For the past five years, I have spent my life in a blur raising my child that is medically fragile. The days seem to move so slow, but the weeks and years seem to speed right past as my son grows. My world has been anything but typical regarding parenting, and I have found myself looking through a dirty window from the outside looking in at the parenting world. I’ve never really fit in with other moms, and I’ve struggled to connect with others in regards to the daily struggles I face with my son.
If I am truthful, my emotions on a daily basis have a wide range of happiness to complete and total hopelessness. I find myself walking a tightrope that is contingent on the health and well-being of my child. As a mother, I assume that many moms are also very wrapped up in their lives of their children, but for me, I feel like it’s not just wrapped up in his life but instead wrapped up in whether he will live another day. I think of the hard days we have spent in the hospital, at the doctor clinic, or having labs and tests done to figure out his declines. Then I reflect on the surgeries, and all the measures we take on a daily basis to ensure he lives another day, and I feel drained. I feel sad that he’s been given a very raw deal in this thing called life, and I find that my anger about his illness permeates all aspects of my life.
When I’m running on fumes, I find that most days my emotions are all over the place. On the hard days, and there are many, my feelings and my thoughts go to places that I hate to admit. I find myself having thoughts of anger, jealousy, and resentment toward parents of children that are healthy. His health is so complex, and I feel totally cheated of a healthy child. I feel bad he has had to walk this very difficult road, and I’m angry that he has had to suffer so incredibly much in such a short amount of time. These are the days it is the hardest for me to listen to parents of healthy children complain or vent about their emergencies with their children.
On my tough days, I find myself rolling my eyes, muttering under my breath, and feeling complete detest for their complaints. I listen as they talk about bumps, bruises, 2-hour trips to the ER, ear infections, or strep throat, and I wonder if they realize how incredibly lucky they are that this is what is HARD in their lives. The anger builds up in my chest, and I think about the month-long stays at the hospital, the sea of doctors that are on our team, and the cabinet full of medicine I have to keep my son alive. My thoughts then move to the surgeries, and the recoveries I’ve had to travel through with my son. I wish with all my might that the only thing I had to complain about was an ear infection that took two rounds of antibiotics to clear or a broken bone from a fall that these parents have experienced.
My anger, my bitterness, and my jealousy can consume me in these moments. I wonder to myself if they have any idea how minor these experiences are in the grand scheme of life, and I find myself further withdrawing from the world around me. Honestly, I hate these feelings, and I know that my experience of watching my son fight for his life has completely changed me. I carry scars and trauma with me every single day, and the battle wounds make it harder and harder for me to relate to anyone around me. The honest to God truth is – it has destroyed my ability to have empathy for anyone.
I use to be a person that could relate and sympathize with any of my friends. On most days, I had no trouble dropping what I was doing to be there, to listen, and to help them through their darkest days. After five years of raising my son, my empathy tank is utterly devoid of gas, and it’s sputtering and stalled out on a dusty, deserted road. I have nothing left in me to be there for anyone – even myself.
Despite these dark emotions, I try hard every single day to not let these feelings consume me or steal my joy. I have to stop and evaluate the source of these emotions, and I have to try to understand why I’m having these feelings. No part of me FEELS that my friend’s trials and hard days are less important than mine. In my heart, I know that what is hard for one person is easy for another, and I have to remind myself everything comes down to perspective.
My perspective of raising my son has wildly altered what I think of as an emergency, trauma, or a horrible experience. Had I walked down a different path an ear infection may be a terrifying experience of my parenting life – and I have to remind myself that my scars are not my friends’ scars. They have not seen what I have seen, and it’s not a competition of who has the most difficult life. All of us will walk this world and experience trauma and tragedy. Each of us will form our views of the world based on our experiences, and my worst days might be different than someone else’s worst day. No matter what caused the bad moment, it was bad for them. I have to remind myself that I cannot allow my son’s health and our trauma to jade my empathy for other people.
Staying positive is not easy for me to do. Trust me, I still find myself having those ugly thoughts, and my ability to empathize can feel impossible. I started using this phrase early on that seems to help me anytime I’m feeling this way – I say to myself “Fake it until you make it.” If I have to FAKE empathy to be there for my friends – I will! Quietly, I bite my tongue, and I stop those feelings that are taking over my brain. I remind myself that my friends are entitled to have their dark and terrible days. Our lives are not a competition of who has had it worse, and I can still grieve with their grief and cry with their tears. No parent wants their child to be ill or be in pain, and no matter what level of pain or illness it is – it still matters, and it is always important.
Even though the road I have traveled is littered with surgeries, lab draws, IV poles, and medical supplies, it doesn’t mean my child’s suffering is any more significant than anyone else. Every single person has their suffering. If I want to be a happy person, I cannot stay stuck in those ugly feelings.
Here are a few things I have learned with help from my therapist and my pastor.
It’s Ok to feel what you do – grief, jealousy, and anger are natural reactions and emotions
It’s Ok to acknowledge your grief and pain
It’s Not OK to project your anger or pain on to a friend or family member
It’s Not OK to minimize others suffering because everyone suffers
Remember life is about perspective -and we all have different views on what is hard for us
When in doubt, fake it. Be happy even if you can’t
Bite your tongue if you can’t say anything nice
Take a deep breath and remember that these feelings and emotions will pass
No matter what – remember that part of this journey is that you will have ugly emotions. There is no shame in admitting you have these feelings. To move forward, try to remember that the only way ahead is to move past those feelings. Staying stuck in grief and anger will only make you angry and depressed. Reach out to friends, family, or to professional counselors to work through these feelings. No matter what – always remember -your best today will be your BEST today – and give yourself the grace you deserve to make mistakes and learn from them.