Making the Decision to Leave the Workplace to Care for My Son With a Disability

The decision to quit my job and stay home with our disabled child was one of the hardest decisions that my husband and I ever had to make. In 2010, our son’s health caused me to miss many days at work. Our child had just been diagnosed with a rare condition called Schwartz-Jampel syndrome. Between illnesses, doctor appointments, therapy appointments and falls, I had missed so many days from work that I was receiving written warnings from my supervisor for my attendance. I was worried about keeping my job, but I was also incredibly worried for our 2-year-old son.

The final straw was a terrifying phone call I received from our babysitter while I was at work. I answered the phone to a frantic voice on the other end explaining that Giovanni had fallen on the porch and cracked his head open. The bleeding wouldn’t stop. I sent my husband a text message that I had to leave work again as I ran out the door to rush Giovanni to the emergency room. I explained that I worried this would be the final straw and I would be fired. My husband, who was working as a package courier at the time, suggested that perhaps we needed to consider if it was time for me to stay home and be Giovanni’s full-time caregiver.

After four hours in the emergency room and seven staples in Giovanni’s head, we could finally go home. I was so worried I was going to lose my job. I was worried about our finances, especially since our son’s hospital was a four hour trip each way. I knew deep down he needed me with him every day, but I couldn’t stop worrying about money. I was also very proud of my job and the fact that I held a good position in the company.

When we opened the door to our home, we were greeted by my husband who had just gotten home from work. He saw the terror in my face. The fear I had for my job. The sadness because Giovanni had fallen again because of his condition and required medical intervention… again. My husband pulled me into our kitchen, took my hands and said, “Honey, it’s time. You need to stay home with Giovanni. He needs you and things aren’t going to get better for him. It’s only going to get worse.” I remember tearing up and saying, “How? How can we make it on one income?” My husband replied, “We will make it. We will make it because we love our children. He comes first. Trust me. We will figure this out.”

We spent hours that evening talking about it, and in the end I decided my husband was right. I left my job with a huge knot in my stomach. I knew I was doing the right thing for Giovanni, but I was unsure about our financial future.

Seven years later, here I sit knowing we made the right choice for our son. Giovanni has gone through nine surgeries, months of rehabilitation, and hundreds of trips to a hospital that is four hours away from our home. He currently has his tenth surgery scheduled in just 15 days. Lord knows none of this has been easy. Financially, we have more hard times than good, but I believe with my whole heart that we made the best choice for Giovanni. I know that because I am his primary caregiver every day he is thriving. He can go to physical therapy every chance we get. We have the time to complete therapies with him every day when he get home. When he was too sore to go to school every day last year after his hip surgery, I was there to make sure he didn’t fall behind in his studies. While doing all of this, I even managed to attend an online college and receive my associate’s degree in communications. My hope is one day I will find a work-from-home position, so I can get back to work and still have the flexibility in my schedule to keep Giovanni healthy.

If you are struggling to make the decision whether or not to become a full-time caregiver for a loved one, please take the time to decide if it is the right decision for your family. I am only offering you our story and how, for us, this was the best decision we could make for our nearly 10-year-old son. Believe me, I know this feels like an end of the world decision to make. Looking back, I would make the same decision, and I sit here with zero regrets even on the financially tough days. It is not a choice to be made lightly, but sometimes it is the tough decisions that we, as parents make, that become the best choices we have ever made for our incredible children.

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