Friday, December 7, 2012

The eyes of a child

It's been the kind of night that started with a relaxing look on Facebook, that degenerated into a hot shower with sobs, tears, and a swollen face from so much crying.

I've been carefully following the story of a local 2-year-old boy who was hit in the head about 6 weeks ago by a large tree branch that fell on him as he played in the yard of his daycare facility. Total. Freak. Accident. He has severe brain injury--I'll just put it that way. About two weeks after that terrible event occurred, a 4-year-old boy in another part of the U.S. was also pinned by part of a tree that fell on him while he played in his grandparents' backyard. Another case of terrible timing--freak accident all the way. He seems to have sustained even greater brain damage, caused by lack of oxygen for a VERY extended period of time. The 4-year-old boy was discharged home today. Initially he was intubated, and according to the parents, when the day and time came to extubate him, they had fully prepared themselves for him to pass. BUT, instead, he breathed on his own. His vitals stabilized and he got stronger. Of course, the one thing that doesn't know how to fix itself and regenerate--the brain.
Ah, the brain. In my opinion, it's our true life force. It is what makes us who we are. And so they took their baby home today and will continue to pray for a miracle--a miracle of full healing. Without that miracle, they have been told their child will remain in the state he is currently in--unable to move, swallow, eat, or see clearly.

And as I read the blog, and watched the online news story, I felt horrible for the parents, and imagined their lives and their possible future with their son. And then, selfishly, I began thinking about my own daughter. We chose a different path for Addison. She was born with severe brain injury, most likely the result of a cord injury. Total. Freak. Accident. Twenty-or-so hours after she was born, they intubated her because her breathing and posturing suggested she may have had a brain injury, and they feared she might (as the neonatologist put it) "forget to breathe." Once we had our test results and diagnosis of Severe Hypoxic-Ischemic Brain Injury, and had a good picture of her prognosis (never moving beyond the vegetative state she was born in), it was not even a tough decision to put her into hospice care and let her die. Yes, let her die meaning starve her to death while pumping her full of pain meds in the hope that she didn't have any pain (if she was even capable of feeling pain).

As I read this boy's story, and hear from the parents that withholding feeds through the feeding tube is NOT an option for them, I wonder what the difference is between us. I think it's that they believe in miracles, and we do not. Not even a little bit. Neither my husband nor I believe in a god, a higher power, or a spirit that lives beyond this world. In my mind, your brain is your soul. It keeps all your information, knowledge, creates feelings of pain, compassion, joy, and everything in between.

But I also wonder if it's because Addison never opened her eyes. I wonder if I would have felt differently if she had stared out into forever with her beautiful blue eyes. I wonder if I would have looked deep into them and hoped that she could see me and know me. I wonder if I would have hesitated and hoped that things might change for her. Although I don't believe in miracles--I do believe that traumatic brain injury is incredibly complex, and that individual reactions to the physical trauma vary greatly. I wonder if that played a role in our so-called "easy" decision to let her go. Because when I saw the picture of this little boy with eyes open, staring off with a blank stare, I try to see what's behind those eyes. And if I look hard enough, I could let myself believe I see that he's seeing me back. I wonder if I would have felt that with Addison. I wonder.

But the fact is that she didn't open her eyes. But she did breathe on her own. There was no dramatic moment of removing the breathing apparatus and saying our goodbyes as she struggled to breathe. I cannot imagine how that would feel. Ours was a somewhat slow process...just waiting day by day to see how long she could go without fluids before she succumbed to death. It's sick to think about it. It makes me sad and angry. It makes me angry that 3+ years later I think of her every day and wish I could turn back the clock. Of all the stupid mistakes, bad relationships, dumb things I've done in my years of life, I wouldn't change any of them. But if I could go back in time to the day before Addison stopped moving, I would do it. I would go back to October 26, 2009 (back an extra day, just to be safe), and I would demand a c-section. I would be so drastic as to cut my abdomen to the degree where they would HAVE to do a c-section. I would save my daughter's life.

We're coming up on Christmas, and with an eager 6-year-old and a sweet jolly 21-month-old, there is much planning and celebration around the holiday. And it's the feeling of actual feelings that bring the pain to the forefront, I think. We hung our stockings, and we hung one for Addison. I can't bear not to hang it. But all the fun traditions have become less fun after Addison died. It's easier just not to feel much--to get stuck in the mundane boring life stuff and feel nothing, than to feel the happiness and the pain that goes with it. And it's not fair to my beautiful living children that I feel this way. To feel that sometimes I have to muddle through when I should be doing things with a cheerful heart. I know I will do the very best I can, and that is all I can promise.

And as this holiday season comes into full swing, I will continue to follow the lives of these 2 young boys and their families. I will not pray for them, for that would be futile. But I will think of them and hope for the very very best. And that, too, is all I can do.


  1. Rebecca,
    Addison did know you. She knew your smell and heard your voice. She felt your love and your warmth. I am so sorry you are without Addison. I know it is hard to carry on sometimes when there is sadness underneath. You are a wonderful mom to your boys and to your beloved daughter.

  2. I just love you Rebecca. We may be more similar than we know. I hate that you even had to make a decision like that. I didn't get to choose. My child died presumably from a cord accident just before she was born. She didn't breathe outside of me. No decision was to be made. if I could do one thing different in my life it would be to go back to June 28, one extra day just to be sure and demand a c-section. I would cut her out myself if necessary just to save her life. but I wonder, at what point would she have sustained a brain injury and at what point did she die. I am a physical therapist and I have seem the ravages of brain injuries on people and their families. But like you said if these small children had already lived in our lives, would the decision be different? I know I pretty much would do anything to keep my child alive and pray to a god I don't necessarily believe in for a miracle I don't believe in. Even though I have seen what that means...I also know my heart would allow nothing less...and that just fucking sucks. I know my husband has said, what if something was wrong with her (Camille), I think he would rather a dead child than one with special needs and that breaks my heart. he used to be a special education teacher and has a very different perspective, but a mothers love transends those barriers... I think. Ugh. Everyone always thinks the worst case scenario is a child with missing limbs or a genetic disorder, nobody ever says: "I hope my baby doesn't die"
    In my sleep deprieved time, I often look at my two living children and wonder if this is the way "it's supposed" to be...because I love all three so much and if I had Camille I wouldn't have Harlow, but that time machine I speak of...well if Camille lived I wouldn't have to know the heartache of loss, of the depth of pain and anguish I have felt and that is a huge thing to trade up for. One live girl and the lack of life without that loss. Oh man. Sending giant hugs to you. I am hoping for those families right along side you.