I have two daughters. Very independent, intelligent young women. Both incredibly stubborn. I mention this for a reason as you will discover later as you continue to read.

I am almost 48 years old and was diagnosed at 45 and a half years old. I haven’t been living with this for very long. My daughters and husband have not been living with this for very long. The process of acceptance is still evolving for us.

I left Canada almost 3 years ago. I had met the man of my dreams, so cliché I know, and with my daughters blessing moved to Germany to marry and be with him. Life was full of promise and the unknown. Little did all of us know that the unknown would be a full blown social tour through the German medical and social system. Some women get to see castles and drink wine along the Rhine; not me, I got to leave my organs in different cities.

I told my husband by making him read the webpage from Dr. Sugarbaker. That is how I found out what I had. My doctor spelled the diagnosis over the phone. I googled. I did not speak German at the time, so this was the only way. It was a lonely, heart stopping journey of disbelief for six hours. In six hours I had to formulate a plan to tell my daughters and gather enough support around them in Canada. My friends were a huge help. It was devastating to them. The unique problem with our situation is that they had not physically seen me. So to connect to this reality was and is really hard. My oldest came after the first operation. I was up and around by that time. She really couldn’t grasp what I had been through.

Now four surgeries later she has some idea. She is only now reading about this diagnosis. My younger daughter came to be with me during the last operation. She exploded two nights before the surgery. She stayed and made it through, but she is still really scared that I will die. She is having lots of trouble accepting this, but seeing me after the surgery was a positive step forward. She has also put herself in counselling to help with the acceptance. My oldest had done this also after seeing me.

We talk openly about this. I am the only parent for them so they are acutely aware of what they are potentially losing. It has not only been a physical battle for me to survive through this, it has been a battle to keep myself emotionally strong to help them through this journey. To help my husband through this. This diagnosis takes more than your organs. It changes your life. It does, however, give back so many surprisingly good things in return.

Be patient, be open with your diagnosis, be receptive to your children’s need to talk at all hours. Don’t force all of the information at them at once. Let them approach you with what they need to know and can handle at that time. It is a long process for everyone. It has to be a shorter process for you. Yes, not only do you have the burden of the illness, but you also have to help your family deal with it as well. Even when you don’t feel so strong.

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