My Story

Our three children, Spencer, Maddie and Laynie were diagnosed with a life threatening genetic disorder when they were four, three and one. In January of 2008, our son Spencer passed away at the age of eighteen. This is the continuing journal of our lives with Maddie and Laynie.

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Journal

Monday, June 29, 2009 11:06 PM, CDT


Dear friends,

Today the girls had a forced pajama day. I decided I desperately needed one of those days where I stay in bed all day hiding under the covers from the big scary world. Laynie and Maddie were happy to keep me company. Tonight, I'm not as scared as I was when I woke up this morning, as I am very near a self-imposed catatonic state due to back to back sit-com watching.

So how do you cope with really scary things in your life? I have had plenty of scary things I've had to get through, such as waiting for the phone call with the results of our children's MPS screening results. By the time we received the actual phone call, I was vomiting every single time the phone rang. On the up side, I lost some weight, on the downside, I realized I'm just a missing link away from Pavlov's dog. The ring of the phone still makes me bark every now and then.

I have also spent many periods waiting for my children to go through various surgeries. The weeks prior to big surgeries are really rough but nothing compared to the hours spent in the waiting room.

Today I started trying to think of things I like to do where I comepletely lose track of time. Writing, reading, and sleeping all qualify, so I have concentrated on these things. I have even wished fervently that I had a job at the Q-Trip in our area. Those cashiers barely have time to breathe!

Steve got home just a little while ago and says we leave for San Francisco on Saturday morning. I won't even worry about flying on the 4th! I guess that means we will have a day and a half to look around the city a little. If any of you have a favorite place to eat in China Town or a favorite sight seeing place, leave me a note in our guest book, please. My favorite is the Muir Woods. I love the Red Woods and the smell of the forest.

Ok, So I might be prattling on just a bit. Please keep praying and encouraging us all,
Love, Amy

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Your notes strengthen and fortify me. Thank you for taking the time to let me know you care about our family. I love to check in with my friends, so please leave me your email address in your signature if I can send you a note.

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E-MAIL AUTHOR

amy.holland@charter.net

HOSPITAL INFORMATION

Cook Children's Medical Center
Fort Worth, TX 76115
(682) 885-4000