Jen and Holly, nurses AND guardians of sanity

from Lisa

So we get the diagnosis. Biliary Atresia. This is not what I signed up for. None of us did. So I was in that stage of, "If I just hold out a little longer they will all come telling me they were wrong and to go home and forget this whole transplant nonsense..." I was not well mentally. Lets face it, I am borderline anyway, but this was real. He was recovering from his Kasai with two back to back cholangitis episodes. It had been 9 weeks in the hospital, and I was just SURE that if I did everything in my control... I would have, "control."
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SO this ment to my feeble mind:

1)No sleep. After all I had to stay awake incase Aiden made a peep. A whimper.. then I could HELP.

2)No food. You see this was before the LUXURY of parent trays in the hospital, (you know the disgusting hospital version of room service) so therefore I would have to LEAVE? OH NO! any form of personal care would be only a luxery I would just WAIT to enjoy when they told me they were wrong, and this was a bad dream.

So I was loosing it. I would walk down the halls of the hospital holding on, cause I was so dizzy and disoriented. I must have been just a mess physically too, because all of my loved ones were begging me to "take care of me". I was in martyr mode... and I was happy there. Well at least I thought.

Late one night, a very gentle nurse came in with a book. She said, "Lisa, we are worried about you. You need to talk, and get it out, you need to accept this is your new life. Take a look at this book..." she smiled at me so lovingly. I opened the book to find this crafty yet adorable thing called "scrapbooking". I had never heard of it, (not knowing it was a cult I was about to be sucked into), but it tweaked my interest. I loved the way the book told the story of her family.

I walked out to the nurses station. Jen and Holly handed me some paper, scissors, and pens. They showed me how to start. This was a masterminded plan of theirs. I am sure looking back they had discussed it for weeks.

Nurses are more than care takers of children. They are care takers of parents too. Exhausted and delirious moms like me.

IT was that night and the next several more weeks that I learned how to JOURNAL, and look at this as a new story. Write our story from a new perspective. I was able to see that even though I really had NO control of liver disease, I did have control of how I we handled it.

Years later, Aiden's liver transplant scrapbook is my most prized possesion. The front cover is hanging on with silk tape and tegaderms, but you can see the "story of us".

Jen and Holly my two night nurses, knew I needed something. Something that was mine. I can't express how much they saved me. Everything was different from there. I was able to accept that I was indeed a hospital mom, that needed a shower, and yes even needed to leave for a moment.

I see these two girls around town so often, and I always say... "you saved me from going crazy. thank you" and they always say back..."WE KNOW"

~~submitted by Lisa