A guest post by dear friend, Stephanie Pearson:
“I can do all things through Christ who strengthens me“ And He does because I ask Him to and allow Him to daily, sometimes hourly, sometimes with my every breath. For most of my life I knew that verse and thought I understood that verse. It wasn’t until my first child that I really JUST started to understand it’s depth. I have to start by telling you about my beautiful blue eyed boy that God gifted to me. His Father and I laugh about it when we think back to how unprepared we were to be parents! We thought we were ready and had an idea of what we were doing. HaHa! Little did we know that our first gift was only preparation for what was to come. My first born was showing signs of developmental delays around six months old. By the time he was four he was diagnosed with Asperger’s Syndrome which is now known as Autistic Spectrum disorder. Being a parent can be challenging. Being a parent to a boy has it’s own unique set of challenges. Being a parent to a boy with Autism presents a uniquely complicated challenge that to be honest can make you ask God what His return policy is for gifts! Please don’t get me wrong I love my son to pieces! He has taught his father and I more than we thought we were capable of learning. He has taught us what it truly means to have the patience of Job and how to love unconditionally. Most importantly he taught us to rely on God….”Trust in the Lord with all thine heart;and lean not unto thine own understanding.”
Like I said, my son was preparation for what was to come. I knew before my second child was born that I wanted her name to be Grace. I knew that I didn’t want it to be her first name. I also didn’t want people to call her Gracie. So my husband and I named our beautiful baby girl Sydnie Grace. At four months old Sydnie Grace had her first Grand-mal seizure. It lasted to the point that she stopped breathing and her heart stopped. I remember being shoved out of the room by a nurse as a crash cart was being brought in and the room was filling up with people in white coats. I remember begging God for His Mercy and His strength to wash over my daughter’s tiny blue body so that she could survive the seizure that was trying to take her life.
Sydnie Grace will be seventeen years old this year. She was diagnosed at the age of two with Mitochondrial Encephalopathy. At ten years old she was given a primary diagnosis of Dravet Syndrome. She has intractable epilepsy and is severely developmentally delayed. Sydnie will need someone to care for her for the rest of her life. Being her Mom and Caregiver on a daily basis can be overwhelming if I let it. I am told fairly regularly “I don’t know how you do it?” meaning, how do you take care of someone who can not take care of themselves every day? My answer is always simply, it is not me. I am human, I am not superhuman. If I did not ask and truly allow Christ to strengthen me, I could not do it! There are plenty of days that I am so weary from lack of sleep after a long night of seizures, that I can barely put one foot in front of the other, but I do. Every day I ask for God to give me Grace to accept whatever challenge may come and the strength to handle it. There is not a day that goes by that does not present some kind of challenge. Some days it is seizures. Some days it is poop! Yes, poop! Due to the seizures she has Sydnie is incontinent. She learned to use the toilet at about two years old. She knows how to get to the bathroom and what she needs to do but there are some days that her body will not cooperate with her. So Sydnie has to wear pull-ups daily. A case of the roto virus aka stomach bug becomes a seriously challenging day in my house! Those are known as AKA ‘trick poop days’. That means that somehow everything coming out of my child completely misses the pull-up. On those days God sends me strength and grace through my daughter. When I discover that she needed to go to the bathroom and didn’t quite make it in time Sydnie will look at me and say “Saawwry”. She says she is sorry not because she thinks she has done something wrong or thinks she is in trouble. She says sorry because she knows it is not something she wanted to happen and she is going to need help. I tell her that I know it was an accident and it is okay! So precious is that one word ‘sorry’and all that it means coming from her, in that moment my heart is full, my strength renewed and poo is conquered!
She is my heart. She is God’s most perfect gift. She is the reason I learned HOW to allow Christ to strengthen me. As a Mom, as a Caregiver to Special Needs children, I have learned to listen for God in the quiet, as well as the chaos. I also learned that if you focus on listening for Him, you might just hear Him speak through those He entrust you to care for. 😊