I heard the alarm before his brother came into our room, groggily telling of how he had been awakened by his brother’s alarm and went in to turn it off.
A flag raised in my heart, and I sat up in bed asking, “Did he not turn it off himself?”
“No, but everyone else is awake from it, Mom.”
I spoke to my husband, mentioning that this did not feel right, and quickly went upstairs. Thoughts of worry crossed my mind as I imagined all the reasons that he didn’t turn off his alarm.
Fastidious about being on time and rising early to get his work done, this son of mine also spends his days in a wheelchair and relies on us to be his hands. I felt his forehead and called his name. I rolled his body over and called his name again, and he mumbled, “I’m tired, Mom.”
Watching him take his breath as only a mother does, I covered him back up and told him to take a few hours off school and I’d check on him in a bit. It was a simple cold. Thank you, Jesus.
I walked out of his room and down the stairs and sat in my den, my prayer space, my quiet. It is here I go to for breath, peace and solace. As I pondered why my heart was racing, my mind was alert and I could feel the adrenaline rushing through my body, it occurred to me that this is the reality in our home, not just for this child but also for all of them.
The fluidity of our days requires a surrender to God’s plan every moment. There are times filled with abundant graces of joy and laughter, praise and thanksgiving, and others filled with suffering, worry and surrender. Each day is a gift with each child, no matter what preexisting condition they might have.
As a mother of eight children, two of whom have a rare neuromuscular condition that has them in power wheelchairs not able to use their limbs fully, my life is very full. My days resemble a corporate executive in time management as I move from child to child, teaching, coaching, listening, cheering and then transition seamlessly into wife mode with meals, chores, errands, listening, praying and relaxing.
I love my time with my family, and it is often a paradox in that it relaxes me to just be in their presence. They bring me such joy! Their laughter, thoughts, insights and gentle love are beacons of the Father’s love throughout my day.
Even the growing pains of older kids as they stretch and search for their own identity are beautiful; I get to see them wrestle with the world’s temptations and the calling of who they were made to be. It is a simple privilege.
On many nights, my children whose challenges are less visible have kept me up late and have brought me to my knees. No less dire is their need for communication, connection and affirmation. They need to know they are held just as closely.
When you are a mom of a child with special needs, you are given a visible reminder that you are needed and that, without you, their quality of life would be quite less. It is not pride from which this realization comes but rather the understanding that your hands will be Christ’s in a very tangible way.
It’s easy to have this recognition when someone physically needs your support, but should we not have it as parents always, no matter what our children’s abilities might be? I am pondering this.
We have always raised our family to recognize that everyone has a special need, some you see and some you do not. We must raise all our children with that motherly understanding. My goal is to radiate Christ’s love to my family in how I love, speak, serve and pray for each of them.
That goal requires a keen eye, taking time to invest in each family member, and an utter reliance on the mercy and provision of Jesus Christ.