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Nicole Johnson reflects on the challenges of raising a daughter with special needs and how hard it can be sometimes to see God in the difficult days.


The tears started as soon as I jumped in the car and sped down the road to the end of our street. “Why?” I cried out in utter frustration. “Just why?” My daughter’s high school buddy was shaken and in tears when I pulled up beside them; my extra-chromosome-carrying daughter smiling in the front seat as if nothing had happened.

The two had just enjoyed dinner together at Mary’s favorite burger joint and all had been well until they got in the car to drive home. Without any reason or explanation, Mary became frustrated and started grabbing for the wheel and pulling her buddy’s hair. Once they were safely on our street, she pulled over and called me to come and meet them, as Mary’s behavior was too severe for her to focus on driving.

The flood of emotions when hearing the fear and vulnerability in her voice on the phone was enough to drown me. I care about this young woman deeply and immediately cursed myself for allowing this to happen. Her buddy had worked so hard over the past several months to establish a relationship with Mary and brought an admirable level of maturity, patience and heart to their friendship. Although I would never have guessed Mary would act like this with her, even the possibility was too much to place on a 16-year-old with no training in the department of all things Mary.

 

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At twelve years old, my daughter has never had a longstanding friendship with someone her age. Living with Down syndrome, she has always been intimidated by her typically developing peers and, despite several attempts to make a connection that would work, my world has consisted more of apologies in that department than anything else. She was less than two the first time I had to call it quits with a little neighbor friend who got her hair pulled one too many times. While it is common for Mary to stay stuck in certain stages for long periods of time, it boggles my mind that, ten years later, she continues to default to this aggressive behavior to communicate whatever it is she can’t seem to verbalize. She absolutely knows right from wrong, yet doesn’t understand the seriousness of her actions or the depth of the potential consequences when she acts out this way.

With two brothers, seven and nine years older than her, Mary has always interacted most comfortably with older kids. It is the age level she has been surrounded with and the incredible bonds and trust she has with her brothers has logically transferred to other kids their age. With both of them off to college this year, I knew Mary would struggle, so I reached out to the daughter of a good friend to see if she might be interested in babysitting. Of course, I don’t have a baby, nor do I want Mary feeling like one, so we have been careful to designate their time together as “buddy time.” They have spent many an hour playing dolls and hide and seek and occasionally went off to do “big girl” things like seeing a movie or getting manicures. Mary quickly fell in love with her and so did I. She is real, compassionate, laid back, patient, and so very present.

Lack of control is not my thing, and this latest incident has been an unwelcome reminder that I am not in control. I am vulnerable and fragile and the constant stream of tears that fell for the next several hours left me facing a truth I try to avoid; my daughter has special needs and raising a child with special needs is hard—and messy—and hard. My heart breaks a million times over and there are days I feel like I am playing an endless game of hide-and-seek with God, unable to see Him in the difficult.

 

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I was quick to ruminate in the negative and the question of why this whole incident happened circled my mind throughout the night. If I’m being completely honest and real, the question was directed at God. I’ve been praying for many years for a friend for Mary, for her ability to regulate her emotions and frustrations without the use of aggressive behavior. I had covered Mary and her buddy in prayer every time they were together. I couldn’t see Him in all of this and didn’t know what I was supposed to be learning.

After waking up nearly every hour on the hour, I gave in and made my way downstairs for coffee. Mary was already up and playing with her dolls; music blasting and singing along to High School Musical. She couldn’t identify with the heaviness I carried into the new day. She was ready to move on, to laugh and play and live in her world of little consequence. I picked up my phone and scrolled through pictures I had taken that weekend of Mary and her brother and slowly started to hear what God was trying to say.

 

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There are days I feel like I am playing an endless game of hide-and-seek with God, unable to see Him in the difficult. #catholicmom

 

“Your prayers have not gone unanswered.” He gently nudged through the smiles on Mary’s face in the pictures with her brother. “I’ve given her two lifelong friends and have filled her world with the love and affection of everyone she meets. I gave her buddy patience and the presence of mind to stay calm yesterday and get them to a safe spot where she could pull over and call for help. She even had the grace and compassion to smile through her tears and tell you it was all OK. 

"And even though this world of special-needs parenting can feel isolating, I’ve given you so many people to love you through it. While your friend was trying to calm her daughter who had been hurt and scared, she worried for you and reached out to make sure you were OK. Your husband and buoy gently anchored you once again to the truth that this little girl I have entrusted to you is not typical and this journey of raising her will have its valleys. But I’ve given you one another to grab hold of and climb on out and up again. I am always watching and always with you.” 

Like a young child who has pulled herself from a tantrum, I slowly acknowledged His presence and sheepishly answered, “Thank you. Now I see you.”

 

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Copyright 2022 Nicole Johnson
Images: Canva