I am driving my son crazy. I’m on a mission to get him thoroughly checked out by all of his doctors before he leaves for college. I’ve made appointments with practically ever doctor he’s ever seen in these last few weeks of school. I realize this sounds pretty obsessive. What you need to understand is that my child has been in a fight for his life a good chunk of his 18 years. I have gone to battle with him several times. I worry about his health. I worry that I won’t be able to monitor his health now that he’s an adult and leaving for college.
My son was born two months early, possibly because I have lupus. We closed on our first home at the same time I was put on bed rest. He was born 18 days after we moved in. This was his first time his health was in jeopardy. Born at 5 lbs. 9 oz., he was the biggest baby in the NICU for his three week stay. He still needed special monitoring just like all of the other preemies.
When it was time to go home, a specialist told us there was a possibility he had cerebral palsy. He demonstrated increased lower extremity tone. An official diagnosis would not occur until he was a year old. In the meantime, we were told to do exercises with him at home and seek out a pediatric occupational and physical therapist to follow him for this possibility.
Because of his many challenges that first year, I took him to over 100 doctors appointments with specialists and therapists in addition to check-ups with his pediatrician. He was fitted for a special helmet for plagiocephaly (a fancy term for his head not being evenly shaped). He had trouble with his vision. He received therapy for meeting developmental milestones three times a week. We visited many hospitals and specialized clinics. We are fortunate to live in an urban area with access to excellent health care.
I felt all along that he did not have cerebral palsy. He moved with some stiffness in his legs, but he could do and meet all of the milestones for a newborn. At five months old, I took him to a checkup with his developmental specialist. I showed her a game we played. He sat on my lap facing me and I held onto his hands. I would raise his arms and say “up”, and he would stand up. Then, I’d put his arms back and say “down”, and he would sit back down in my lap. The doctor said that she would never have believed that if it hadn’t occurred right in front of her. He giggled and smiled every time we played the “up and down game”. We were relieved to be officially told by his first birthday that he did not have cerebral palsy, and his symptoms had been resolved.
He continued to have challenges. He had trouble with his vision which required that he wear an eye patch on one eye. He was diagnosed with strabismus – his eyes wandered and would not always point in the same direction. He had therapists come to the house and play games with him to assess his “tracking” and treat him with play therapy to strengthen and focus his eyes. At 12 months, his Ophthalmologist decided to perform surgery to correct his vision. It helped, but he would later have the surgery repeated when he was eight. He still has this challenge, but it is barely detectable.
At two years old, he had had so many ear infections that his ear nose and throat doctor decided he would need to have tubes placed in his ears. So, off we were to another surgery.
We were told that he was “speech delayed”. Sign language for babies was just starting to appear in information for new mothers. We were able to teach him a few necessary signs to ease that struggle. We put him in a preschool at 2 years old that was very well known for their child development approach. They noted that he was able express himself by wearing a different hat from the dress up box each day. He wanted to communicate, but just wasn’t able to do so at that point. Starting at age 3, and continuing into second grade, he met with a speech therapist several days a week.
At three years old, we were starting to feel like his challenges were under control. We took a trip to Florida and had a wonderful time at DisneyWorld. I’ll never forget riding with him on Dumbo, watching the parade, and his excitement meeting the Disney Characters. We were all able to relax.
Shortly after his 4th birthday, everything changed. He was diagnosed with Wilm’s Tumor, a form of pediatric kidney cancer. Our world started spinning. He would need immediate surgery to remove one of his kidneys & 18 weeks of chemotherapy. That first night was like nothing I’d ever experienced trying to process the diagnosis and prognosis. My mother was with me, and the doctors had to give her medical help because she fainted. Oh, and did I mention we purchased a new home and had just put our house on the market 3 days before? Our realtor was fielding an offer and kept trying to reach us while we were at the hospital being told our precious boy had cancer.
I remember calling my (then) husband and my father to come to the children’s hospital immediately. We went into battle mode by looking at the big picture and then taking it one step at a time. We called the realtor & told her the situation. The woman buying the house was wonderful. After hearing what we were going through, we settled on a price quickly. She accepted the house “as is” because she didn’t want us to worry about repairs. There was one bed in his hospital room, so his dad and I took turns staying overnight. One of us remained with him at all times, and the other went home to take care of details with the house and get a good night’s sleep. Close family gathered around us, and his classmates families and church friends sent food. The ten days he was hospitalized are a blur. We weathered buying a house, selling a house, moving, facing his surgery and the uncertainty of the outcome, understanding his plan of treatment, and attending to his recovery within ten days. When he was released, we went home to our new house.
I took him out of preschool to care for him at home because he needed close monitoring. Our instructions were to get him to the hospital within 2 hours if he developed a fever. I learned how to put my cheek on his forehead to monitor him without having to use a thermometer. I made it a game it by hugging & kissing him several times a day in an attempt to hide my hovering. We were fortunate that he never had to be admitted to the hospital after his initial stay.
We were back on the roller coaster of appointments, special testing, and treatment. When he was diagnosed, he fretted about missing his preschool class trip to the zoo. The Make-A-Wish foundation contacted us after the bulk of his treatment to help grant him a wish. He knew immediately he wanted a party at the zoo for all of his friends. One beautiful late Spring day, his wish not only came true, but exceeded all expectations. He got a behind the scenes tour of the sea lions exhibit with a kiss from a friendly seal, they gave him a special painting by “Lady”, one of their elephants (!), 50 children and their parents came for a party and got passes to see the zoo for the whole day, and he was the most excited and happy 4 year old. We felt very grateful to be able to thank all those who had been so helpful and generous toward us in those trying times.
In the years following, we experienced normal health-related concerns just like any other family. The time was never right to expand our family, so he grew up an only child. I wish I could say that these latest doctor appointments have calmed my fears, but we’ve discovered some new challenges (but no cancer). I will do my best to guide him and support him, but I know I can’t make this “man” do anything he doesn’t want to do. (He also now has the right to decide whether I have access to his health information. The doctors won’t talk with me without a signed document attesting to his consent.) I will hope for the best, try not to drive us both crazy, and remind him of the words he heard every night before bed growing up – You are the most precious boy in the whole wide world, and I love you. ❤️