“It all started with me looking at a picture of myself. As I held the photograph in my hands, I noticed one eye was looking upwards, toward my junior basketball coach, and the other not so much. I immediately told my mom about it. ‘Mom, can we please go get it fixed?,’ I begged.
When I went in for an appointment with the ophthalmologist, I was told, ‘I recommend you have an MRI… just in case.’ I was a scared 14-year-old who didn’t know anything about MRI’s. And now I had to go into an enclosed tube and lay completely still for hours under anesthesia as loud noises blared in my ear. I was terrified.
The scans showed I had bilateral acoustic neuromas (benign tumors on hearing nerves), a common component of Neurofibromatosis type 2. Again, being 14, I had no clue about tumors and what it all meant for me and my future. My parents did the normal parental thing and researched it like crazy. Back in 1998, it was rare to have and all the stories they read were about life expectancy and diminishing quality of life.
Neurofibromatosis Type 2 is a condition where tumors grow on your nervous system, brain, and spine. It is known to cause deafness and balance issues, among others. It varies from person to person with severity and it can be hereditary, or it can come spontaneously. That’s me, I am the random one. My parents and siblings have all been tested. Being a twin, we were scared my sister had it as well, but luckily she did not.
A month after my diagnosis, I had my first brain surgery on my left hearing nerve, with a probability of losing my hearing. Surgery went well and they managed to actually save my hearing! Two months later, I had another MRI and they found a tumor on my ocular nerve. So, we decided to remove it. The doctors didn’t know for sure which nerve it was on until they were actually in surgery. They told me, ‘It could either be on the 3rd cranial nerve, which would cause damage to the eyelid and eye movement. This would close your eye. Or it could be on the 4th cranial nerve where you would still be able to open your eye.’
I remember my sister telling me that during her basketball game, she was praying so hard that the tumor was on the 4th nerve. ‘I dribbled four times before my free throw for good luck.’ Still coming out of general anesthesia, I remember waking up just to ask, ‘Is my eye closed?’ My family said yes and I remember going back to sleep. The tumor was on the third cranial nerve. I knew my life was going to change, but I didn’t understand or know how much.
I was weird looking. I was different. I was ugly. ‘No one will want me now,’ I thought. I had depth perception issues, but none of that mattered to my sister, my twin. She encouraged me every day to continue doing what I loved. I still wanted to do everything my sister was doing. I questioned whether I would ever have boyfriends, if someone would ever love me enough to marry me, even with one eye closed. Would I be able to have my own family, get my driver’s license, or go to college? The questions were endless and so were the treatments.
When 2005 hit, I lost hearing in my right ear after removing another tumor that had grown. By this time, it was my fourth brain surgery.
Losing my hearing on one side was nothing compared to my eye lid closing, but it was still a shock knowing one day I may become fully deaf. But I continued on with my life. I still played sports, I had boyfriends, went to college, got my driver’s license, had a job, and had my own apartment.
I was living a good life but, don’t get me wrong, I was self-conscious and didn’t like to go where there were new people or I would keep my head down. But, my sister was always there for every surgery. Even when she was away playing basketball, I still felt her support and encourage like she was right there beside me.
By 2015, I had my 6th brain surgery and a partial hysterectomy due to fibroids. I knew I couldn’t put myself through pregnancy. All of the hormonal changes could cause tumor growth and I didn’t want to make ANY tumors grow or make my condition worse in general. I could not use my eggs either in fear of passing my condition onto my kids. I didn’t know what my future was going to look like child and family wise. ‘It’s okay. It’s okay. I don’t need to have kids,’ I kept telling myself. But In 2016, I got married and my life did a 180.
I wanted a family and I wanted kids with my husband so badly. I started doing research on adoption and embryo adoption, surrogates, donor eggs, ect. I was very open with all my findings with my husband and family and it all came to be so very expensive. I went to a fertility doctor who basically convinced me that retrieving a donor egg with husband’s sperm and a surrogate would be the best way.
In December 2017, my sister and I were wrapping our mothers stocking stuffers for Christmas like we do every year. We were just talking about all my findings and frustrations about needing a surrogate and how much it was going to cost. Suddenly, my sister blurted out, ‘I will carry for you!’ I was in total shock. This was a huge, life changing thing she would be doing.
We started talking about it more and going over everything she needed to do and worst-case scenarios. She was still on board, still wanting to stop her life for me. It was truly the best feeling. I will never forget her saying, ‘I would be jealous if someone else carried for you.’ She smiled and gave me a nudge.
Eight months later, we implanted two embryos. I knew they may not take, and they didn’t. It was a sad day and I knew my sister was having a hard time, feeling like she had failed me even though that was farthest from the truth. I told her to let me know if and when she wanted to try this again. ‘I’m on board to try again now!’
So, two months later we implanted two more embryos. During the wait, I wanted her to pee on the pregnancy stick so badly. So, I went over to my sister’s house 2 days before the blood draw and had her do it. It was ready by the time I got home, but I wasn’t going to tell them what it showed. Out of fear, they didn’t want to know so I wasn’t going to tell them.
The stick showed two lines. Positive! The doctor called to verify the news. I called my husband, then my sister, then my parents! The first ultrasound showed that both embryos stuck and that we’d be having twins!
My sister and I have been going to all the appointments together. She lets me ask all of the weird questions I want and lets me touch her stomach anytime I want. She often sends belly pictures too. Because I couldn’t get pregnant myself, she wants me to be as much a part of the process as she is. She makes me feel so involved and it has been a wonderful experience. I couldn’t be more proud and grateful.
My sister is my life. She has given me so much strength throughout the years. If it wasn’t for her, I’m sure I would be anywhere near where I am now. Every time I get knocked down, she gets me up and we continue this life.
Update: And guess what? Surprise! On June 7, 2019, the twins were born!
I am so happy she carried my babies for me and I am ever more excited to see the bond she will have with them. I can’t wait for the amazing memories yet to come!”
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