Chug-a-chug-a-chug-a-chug-a-chug-a-chug. I can hear the click of the wheels on the steel tracks, and the horn is starting to get louder and louder. The wind is picking up in my hair, and I can feel the speed I hold on for dear life to the seat on my side. Suddenly, there is a large crash, a jolt forward, and I fall to the ground as everything around me falls and collapses. There is dust, debris, and carnage all around me. The smoke is thick, and it stinks like something is burning. I look everywhere to find the flame and find a way out. Yet, I realize there is no way out, I am stuck in this car that has derailed from the track. The exit doors are jammed tightly closed. The panic completely consumes me, and I find it hard to breathe. My flight or fight response is kicking in, and yet I can’t muster the strength to move my feet or legs forward. I am stuck inside this burning train car, and there is nowhere left to go. Fear races over me, my heart begins to pound, and I can feel the tears start to stream down my face. This cannot be how it ends. There is no possible way that this is the way it will be for the rest of my life.
Except I’m not on a train, I’m not stuck in a car, and nothing is burning around me. I am only living my life of a parent of a child that is medically complex. My life just feels like it has derailed from the tracks. I had created a life that was stable, there was money in the bank, cars in the garage, money invested for retirement, beautiful clothes in my closet, and as many shoes and bags a woman could need. My career had been my primary goal, and I had hoped upon hope that once I became a mom, I would find the balance of a child and a career. For several years I even chased that dream, and then one day I couldn’t do it any longer. My son needed to be seen so frequently at the doctor, and his development was stalling and falling further behind. Daycares wouldn’t take him because his health was a liability for the center. We attempted nannies, but over time he became too complicated and too high needs. Home care nurses were the next step. Then the shortage of nursing hit our family hard. It was then I realized the dream would end. My goals would change, and I would become a caregiver to my chronically ill child.
I wish I could say I’m a stay at home mom. I’m really not anything of the sort. I do make the beds, fold clothes, and try to run errands, but most of my day is chasing around a child that was born with an anatomy that isn’t always conducive to life. I don’t use these words lightly because using the phrase means I have to admit the magnitude of the diseases we face. Nearly every system of my child is affected in some way by his chronic illness. Of the 10 major systems of the boy, 8 of them are either not working at all or are significantly impaired or impeded by the DNA of my child. The only 2 we don’t have to worry about are his lymphatic system and his renal system. Cardiovascular, digestive, endocrine, exocrine, muscular/skeletal, nervous, reproductive, and respiratory systems are all impacted. It’s overwhelming to think about the total number of his diagnosis, and honestly I’ve lost track and at this point, it’s no longer a matter of how many but what are the most urgent needs. I can’t even remember the number of doctors we have, and even this past weekend when we spent four days inpatient, I left out two of our most prominent doctors when they asked me to give a list of all specialists. My brain has no more room left for all the knowledge I need to take care of him, and yet some things are added to my plate every single day.
My days I am filling out paperwork for doctors, calling insurance, ordering medical supplies for our medical equipment, ensuring he’s taken to and from all his appointments, coordinating and communicating the care decisions with all of his providers, and I’m doing everything in my power to keep him alive. I am a nurse, a doctor, a therapist, a social worker, an advocate, a teacher, an administrative assistant, a respiratory therapist, and a pharmacist. Then at the very end of that list – I am mom.
I had this sick feeling that came over me as I was driving in the car today. After spending four days at the hospital, my son came down with a horrible case of seasonal allergies. He’s coughing so hard he’s throwing up, he’s unable to keep his feeds tolerated in his belly via his g-tube, and he can’t sleep from coughing so hard. It hit me so freaking hard, I almost felt like I could not breathe. This is our life – for as long as he lives. He will never, ever get better. Every day he’s fed via a g-tube for nourishment and takes medications to keep his endocrine system working. We are sustaining his life with our interventions, and without the decisions, we made to help him – nature would have taken him away. He really shouldn’t be alive. We’ve made all these choices because he deserves to live, and he deserves a quality of life. His father and I will do everything in our power to help him learn to eat and develop the skills to have the most independence he can have. Yet, there is the very harsh reality that our son is likely never going to live entirely independent. Ever.
I know I am supposed to be grateful he’s here. I am. I love him with my entire heart, but on the days when he is suffering, the guilt of these choices weighs heavy on my heart. Are we pushing him too much, wanting him to go further than he’s capable, and then I think how long can this last? I never, ever want to go there but sometimes I go there, and dark thoughts enter my mind. My child has so many diseases and issues, he might not make it to adulthood. It’s a hard reality to live with, and yet I have to force myself to not look that reality in the face. We hope and pray for miracles to help him have the best quality of life, and we work hard to provide him all the resources, medical interventions, and accommodations to make him as comfortable as possible. We don’t have any idea how far his body will carry him, and there are days it feels like it’s all on borrowed time.
I want the best for him. I push hard to get these thoughts out of my head, to ignore the reality we face, but there are days the truth is so hard to bare. I crumble in a pile on the floor and cry. No parent should have to watch their child suffer. No parent should have to watch their child struggle to breathe, eat, or live. This is my reality nearly every day.
How can you help me or help another mom feeling like this? I have a straightforward message for you to take with you before I go today. The next time you see me or see a mom that is going through this journey with their child – promise me you will try to exercise some grace with them. We need love, we need understanding, and we need friends. This life is lonely, this life is scary, and this life is incredibly overwhelming in what we need to do for our children. Please help us by lending us a hand, giving us a hug, and telling us that no matter what we will be ok. Lie to us if you need to -just please don’t ask us how we do it or how we cope. We really don’t know. We just do.