Sometimes you hear yourself

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I was talking to a lady today I have known since Fiona was a baby. She was asking about how Fiona was doing and I was telling her the latest. She stopped and looked at me and mentioned that I said it all so matter-of-fact. I realize just how "numb" we have gotten to the seriousness of Fiona's condition. It is just another day in our lives. It isn't that we don't "get it" but it is we have learned to live with conditions, as of right now, we have no control over. If we look too hard it becomes very hard to function. So we just have to put our trust and faith in God to help carry us through this.

I realize that Fiona's life depends on someone else dying and for all of us parents who have children who have gone through transplant or waiting for transplant, we totally understand what it takes for someone to donate organs. None of us like to think about dying and most of the time have no plans to do so. But when tragedy hits home many people are so upset they don't or can't make decisions about organ donation. It just isn't a top priority for them. They go into survival mode. So many of us have signed our donor cards, signed up on a state registry, etc. to be sure our wishes are carried out. But the one component many leave out is to talk to their family members about organ donation and make it clear your wishes because THEY are the ones that have the final say, no matter what your wishes are. If all the acceptable organs that could be donated were there would be no wait, children like Fiona would have never had to go through all this. People of all ages would be able to lead longer and healthier lives. I know so many of you that read this blog totally understand and support organ donation but obviously there are a lot of people in this world who don't. Many people waiting for a transplant "live" for years waiting and hoping, only to get sicker and sicker and sometimes get so sick it no longer matters if a transplant would come along.

Presently, Fiona takes 18 medications daily and another 10 medications for more specific things, usually side effects from the other meds, as needed. I know I am very grateful that this is even an option of transplant. Those of you who have known me for years know this has been a very long journey from the first trimester of my pregnancy. Many of you have been there for me, Fiona and our family for years. We aren't amazing. We are just doing what we have to do. We have no choice. No one gave us an option to have different circumstances. This is the what we were given and this is what we live.

Fiona has never known anything else. She is enduring a lot more lately. She has lost her dream of a career right now. She can't even drive. Mom has become the chauffeur. She feels crappy a lot of the time. Fatigue has gained a new meaning. The symptoms are increasing and yet this young woman can make you laugh on the spot. She has learned to live with what she has. She gets low and some things are harder than others but usually you would never know she is even sick. She is just wonderful.

Sometimes you hear yourself and stop and think, this is our life. We are doing just fine. It's not perfect but it is OK. Today is a beautiful day. I don't know what tomorrow will bring. I guess I don't want to know because I want to live today as if we have all the time in the world to make wonderful things happen. Miracles do happen and I am blessed to have a very special daughter that fits that description.

To all our friends and family, you are the BEST. You are always there and we appreciate you.
Peggy

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