Today, while I was at the hospital making rounds with the discharge planners, my co-worker ran into an old friend of hers. As they began to catch up on the past couple of years, they discussed the friend's son who has CHARGE syndrome. This syndrome is a combination of multiple defects, including Congenital Heart. She told me the story of her son, Isaac. They found out he was different in utero, as did I. When he was born, the doctors told her that her child would have to have a tracheostomy placed if he were to survive. They proceeded with the trach along with 39 other surgeries in his 10 years of life, he is still living. She talked about how his heart surgeries were the easier ones. When he was younger, she worried about how long he would live for the fear of losing him. Now she and her husband worry about how long he will live for fear of the further suffering and who will take care of him when she can't anymore.
She had mixed feelings as she expressed this last part. I am sure partly because she knew that my son had died and partly because there is no way to NOT feel guilt with the thought that your child might be better off not on this earth, not with his mommy. I have met those feelings many times. While I miss my son in a physically painful way, sometimes more than I think I can bear, I would never ask for him to return to the suffering in this world. These are horrible thoughts to feel as a mother, but I completely understood this other mother, even if from a VERY different perspective.
The more I survive this life, the more I know that I am not alone in the feelings I feel. While this should bring me some sense of comfort, it only makes me more angry that these innocent beings have to endure such fates. I look around and become even more aware of misery in this world. I know that this is a dismal way to view life, but unfortunately, this is where I am.
While I was at the chiropractor today, I noticed a magazine that had Dr. Edward Clark on the cover. This doctor is the CEO of Primary Children's Medical Center, where my son and I lived most of his life. I read the article about him and found that Dr. Clark was also born with a CHD. While on one hand, I was touched that this man dedicated his life bettering the life of other children with chronic illness, on the other hand, I am angry that my child was not given the opportunity to grow older. Maybe he was given the opportunity and declined, what then? Well then I am angry that I could not go with him. I thought we were a package deal! I would and did give everything to that piece of me. If it had made a difference, I would have given even more, whatever that might have been.
But NO! Instead I am here trying to find purpose in a world that no longer makes sense to me. I am trying to find meaning and enjoyment where in my current state of mind there is none. This is not to say that I don't still laugh. I go to work, I spend time with family and friends, I exercise, I try to find my place, but it is all different now. I am a sinking ship, but I am trying not to take passengers with me. The only problem with that is that I am not very good at being alone right now, go figure. So my family and friends still surround and support me as I try to navigate this new life without causing further damage.
Well, we will see.
Bridger, mommy loves you and misses you!
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