Recently I sat in a doctor’s office with my son and my husband. We were looking at images of his brain, and discussing the litany of symptoms my son was facing. After a long appointment, the choice was clear for everyone, my son needed to have major surgery to repair malformations of his brain. While I knew it was the necessary step we needed to take for him, it was hard to believe that we were at this point.
In fact – a part of my life just wholly halted and my body moved through a series of rapid and debilitating emotions as I tried to make sense of what got us to this very place in time.
First, a complete sense of numbness takes over my feelings. I am physically here in the room, I am watching everything around me, and I see what people are doing – but I am completely disconnected.
I try to touch and feel what is going on around me, but I feel completely and utterly numb. My stomach has a dull ache every single day, and at times I feel like I could vomit. The pain from my stomach stabs me over and over, and no medicine I take makes the feeling go away. I find myself gagging and retching, and trying to soothe the pain. There is no way to ease the pain.
My heart is broken as I look back at all the times I missed the cues he was giving to me. The moments he was in distress and I didn’t see the pain or was unable to understand the cause. People around me tell me not to look back and remind me I didn’t know because I’m not a doctor. There is no way for anyone to say to a mother not to look back with guilt. My sole purpose in life is to raise him, care for him, and advocate for him. If I don’t see something, as illogical as it seems, I am going to feel guilty. My job is to keep him safe and healthy, and I didn’t do my job.
Then my feelings of guilt move to anger to the team of professionals that were hired to manage his care that missed the signs. I find that I want to call and yell at anyone that has been on the team and scream “WHY DID YOU LET THIS HAPPEN!” Their job was to make sure he was cared for and to manage the images, labs, and the medical information they had to make the right medical choices. Unfortunately, the experts didn’t see the full picture and weren’t able to connect the dots even though he was losing nervous system function as the days passed. How could professionals with degrees from top Universities in the country miss the signs, ignore the images, and not intervene earlier? Why did it take yelling and screaming at them for anyone to do anything to help him? Why can’t I rely on the people who I trusted to take care of him? As the anger subsides, I find myself moving to complete and utter sadness. I am sad that my child has endured so much pain. My heart is broken thinking about the fact that he has such a reduced quality of life. I have racing thoughts about all the activities he’s missed, the memories we have not made, and the time he’s spent feeling sick, and no one helped him.
Then the fear comes and swallows me up. I feel almost frozen that my son will have to have his brain opened, have ventricles drained, parts of the brain moved, and hardware attached to improve ventricle flow. What parent should have to deal with brain surgery? Then the reality sets in that when you have one intervention on the brain, it is probable there will be more. I am scared thinking about him dying on the operating table, having a life-threatening complication, or suffering a bleed that could alter his life permanently. None of these are scenarios I ever assumed I’d deal with as a parent, and yet, here I am sifting through these horrible thoughts. My brain moves from fear to panic as I think about how I’m going to manage the recovery. We have no respite care for him at home, my husband has no PTO left for the year, and my family lives more than a 1/2 hour away. We have limited resources where we live, and I am worried about being able to manage his recovery with limited help. I feel like it might break me, and I worry about my ability to multi-task the needs of him along with the care of my home and life that is already in motion.
All I want to do is stop EVERYTHING. I want to press fast-forward and get through all of this to be on the other side. I don’t want to be at this moment anymore. The pain of watching him sick is enough to kill me, and the thought of seeing him after surgery makes me feel like crumbling. If it were possible for time travel, this moment would be the time I would use it and never look back.
Then I feel totally and utterly defeated. I know that there is nothing I can to end the trajectory of the disease my son is fighting, and I know the only way to help him is surgery. The most challenging part for me is forgiving myself for not seeing it, forgiving the doctors for missing the signs, and not hating the world for doing this to my son. We have to keep going and moving, and we have to go through the surgery and the recovery. I just can’t believe this is our life. How is this possible?
No one prepares any parent for raising a child that is medically fragile. There aren’t manuals to help us understand the complex care and the painful choices we have to make for our children. Every single day there are other parents like me, feeling what I’m feeling, and wishing this world didn’t do such terrible things to our children. I wish I had words to make this all better, to stop my pain, to prevent others pain, and to fix our children. I know that all I can do is to keep going, lift the haze, and I have to keep fighting for my child.
What all other parents in this situation can do is pray for results, fight for care for their children, and fight to save their children. Sometimes we win, sometimes we lose, but in the end, we know we really can’t stay stuck in our time warp. We can’t remain stuck in our fear, pain, and anger. Each of us works to find a way to push it to the side to help our children. Even though the pain is excruciating for us, we know that the pain for our children is 100 times worse. With that simple realization, we know we have to be strong for them. We keep on going – even though we desperately wished there was a secret way out.