Nobody ever told me how important my decisions would be when I became a parent. When my daughter was born 16 years ago we were very lucky to have a healthy child. Raising her was so cliche. Dress up parties, tea parties, jumpy places, birthdays at McDonald’s, going to the park, American Girl doll get togethers with friends, etc. I did know parenting came with difficulties and decisions I had to make that neither of us would like. Some decisions would leave me sad, especially when I had to say no and knew the response would upset her.
When my daughter was 10, we were blessed with a son. Suddenly I was forced to make life-saving decisions in a hospital setting during a year of his chronic life-threatening illness. I wasn’t just deciding on my son’s health. My decisions had an impact on my daughter, my marriage, livelihood, our home, and much more.
Our son was born with a primary immunodeficiency of unknown etiology. He was born a healthy baby only a few weeks early and was able to come home for his first week of life. It was then when things took a drastic turn. He was failing to thrive and had severe thrush. When I took him to the doctor, whose office was across the parking lot from the hospital, he actually walked us both over directly into the NICU. This was the first sign of how serious this was.
Over the course of the next year my son was continuously hospitalized, having been transported to a total of three hospitals. Balancing traveling to see my newborn with another child in school is difficult when everyone in your extended family is working. I relied on neighbors and my step-brother (a high school student at the time) to get my daughter to and from school. We were lucky that we had some family in the area and they were home by 6 p.m. nightly because my husband was working 90 miles away from home and out of the house from 6 a.m. until 8 p.m.
I had to split the week between my children, knowing each of them needed me in their own way. My daughter needed her mother and stability in her life with the uncertainty her brother was going through, literally fighting for survival. My son also needed me because the doctors were uncertain if he would survive because he could not fight off bacteria within his own little body. My husband did his best to maintain his routine for work because I had to stop working.
Every single day there were decisions to be made that would have an impact on the future of my children, my marriage and my entire family. My husband and I actually had discussions on who needed me more – which seemed absolutely unfathomable because both children needed me.
Everything fell into place though when we were transferred to a hospital with a Ronald McDonald House nearby. After four months of juggling where my daughter would go after school and what days I’d be home with her, we were able to stay together as a family and help her brother while he was hospitalized. Making the decision to have my 10-year-old stay with me and go back and forth to her brother’s ICU room on a daily basis was a hard but necessary decision to make. Thankfully we were also able to transition her to cyber school so we could keep up with her education during this time. We ended up living together in the Ronald McDonald House for nearly an entire year with her dad visiting on weekends. While this wasn’t our ideal home situation, we were able to be together as a family and experience a sense of normalcy with dinner on the table every night, eating together while having my son close.
Our lives changed dramatically that year, from the city in which we lived, the type of schooling my daughter received, seeing my husband, and the children seeing their dad only on weekends, meeting and bonding with complete strangers who were going down similar paths of chronic life-threatening illnesses, and the education gained both medically and socially. I couldn’t shelter my family from the pain we (and others in similar situations) endured that entire year my son was hospitalized. We gained friends and lost friends, many of whom were too young. But through it all we gained a closeness not many families have. We stuck together and truly loved one another. I am convinced this strength and love is what helped all of us to get through the difficult times.
We still deal with periodic hospitalizations but have become veterans of the process. My son’s hospital room has become an extension of our living room when he is hospitalized. We still eat dinner together as a family and watch our favorite TV shows. We continue to do arts and crafts, play with action figures and every normal thing we can do because this is our life. We are determined to make the best of the time we have together, and we plan on enjoying ourselves on this journey of life.