Without a Crystal Ball

Our Journey through Chronic Illness & Autism

It was a year ago that our lives were turned upside down. We had just found out about our son’s serious heart condition. The Cardiologist was so concerned about his heart that he believed surgery was within weeks. We waited with bated breath to find out what the surgeons wanted to do about his bad valves. Our thoughts were consumed in the danger and unknown that laid before us. The thought of my son’s chest being cut open to repair his heart was terrifying, and I could not think of anything else at the time.

It was a year ago that I called my employer to tell them the news. I was terrified because I knew it was another thing to add to “what was wrong with my son” conversation we had been having for years. For months, they kept asking me to focus. I was told that I needed to think less about my son, and do my job. My calls were pulled and audited,  and they would berate me for bringing up my son with my customers. I was in a place where life was consumed in his health and diseases, and the only reason I was working was because of the outstanding loans we had. We had recently built a home that was safe for our son, no mold, no leaky windows, no insullation issues, and no mice. Big loans and bigger payments were due, and the only way they were made was through working. For 3 years, I was pulled away to deal with his hospitalizations, diagnosis, therapy, and the scary unknown of what was to be for his life. I was scared telling my employer that something new had popped up. It was clear that day their patience with me, someone that had devoted 12 years to them, had run thin. No longer were they understanding my serious situation and instead they were threatening me. With no known plan, I hung up the phone, called HR and went on unpaid FMLA leave.

I couldn’t take the pressure anymore of an employer that didn’t care about our family. Within 1 month, I had officially resigned, and we were left to pick up the pieces. We were left with loans, debt and many unknowns, but we pushed through with the tremendous help of our friends, family, church community and strangers. At the time I was worried I had lost my identity. My entire life was wrapped up in being a corporate climber. I had no idea how to be a mom. There was nothing in my DNA about sitting still, and I had no idea how to not contribute financially to my family. I was worried I would be called a freeloader, a leach, and that our family would be ridiculed for using public disability assistance for our son.

Within a few weeks, I started to find a rhythm with my life. I was cooking more, attending all his therapy, I was more engaged in his care, and the most amazing part of all of it was I developed a relationship with my son I had never had before. In all the time I was working I never had time to really get to know him because I was consumed in arranging his care. There was little time left for me to really enjoy being with him. Leaving my job freed up that space. I learned my son was not just a chronically ill and medically fragile child. He was a child that loved dinosaurs, cars, trucks, and trains. He loved to run, jump, swing and climb. His heart was kind and sensitive, and he loved more than anything to be cuddled and hugged by his mom and dad. I learned what made him scared and nervous, and what made his heart sing. We were able to work together on ways to alleviate his fears to many sensory stimuli. I was able to finally take charge of his feeding disorder, and he was finally able to start preschool.

I think even more important in all of this was I found my own identity. My entire life had been wrapped up in being and appearing successful, that I had let go of all the things that were once important to me. I forgot about how my dreams as a child were never to be in a corporate job. My dream was always to be a writer, and I was always an advocate as a child. I was a young feminist shouting for women’s rights, I became a vegetarian shouting for animal rights, and I studied and earned a degree in Spanish and became an advocate for the immigrants in the US and worked with immigrant families. Somehow I had let greed and looking successful chase me away from my fundamental morals. This past year I was able to reengage with that person. I was able to learn about sustainable farming and purchase meat and poultry from farms that were humane and kind to their animals. My writing took a top priority and I became more invested in writing and advocating for children and families in our situation. I learned how to bake bread, found ways to reduce chemicals in our home, and got back to the little hippy girl I was at 20 years old.

In the community I was able to connect with others, and we formed a parent support group for families raising children with special needs. My husband and I were able to serve more at church. I started volunteering for Meals on Wheels as well. When I was working, I was not present in my life. I was a cog in a wheel, and all I cared about was money. The money was effecting and driving every aspect of my life. Walking away from that money, gave me the space and time to realize that money should not be a driving force in our happiness. Our lives are a lot different financially, but it’s ok. We have a roof over our head, we have food on our table, clothes on our back, and we have become resourceful in how we spend our money. There isn’t a lot left over for emergencies, travel or extras but it’s ok. We have each other, and together we can navigate it all together.

Walking away a year ago was the scariest moment of my life. Today I can say with certainty that it was the best decision of my life. What I thought life was suppose to be about was actually a lie that is perpetuated over and over again in our society. We don’t need to be rich to be happy. In closing, I will remember the wise words of my former Neighbor Duane Googins, “I would rather be rich in life than rich in money.” Amen.


2 thoughts on “A year Later: How Making My Son with Special Needs my Priority Brought me Happiness and Fulfillment

  1. bethanyk says:

    What an amazing life! How inspirational you are to have walked away from one thing and walked into your real life with your real identity. So cool!

    Liked by 1 person

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