Refocus

With both eyes glued to my son, I attempted to carry on a conversation with my fellow mom friends. I scanned the play area and took inventory of everything that Grant could hurt himself on: uneven ground, steps, the plank that bordered the playground… 

 

Play dates at the park always make me nervous, I thought to myself, So much chaos and uncertainty.

I watched Grant trying his best to keep up with the other children. He wants to be just like them.

Grant began to climb up the stairs to go down the slide and stumbled forward. I inhaled sharply and lunged forward, catching him just before he crashed landed.

A few months ago Grant was diagnosed with Fragile X Syndrome. It is the number one known genetic cause of autism and the most common cause of inherited mental impairment. A significant component of the syndrome is Sensory Processing Disorder. 

Sensory Processing Disorder (SPD), formerly known as sensory integration dysfunction, is a condition that exists when the eight sensory signals we have (touch, taste, smell, hearing, sight, vestibular, proprioception, and interoception) jam together and do not get organized into appropriate responses. 

SPD affects Grant’s whole world - the way he eats, walks, plays, and filters the commotion of the environment around him.

When Grant was learning to walk he had a very difficult time transitioning one surface to another and he was absolutely terrified of cracks in the sidewalk. Because of his perception issues related to SPD, Grant found it difficult to judge the depth of an ordinary crack. His whole body would shake with fear when he approached certain spots during our afternoon walks. I had to hold his hand and guide him. To his eyes, those cracks could have been deep caverns.

When I realized the details of Grant’s condition, I put on a brave face but inwardly cascaded into a valley of darkness.  My life had changed in an instant. One day I was a normal mom – the next I was the mom of a special needs child who would never live independently. The dreams for my son’s future shattered and I felt lost, alone, and hopeless. I went into mourning. My mourning gave way to bitterness. I felt haunted by my new reality. Any public place was a platform to display the life that was taken away from me. 

A couple months after Grant’s Fragile X Syndrome diagnosis, I was standing in line at the grocery store and I overheard a conversation between a mother and her teenage son. They were talking about the teenager getting his homework done so he could drive over to a friend’s house. It was a normal conversation that wouldn’t have caught anyone else’s attention, but I felt as if I had been slapped in the face. I dropped my items and fled to my car. 

Sobbing, I cried out to God, "Will Grant ever drive a car? Will he learn how to be “socially acceptable” enough to have friends? Who will take care of him when I am gone? Oh Lord, why did you choose to give my son a life so full of trials?!" 

God replied by putting a verse on my heart:

Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD your God, the Holy One of Israel, your Savior…
Isaiah 43: 1b-3a

 It was then that my focus began to adjust. I didn’t want to live a life stuck in sadness. I wanted to move on. I began to focus on the blessings God had given me and lean heavily on Him to provide our needs. My son, and my family, will have many struggles. But all of this is for God’s glory and if I rest in Him there will also be much peace and joy. 

I spent too long wanting what was taken from me and not what was given.
Prince Caspian from The Voyager of the Dawn Treader

I am pleased to say that with a lot of hard work and therapy, Grant now walks with ease over any crack. We love our evening walks as a family. 

I am still learning how to move on. I'm guessing it just takes time as I follow God's lead.

Follow-up: While events such as play dates at the park (or trips to the store, etc) were and, at times, continue to be a source of stress for me, they are very necessary for Grant. He needs to learn how to navigate through challenges and I need to let him be challenged. My job as Grant's mom is not only to be his protector and advocator, but also to be the person who lovingly pushes him to grow and develop (even though it can be hard to watch him struggle). I know Grant will go far. God is going to use him in a big way for His glory!

This post was originally published at Jennifer Hudson Taylor. Slight changes have been made.