Living with Chronic Illness

One of my dear friend's son has had a horrible time since birth. He has had to go through many surgeries, horrible procedures and tests. He isn't able to do so many things because of his illness but his mommy tries so hard to give him a wonderful life and does a magnificent job at it. I admire her strength and courage and this little boys incredible joy for life. She wrote that she felt like she was on the broken roller coaster and could see the one that worked perfectly with everyone having a good time. Sometimes hers works but it is bumpy, jerky and painful to ride. Other times it doesn't seem to move at all. Other times when it is moving more smoothly the padding in the car is gone and with every turn you get poked and jabbed. I thought it was so perfect of a way to describe how we survive through things that that if we have to "face" it everyday we couldn't. I have said before people think denial is bad. I have learned from experience denial is a very good thing. It isn't that we don't know what is going on. We just choose to tuck it away and pretend it isn't here today. We focus on other things and try to give our minds and heart a break so we have the strength to endure the NEXT BIG THING that comes along. Many people have described living with a chronically ill family member like "waiting for the other shoe to drop." Fiona and I feel we are way past that. Those were the good years. We are now living in a 911 state of being. My hearts drops everyday when my cell phones rings while I am at work. Thank goodness for caller ID. But if it is Fiona, I find I actually hold my breath until I ask her, "Are you OK?" and she says, "Yes." We have emergency plans, emergency emergency plans and HOLY crap plans in place. We can do this with our eyes shut. Doctor's phone numbers are on speed dial. We know the best ways to get to the hospital, the ER staff is very familiar with Fiona. And yet, it could be so much worse.

I was telling Fiona I feel so bad she is going through all this transplant evaluation stuff and not being well enough to work on her dreams for the future. I feel bad that there is such a organ shortage that this process is so horrible to go through. As I sit in the doctor's offices and see those who are at end stage liver disease, with orange skin and eyes and stick arms and legs, with 9-month pregnancy looking bellies I feel guilty that "you can't see anything wrong with" Fiona yet she will be competing in a life and death race for that life saving organ. As I was telling Fiona this, she looked at me and said, "I don't feel bad about trying to get a transplant at all. We don't know why they need theirs. Most adults need transplants because of hepatitis or alcoholism. I was born with mine. I didn't do anything to cause this. I have never had a normal life. I have done a lot but there were times I couldn't do what the other kids do and I wanted to do those things. I don't feel good many days and now I can't do anything because I am tired, I have trouble thinking and I am bleeding all the time. I deserve a transplant as much as anyone." Well said, well said. Sometimes I have to remember that even though I am riding the same roller coaster I am not walking in the same shoes as Fiona. I don't know what it is like. I can only stand next to her as her mom and say I wish it was never like this. I would give anything for this to all be over. I will hold her hand and never let go. We have many friends and family grabbing our hands to help us on this ride. Every new hand helps so much. It is amazing how much strength someone gives you just by listening. One day Fiona will be on the fastest and best roller coaster having the time of her life.
Peggy