A Note to Parents of Special-Needs Children

Earlier this month, in a story called “What I Saw on Respect Life Sunday,” I wrote about witnessing the love between parents and their special-needs children at Mass. This past weekend, by God’s grace, I had the privilege once again to see this kind of love in action when I sat at Mass in the pew behind my friend Marybeth and her daughter, Emily, who is autistic.

I have written before about Marybeth and Emily, and about the experience of being at Mass with them. The love between this mother and daughter has taken my breath away for years, ever since Emily was a little girl. Now an older teen, Emily still brightens every room with her childlike spirit, and renders me awestruck with her heartfelt devotion to the Mass.

When this Mass began, Marybeth and Emily opened the missalette, and together they followed along with the readings and prayers, Marybeth pointing to their place on the page, for the rest of the Mass. They found all the songs in the hymnal (hearing Emily belt out the name “Jesus” made me feel like I had a front-row seat to a worship session in heaven). When she recognized familiar Scripture verses and liturgical prayers, Emily recited them ardently along with the lector, deacon, or priest.

Over the years I’ve known her, Emily’s enthusiasm for every word and prayer of the Mass has never waned. Neither has the outward expression of the love between Marybeth and Emily waned; the way Marybeth puts her arm around Emily, and Emily leans into her mother’s shoulder—the back-and-forth of holding hands, rubbing backs, and touching heads—is a dance whose choreography hints of the divine.

Though I’ve seen this before, it always feels new, and so for the second time this month, the love between a parent and a special-needs child at Mass brought me to tears.

Afterwards, I was thinking about Marybeth and Emily; about the families I described in my previous article; about the other parents I know who have special-needs children; and about the grace that overflows in their presence. And I wondered—do these people know how much their witness means?

In case they don’t, I want to write this for them.

To the dear parents of special-needs children: We see you. (I am going to use the word “we,” because I know there are more people than just myself who feel the same way.)

We see the way you care for your child, the look of love in your tired eyes, and the gentle touch of your weary hand. We may not see you during the hours and hours you spend tending to your child’s needs in your home, when no one is watching. We don’t see you get up in the middle of the night, or do the same difficult things day after day after day. We can only imagine how much strength you need.

But we do see you when you bring your child out in public. Sometimes it is an enormous task for you to bring your sweet child somewhere, whether it’s because of how much effort it takes just to get from one place to another or because of how worried you are that your child will make noise in a quiet place. (We understand why it might make you self-conscious, but the noise your child makes doesn’t bother us a bit —in fact, to us, it sounds like heaven’s song.)

We see you, and we are so grateful. If you didn’t bring your child, we wouldn’t have the chance to witness your kind of love. A love that gives when more giving doesn’t seem possible. A love that emanates when your child smiles, talks, laughs, makes noise, and even when he gets upset, needy, and agitated. A love that reminds us that Christ loves us when we smile, talk, laugh, make too much noise, and even when we get upset, needy, and agitated.

If you didn’t bring your child out among us, we wouldn’t get to see this living picture of the love of God.

And yes, we know you aren’t perfect, and there are times when you don’t love perfectly. (We’re in the same boat.) That inspires us, too, because you keep going even when it’s hard, even when you don’t feel like you’re doing a good job, even when you don’t know if what you’re doing is really helping. Discouragement is part of love, too, when we’re human and want to love better and can’t seem to get it right no matter how hard we try. Don’t think for a minute that your feelings of failure from time to time make you less of a parent. They make you more of a parent. They prove how hard you’re trying to do a good job. If you weren’t trying, you wouldn’t feel like you’ve failed.

You’ve succeeded in what matters most: you have been faithful to the call to love and take care of your child, God’s child. And all of us who see that are blessed.

We also know that you’re not doing this for recognition, and that an onlooker’s expression of gratitude doesn’t hold a candle to the blessings you receive simply from being the parent of your extraordinary child. But everyone can use encouragement sometimes, and we want you to know that the work of your life does not go unnoticed.

May God grant you renewed strength as you drink from the stream of the Living Water. We also pray that, when you need help, you will feel comfortable enough to reach out to us, and that we will be able to support you as the Body of Christ.

Your child is beautiful; the way you care for your child is beautiful; and it is an honor and a privilege for us to bear witness to that love. In your example, the words of Jesus resound: “This is my commandment, that you love one another as I have loved you (John 15:12).”

Maura Roan McKeegan

By

Maura Roan McKeegan lives in Steubenville, Ohio, with her husband, Shaun, and their four children. She is the author of the children’s picture books Into the Sea, Out of the Tomb: Jonah and Jesus (Emmaus Road Publishing, 2016), and The End of the Fiery Sword: Adam & Eve and Jesus & Mary (Emmaus Road Publishing, 2014), which are the first two books in a series introducing children to biblical typology. Her articles have appeared in publications such as Catholic Digest, Crisis, Guideposts, Franciscan Way, Lay Witness, and My Daily Visitor.

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  • This is fantastic, and I can relate with my two girls who have special needs!

  • Mary Ann Paxton-Gambill

    Thank you for writing this. I write from the prespective of a mom to many adopted medically fragile children. It’s so good to hear from someone looking from the outside!
    http://www.catholic365.com/article/2645/why-i-am-not-thankful-because.html

  • Michael J. Lichens

    And they look adorable in every photo 🙂

  • Michael J. Lichens

    I join with the author to say that we appreciate all that you do. When I first came into the Church, I was put off by how different everyone was. I mean, children, folks with special needs (children and adults), homeless people, and the elderly praying along with the rich and suburbanite. I still have trouble processing it but I think God has really moved me to love everyone who has set next to me in the pew, and that includes many families of varying types. It wasn’t until I was in a place without the lil’ ones and parents doing their good work that I realized how much those whispers and sometimes not-whispers really matter and move so many hearts to a wonderful compassion. Please keep being an awesome Mass-going mom and be assured of my prayers!

  • Michael J. Lichens

    <>

    Okay, I need to start reading your stuff! Wow.

  • Mary Ann Paxton-Gambill

    Thank you! You reminded me that I need to update my profile. I’m now a mom to 12, 6 of whom are medically fragile :). Always busy we are!

  • Thank you for writing this. I have an 8 year old daughter on the Autism Spectrum. Its not easy attending Holy Mass, but we do anyway. I have found it VERY helpful to have her follow along in the missal because it keeps her mind busy and out of “trouble” from wandering and also helps her NOT to have a meltdown at Mass. We have not had many warm welcomes before we knew her situation. Its not easy but there is a reason our Lord blesses us with these beautiful minds & souls.

  • LeticiaVelasquez

    This made my day! I seem to see the disparaging looks more often than such praise and admiration when my daughter with Down syndrome and autism is out in public. Thank you from the bottom of my heart!

  • LeticiaVelasquez

    We all benefit from inclusion, the parents of the special needs, and those who think their typical children are perfect. God put all of us on earth to help each other get to heaven. I happen to think my daughter is an elevator to heaven!

  • Dessy12

    Thank you for such a beautiful tribute to parents of special needs children. Our grandson
    has Fragile X syndrome. It is difficult. However, he is the joy of our lifes !

  • Thank you for your beautiful letter. I wrote a response here: http://joyfulcatholicmom.blogspot.com/2015/10/dear-maura-i-am-the-parent-of-child-who.html

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