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Monday, April 25, 2011

The Aftermath

I felt like a terrible mother. There I was worrying about the babies I was carrying and right under my nose, there was something wrong with the child that was already here. How could I not know? While we were sitting in that meeting with the doctors, they said something that stuck with me taking me years of therapy and the wise words of a favorite uncle to get over. They, in an attempt to make things lighter said, "It was just bad luck that you found each other." They told us that CF is caused by a recessive gene that each parent carries. I am a carrier and so is Leo. Of all the people in the world, we fell in love with another carrier of a deadly disease that we had no idea we were at risk for. One different choice and Nico would have been spared this path. I get it that it wouldn't be Nico but when you are in that position and your heart is breaking, all you can think of is how could I have prevented it and all answers pointed to, "We must have made a mistake. We weren't supposed to get married. I fell in love with the wrong guy. I chose the wrong guy." It all seemed to click for me: the infertility and now this. I was being punished for something and the only thing that I could think of was that God gave me signs that Leo and I shouldn't have gotten married and I didn't listen to him. So many obstacles and we took pride that our love overcame them, but by not listening to the signs, this was the ulimate punishment...we were going to lose our son. Our marriage was incredibly strained. We handled things so differently (still do). I withdrew and couldn't stand that together, because we fell in love, we gave Nico a deadly disease and he wanted me to stop crying and look at things logically (he had it, we'll give him medicine, we'll fight it and he'll be fine). Then there were moments where I leaned so hard on him and felt so lucky that I married a strong man that could weather some of the things I was spewing out in a hurting rage. He would hug me and tell me he loved me and that it was going to be okay and that the twins were not going to have it because lightning doesn't strike twice (everyone told me this). I loved him and wanted to believe him. I questioned God but still held on strong to my faith. I remember crying out to God and begging him to not let it be true. Begging for Nico to be okay. Asking to please spare the twins because I couldn't live with myself if we gave another one of our children this disease that in such a short time, I already hated.

The weeks that followed were filled with doctor's appointments and the blame game. Nico had to learn how to take the enzymes and do the vest and we had to learn it all along with him. He hated doing both and would cry each time. He had to take the enzymes with every meal so there was a lot of crying. The only way he would do the vest was if I told him he was just like Jack Hammer (he LOVED the Rescue Heroes). It's funny but our parents couldn't wrap their brains around where this came from so they were either blaming each other or saying things that were so completely ignorant that it made the situation worse (Leo's mom saying it must have come from my mom because she smoked). It wasn't their fault...they loved Nico so much that they were hurting too but I will tell you how evil I was. I got so fed up with Leo's mom saying it couldn't possibly have come from her side of the family that when she said it again, I meanly said, "Oh, didn't we tell you? They did a test and found out that it is traced back to your side." See...a little bit of evil lurks there.

I became a basketcase. I stopped eating because I was nauseous all the time and I stopped sleeping because my dreams were riddled with me asking every guy I ever dated or had a crush on "Are you a carrier?" I would cuddle with Nico like I always had but I would end up silently crying when he would fall asleep. He was this normal, rambunctious, loveable, seemingly healthy 3 year old that only had a nighttime cough and they were telling me he was sick and would only get sicker and have to be in the hospital and might need feeding tubes and home IVs. I wanted to trade places with him. I could've handled it if it was me but my child? I could not get a grip. If I wasn't numb, I could actually feel the crushing of every dream. Nowhere, in any of what I imagined my life to be, was this scenario.

My family threw me a shower a month before I had the twins. I think they really wanted to show me that life could still have happy moments in it and though I got to see some very dear friends from the support board (T.S, T.L and C.V., I will never forget what you did for me that weekend...getting on a plane less than a week after Sept. 11th), I remember just going through the motions. Of the shower, of being a mom and of being a wife. I just kept thinking that everything I knew to be true wasn't anymore. I felt alone and cursed with bad luck and the fear that he was going to suffer was paralyzing. Nico's diagnosis threw my obstetrician and the CF doctor in a panic about whether the twins had it. Even the geneticist (another professional that I hated because she LOVED her job and at the time(though I am sure she didn't love that part of her job), her job was telling me that my son had a genetic disease) kept pushing me to run tests but I didn't want to know. It wouldn't have changed anything and I wanted to live in ignorant bliss that everything was going to be okay. I agreed to a level 2 ultrasound where they said they saw no sign that either twin had it. I remember feeling like God was listening and maybe everyone was right and it would be okay. naive...


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