Meet Naomi — Perinatal Stroke
My name is Stefanie and I would like to share with you the testimony of my daughter Naomi, an in utero stroke survivor.
Usually in the past when I have talked or written about Naomi’s setbacks and triumphs, I shared more detail about the beginning and the circumstances behind her diagnosis, however, today I would like to testify about my daughter and her path in present tense. Her life tests are her testimonies and they will always be hers for the rest of her days. The medical events that have taken place, currently take place, and her future are all chapters that are written by the powers that be. There is no human on this earth that can alter her story. Her story is in good hands, hands that our family believes holds Naomi through each new stage – both tangible and spiritual.
To be brief about the beginning of her life, Naomi had a stroke when she was still in my tummy. The doctors guesstimate that the stroke occurred around 7 months gestation. The doctors also do not know why the stroke happened and again could only “guesstimate” it was due to the placenta or umbilical cord not providing enough blood or oxygen. She had no issues during the full term pregnancy and no one knew there were any problems until the day she was born. On that day, after her movements slowed down and the ultrasound showed strong signs of fetal distress, an emergency C-section was performed. She was having multiple seizures with asphyxiation per hour. It would be a few days later that an MRI showed severe brain damage, indicating a stroke occurred. The odds of her surviving or having a productive life were very low. We lived in the NICU with her for over a month as she was administered several meds, unconscious, fed through an IV tube, and supplied oxygen. It was an extremely dark and scary time for Naomi and all who loved her.
Today, Naomi Erica Johnson is 7 years old and has overcome many developmental obstacles. Her introduction to the world was an obstacle and it seems that she was born with a spirit to step right over those “bumps” so unfairly placed in her life. Since those first moments of her time in the NICU, we never gave up on her. I don’t know if our love was subconsciously empowering her. It seemed more likely that she was just born with an intense tenacity that seemed to create an invisible bubble of strength around her fragile mind and body. Perhaps a little bit of both!
It seemed that her Daddy, brother Stefan, and I fell into a rabbit hole of worry that took our minds into the next “will she be able to” phase. With every doubt and fear we felt at a new task she would need assistance to learn, she ended up meeting that milestone. We learned to pay attention to every little activity. Who knew we would want to throw a party after seeing a shirt get buttoned? Naomi did not seem to have any sense of it possibly being another defeat. She has such a determined and undeterred focus to do any extra steps that a new lesson may require. Due to most of the damage being on the left side of her brain, she wears an AFO on her right leg to help stretch her ankle due to muscle tightness. She also works very hard at writing, reading, adding and speaking. She will chatter and share how her day went at school with only a little bit of help. Honestly, if one helps her too much, that headstrong DNA will be sure to let you know! I truly feel that it is because of the left side brain damage that she has the nurturing, emotional, silly, inventive and feisty personality. A child’s brain is so pliable and a miracle in itself in regards to how those tiny little neurons can find their way to another area to get the task done. I always envision Naomi’s brain as pistons and spark plugs going over the speed limit to meet her determination! This is one little girl that won’t take no for an answer and has the ability to go above the norm to meet “the norm”.
When her older brother Stefan was told “If this is her with a diagnosis, imagine if the stroke didn’t happen!”, he simply replied, “Naomi wouldn’t be as much fun if the stroke hadn’t happened!”. I find it a blessing when the phases of deep sadness and fear occur, because those are the moments that can change a person’s focus on what really is important. No, it isn’t a straight path once a family is abruptly introduced to a whole new world and given a new pair of glasses. Our personal perceptions of life will change. The emotional, mental, spiritual, physical and financial adjustments are different for everyone. There are still moments of tears, worries and grief. There are still stages of grief as we say goodbye to old dreams and keep making new dreams for our special little ones. The plans we envision do not always come to pass but the healing continues to occur- as long as we keep the doors open to the miracles.
Naomi, our super girl, is one of those miracles.
Editor’s Note: Naomi’s Mom has written I See You, Little Naomi, a wonderful children’s book that helps introduce children to the world of special needs. This book can be purchased on Amazon.
