted people to love him, like him. That wasn't so easy, especially for those who didn't know him/love him.
The night before T.J.'s injury, Wednesday, May 5, was not our proudest moment as a family. World War III broke out over soup and someone sticking their finger into someone else's soup. Yelling ensued - everyone in the house, at everyone in the house. A fist-fight broke out. My youngest son tells me that I told both boys that I hated them. I don't remember that, but it could be selective memory - I'll own it. What I would have intended, I believe, is that I hated how they were behaving - my children are my life. I sent everyone to bed.
 The next morning, May 6, I did not say goodbye to T.J. when he left for work. We always said goodbye. I was still angry. I'll live with this for the rest of my life - the last words my son heard from the people who loved him the most were angry words. That day was a beautiful spring day - sunny, a bit cool. I spent the morning cleaning the house then sat down at the computer to work on a project. The phone rang a little after eleven - it was Jeff, T.J.'s boss. "Mrs. Michaud, T.J.'s been hurt. Call Tim and have him bring you to Maine Med." I asked Jeff what happened, what was wrong. He said he didn't know. I called Tim and told him to come get me so we could go to the hospital. I tend to over-react so I was trying to calm myself down. I thought maybe he had a broken arm or broken ribs. When we arrived at the emergency room, T.J. wasn't there. It's not a good thing when you give your name, your child's name and they escort you to a private waiting room. While we were sitting there we could hear a doctor and nurse talking in the hallway. They kept talking about the "patient". They had "lost him" several times on the way to the hospital. I wanted to scream that he wasn't a "patient", he was my son, he had a name.

We heard the ambulance, and stood in horror as the paramedics rushed him past us to the exam room. One of the paramedics was gripping T.J.'s fist. His breathing, it seemed to me, indicated he was fighting pain. I was told later that wasn't the case. I will never forget that scene. We wanted to see him, to touch him and tell him it would be okay. To tell him that we loved him. They told us there wasn't time. They cut his clothes off him and rushed him for testing. The owner of the company T.J. worked for arrived with tears in his eyes. I called my parents and my in-laws, it was surreal.
When they finally escorted us to the special care unit, SCU, a nurse asked question after question, "How many stories in your house?", "What floor is T.J.'s bedroom on?", "How many steps up into the house?", there were others..... I remember that when we arrived to the doorway of the SCU, we were asked to wait in the hallway and the doctor would be out to speak with us. My mother was relieved when the doctor came through the door. He was a neurosurgeon, and she knew his name and that he was one of the best. Dr. Barth indicated that T.J.'s brain was swelling and they had placed him in a medically induced coma to limit the stimulation to the brain to, hopefully, help reduce the swelling. He didn't have a prognosis for us at that time, he said T needed time.

I had to call our kids. Our youngest, Gabrielle, had a softball game that afternoon. Tim and I were always at the kids' events. I called Caitlin and told her that I needed she and Matt to go to Gabi's game. T.J. had been hurt and we were at the hospital. That he'd be okay and we'd update them later. After her game, Gabi asked Caiti and Matt what happened to T.J. She knew, without being told, that something had happened to her brother. There really is no way to prepare your children to enter a critical care unit so see their brother tethered to multiple machines. We still had to tell his girlfriend Gillian. She had been away working on a senior project. Her senior prom was scheduled for May 8. 
The next several days were a waiting game. They told us we couldn't talk to him or touch him because it would stimulate his brain - they needed his brain to rest. I remember praying to God, repeatedly, that he take me and give us back a healthy T.J. At some point on Friday or Saturday we were introduced Carla Cutting, a nurse coordinator for organ donation. They/we were still hoping for a positive outcome for T.J., however, T.J. was potentially a good candidate for organ donation. He was strong and healthy and only his brain was affected by the injury. I can't really convey what it's like to go through a list of organs, bone and tissue and discuss which you can and cannot bear to donate. Carla was, is, incredibly compassionate. Ultimately, the swelling did not subside and we had to make the decision whether to operate or end medical treatment. T.J. had a 1% chance of surviving the surgery and if he survived, the prognosis was not good. Existing is not living. T had worked far too hard in his life to be independent, to be subjected to an existence of totally dependent living was not an option.

When we decided to end medical treatment we were finally able to talk to him, to touch him. I hope he could hear our words of love. Can you imagine what it was like to go home in the middle of the night and tell your kids that you've ended medical treatment and that their brother was dying? It's horrific. T was declared brain-dead at 11:20 a.m. on Sunday, May 9, 2004 - Mother's Day. We then spent the rest of the day waiting for the testing, and the calls to be made to transplant teams. It was a difficult 12+ hours. I can't explain to you how we felt listening to the sound of our steps echoing down the hallway as we walked alongside T.J.'s bed to the silver elevator doors that would take him away from us to the awaiting surgical teams. I don't have the words to express the gratitude we feel for the many medical professionals who cared for him over the 3 1/2 days he was hospitalized; to our friends who worked in the hospital and cared for him - Andrea, who performed his last CT Scan - her boys grew up and played with ours, and Michelle who prepared him for his donation surgery.
The days after we planned a funeral, held a wake, then held a funeral. In all, it's a week every year that I relive. Every moment. People don't realize, the world goes on. I know it does, and I'm grateful for it. However, the pain is always just under the surface. I have zero patience this time of the year. Zero. I don't wallow, generally. We live the happiest lives we can, we see the joy and beauty in many things. I just have zero tolerance at present.

While this has been a long post, and I thank you if you've read to the end, there's a lot I've left out. T.J. is our hero. Five people who were dying are alive today because of his major organ donation. His heart, kidneys, liver and pancreas were transplanted. His lungs had developed a slight infection from being on a ventilator so he couldn't donate them. His pancreas was ultimately rejected by the recipient's body, but it kept the man alive long enough to receive another transplant that was successful. Two people who were going blind can see because of T.J.'s donation. Countless others have received bone and tissue donations. If you aren't an organ donor, won't you consider it? It's a very easy process that you can take care of when you renew your drivers' license. You can also register online at Donate Life America.

4 comments:

  1. I am so very sorry for your loss Lori. You have suffered in a way that no one should ever have to and I hope that you do find a sense of peace. Take the time you need. I am sure TJ would want you and your family to smile and see the beauty in life that surrounds you.

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  2. Thank you so much for sharing T.J.'s gift. Though nothing will ever lessen the pain of that terrible week, Lori, I hope in time the blessing of helping so many other families will make the memories more tolerable. If even one reader of this post were to choose organ donation, what a wonderful result that would be!

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  3. Loss is always hard; I cannot imagine how much harder it is when the loss is your beloved child. My sympathies.

    I am an organ donor and have been for 40+ years. I have a living will and have advised my loved ones of my wishes. Thank you for making that choice and encouraging others.

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  4. I'm terribly sorry for your loss. I can't even imagine.... all that you've been through. You did a beautiful thing donating his organs and giving life to others. I'm sure that was the hardest decision of all.

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