When I was pregnant with Samuel and after his birth, I had no examples of hope. We were told of two survivors who had lived in Japan. One passed at 3 years old and another at 7 years old. That is all we knew. No parents to call, no hope from the doctors, and no smiling children to point to. Little did I know then, that my son would become that hope for future families.
In my memoir, Miracle In My Living Room, I share the impact my little man with Thanatophoric dwarfism has had on these special families. Having no knowledge of survivors, many parents are devastated by this not compatible with life diagnosis. My desire in writing this book is to pass on hope where often none is found.
One such family is Shayn and Ashley Mabury. The story of how Samuel impacted them is best told by Ashley herself. These are her words:
We found out on March 13, 2013, that our first-born daughter was going to be born with Dwarfism. At the time, we were 17 weeks pregnant. The specialists told us that there was nothing to worry about. There was a 90% chance she was going to have Achondroplasia, the most common type of dwarfism. From that point on we didn’t see the specialists again. Our OBGYN was going to follow us closely, and we planned to deliver at our local hospital.
We named our daughter, Shayley, a combination of my husband (Shayn) and mine (Ashley) names. She was breeched, and we tried acupuncture to get her to turn, but she would never flip. We were told I wouldn’t go into labor. Instead, we were scheduled for a C-section on August 12, 2013.
Low and behold I went into labor and Shayley decided to grace us with her presence on the morning of August 2, 2013 (Samuel’s 8th birthday). Shayley indeed was born with dwarfism. We were told that she would have to spend at least 7-10 days in the hospital, which to a mother is an eternity. Our NICU doctor (which I would like to say is the BEST Neonatologist there has ever been) had some blood tests done to see exactly which type of dwarfism Shayley had.
A False Negative
When the test came back negative for Achondroplasia, our hearts were shattered. We then did some research on the internet for other forms of dwarfism. This is when I found Samuel’s story and reached out to Evelyn. I told our doctor about Samuel, and he had some more blood work drawn to test for Thanatphoric Dysplasia. This test came back negative as well. The geneticist would later say that it was a false negative.
At 3 weeks Shayley was transferred to St. Louis where she received a tracheostomy and g-tube. This is when we found out that her foramen magnum was very narrow. We weren’t allowed to move her unless she was in a brace. She couldn’t have surgery until she was 3 months old. With every bump in the road that we got, Evelyn and Samuel were there to shine some brightness on our day.
Doctors Losing Hope
Shayley had spinal decompression surgery the week of Thanksgiving. She beat the odds because there was a doctor who came to her room the next day and was shocked she was still there. We would take each day as God would give us. We had many meetings with doctors who were losing hope, but at each meeting, I would bring up Samuel’s story. I encouraged them to reach out to his doctors because he is thriving and achieving many things which were stacked against him.
A Mother’s Hope
I would read Evelyn’s blog which she wrote while Samuel was in the hospital and many days it was if I was writing those words. Shayley went through many of the same struggles and battles Samuel did. Just like any mother would, you don’t lose hope in your children. Children are God’s gift to you and when he is ready to take them home, He will.
I remember saying in many of our doctor meetings; no one is promised tomorrow and when God is ready to take Shayley home then He will but until that day I am going to LOVE and CHERISH each moment God gives me the opportunity to. Samuel and Evelyn helped keep my hopes and dreams alive for Shayley.
This Is Why I Fight
Evelyn sent many prayer requests our way. All I had to do was say Shayley was having a bad day and Evelyn reached out even though miles and miles away. I could feel her arms around me encouraging me to continue being the voice for my baby. Samuel was always there to brighten our day. Each post Evelyn would share about Samuel, I would share with our doctors and tell them this is why I fight. I fight because there is HOPE and TD isn’t always fatal, so the medical books need to be rewritten.
God’s Gift Of Encouragement
Shayley fought for us for 11 wonderful months but lost her battle on July 12, 2014. Shayley and God were the ultimate decision makers. Samuel will always hold a very special place in my heart for many reasons, but for one, in particular, he was God’s gift of encouragement to our family. Evelyn is such an inspiration to mothers out there and a true testament of how a mother ‘s love is stronger than any medical diagnosis.
Ashley loved her daughter well. She never gave up hope for her daughter. She is an example of a mother’s love and hope for her child in the midst of the most challenging circumstances. To have Samuel’s story fuel Ashley’s hope for her daughter is the reason I wrote Miracle In My Living Room. Not only for those facing my son’s diagnosis but for anyone facing a dire diagnosis and to help hope live.
To read Samuel’s story and how he has impacted other families, order a copy of Miracle In My Living Room available November 30 on Amazon and Barnes & Noble. Pre-orders are available online at www.miraclemann.com.