I’m often asked by friends and acquaintances, “How do you do it all?” This statement usually comes after someone has observed me when I’m out and about with my two kids in tow, likely trying to redirect Skyler from reaching out to pull someone’s beautiful, long hair or smacking the arm of a passerby.
What they “know” and who they see is a mother with two teenagers, one with significant special needs, who never seems rattled or forgets anything.
My response is usually just a smile and shrug of the shoulders, or I dismiss what I assume is meant as a compliment by laughing and saying, “You must’ve just caught me on a good day.”
Often, when I describe what a day in our life looks like, people are visibly exhausted just listening to my reality and almost always say, “I could never do it; you are the strongest person I know.”
I started really thinking about those words uttered to me thousands of times over the past 18 years. “I could never do it.” I reflect back to when I repeatedly said a similar phrase to myself (and to God) when Skyler was a newly diagnosed toddler: “I can’t do this. I don’t have the strength or patience.”
I grew up a fiercely devoted Catholic who not only participated in the Sacraments of Initiation — Baptism, Holy Communion and Confirmation — but also attended mass every Sunday morning. Even if I’d spent the night at a friend’s house, there was no skipping church.
I felt like I had a fairly strong relationship with God throughout my life, although I didn’t proactively communicate with him very often.
When I received Skyler’s diagnosis, I was initially furious at myself, thinking this was somehow my fault, because I had carried him in my body. However, my overwhelming anger and frustration then shifted to blaming God.
How could he punish me in this way?
I’ve always been a thoughtful and generous person who put others before myself and withstood my own painful childhood growing up the child of an absentee, alcoholic father.
Why then would He bless other parents with perfectly healthy children and provide me with this incredibly cruel challenge of raising an imperfect child?
I carried on with these beliefs for several years, refused to attend church and practically lost my shit anytime someone reassuringly said, “God only gives you what you can handle.” I wanted to scream from the rooftops, “That’s not true because I am not strong enough to handle this!” I was losing my faith.
I had spent my lifetime praying that one day I would have a glorious life characterized by a loving and supportive marriage and beautiful, healthy children – not a divorced mother of two, one with severe autism.
Throughout my pregnancy with Skyler, I daydreamed about what he would look like, the sports or activities he might be involved in and essentially made plans for the next 18 years of his life, only to have it all drastically altered. I mean, honestly, what parent would ever consider an autism diagnosis — or any ailment that significantly impacted their child’s life — a “blessing?”
I certainly never looked up to the sky and said, “Thank you so much, God, for giving me this incredibly difficult challenge.” Instead, I would spend many years navigating through seizures, therapies, medications and behavior plans.
It was not what I had planned in the slightest, but it was the reality I had accepted.
Despite losing my faith in God, I remained steadfast in believing “everything happens for a reason” and ‘when one door closes, another door opens.” However, I always found it annoying that the reason for our struggles or the newly opened door wasn’t often clear, or didn’t happen as fast I would like.
After all, I am a planner by nature, and it is frustrating when my plans don’t come to fruition how or when I want them to. So, during those incredibly challenging years of single parenting and navigating the world on my own terms, if someone would have told me my faith in God would not only be restored but that I would listen intently to His guidance for my future decisions, I would have laughed hysterically.
In hindsight, I now know that meeting my current husband, Josh, was divine intervention. He entered our lives at a time my family needed him most.
As our relationship became more serious, so did our discussions. The deeply thoughtful perspective and highly spiritual outlook Josh brings to every situation really forced me do some serious soul searching to find clarity in my misdirected anger at God.
By reopening my heart and daily dialogue with God, I came to realize that He does not inflict punishment, nor does he make anything imperfect.
I recognize that fully accepting and understanding the significance of why my child was diagnosed with this confusing and incurable disorder is something that could take a lifetime. Or it’s quite possible that I never will truly gain the meaning behind the bigger picture.
I now firmly believe that God is using Skyler as a vessel to teach me, and possibly everyone he comes in contact with, some valuable life lessons — patience, gratitude and perhaps an antidote to our societal obsession with perfection.
I can confidently say I’ve grown leaps and bounds emotionally and spiritually during the past 12 years through tons of reflection and prayer, but my journey is not even close to finished.
I now fully grasp that God has a plan for me, for Skyler and for our entire family that may or may not ever be revealed to me. He has chosen me to nurture and guide His beloved Skyler through life.
The amount of trust He bestowed on me to raise Skyler with an open mind and unconditional love no longer goes unappreciated.
Skyler’s determination is unsurpassed and consistently teaches us how to find enjoyment in the simplest things.
I thank God each day for ensuring my path crossed with Josh at just the right time — on God’s time and according to His plan.
By opening up my heart and mind to allow God’s direction and guidance for my life and Skyler’s life to take shape, I’ve found true joy in the daily blessings, big and small.
Being Skyler’s mom makes me extremely proud, and I am forever grateful to God for entrusting me with this precious and admirable son.
*Excerpt from my memoir “Welcome To My Life – A Personal Parenting Journey Through Autism“
