August 20, 2007

August 20, 2007

Today is two years since the day Theo first got sick and we received the diagnosis of a brain tumor. I think it might be hard for some people to understand, but for me, this significant day is in many ways, worse than the day he died. It’s kind of a two fold day. It is the anniversary of the day our lives changed forever, a day of immense trauma and fear, the day that marked the beginning of such pain and sadness, but as he died exactly 6 months to the day of diagnosis, on February 20, 2006, August 20 also always will mark the half year of his death anniversary. So, it has been two years since the day we were told our baby had a brain tumor, one and a half years since he died.

Yesterday, we repeated our ritual begun last year, taking down to the PICU goodies and treats to thank our nurses and staff for their kindness, their support, their genuine concern and expert care throughout the month that we were there in the hospital—most of it in the Pediatric Intensive Care Unit. We saw three of the nurses who worked with us, Nurse Judy who is a master’s level RN and is like everyone’s mother, Nikisha, so loving and caring toward Baby, and Debbie, who was just starting out while we were there. She learned how to be a good PICU nurse while caring for Theo. We left a cake and a bag of goodies for all the staff there. One day, none of the nurses we know may be there, but it’s ok. The nurses who are there will be carrying on the kind of work that makes the lives of families going through such pain and heartache just a bit easier. We also saw our favorite security guard Officer Gail who gave us hugs and had a big smile for us. I can’t say it was a happy visit, but it made us feel good to be able to say thank you. After the hospital visit, we went to breakfast and then to visit the Angel of Hope statue in Hollywood Cemetery—the beautiful bronze angel who looks over all babies and families who have lost them.

I didn’t think today would be so bad, last year was very difficult, watching the clock, going over the events as they happened one year prior. This year does not hold those kinds of sequential remembrances—though if I let them, the memories could come. They are always there. I slept badly, with worried dreams, storms raging through the night. It is hurricane season. On the way to work, as the radio talked about the progress of Hurricane Dean, I remembered that other hurricane that struck while we were in the hospital with Theo. I remember driving and listening on the radio to the damage that kept coming, more and more homes and families lost, people dying, pets dying, everything, everything they had washed away in the levee breaks in the wake of Katrina. I felt numb listening and I wondered how much more I would care if my own whole world hadn’t been falling apart right then as well. Hurricane season. It was almost as if our lives were hit by a hurricane as well. The big difference between Theo’s death day and the tumor diagnosis day is the trauma, the surprise of the impact, the sudden devastation, the washing away of a dream of a lifetime in the space of seconds. How your life can change in just an instant, while you’re vacuuming the floor.

August 20th was filled with trauma after trauma. The hurricane hit and we tried to get through all the damage without losing our sanity—the diagnosis, the brain surgery, the ventriculostomy (another surgery), the constant fear and stress of watching mounting ICP numbers (intracranial pressure), the monitors, the EEGs, the increases and decreases of seizures, the changing of the medicines, trying to assess the damage long term to our baby, to his perfect little brain, waiting to hear what kind of cancer it would be, getting through the first round of chemotherapy--painful, so painful to watch. The ground beneath us was feeling a little bit more solid, we were adjusting to these changes, understanding more about the situation, assessing the changes that would be made to our lives, to Theo’s life. Then the levees broke. The complete neurological devastation occurred. Never would we have the same baby again. His entire cerebreal cortex was destroyed. Never would he learn to walk, talk, probably never be able to eat on his own, probably never be able to do anything for himself. The tumor was very aggressive, most rare, prognosis very bad. To protect what we had left, we took our baby home, to protect him from any more pain and suffering. We wanted to make him comfortable, help him feel peaceful, loved. No more brain surgeries, no more nasty chemotherapies. No more pain if we could help it. When he died, we were there, we were expecting it, we were loving him and holding him and protecting him from the ravages of any more storms. The day the tumor hit, we could protect nothing. Our whole lives, our whole family, changed in an instant. When the brain damage broke, hopes were leveled, our hearts crushed. We could only form a protective circle around our baby, around our little family together and try to make it through as best we could.

That day, August 20, 2005 changed everything forever, ripped through our lives and hopes and dreams like the worst storm we could have ever imagined. Two years later, we are still re-building. We honor our son’s life in every way we can, we try to find peace in his death, gratitude in his life. But in a small corner of our minds, we will be in that hospital room forever, feeling scared and powerless, praying, crying, bent over our sweet, tiny boy in such a big hospital crib bed, the iron bars cold and hard. Trauma sticks in your mind like snap-shots, click, click, click, every now and then finding ways of bursting through the small bit of peace you may have found in it’s aftermath. Those snapshots are always there. The way to get through life with those snapshots still in the picture-book of your mind is to try to hold the good parts closer, examine the memories of peace and love in the forefront. Recognize that the trauma happened, somewhere in your mind it may still happening, but also never to forget the love that happened. Remember that following the trauma, sometimes right in the midst of it, was peace, love, support from friends and family. And even if the traumatic moments have left their deep impressions, so have the good, the love, the peace and even the hope. The hope may not be what we initially hoped for, but a new hope can come in it’s place: Hope for continued love, moments of peace, balance. Hope for the ability to live my life as my child would want me to. Hope for good. Because in a world where hurricanes can wipe away so much in an instant, there is also the potential for peaceful waters, for lush gardens, for soft breezes, for the hearts of people who love us and support us, for life and love and spirit that goes on after the storm has passed.

Please do visit Theo's new memorial web-site at www.babytheo.virtual-memorials.com