
Trisomy 13 and Lexie
September 20, 2012
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LEARNING TO COPE
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.
NEVER A RIGHT TIME
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.

LETTING GO
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.
AFTER LEXIE
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.