My story, or shall I say Naomi's story, began in June 2008 when to my amazement, I found out I was pregnant! As I adjusted to being a mom for a second time at the age of 38, I again enjoyed tracking the growth of the beautiful fetus in my tummy. I looked forward to all the stages of feeling her kick, finding out she was a girl, and letting my 8 year old son feel her gazillion movements. She was definitely my karate kid/yoga instructor as she made my belly her home.
My pregnancy was free of any issues for the entire duration. I started my pregnancy leave from my job and relaxed at home watching TLC baby shows. I cried my eyes out during the baby shows that featured beautiful, tiny little beings in a NICU fighting for their lives. My eyes were glued to the shows where everything went smoothly and the new parents adjusted to their new creation.
On March 18, 2009, approximately 36 weeks gestation, I was at home with my son Stefan when I noticed Naomi's movements in my belly had lessened. Concerned, I called the hospital and they suggested I eat something cold then count the kicks. I did as instructed, chewed on some ice and felt small, gentle movements. But, my instinct was telling me that something wasn't right. This fetus went from kicking like a Tae Kwon Do instructor to light kicks. I called the hospital back and they stated movements were a good sign but I could come in if I wanted to be reassured.
Thank God I did go that day. What I thought would be a check-up and then back home, turned out to be much more than expected. Doctors heard a low heart rate and saw no amniotic fluid surrounding her. As my son held my hand through the thin hospital curtain, the doctors frantically prepped me for surgery as I was signing the medical documents with extremely shaky hands. WHAT in the world was happening to my baby? I was literally shaking so badly that the doctor was having trouble administering the epidural that would numb me from the waist down but keep me perfectly aware of my surroundings. I almost wish they had just let me be unconcious!
Finally, Naomi was quickly introduced to the world and the baby that shared my body was not doing well. As I watched them perform an apgar score, she shook uncontrollably many times. The doctors told me everything was fine to keep me calm but it was far from the truth. I would not get to hold my baby until 3 days later. Little did I know that I would be that parent sitting next to her baby in the NICU, in such deep shock that my husband Eric would reveal statements and questions I don't remember hearing or asking. I was in grief mode. My brain had crumbled as I became "that other family" who experiences a medically traumatic event. My brain had to disconnect for those first few days. I felt like I was locked in a time warp where everything was tumbling down around my baby girl.
Naomi turned out to be a fighter and I began calling her my "Little Warrior Princess" as I shared updates to family and friends on her progress. She started out on four medications her first week of life due to her multiple seizures with asphyxiation per hour. At 3 days old, her MRI showed severe brain damage due to an enutero stroke at 7 months gestation even though they could not determine the cause of it. The doctors stated it was highly likely Naomi would have a low quality of life as she lay in her incubator unconscious, being fed thru tubes as the oxygen support helped her breath. The doctors stared at me as they stood at the end of my hospital bed. I just laid there shaking my head and repeating "No! God would not do this to me a second time!" (the "first time" was several years ago when I endured the loss of my other son at 6 months gestation due to a non-genetic brain malformation). Later I would be told that they were concerned I was in denial. Today I call it faith. My family had people praying from all over the world for her. I still say the same prayer to her today that I whispered in her ear as I leaned over the incubator. She was not going to go down without a fight and whatever tried to take my child would have to get through me first!!
She was finally weaned, one by one, off the seizure medications. I finally got to hold her. Her brother finally got to kiss her. Her daddy finally got to read her a story. The NICU chairs surrounding her were definitely occupied throughout each day.
After a month long stay at the hospital, Eric and I got to take Naomi home. We began the healing and the adjustment process within our family. The healing of the shell shock scars, the healing of Naomi's tiny little brain, and the healing of our emotional struggles of fears versus acceptance. The adjustment of multiple tests, administering seizure medications, appointments and paperwork came with many tears of despair for all of us. I would be lying if I stated I never had a breakdown. However, never in our lifetime could we have foreseen the unexplainable triumphs or the multitude of miracles experienced as I type this almost 7 years later.
Today, Naomi is diagnosed with mild right hemiparesis cerebral palsy and is prone to seizures. Basically this means she has more damage on her left brain which affects her cognitive development and her leg muscles on the right side of her body. She also wears an AFO to stretch the muscles in her Achilles tendon. Although her brain takes a longer path, she always meets each milestone. Considering we were told that she may not live and if she survived she would have low quality of life, we find our joy in the little things. Our entire family's priorities have deepened to a level that only other special needs families can understand.
Her MRI may tell one grim story but God is writing the many chapters of her life. No one can explain what is going on behind the damaged brain tissue. I simply say "MIRACLES".
My name is Stefanie Boggs-Johnson. I am a mom of two great kids, a wife of a wonderful man, and a full-time special needs job coach.
I've always had a creative knack since a child, I loved to write and still do. I again started my writing as an outlet of the unforeseen events of my youngest child Naomi, a survivor of pediatric stroke. I hope my first children's book "I See You, Little Naomi" educates our little ones.
Stefanie, Daddy ( Eric Johnson), Naomi and big brother Stefan (Bo Bo)
Meet Naomi and get to know about her unique life because of a boo-boo that others can't see. A survivor of pediatric stroke, her story will introduce children to the world of special needs and that it's okay to be curious about others who may look or act differently. Children will learn compassion and love by understanding the reasons why some people may need extra help doing the same things they do.