It is my sincerest hope that now that people are experiencing what I’ve experienced for a couple of decades being “stuck at home” with my son, they will no longer say or imply insensitive things to me such as “you’re so lucky”, or believe is a “luxury” or “must be FUN”.
The truth is, it’s not a “vacation” not to be able to go to work and it certainly has made me feel like a failure over the years for not being able to have a career. I even had people say I must be “lazy”. Lazy?
Let me tell you how “lazy” I’ve been in my life.
By the time I was 24 years old I was the manager of a Domino’s Pizza store and had 30 people “under” me, with dreams of becoming a franchisee. I would end up winning awards and managing various stores successfully. I even went to Michigan to take Franchise Classes. Considering I couldn’t even speak English when I came to the US at 18 years old, I believe that to be quite an accomplishment. I’m not sure that I ever believed that life was fair, but I had always thought that hard work could get you places. Not being able to franchise a Domino’s Pizza store, however, was the first real challenge to that notion, a sabotage of my ideals. To blame was the franchisee that I worked for, who refused to give me a referral to the company because he had given one before and got “burned”. Nice, huh? I never got over it.
After that, I was hired as an Asst. Manager for “Babbage’s”, a computer/video game store at the mall, and within a year I was Manager of my own store, with dreams of becoming a District Manager. Unfortunately bad luck followed me there as well, as the company went bankrupt a few years later.
I was then hired at MicroAge, a Computer distributor and I loved it. Within a few months of calling to procuring accounts and fielding customer questions I was doing so well I was told that I was next in line to become the Microsoft Representative for the company, which would have meant a huge bump in salary.
Then Nicky was born and diagnosed within 12 hours of his birth with Epidermolysis Bullosa. He had blisters as big as a fist everywhere. It was horrible. I had been planning to go back to work, but I just could not leave him. No way, no how. He needed me. Period.
Our ability to live as a single income family was nearly impossible. We sold my car. We sacrificed, no longer went out, gave up cable, eventually we lost the house, and within a year we were in bankruptcy court, because not only we lost my income, but the insurance refused to pay for bandages and other supplies needed to keep Nicky alive. So much FUN!
Not working is not fun at all. It can have a significant impact on a person’s sense of identity, finances, sense of purpose and overall quality of life. Spending an extended amount of time at home can, quite frankly, become boring and isolating.
As a special need mom being “home” meant staying away from germs, people, and dangers of the outside world; things that could hurt my child. My house became a prison, and yet, it’s the only place I wanted to be, because I got to have my child in my arms — which is the only thing I wanted. Except, if I’m being honest, I also wanted the life that I thought I was going to have. We cannot have everything, can we?
When Nicky’s dad and I got a divorce when Nicky was 4 years old I “had” to go to back to work, and it was a nightmare, plain and simple. A nightmare! With my ex-husband’s help I secured an interview with his company, “Insight Computers” and got hired immediately. I enjoyed my job, and I even went from being stuck in the “customer service” chair to get a quick promotion within a few months to the “Web Team” (I loved being a Web Designer!), but Nicky’s health deteriorated considerably during that time. What was also extremely hard was the the constant asking for time off to take Nicky to the hospital or to this Doctor’s appointment or to get bandages done… I want to cry thinking of that time. It was difficult to say the least.
When I decided to move to California I was able to start working from home with Insight, and that was great but still not exactly ideal for Nicky. Several months later they “let me go” after 9/11 and what kept me afloat financially was unemployment at first, and then the IHSS program of California, which is a program that helps Seniors stay in their homes by paying for a Caregiver, but it also helps those that are disabled, so my job since then has essentially been Nicky’s caregiver. Yes, I am lucky that I live in a state that recognizes the needs of the disabled. That’s my “luck”.
Being in the EB community and in a community at large with many medically fragile children I’ve talked to many other parents and I noticed that I was not the only person who was forced to make a choice between my career and my child. Of course it has a lot to do with how severe our children are, and those whose children are as involved and as sick as mine truly have no choice. Working outside of the home can be incredibly incompatible with our home life. In fact according to a survey done by The National Survey of Children With Special Health Care Needs, more than 30 percent of parents end up leaving their employment to care for their child.
One of the main reasons why this is so prevalent in the Special Need community is because daycare facilities simply do not exist. Many Day Care Centers are unable to accommodate the specific needs of these children. Nannies and private home worker salaries can be financially impractical for many families. Many of us end up at home because we have no one else to manage the complex needs of our children in a safe place. It’s the only option we have.
I read in a book that Patients and Caregivers suffer from the three Is” Loss of Independence, loss of Identity, and Isolation. That is so true. We do try to distract ourselves, many of us develop hobbies at home. It is what it is.
Please know I am not lazy and this is not fun, but also know I love my son with every fiber of my being and I wouldn’t have it any other way.
Love & Light,