Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Dear Sir,

I know you don’t know better, but I truly was bristled by our conversation. I know it’s part of your job to understand the financial position of your clients, but it was really embarrassing for me. I never imagined myself in this position. It was not a part of my plan to be in a place where I wasn’t contributing to my family financially. My family had always planned to be a two income home. When I was trying to explain to you why I was no longer working to care for my medically fragile child, you assumed it was because my “maternal instincts” kicked in. I don’t really know what you mean by that, but I assume you meant well. Then you said, “I assume you are a homemaker now.” Most women would naturally do anything in their power to care for their child, but this was not about “maternal Instinct”. This was more about a corporate environment and a society that is less concerned about family crisis and more concerned about bottom line and profit.

You see, kind sir, I had every intention of caring for my child and continuing my career. I spent my youth in college studying and earning a Bachelor’s degree. There was never a time in that process that I said, “I am earning this degree so I can become a stay at home mom.” Nope. I wanted to work. It was a part of my being, and my drive was to be successful. After I graduated from college, I went to a large corporation and I started my climb up the steps of the good old boys club in the financial world. It was fairly quick in this climb, that I realized the financial world was not for me. After 4 years looking at credit reports, income taxes, and pay stubs, I knew that my heart was craving something more meaningful than managing money. At age 25, I was recruited to a new company that was looking for top talent. I felt really proud to have a company woo me to their organization, and I was excited when I was offered a job. My first day still feels like yesterday, and I remember saying to my new colleagues that I was going to retire at this organization. My plan was to be a life long employee, contribute to this organization, dedicate my time and energy to their mission, and hopefully save for my future with a 401k.

The first 5 years of my career were fantastic. I found myself climbing high, earning praise and financial gain along the way. I saw my salary climb, and I was able to purchase my own home as a single woman at 26. Everything seemed to be going great, and I even was offered the opportunity to work from home. My salary continued to grow, and I was starting to really feel good about the direction my life was taking. I got married, and my husband and I were able to start saving for our future. In 2012 I became pregnant, and by October I gave birth to a son. Life at that point flipped upside down. My child wasn’t born healthy. There were a lot of issues from the day he entered the world, and in the four years he has been on this planet the issues have not stopped.

Initially my employer was understanding, and they were pretty kind in giving me extra time off to care for him. Over the years though, they started to lose their patience. I needed to focus more, talk less about my son, and be more present during the day. There were nights I would lay awake, and I would wonder how I was suppose to do any of that while I watched my son’s health deteriorate. I was compared to other employees that had children battling acute illnesses, and I was told they were able to bounce back. The problem was my son’s illness was not acute. There was no end date to his illness. In fact, there was no cure for any of the diseases he faced. This was a chronic illness not an acute illness and the comparison drove me mad. As the diagnosis started to pile on, it became more and more apparent to me there was no end in sight.

On this very day one year ago, I was told that I needed to focus or things were going to have to “change”. My son had just been diagnosed with a major heart condition one day before. It was hard to focus on anything to do with work at this point because I was worried if he would live or die. His cardiologist had told us he would need open heart surgery, and we believed it would be within weeks. There was no way that work could be a priority at this time. I went to my employer hoping they would be compassionate to my plight, but the conversation went the exact opposite way. I was met with a coldness in my tone of my employer, and I knew immediately that they were preparing to find a way to fire me. You see, sir, is that after 12 years with this company of dedication on my part, I had become disposable. My numbers and production were lacking, and I was not giving them the desired results they needed. It did not matter that I had been promoted numerous times, had been given numerous awards, and had made them a lot of money over the years. What mattered was that I was not doing it now. Their profits were more important, and my production was sufficient. It was a cold hard reality.

Unfortunately, this situation didn’t just happen to me, but it happens to millions of families every year. Every year people that care for children with chronic illness are forced in to impossible positions where they have to make a choice. It wasn’t maternal instinct that kicked in – it was that I knew I couldn’t pick a job over a child. I wanted to work, and I wanted to continue my climb. There was nothing about becoming a mom that made me want to become a stay at home mom. I didn’t birth him and suddenly want to be a “homemaker” as you called it. You see, I’m not even a home maker. Every single hour of my day is dedicated to him. If my house gets cleaned and a meal gets made, it’s been a fantastic day. However, most of my days I’m managing a feeding tube, asthma from bad lungs and a failing heart, feeding issues, a hormone deficiency, and I’m also trying to help him learn and thrive. I’m not a homemaker. I’m a nurse, a doctor, a therapist, a social worker and a mom. I suppose in a way my maternal instincts did “kick In” as you would say, but it isn’t the way you assume it to be. I was forced in to this place, and now that I’m here I’m not complaining. However, please don’t assume that parents caring for children that are medically fragile and developmentally delayed are not working. My new job is as CEO of his care. Please put that on your forms dear sir.

Kind Regards,

CEO and Founder of the Paulson Home

 

 

 

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2 thoughts on “A Letter to the Man that Called me a “Homemaker” instead of a Caregiver to a Medically Fragile child

  1. Aliya Abbasi says:

    I know where you are coming from Katie!
    My daughter born mid 2013 has complex medical needs, a PEG feeding tube, on oxygen , needing suctioning and with a progressive neurodegenerative disorder.
    I trained as a doctor and worked for 5 years but if seems a distant memory now when I am patronisingly referred to as “Mum”.

    I hate the way people assume you lose your brain when you have a child.

    Good on you for your blog. Sadly people just do not understand unless they walk in your shoes…

    Liked by 1 person

    1. Thank you so much for reading and your comment!

      Like

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