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The Fear, Anxiety, and Panic of Parenting a Medically Complex Child

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.

 

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11 thoughts on “The Fear, Anxiety, and Panic of Parenting a Medically Complex Child

  1. Oh, Katie. I hear you. Just know that any decision you make will be the right one. I hope to see you when I am in Minneapolis next week. Jane Harmon

    1. Katie you are in Minneapolis? We are too. You crafted the words I think & feel but don’t want to utter. I send you & your family prayers of moments of peace & moments of sparkle because it’s those flickers that help in that day. Hugs
      Heather

  2. You’ve done it again!!! You have taken the thoughts (fears & anxieties) from my head and put them perfectly together! Thank you for writing this post!

  3. It gets so overwhelming. Muscle/skeletal, cognitive/brain, heart and lungs, and yet there is some semblance of normalcy. He’s still okay at the moment, it hasn’t gotten worse yet. But he’s like a ticking time bomb. The worst part is knowing that it’ll get worse, that he’ll deteriorate and this nightmare won’t end.

  4. Could have not been written better. I personally have lived that experience with my 1st daughter w/special needs and as time went by medical complications became part of her life which in turn created a turmoil in how my life had to adapt to hers as a mom and full time caregiver. It’s now 3mo that my daughter has passed and has no more suffering. Those dark thoughts you mention have lots of times crossed my mind aswell and leaves you wondering how much longer. Suddenly it hit me, my daughter who I’ve cared for 29yrs, who kept me busy 24/7 and some thought me how to manage n make time to take care of everything going on in my life, It’s like I was superwoman capable of handling it all the rock of my household, now she is gone and I realize she made me the woman I am now. It brings to mind that saying “be careful what you wish for” Now I feel weak, at a lost with all this time I now have.. To all those parent or caregivers that are or were previlaged to provide for a special needs or medically complex child feel honored to have been the chosen one you were only given the BEST!! ๐Ÿ’”๐Ÿ’”

  5. I too, get so tired of people asking “How we do it” or saying “I don’t know how you’re able to do it, you just keep holding it all together..”. You know as well as I, there was never a choice –
    I read a blog from another Mom awhile back – and I can’t put my finger on it directly right now, but she said it so perfectly.
    We have been throu enough that we would qualify for having Post Traumatic Stress Disorder (PTSD), but with us, there is no “Post”… instead we live in a perpetual state of raw anxiety – and we are always just waiting for the next shoe to drop.. because it’s absolutely going to drop!
    We (like most of the other parents that can relate) don’t necessarily live close in proximity… But we are out there. And it settles my mind to know we are not alone. There are other Mom’s and Dad’s facing the same kinds of daily struggles.
    May God Bless You and Your Beautiful family.

  6. This is beautiful. Thank you for opening up and being honest. I love you. I truly do. I’m here for you and the family. If you need anything whether it’s to talk or just whatever you need I’m here for you and your family!!

  7. This hit me like a hammer in the heart. My grandson is like this. None of his systems are normal. He was born with a devastating genetic deletion. The ob-gyn advised aborting him. My daughter could not do it. He wasn’t expected to live one year. He is 19 now, and still, and always, completely dependent.

    I am sending cyber hugs in my thoughts.

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