The Faces of Liver Disease

 Since Jamey was diagnosed, I have followed many stories online about Liver Disease. I have joined groups in order to learn everything I can about all of his diagnoses and I have more hours on Google than your average stalker about any key word the doctors gave. It's part of being a medical parent, at least in my opinion. Doctors are human, and sometimes their skill of explaining things to the average person can be less than stellar. I don't think every medical parent has actually watched youtube videos on actual procedures their child might be going through, but that's me being a nosey git. With him being an older child patient, I wanted him to feel like his questions would be answered and I could honestly answer them. He wouldn't be satisfied with the washed over version of the truth, and he would never expect that from me because we have always had an open and honest relationship. If the boys are old enough to ask it, they deserve an honest answer no matter how uncomfortable it makes me.

Today, I want to share a few of those pages. Most of them are children, it seems adults prefer to suffer in silence. Personally I wish more people would be willing to share their stories. Everytime we educate someone it means someone else is now aware of what someone is going through. Awareness to a certain cause puts more emphasis on finding answers. That emphasis brings research and the hopes for a cure or prevention.

Wyatt is a 6 month old recovering from a liver transplant in Children's of Pittsburgh right now. He is an adorable little bug! His smile is contagious. I hope to follow his mothers posts for a long time to come as he gets he chance to grow up and be the exceptional young man that those gorgeous eyes show.

I first met Brittney during one of Jamey's hospitalizations for pain. She was in for something a few doors down from Jamey and I ran into her and her mother in the hallway. She is a liver transplant patient and is doing fantastic :) I'm really happy to have had the chance to meet both her and her mother (we're facebook friends now)

Lucas is probably the most famous little guy I follow and with that face, it's no wonder. Add to it that his page is written in his perspective... He is a liver transplant patient who is recovering now at home and getting the chance to be a normal two year old with all the antics one could expect from a little boy.

Behind those pages, and the happy smiles are real people who have fought for their lives (and parents who fought that battle for them). I probably will never get the chance to actually meet either Wyatt or Lucas, but their stories have touched my heart. There are those who have chosen not to share in such a public way, and there are those who have lost this courageous battle. Transplantation is a last resort measure. Meaning that everyone of these angelic faces were very close to death before their transplants. Knowing that makes the smiles that much more wondrous.

This is Jamey. My own personal hero (who has a mother who is very bad about updating.) He's not to transplant level yet, and he's an extremely complicated case that keep the doctors on their toes.



My photo

I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 

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