From the Heart of a Parent: Michael’s Story

By: Kristina Marriott

John von Goethe said it best, “In all things it is better to hope than to despair,“ but Goethe did not have a special needs child to care for. In today’s modern world it is so easy to lose hope, no matter who you are. As a family with a special needs child, we hear the words “limitations” and “cannot” by doctors, science, and our social culture on a daily basis.  However, there is a place that provides strength when families are weak, peace when overwhelmed, and hope when all seems lost. A guiding light in the darkest storms, a place one can call home, a place called The Little Light House.

Our oldest child and only son, Michael, was born on a rainy Thursday morning, October 18 of 2007. He was a hefty 9lbs 10oz, but considered very healthy. Naturally due to his size, he was slow to hit a few developmental milestones. However, he crawled, cruised, bounced, and at one time even talked. However, he soon lost all those abilities. So our journey begins. Medical test after medical test, tear after tear, question after question, Michael was finally diagnosed with Phelan-McDermid Syndrome (PMS) also known as 22q13 deletion, at the age of 2.  Somewhere between doctors’ visits, hospital visits, and therapy, we put Michael on the waiting list for the Little Light House.

 

We were excited that such a place existed for our son, but we had our doubts of even getting in; the waiting list was just so long.  I remember getting his waiting list letter, and through two major house moves that piece of paper stayed on our fridge for 1 year, 10 months, and 16 days.  One day, when checking the mail, an envelope caught my attention immediately. The envelope was white written in black ink and in cursive, addressed to The Marriott Family. The envelope was damp and practically pealed open. I pulled out the letter, unfolded it, and read the first three lines. I collapsed on the floor in tears. I couldn’t even finish reading the letter. Hysterically, I pulled myself off the floor, walked towards our fridge, removed the magnet holding the waiting list letter, and held the two papers in my hand. I quickly compared the dates and while still in tears, happily threw away the waiting list letter. It was finally Michael’s turn!

The transition to the Little Light House was a bit rough on us. We thought we knew what was best for him. He was completely dependent upon us and our extensive schedule centered on him.  The first year was rocky, but he made progress towards interacting with others, self-feeding, and becoming more independent.  The entire staff knew exactly how to push Michael in the right ways and helped us understand that Michael is capable of so much more than what science labels him as.

 

The second and third year has been nothing short of amazing.  Every morning Michael starts his day out at the Little Light House with visiting the gym and bouncing on the trampoline. He then walks assisted to the slide and gradually climbs up, with minor help, to slide down. From there he walks to his class room with minor assistance to start his day.  He really is like any other active little boy, he just wants to have fun and explore life. If you would ask any teacher who the biggest child is, Michael’s name is sure to come up, but he is not just large in size, but in personality.  Each day he grows a little more; each day he gains a new friend. His smile grows a little bit bigger and his ambitions a little larger. As of last week, Michael has been walking UNASSISTED from his class room, through the hallway, and outside to our car. Nothing short of a miracle in my eyes and it is hard to believe this is his last year.

It is funny that what the Little Light House does not tell you, is that although they work with our children daily, in the end they really help your family as a whole. They have taught us so much, they have provided us with resources we did not even know existed, and they have continued to support us as a family. We are so sad, and yet so happy, that Michael will be graduating in just a few short weeks. The Little Light House has provided us a community, a system of close friends, that is forever with us. We are transitioning to Broken Arrow Public schools and although we are not sure what the future holds, we will face it head on.  If you gain anything from this article may it be the message and reminder of hope. Not every day is good, not every day is easy, but we are blessed that tomorrow is a new day and a new chance to try again. The best words I can share with you are Promoveo Promovi Promotum, which translates to push forward, move ahead, and advance.

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