Lydia’s Story

It would be impossible for me to start this blog without telling you about my daughter Lydia. Our long-awaited first born child came into this world on August 20, 2009. Seconds after her birth, the doctors knew something was wrong. She seemed to be exhibiting signs of seizure activity, couldn’t breathe on her own and had no muscle tone.  She was whisked away to the NICU, which would be her home for the first five weeks of her life.

After three weeks of insane ups and downs, Lydia was finally diagnosed with a rare genetic disorder called Zellweger Syndrome. Basically, her cells lacked the key ingredient (peroxisomes) to dispose of their waste, and the build up of this waste would eventually poison her kidneys, liver and brain. The seizure activity was evidence that she was already in decline.

Despite her unstable condition, the doctors agreed to let us bring her home as soon as we felt prepared. They (and we) believed that we were taking her home to die, but we wanted whatever time God would give us to be a family to be in our home. With great trepidation, we brought her home from the hospital on September 25th. For a while, as we waited for the inevitable, we had hospice nurses with us round the clock. We truly believed she would be with us for weeks, if not days.

But our strong little girl surprised us. Though her seizure activity was present and would get increasingly worse as the days went on, she stayed with us. We were blessed to have her with us to make many sweet memories. We read countless books, sang hundred of songs (some real and others made up). We planted seeds to grow in our garden and baked cookies. We traveled to Maine. We had her with us for Halloween, Thanksgiving, Christmas and Easter. We had a birthday party for her when she turned six months old. We did all these things and countless others in time that we never thought we would have.

As the months went by, she began to decline. She hardly woke up, except when she was having seizures. Many long hours were spent on the couch or in the rocking chair in her room, holding her as she had seizures.

On April 28th, after listening to her lungs and hearing some very loud crackling (a sign of fluid) we took her to get a chest x-ray. We didn’t need to wait for the doctor to tell us – her heart was enlarged, her lungs full of fluid. There was no chance she’d make it through this without going to the hospital, and even then, it was doubtful.
She took her last breaths quietly and peacefully in our arms.

My sweet girl was and remains an inspiration to me. All of these things I do, I do to help ease the pain of the hole that’s left in me now. If I can bring joy to other people by doing that, I count it a gift and a blessing.

To read about Lydia’s life and my moving forward through life without her, check out my other blog, Lydia Eileen.



  1. Just wanted to say that I read Lydia’s story. Sometimes I happen upon these blogs. It seems so random just clicking through blog after blog after blog. But I want to believe that it’s more than just a random click.

    I have read many sad stories. And every time I do, I hug my children tighter. Say I love you one more time. Go make sure they’re tucked in. And apologize to them for losing my patience in a moment of weakness.

    Lydia was so beautiful and although I don’t know you personally and have never met her, she has touched me. What a beautiful little girl and now a beautiful little angel to watch over you all your life.

    Thank you for sharing Lydia’s story with me.

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