God has blessed me with the gift of being a mother. I have one living child, and that child is “special.” This mothering is all I know. I don’t know “normal,” so I can only speak to my own experiences. Being a parent to any child is no easy task. So much is required of us to deny our own will and expectations. Add to that the challenges of “special needs”—genetic anomalies like Down’s syndrome, physiological disorders like autism and ADHD, medical issues, physical and/or cognitive delays—and the demands of parenting really intensify.
In our experience of navigating through this special type of parenting with our son Michael, his life has taught me so many lessons. Here are my top four:
1. Every life is precious to God and a gift to the world!
In our culture success is often defined by the lucrative career one has established or how physically beautiful or mentally endowed someone is. As Christians, however, we are called to examine the meaning of life more deeply. Wisdom and beauty are intrinsic to the human being. We are created in His image: “So God made man; in the image of God he made him; male and female He made them” (Genesis 1:27).
Nowhere does scripture say that only those with the most obvious gifts are important to the world and to God. We fallen human beings say that. Jesus was even misunderstood in this sense. On the surface He was a common man, a carpenter who worked with His hands. The people in His own country said of Him, “‘Where did this Man get this wisdom and these mighty works? Is this not the carpenter’s son?’ ... So they were offended at Him” (Matthew 13:54, 55, 57). Furthermore, His suffering and perceived “weakness” thereby showed that “in comparison to all men, His form was lacking in honor. He was a man in suffering and knew how to bear sickness … He was dishonored and not esteemed” (Isaiah 53:3).
I am guilty of judging people in a superficial way, falling under the delusion of the Great Liar: “You are of your father the devil … for he is a liar and the father of it” (John 8:44). I buy into the lies that beauty, intellect, power, and praise are “where it’s at.” God, through Michael, is teaching me otherwise. There are admittedly times that I do not fully appreciate Michael’s beauty, and I fail to see his gifts. But, I am coming to a place—by the grace of God—that I don’t need the world to love or understand my child in order for me to love and appreciate him. “You love him,” says the Lord to my soul. Even if Michael’s sole purpose in this life is to fill just one soul (namely mine) with light and joy, that would be an amazing purpose! But I know there’s more God is doing through Michael. Much more.
2. God’s plan for Michael is better than my plan for him.
This is a hard one, with trust at the core of this lesson. It is hard to trust God with your child’s life when, according to your faulty reasoning, God allows him to suffer so much. Michael not only has cognitive challenges but is riddled with medical maladies. Yes, it may be true that God allows him to suffer—He did not cause him to suffer. There is a difference. I do not always understand this difference, but in light of Jesus Christ’s life—the Son of God Himself—I find consolation. “What, then, shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son, but delivered him up for us all, how shall He not with Him also freely give us all things?” (Romans 8:31–32).
I remember when Michael was diagnosed with autism on top of everything else he and we had to deal with. I was crushed at the news and poured out my heart to a beloved confidante. He advised: “Go to the Theotokos and seek her prayers, for as the Mother of our Lord she understands your pain.” I am not proud of my response. “How can she possibly know how I feel? She had a perfect son.” To that Fr. Alex showed me the bigger picture. “Yes, but she also had to accept a path for her son that was different, I’m sure, than what she wanted for Him.” And so I have learned to lean on the Virgin Mary for strength and for her prayers as a mother who must face the pain of her son’s cross—trying to trust like she did, trying to be a humble participant in God’s plan for my child.
With such a range of abilities in the special needs population, the most reliable tenet I believe we can rest upon to teach our children is this: condescension. Condescension is fundamentally what Christ did in His Incarnation. He came to a level to which we could relate. He does so with every soul, seeking to meet her in her unique state of development—even from conception.
With this goal I set out to bring Michael into an experience of God, which our Orthodox Christian Faith allows for so deeply that from the time we are infants we are blessed with being full participants in the sacramental life of the Church. God condescends to our lowly state. In truth, to His eyes, we are all merely infants.
I have always brought my son to church. His unusual behaviors and physical limitations could not ever prevent me from bringing him into his Father’s house. There, he can experience the grace of God in the same ways we all do—if not in smelling the incense then in gazing upon the icons; if not by hearing the melodious hymns then by lighting a candle. If he can not take comfort in being surrounded by loving fellow-believers, then he can participate in the ultimate experience “of all and for all” (Divine Liturgy of St. John Chrysostom): partaking of the precious Body and Blood of Christ. Nothing I could teach his brain could surpass the experience of his heart in this union with his Maker. He cannot read and may not understand language at a level to “hear” the Gospel message in words, but I trust that the Life-Giving Body of the Holy Gifts will allow Him the experience of knowing God.
4. Live a grateful life.
I remember taking a walk a few years ago while prayerfully reflecting upon our lot in life. I was feeling sorry for myself as our family was having more health issues and very few happy moments together. I asked God to help me overcome this sadness. As I was counting my afflictions, something made me look up. What appeared to be a traffic sign flashed the words “THANK YOU.” It was a sign at the exit of the local elementary school thanking people for driving slowly.
That sign was a true “sign” in the biblical sense for me—a miracle provided by God. It was a poignant reminder to count my blessings, and it propelled me forward with a shift in the way I was examining my life. I began again to thank God for what I did have—and I did have so much!
Michael is alive! In spite of many a doctor’s prognosis he has defeated the odds and lived years of life. Michael is teaching us many lessons and shaping us into people more acquainted with self-sacrifice. I will never have to fear for his salvation or worry that he will choose the wrong path in life. In his lack of worldly knowledge, he has received gifts I can only dream of someday acquiring: innocence, humility, authenticity, purity. And we do experience joy together! The moments may look different than a typical relationship’s, but they are there. There is love deep and true in our lives.
I recently heard a contemporary Christian song that brought me to tears. The words could be my child’s:
“If I had no voice
If I had no tongue,
I would dance for You like the rising sun.
And when that day comes and I see Your face
I will shout Your endless glorious praise.” (Dixon)
My son is nonverbal but his smile speaks volumes. My son will never be able to care for himself, but in his sweet simplicity he provides for my cold heart, filling it with warmth. Michael isn’t able (yet) to be a part of our church dance group, but his life is a dance—a gritty, soulful offering to the Lord.
Michael will celebrate his 11th birthday on April 11th. He was born into this world on Pascha. I believe this was a message from Christ to us that his birth—with all its frailty and trials—would indeed bear spiritual fruit and usher us into a new life. There is a purpose for Michael’s life, just as there is for every human being’s life ever to be conceived. All is not in vain when we believe in His promises and trust in His victory for us and with the Church cry out, “We worship Your Passion, O Christ. Show us also, Your glorious Resurrection” (Papadeas 2005).
Presvytera Melanie DiStefano lives with her husband Rev. Fr. Joseph DiStefano and their son Michael Seraphim in Monessen, Pennsylvania. Together they serve the parish of St. Spyridon Greek Orthodox Church. Melanie has a background in Chemical Engineering and graduated from Holy Cross School of Theology with a Masters of Divinity in 2003.