(Samuel has a rare form of dwarfism called Thanatophoric Dysplasia, TD, a rare and potentially lethal form of dwarfism.}
A Mom’s Perspective
Being the mom of a miracle means I see life through different colored glasses. We are not living the typical life of raising a teenage son who goes to high school, hangs out with friends, and doesn’t want to be hugged by his parents. Far from it.
We aren’t contending with helping our son with homework, or dealing with problems with his friends or having to take him to sports or band practices. Thoughts of which college to attend or wondering about the day he will move away from home are also things we aren’t going to experience.
To understand my perspective of being Samuel’s mom, you have to go back to before he was born. My husband and I were newly married and excited to be expecting our first child. We would watch episodes of The Nanny and wondered what life would be like raising a child together. Our desire to be good parents was strong.
From The Beginning
When we found out our baby’s gender, everything changed. The doctor said, “There’s a problem with your child.” My head spun with the news. How could this be? It must be a false report. But subsequent appointments concluded my son not only had a problem, but his potential diagnosis was “not compatible with life.”
My son’s impending birth was clouded by the question, “Would he live?” Thoughts of his future were replaced with the more immediate need for his ability to breathe. The months that lay ahead changed our perspective from being parents to becoming stewards of a precious miracle baby boy.
For nine years we learned the ins and outs of our son living with a ventilator and monitoring his oxygen level and heart rate. If Samuel coughed, we reached for his suction equipment and albuterol treatment machine. The good days were great and the not so good ones; well, you can imagine.
My Role As A Special Needs Mom
My life as a mom has been one of being a protector, an advocate, and a cheerleader. Samuel has been off the ventilator for five years, and this has made his life less complicated. Yet his life is very different from those of his peers. As a mom, my focus is to help our little guy have a joyous and healthy life.
So, here is where I put my rose-colored glasses on. I know I am not raising a typical teenager. I’m raising an extraordinary one. His infectious joy and laugh make the world a better place. This is no exaggeration. He has fans from Canada, Australia, and Sweden, to name a few.
A Miracle In The Making
I see Samuel’s life in terms of a miracle story.
He’s the boy who the experts said shouldn’t live past birth. His diagnosis, Thanatophoric, means “death-bringing” in Greek. The medical books bear this truth out. At the time of Samuel’s birth, there were no survivors of this diagnosis. I’m pleased that Samuel is not the only miracle. There are more than a dozen children with TD worldwide.
A life who defied all odds and not only survived but exceeded expectations by shedding his ventilator. When Samuel’s home respiratory therapist suggested he would get off his breathing machine one day, I scoffed. No child had ever been able to remove the device. Then it happened to Samuel. He trailblazed the way for others to know that nothing is impossible with God.
His life is not measured by what he can’t do, but by what he can do. Samuel is physically limited. However, with the help of physical, speech, and occupational therapists, his “can do” list has grown larger over the years. He has advanced to using a gait trainer to “walk” around the house. Samuel works with a speech therapist weekly to advance his speaking skills. He is very social and loves to interact with others.
By far, I’d say Samuel’s superpower is to work his way into your heart in no time flat. His smile, his joy, and his inspiration help others see the world in color. His miracle story gives others hope for their miracle. Believing they can happen, as in Samuel’s case, and offering hope that miracles can happen to you.
My Mom Glasses Are Rose Colored
These are the things I focus on as a special needs mom wearing rose colored glasses. Sharing Samuel’s miracle. From writing, Miracle In My Living Room: The Story of a Little Mann, Edition 1 & 2 and Thriving Through Your Trials: Devotions of Miracles, Faith & Prayer, to posting on social media and creating Live Video’s, all point to God’s miracle at work in one little boy with dwarfism.
Has Samuel’s story inspired you to believe in miracles? Comment below and share your miracle story.
“Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
To order Miracle In My Living Room, The Story of a Little Mann, Second Edition, click here: https://changeherstory.org/collections/new-books/products/miracle-in-my-living-room-second-edition
For Thriving Through Your Trials: Devotions of Miracles, Faith & Prayer, click here: https://changeherstory.org/collections/new-books/products/thriving-through-your-trials-pre-order