Therapy, Ignorance and Wise Words

I continued going to therapy once a week for the first two years of the twins' lives. I had the hardest time dealing with the idea that one different decision and the boys would have been spared. They were paying for who Leo and I fell in love with. I could not stop blaming myself and wondered how the boys would ever be able to forgive me. The guilt was crippling. I loved my children, I just wanted a different life. I wanted to wake up and have it be a bad dream or a mistake and have someone call and say, "Oops, we were wrong." It took years of therapy to accept the life I had and that I was already awake and that call wasn't coming. I had these children that looked healthy and acted healthy and they were telling me they were sick. I read on a website this:
"It's one of the most insidious of diseases. Young cystic fibrosis patients often look healthy and fit, but inside, their own bodies are slowly killing them."
It is this very thought that keeps me up at night and only by praying do I find peace about it. Leo telling me that this is happening to all of us as we get older puts it into perspective, too. Going to their appointments and hearing that their breathing tests are above normal even for kids that don't have CF helps, too. I dreamt of taking them to some remote island where everyone would leave us alone. People didn't really get it. They would take it personally when we wouldn't go out or to their parties but after Tommy was released from the hospital, I was terrified of him getting sick and having to go back in the hospital. There came a time when Leo was getting pressure about not going to anything anymore either so we went to a party and one of the kids was there with a fever and not feeling good. The mom said he woke up not feeling that great and then looked at me, shrugged and said, "What are you going to do? These things happen." Well, how about staying home? I get that the kids couldn't live in a bubble and that they were going to get sick but I was afraid that what would start out a little something would end up a CF something and then I wouldn't know how to take care of them. I remember one well-meaning friend ask me, "Do they know they are sick?" I immediately said, "They're not sick." I am sure I seemed like I was in denial but shock was more like it. One friend (who I don't talk to anymore) said to me when her child was being tested for it for poor weight gain, "Well what are the odds that two kids from different families in the same social circle would have it? Since your kids have it, I am pretty sure mine doesn't." I'm so glad I could put her at ease going into that test. I was tutoring at the time and when I called to cancel, I told the parent what was going on and her way of comforting me was, "Well, at least you know how your kids are going to die. The rest of us have no idea how or when." Why in the world is it comforting to know that? Nico had made friends with a little boy in one of his park district classes and she had asked for him to go to their house. I explained what was going on with him because at that time, I didn't think there was anything to hide. He didn't have a sexually transmitted disease and he wasn't contagious to anyone but as I was talking to her, she was backing away from me and said, "Well, I'll call you and we'll set something up. Next week is pretty busy." That call never came. Whether I like it or not, those events shape the way I handle telling people and how I view this disease. I know there are stupid people out there and I won't be able to avoid all of them but it is probably one of the reasons why I sometimes feel the need to hide under a rock. I said before that it might appear that I am in denial but I really believe that you have to be a fighter with this disease. That you can't let your guard down and let it in. I don't see my kids as being sickly so I don't treat them that way. I don't want anyone to treat them that way.

Therapy and meds helped me to cope with the day to day raising of the kids and it helped me to see past the disease in order to do so. It was the wise words of my uncle that snapped me into a different way of thinking that I still carry with me today. One Christmas Eve when the twins were two, I was talking to my uncle and he asked how I was doing. I remember having a heavy heart with the guilt that consumed me. I told him that and he said, "What if you didn't look at it like CF was something you gave them? What if you stopped looking at it like you gave them a death sentence and instead think of it as because of you and Leo, you gave them a chance at everlasting life?" Without getting too deep into this or sounding preachy, I have always believed that Jesus died on the cross for our sins. Up until that conversation with my uncle, I only thought of Heaven in terms of the people that I loved that had died being there and how to keep my kids from getting there too soon. It was his words that made a peace come over me. Without Leo and me, my kids wouldn't be born and would not have the chance for eternal life in Heaven. For anyone that questions religion or God or Jesus or anything or wonders how I can still believe in anything, it is because I have to. It is the only way I can love my children so freely with the threat of a life span hanging over our head. I would never love them less because they have CF but our hearts have a way of putting up walls to protect themselves from extreme pain and for me, nothing is worse than losing a child. If you know me well, you know that I don't know how to love with walls up and with just that one conversation, I felt the walls come down. CF is bigger than me but not bigger than God. I could let it keep stealing our joy or I could put my trust in God and have faith that the boys will be okay. I choose to do that because even I get tired of crying.

A good friend explained to her kids that Nico and Tommy battle CF and sometimes it makes them not feel very well. I like that. I say that instead of they "have" it because it implies that they are fighting it and with my faith I believe they will win.

For those that have never seen this video, it gives a snapshot into our lives. The funny thing is that Leo spoke a lot more than was shown but like I said before, he is a mumbler and that doesn't work for videos. Apparently, I am loud but I am clear so it was mostly me. I was seven months pregnant with Gia and was having a painful vein issue so understand that it was not my best look. :)