It’s been 5 years since our last daughter Addison was born still, the breast cancer came and my mother died. There are still events of that year, I am trying to mentally process. Two weeks into my chemo therapy, our family learned we were one of the first in the world to pass Campomelic Dysplasia to our children. It was never thought of as autosomal dominant disorder. Our family proved that wrong. I did what I needed to for survival. I had the help of friends. Diner still needed to be cooked. I had work. My daughter had kindergarten homework to be done.
In the past two weeks, I was reminded of one of the events leading to my diagnosis of breast cancer. Our family was very close. It began to fall apart after interaction with a doctor about 9 years ago, who had his own personal revenge agenda entered our lives. I was totally not aware of what my brother had done. All of a sudden, I entrusted the wrong person. Then, I decided I wanted another child, when my daughter was 11 months old. My sister-in-law began to have children as well. My story became one miscarriage after another. Now the miscarriages were happening at 18 weeks. She had 3 kids with one miscarriage. I went back to work full time to get childcare to get fertility treatment. Worst of all, we had to pay for the medication co-payment because my husband’s insurance for prescriptions was from a non-mandated state. It was during the last recession. We have fallen apart. Months go by without a word from my in-laws. Last week was the anniversary of my daughter’s birth and death, my phone never rang. I had no emails either.
In 2010, a few months after Addison’s death, my mother-in-law lost most of her hearing and they saw a tumor. It did not register with me at the time this was another rare disease. This was literally weeks prior to my breast cancer diagnosis. We were trying to figure out how another baby died from Campomelic Dysplasia. When we had good news my mother-in-law did not have cancer, my lump was discovered. Many doubt it was cancer because of what happened with her. Unfortunately, I was not spared. I didn’t ask a lot of questions. My husband was diagnosis with hearing loss. All of sudden, I was told it was Neurofibomatosis Type 2. Thankfully due to the copy function on the computer, I can spell.
I find myself struggling with the anger of it all from that year. Why didn’t my family help me? There was little warmth for me. No one appeared to care another baby died. No one cared how many cancer treatments I had. I came home and I went to work. My body was wacked repeatedly with infections, because I wouldn’t rest. I also found my mother dead from natural causes. I began to question in light of everything if there was a heaven and a God. All of sudden last weekend, I am reading about another rare disease in the family. The more I read, the more I worried about my living daughter. There hasn’t been a lot of kindness since the cancer. There are doctor appointments and appointments at the fertility clinic. I found myself asking friends for help to appointments, so I am not alone. This week, my husband had an MRI of his head. It was on the tip of my tongue to say, “I’ll go.” I fought it and fought it. The morning of, I did choose to go. I sat on the couch fearing for our family. I keep waiting for the disaster to happen again.
Today, we got the good news. No tumor was seen. I still wonder what this has to do with my daughter’s health someday. This Neurofibomatosis Type 2 is genetic. It’s autosomal dominant disorder. He has decided to go to my ultra sound appointment. My pregnancy ultra sound appointments are tough. It was due to routine ultra sounds, we learned the baby died. I don’t think I should go alone. I know at the next appointment, he plans to come. Maybe this will start us on the right path. Families should be there for one another. I can do it alone, but why should I? I hear a lot times that people are busy. People who live in 10 miles of me think it is attending by texting someone in the waiting room. Take the time to go. In the age of social media, let’s not forget the power of a hug in real life. I have negative thoughts. I have been pregnant 7 times. Five ended in loss. I am in the second trimester where most of the losses occurred. I am walking this and walking it alone.
My biggest concern having lived through loosing two children with a rare disease is mental health services for families. Genetic disorders are taboo. It never happened. Too often families are left to find their own resources. Genetic testing is not so cut and dry. We are living beings with emotions. No one gets over the results of their genetic tests in the speed that their fast food orders are delivered. In the age of medical advancement, let’s not forget the emotional dimension of being alive. I am glad that there is one day a year no family needs to walk alone. As living beings, we are compatible of so much good in life….