This is the 58th story of Our Life Logs.
“Life is 10% what happens to you and 90% how you react to it.”
–Charles R. Swindoll
I was born in Cincinnati, Ohio in 1958. I had normal, Catholic upbringing. My mother’s family was Irish, and my father’s family was Italian, creating a melting pot of heritage in our household. I was the middle child among my siblings, a sister and three brothers. We were all very close growing up. We had a huge backyard with a little creek at the bottom, so much of our childhood was spent playing outside.
My parents raised us to appreciate what we were given, regardless of what our siblings received. We never expected perfect equality between each other. It just seemed to happen naturally. Our childhood wasn’t a competition. We all had our own interests and desires that we worked hard to pursue.
I attended private Catholic institutions throughout my schooling. I had a good experience going through Catholic school, and I feel that it built a solid foundation for me to grow as a person. After high school, I didn’t go to college because I wasn’t sure what I wanted to do and didn’t have enough money for tuition. I didn’t want to ask my parents for help, so I worked in retail at a department store for a year to save up money. After a year, I bought a car and decided to go to cosmetology school. I went full time, so it only took me a year to get through the 1500 required hours to complete the program. I got my start working in small salons, as they fit better with my friendly, but introverted personality.
At age 20, I fell in love with an exchange student from Colombia. Soon, I got pregnant. We soon found out we had significant cultural differences. When I learned that he wasn’t interested in getting married, I decided to give my daughter up for adoption. I didn’t want her to have to grow up with just one parent, so I made the choice for her to grow up in a more stable family. He respected my decision. It was a hard choice, but I wanted a better life for her.
In my 20s, I met a guy named Dave and we became friends. I found later in life that he was interested in me early on, but I was in a relationship. We went back and forth like that for a few years. When one of us was available, the other was with someone else.
Finally, when Dave and I were both single, we started dating. Our intention was to just date without any commitments. This didn’t last long. Within a year of dating, we got engaged and got married in 1985. We began building a life together. When we decided we wanted kids, we got a house, and within a week I was pregnant. I had my son in December 1987. He was a ball of energy, and we had a lot of fun with him in his early years. We had a harder time conceiving the second time, but eventually succeeded. My daughter Lauren was born in 1991.
Looking back, I do see small moments when I was worried about miscarrying during my second pregnancy. Even so, I had a full-term natural birth. It wasn’t until she was born, and we saw the doctor’s reactions that we knew something wasn’t right. After two weeks in ICU, they told us that our daughter was diagnosed with a rare chromosomal deletion abnormality called Monosomy 9p. My husband and I were in shock. We were thrown into the world of the developmentally delayed without any knowledge about it. We hadn’t done anything wrong, but we felt immense guilt.
How the syndrome affects people can vary, but Lauren is on the lower, more severe end of the spectrum. She’s unable to walk and do everyday tasks on her own. She has spent her life in a wheelchair, and her speech is minimal. She’s able to say things like “hi,” and “momma,” but she cannot string more than two words together.
My love for my daughter never wavered. When we received the diagnosis, my husband and I worked to find out the next step and best way to raise her. We did the proper research and educated ourselves on the condition and made changes to accommodate her. We didn’t see her condition as tragic. We were happy that we had another child whom we could care for.
My husband continued working and I cut down to three days a week at the salon. We faced challenges each day. Lauren was unable to suck on her bottle due to her low muscle tone, so we had to find alternate options. Lauren got her nutrition through a tube. We were thankful that our insurance covered much of the therapy programs that Lauren had to go to, so we could still live a functional life. Through the programs, she improved her communication and walking skills. She’s still unable to walk without a walker, but it’s a lot of progress from her toddler years. At first, they worried she wouldn’t withstand the constant shifting of her body, but they soon learned they didn’t need to be that gentle. We got the most out of her during physical therapy when my son would move her around. She would light up and move when it was her brother helping her and making her laugh.
In the early years of our parenthood, we had to learn to balance. Lauren required so much of our immediate attention that we failed to realize that our son was still very young and needed our care, too. I remember him telling me one day when he was about 3 years old that he missed our time together, and it broke my heart. I couldn’t promise more time, but my husband and I did our best to make sure our son felt just as loved and important as his sister.
We were also thankful to have our parents help us out with Lauren over the years, especially my mother and mother-in-law. They would both drop everything and help if I asked. My mother and Lauren had a special relationship. Lauren would light up when her grandma entered the room. Lauren liked to sing made-up songs. Her favorites are “yahee” and “wahoo.” Grandma also loved to sing, so the two of them would often be found singing together, hands clasped and smiling.
Through my mom and programs offered for Lauren over the years, we got by, giving Lauren as happy of a life as possible. Lauren is like any other child. She has a unique personality. She is a happy, outgoing and is her most talkative when she’s around others. She loves a good party and seeing cute boys like any other girl. She hits her physical therapy goals a lot faster on the days the boys are around. During one of her hospital visits, she was flirting with one of the cute doctors there by saying “hi” every time he would pass by her room.
In the last few years of my mother’s life, she started developing Dementia and couldn’t take take of Lauren as often. Watching her mind decay was terrible because she had been such a prominent figure in my life. Around the time I was trying to help with my mom, Lauren was constantly getting sick, so I took a leave of absence from the salon. By June of 2017, my mother had passed away. I knew it was for the best, for she was finally free from pain.
The year after my mother’s death, Lauren was rushed into surgery on Thanksgiving Day. Over Lauren’s life, she has had 12 surgeries as her immune system is a lot weaker than others, so she is likely to be hospital bound when she catches a cold. On this day, it was unclear whether Lauren was going to wake up from the procedure. Nervousness crept into the waiting room, but I believe my mother was with Lauren in spirit. I believe my mother clasped her granddaughter’s hands once more and helped her pull through the surgery.
We never saw our life with Lauren as a disadvantage. I have memories of when she was first born asking God to heal her. Over time, I realized something. Lauren is a perfect, sinless blessing in my life. Why should I pray for her to be anything else? We enjoy her for who she is.
-This is the story of Jeanette Huesman-
Jeanette currently lives in Amberly Village with her husband, Dave and daughter, Lauren. Jeanette has lived a life with unexpected events, but she has learned to accept life cannot be controlled. These days, Jeanette is focusing on nursing Lauren back to health, so she can go back to Sonnyspot, a daycare-like program she is part of. Part of her time is also spent visiting and taking care of her 86-year-old father now that his wife is gone. Jeanette is grateful for each day she has and the amazing support system her family has been for her all her life.
In June of 2016, Jeanette was able to reconnect with her daughter Sarah that she gave up for adoption. Their reunion was positive and happy. They are working to build a relationship.
This story first touched our hearts on March 30, 2018.