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Monday, November 8, 2010

An unwanted anniversary

I remember the day like it was just a second ago. I remember the words as they came out of the doctors mouth. "I think Jackson has a mitochondrial disease called Leigh's." I have played those words over and over and over in my head.
\I will never forget November 3, 2007 as long as I live. It was the day Jackson began having seizures. I had no idea it was the beginning of our mito journey. It was a Saturday and we were getting ready for a soccer game. Jackson was 7 months old. He couldn't sit up and it was very difficult to get him to smile. I didn't think anything about it because I though he was such a good baby. He never cried or fussed for anything. I thought his delays were because of being born at 35wks. I remember thinking he's ok, he'll catch up. I had no idea what was in store for us.We rushed him to the ER.  They ran some tests and we were sent home. He had another episode and we rushed back to the ER. This time more tests and we stayed all week to figure out what was wrong with Jack. I remember Monday, November 5, 2007. Dr. Morgan came to Jackson's hospital room and told me Jackson had Leigh's. I remember being devestated. I remember telling John,  I haven't even planned his first birthday party, I can not plan his funeral. So even though this kind of anniversary is not normally celebrated...I celebrate! Jackson has beat the odds of living with Leigh's. He is 3 1/2  and will turn 4 in March. I am so grateful for the people that have come into our life because of mito. I am so thankful for so many people loving my little boy. They love him so much and hate mito just as much that they put together BBQ lunch fundraisers, baseball games,and even a  5k run/walk. I am gratefuyl for people just giving to the UMDF. Life has certainly changed since November 2007.  I am grateful tonight for Jackson's life. I am thankful to God tonight for His promise that all things work together for His glory. I have no idea what will be next for Jackson and our family. I never expected to have a child with a mitochondrial disease. So, in honor of this unwanted anniversary I have began a new blog on blogspot. I think this one will be easier to log onto, load pictures and change. I hope you think so too!

1 comment:

  1. Em, you are an inspiration to me. We love you and Jack so much and pray daily that God will use y'all to find a cure for this ugly disease. I celebrate with you as November comes our way and hope by this time next year we will be closer to ending Mito diseases. I love you and admire you more than you know.