The Privilege of Raising a Child with Down Syndrome

“You are a joy for Jesus.” A priest once told this to me in confession, and I was startled and surprised. I am so often aware of my faults and failings. They pile up before my eyes and fill me with self-doubt and discouragement. How could I, a spiritual weakling, one who does not pray enough and falls into the same sins again and again, possibly be a joy for Jesus? 

It took a child with Down Syndrome to show me how.

Many of you know that Junior has an extra chromosome. It put four holes in his heart (which thankfully closed up on their own). It made his arms and legs too short for his torso. It makes him prone to all kinds of health problems.  And it has made his intellectual development slower than that of his typically developing peers. With T21, Junior is especially needy and dependent.

But it’s his very neediness and dependency that makes us love him all the more. Junior’s Down Syndrome elicits from  us a special tenderness and affection, one marked with patience, compassion, and protectiveness. We can even say that we love his little extra chromosome, for although it sometimes causes suffering and challenges, it is a part of the marvelous person  that he is. Like so many other parents of children with Down Syndrome, we wouldn’t change a thing.

Knowing that he has to struggle so hard to do even the simplest things, we rejoice when he hits a milestone or achieves a new skill. Last week, after months of practicing the word “up,” he finally tacked on the ending “p” consonant. Wow! Whoopeeee! Up! Up! UP! Now, whenever he practices the word “up,” he climbs up on the couch, stands up,  raises his arms up, and triumphantly exclaims, “UP!” And the rest of us are cheering him on.

I sometimes wonder what other people see when they meet Junior. Do they see a tongue that hangs out, flattened facial features, and a speech-delayed child?  I’m always aware of his T21, but when I look at Junior, here’s what I see: a happy, out-going child who makes people smile; a genius at making us laugh with his crazy antics; a loving, affectionate toddler; a little kid who works really hard at learning to speak, a naughty brown-haired boy with chubby cheeks and joy sparkling in his eyes. I don’t see disability. I see joy.

I think our love for Junior is but a dim reflection of God’s incredible love for us. We are all spiritually disabled because of original sin. It has weakened our will and clouded our intellect. It has rendered us prone to sickness of the soul. And yet we call original sin Felix Culpa.Felix Culpa!” we pray during the Easter vigil. “O happy fault that earned for us so great a glorious Redeemer.” Original sin, despite all the miseries it has caused throughout the ages, is nonetheless a “happy fault” because it allows God to pour out his love and mercy in extravagant abundance. And Our Lord longs to pour out his mercy.

I even dare to think that God loves us not in spite of our imperfections but because of them.

Of course every little sin we commit is a grievous offense to God – mostly because He knows how our sins damage our souls and hurt the people around us. Our sins He does not love. But we make our weaknesses and imperfections lovable (yes, lovable!) when we humbly come before Him and pray with the childlike confidence of St. Therese: Lord, I am too small and weak for the steep road of perfection. Carry me in your ams, instead! Just as Junior’s special needs draw down our love for him, so too our weaknesses and imperfections draw down the love and mercy of Christ. 

To further illustrate: Whenever the weather is fair, I try to take Junior for a good, long walk. Inevitably, he grows weary. Towards the end of the walk, he holds his arms up, asking to be carried. My thirty-pound baby wants to be carried the rest of the way home. I know better… he should walk and get the exercise. But he knows better, too…. he knows if he persists, I’ll give in. And I do, because, well, he’s irresistible. I scoop him into my arms and carry him home, smothering him with kisses. 

God Our Father does the same with us. Jacques Philippe writes of St. Therese:

Seeing clearly that God is an Infinitely Good Father, she (St. Therese) realized that her littleness and weakness would draw down the Father’s help. She realized she could trust God…her Father…because she was a child, a daughter, of the Father!  She saw she could take God by love! 

With our weaknesses we can take God by love. But we need to have confidence — confidence in God’s plan for our lives, confidence in his mercy and love.

So, we don’t need to be robust spiritual giants to become holy. We needn’t expect to see great strides in our paths to perfection. For some, that is the path God has chosen. But for us ordinary ones, the path of holiness is one of spiritual childhood, of being a little child carried in the arms of Our Lord. “Holiness is not one exercise or another,” writes St. Therese. “It consists in a disposition of the heart, which renders us humble and little in the hands of God, conscious of our weakness but confident, even daringly confident, in God’s goodness.”

And God, knowing how little good we are capable of, is infinitely patient.  Just as we rejoice when Junior says the word “Up,” Our Lord is pleased by our feeble attempts to do good. My husband and I don’t say to each other, “Why isn’t Junior speaking in complete sentences? What a lazy one he is!” Rather, we know what a challenge it is for him to learn to speak, and we see how hard he tries. Sometimes he even grabs my face and watches my lips intently, trying to figure out how I speak.  So when he learns a new word, we rejoice and applaud.  Similarly, Our Lord knows our weakness. He doesn’t condemn us for our shortcomings or compare us to others.   What is important to Him is our love, our desire to do His will. And when we actually do a little good, realizing any good we do is His gift and grace after all, He rejoices and encourages. 

In order to really have confidence in Our Lord, we need to understand how God sees us. Does He see us as souls sullied and disabled by original sin? Does he see you as one who does not pray enough? One who falls into the same sins again and again?

“You must believe in mercy to the point of believing that you are a joy for Jesus,” writes Fr. Jean C.J. d’Elbee. He goes on to write:

Ask yourself, “How does Jesus see me?” He sees me as His child since my baptism. He sees me, since my confirmation, filled with the superabundance of the gifts of the His Spirit, marked with the indelible character of a soldier of His kingdom. He sees married people bathed in the grace of the sacrament of marriage. And, looking at husband and wife, He thinks of His union with the Church. He sees me as His lamb which has so often let itself be led back to the fold in His arms, purified by absolution. He sees my soul transformed into Himself by Mass and Communion — my soul, where His Father and He have made their dwelling place, because, “If anyone love me he will keep my word, and my Father will love him, and we will come to him and will make our abode with him.” These are the actual realities of sacramental graces!

How many causes of joy for Him there are in us!

What more does He see? All you have done for Him: your prayers, your good impulses, all the acts which, in the course of your life, have been determined by faith, your hope, and your love; your acts of generosity, your acts of charity, especially which you have forgotten in part but which Jesus has not forgotten because they are engraved in His Heart…

And if, in addition to all that, you give Him your many miseries with great humility, but also with great confidence, then you give Him His great joy — His joy of being Savior. 

Fr. Jean C.J. d’Elbee. I believe in Love

My husband and I are incredibly blessed to have Junior in our lives. For, in his simplicity and utter dependency, he teaches us so much about spiritual childhood. He shows us that God loves us as we are, even with our imperfections, because they allow Him to pour out His mercy. Junior  shows us that God is infinitely patient and encouraging. And although we are blemished by original sin, greater still are the marks of the His love, stamped on our souls through the sacraments. When God looks upon us, he doesn’t see disability. He sees joy.

You are a joy for Jesus.

7 thoughts on “The Privilege of Raising a Child with Down Syndrome

  1. “Sometimes he even grabs my face and watches my lips intently, trying to figure out how I speak.” — my absolute favorite part. Thank you so much for sharing. I just read a book by Jean Vanier called “We Need Each Other” where he says “Those with disabilities have been my teachers and have gradually opened me to know and accept my own fears and disabilities.”

    Like

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