Then Mary Elizabeth's first Christmas when it wasn't all I ever dreamed of. I wanted her to be sitting up & playing with her toys. As those years went by & people asked what to get her I had no answer. Ya'll know those crushing questions. The ones when family & friends mean well but it breaks your heart. The realization of no gift being right or working for her. Eventually she got diapers for Christmas because the toys she could enjoy were too expensive.
There is the Christmas we spent without me being pregnant because we lost our little boy during the pregnancy. We were still grieving as the world continued on. My heart still longs for him this day.
Michala comes along. In November when she was 3 weeks old she had her first seizure. Then she was diagnosed with infantile spasms. My heart wasn't very thankful. On December 21st she was diagnosed with Aicardi Syndrome. We were also hit by an on coming car that same night.
Right after Christmas we began preparing to be admitted to University of Alabama at Birmingham hospital for Michala to start the vigabatrin study program. Not the way we wanted to start the new year. Our first night there I was in the hospital with Michala while Mike & Mary Elizabeth were at the Ronald McDonald House. The next morning the abortion clinic was bomb just a couple of blocks for RM house. It was on lockdown so they couldn't come to the hospital.
The next November Michala had her first
surgery on her foot at Boston Children's Hospital. The next week we were told she had stage 4 angiosarcoma cancer. That week her second surgery on her foot was done at Egleston Children's Hospital to try to get a clear margine. In December we were given the choice of her life or her leg. We chose her life & in December her leg was amputated. In January her chemotherapy was started with not much hope from the doctors that she would make it.
The next Thanksgiving & Christmas we spent without my brother Tommy.
Marlee Anne's first Thanksgiving & Christmas was wonderful but those other memories continued to lurk. As she got older she wanted to get different things for Mary Elizabeth & Michala. Soon she would realize their abilities were different.
Abe came along & those Christmas dreams were crushed yet again. This year we have Thanksgiving & Christmas without mom. Probably the hardest one ever!
I want to end by saying that our children not being able to run see what Santa brought on Christmas morning gave us even more of the real meaning of Christmas. We have always given them 3 gifts for Christmas representing the 3 gifts the wise men gave to Jesus. They help keep us focused. I try my best not to get in my holiday mood but every now & then it hits. That's why God blessed us with other Mito, Aicardi & "C" families to help us get through this. Also family & friends that have celebrated Thanksgiving & Christmas without a loved one.
