My ego took a blow today. A grant I submitted was rejected. I figured it would be. It was the first grant I submitted on my own during my “career,” but it doesn’t make the rejection any easier. I think what hurt me most was some of the peer review comments to the rejection that hit hard. It just reminded me that I am a person who chose to delay her career to stay home with my kids. I have only been working full-time at USF for 1 ½ years. Before that, I taught as an adjunct those 10 years since I graduated but mostly spent that time raising my kids. 10 years. I still can’t believe I graduated that long ago.
Some of the feedback I received was along the lines of, this “researcher” completed her dissertation 10 years ago yet has no other research or publications under her name. We lack confidence in her ability to do scholarly work….and on and on and on. They were right. My “career” in academia was put on hold and I haven’t done any research since graduation, nor have I published in my field. That was a difficult, but conscious decision. In fact, the semester after I started my PhD program, I was ready to quit. You see, when I applied for graduate school, I had one child with a disability, Halle, and at the time in 2006, her health was the most stable it had ever been. But two months into school, Ben, at just six months old, had been diagnosed with his second bout of pneumonia. I was ready to throw in the towel, but John wouldn’t let me. He said since we already took out the student loans, I needed to keep going…after all, I need to have something to show for it. LOL
And so I did. In the first year of my PhD program, Ben had 5 bouts of pneumonia, 1 that was double pneumonia and was so severe, we had to call 911. He spent three weeks in the hospital and headed home with a picc line for 6 weeks of IV antibiotics. He was soon diagnosed with the same immune deficiency as Halle. He started gamma globulin infusions at just 9 months old and life with chronic illness was expanded in the Heilman household. By the time I graduated, in the span of just four years, all three of my children had been diagnosed with life-threatening chronic illnesses. Looking back, I have no idea how I survived driving to and from Gainesville 2-3 days a week for classes. Leaving the house at 5am and some nights not getting back until 11pm. But I did it and I am truly grateful John encouraged me to see it through.
My doctoral program was one of the most rewarding experiences of my life. I loved learning more about pediatric disabilities. I felt at home working with children with spinal cord injuries and adored their families. I was never that hard-nosed researcher trying to collect my data at all costs. I just listened to their stories. I watched their interactions with each other and their therapy team. I studied the impact rehabilitation had on a child living with a chronic, severe, incomplete spinal cord injury. I studied the plight of the families and looked for ways we, the rehabilitation team, could make their lives a little better during their recovery.
However, I had big dreams of what I would do with that education. I wanted to research better ways to meet the needs of children dealing with chronic illness. I wanted to find ways to empower young people, despite their disability. I wanted to raise awareness on the struggles of the family and the siblings of those with disabilities. I wanted to educate future professionals on the psychosocial impacts associated with raising kids with disabilities. Yeah, I know…my goals were a bit lofty. Back then I thought I could change the world but soon I realized the dreams we start out with in life do not always align with the path we are given. You see, after my graduation, Halle entered middle school and her health began to deteriorate. I had just applied to a few positions and started writing a couple articles for submission, but quickly realized there was no way I could work full-time and it was now time to refocus on my family. We spent the next five years visiting every specialist imaginable. I researched new treatments, spent hours with her in rehabilitation to find a way to ease her pain and stabilize her health. We traveled the country looking for an accurate diagnosis and any treatment that would make her life more bearable. Halle and I spent hours crying on the floor of her room as she begged me to take the pain away and we held heavy conversations about why there is sickness in the world and why young people have to die. While at the same time I took Halle, Neeley and Ben to their “normal” but numerous doctor appointments and scheduled surgeries. Throw in several ER visits and a hospitalization or two every 6 months and before I knew it, years had passed. Those ten years since my graduation have been full – not with my dream job at a University, but it has been full with my dream job in life. I was afforded the time to focus on my children, especially that precious time with my Halle.
During that time, Halle had to be mostly home-schooled and while she so wanted to be with her friends in a normal school, I was given more time to spend with her. Those last five years I had with Halle, were some of the most difficult years, but they were truly a gift. Looking back, Halle and I traveled to NYC for her treatment at NYU Medical Center. We made the most of it and had a girls’ adventure around the city in between doctors’ appointment and testing. On the days she would barely eat, we would have lunch dates at Starbucks, where I knew I could get her to sip down a Starbucks Frappuccino or we would swing by Panera’s for a bowl of broccoli and cheddar soup. I can’t even count the amount of lunches we ate out over those years. We did our best to make her life more enjoyable. We found ways to make our days at home or in the hospital a fun experience. Whether it was infusions during movie night or picnics in a hospital bed, we found a way to celebrate the lives we were given.
So why am I writing all this? I don’t really know. I guess when I read that rejection letter, I was reminded of where I thought my life was going and then was quickly reminded of the different path I took. I had always longed to help other families dealing with the same struggles we have faced and it stings to know I haven’t been able to do that in the way I had hoped for. I feel defeated. I am reminded that having children with chronic illness not only effects the child, but it impacts the entire family. I guess I am just reminded today that I purposely gave up on my career to be with my child as she lived her last days….and no parents should have to walk down that dark and winding path. I am reminded that some people are more capable of coping with the stress that comes with the world of disabilities than I am. I am also reminded some research and education comes through publications and journal articles, but some research is learned through lived experience. I am reminded that my career path is not my life path and I had to acknowledge that I am 45 years old and still trying to figure out what I want to be when I grow up.
Finally, I am reminded that rejection sucks – but as Halle would say Suck It Up Buttercup and get back to work.