Trisomy 13 and Lexie

Trisomy 13 and Lexie

Lexie was born November 25, 1997.  I was a miraculous 44 years old and she was a child of hope and promise.  Her brother Christian had been born when I was 42, so we believed this was going to be a piece of cake.  Baby number four.  I had no idea that hope and promise would come in the package of trisomy 13.  I’d never heard of such a term.  What do they mean?  What are the doctors telling us?  When they laid her on my chest, I could tell her color wasn’t good, and she was having trouble breathing.  She had a cleft lip and later were told her palate was cleft as well.  They tested her for other problems which was way over our heads of even dreaming something else could be wrong.  I just knew God wouldn’t give us more than we could handle.  What happened?


We spent the next two weeks in NICU, learning how to wash hands and buzz into the nursery.  How to hold our little sweetheart with tubes coming out of everywhere, trying to sustain her life.  How could this beautiful 7 lb. 11 oz. baby with gorgeous blue eyes, and soft blond curls have a fatal diagnosis?  She was already well filled out, it just looked impossible that she might die.  But the doctors all agreed.  Her life expectancy would be 6 months to one year.
Devastated, my husband and I combed through every piece of information we could find.  We couldn’t find anything hopeful on this horrific death sentence.  We located a few books and even called the people that had written one of the books.  But depression and hopelessness filled his voice.  There was no hope anywhere, just we were to wait for her to die.


Trying to align this tragedy with the traumas our family had just faced with the fatal car crash of my dad and my mom being hospitalized for 4 months, didn’t line up with what I thought was going to happen 5 years earlier when I found Jesus. I thought things were going to get better.  Why would God allow all of this suffering?  I was making huge changes to clean up my life from one of self indulgence to living for Jesus.  As I continued to ask my friends questions and to read the scriptures, I found something new.  Comfort in the stories that I found there.  That Jesus and others, had walked through tragedy and it was all to glorify God.  Could this be for me?  I have to admit, I was pretty mad at God.  But He loved me in spite of my anger.
Lexie, proceeded to beat all odds, and all diagnosis.  She had many days where she laughed until she couldn’t catch her breath, and days of crawling around the house, as free as a bird.  Lexie brought our family to the depths of fear and death and to the heights of faith and life.  My husband Mike, was strong and courageous and made many decisions to support our family.  But there were many days of battles and shouting, trying to know how to care for our little Lexie.  Our daughter Amber was in college, and eventually gave up trying to study due to the constant life and death phone calls, that seemed to come on a monthly basis.  But when she was around, she was a rock, helping to walk through this difficult time in our lives.  Dustin, our teenager, just plain checked out.  And I couldn’t blame him.  Our house was not a fun place to be, and I’m sure he found anything he could to be away from our home.  Christian, our inquisitive one year old, was confused by the constant crying and tears one minute,  full of joy and fun the next minute, and adored by everyone in the family.  He was never at a lack for a nurse, parent, sibling or nanny, to tend to his every need.   And that was our home for the next few years.


Lexie lived three and a half years exceeding all expectations and yet, crushing our hopes and dreams that she would live and be healed.  It was such a difficult place to live in.  Loving her with all our hearts, and yet hurting along with her each time she would cry from the next medical treatment she received.  When we buried her, I knew a hole had been ripped out of my heart, and I wondered if I could ever heal.  Would I even know how to live life again?  Our family had been crushed.  Could we ever rebuild our family?  All I knew when we drove away from the cemetery was how thankful I was that I knew Jesus and that I would see her again one day in heaven.  That was all I had to hold on to for a long time.
A short time after she died, I had the picture in my mind of a vineyard growing strong and beautiful, and one day a fire came and burned it down to stumps.  There was a little smoke coming up, the roots were still there, but no more vines.  I felt like that was my family.  Smoking and burned and looking like it was the end, even though I knew the roots were still good.


That was 15 years ago.  My family is slowly but surely building back our relationships.  I see hope.  Some days it’s here today, other days I see it in the future;  and now I know it can happen.
My son Dustin and I have decided to begin a blog and I’ve written a book, to give others hope.  I didn’t have that 15 years ago.  Everywhere I looked back then, I saw death and destruction.  I needed hope.  I pray this will help some along on their journey.  Whether they are beginning the journey, in the middle of the journey, or trying to get back in the saddle, I hope this can help them along the way.  I am a different person than I was 15 years ago.  Stronger, wiser, a little sadder some days, but a lot more hopeful.  I am so grateful for the hope I have found.  I hope this can help you find it too.

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