Today I stumbled on this story from columnist Joe Orso (LaCrosse Tribune), who talks about a teacher who finds a naked kindergarten child with Down Syndrome in a school bathroom . . . and who still remembers the inspiring encounter years later. I thought I’d pass along the joy! Click here: share
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My Sister Alicia May
Written by Nancy Tupper Ling
Illustrated by Shennen Bersani
Pleasant St. Press 2009
My friend Leticia sent me this review, which was published on “Catholic Media Review.” This children’s book is about the big sister of a Down syndrome child, Alicia May. It reads in part:
Sister relationships are complex and beautiful things. When one of the sisters has special needs, the relationship may seem one sided; often the focus is on the special sister, and this is a mixed blessing. The typical sister learns to give more of herself and put up with more than most sisters do, growing emotionally beyond her peers, yet there are days when she runs short of patience for her demanding sister. “My Sister Alicia May” describes this unique relationship with a unique blend of candor and tenderness.
Siblings of children with special needs so often have to cope with “big feelings” — and overwhelmed parents, intent on tending to the needs of their “special blessing,” don’t always think about how to address these feelings. This book is a good start to starting that dialogue!
Today at Mommy Monsters, I write about a “teachable moment” with my daughter, in which we encounter a special needs child at McDonalds.
My sister lost her leg when she was ten due to complications from cancer — I was twelve. Sometimes people could be downright rude, pointing and staring as though she were deaf and blind rather than simply legless. Chris always much preferred the guileless questions of children, even when those questions made the parents squirm. So now when my kids ask Chris if her leg has grown back yet, she just laughs and says, “No yet!” And I remind them that Aunt Chris’ leg is waiting for her in heaven.
When they comment (always loudly and in earshot) about a young woman at church who has Down syndrome, I try to take my cue from Chris and simply answer the question. “Yes, she has special challenges — she doesn’t talk or act quite the same way you do. But she has special gifts, too. See how she’s always helping in the nursery? See how she always seems happy to be here, instead of grumpy? How she’s kind to everyone? I think she would be a great friend, don’t you? One way you can be her friend is by not saying things to her or about her that might hurt her feelings.”
Today at “International Mom” Julie also has a discussion about how to talk to kids about treating people who are physically or mentally challenged. Go take a look!
“Mighty Mom” Sarah is taking a break … and so, I’ve decided to use this space to tell you about some other Extraordinary Moms! “Mighty Mom Monday” is now “Amazing Mom Monday.”
“Atlanta mother Andrea Roberts has helped arrange more than 100 international adoptions in two years. Her Web site, http://reecesrainbow.com, focuses on children with Down syndrome, listing page after page of toddlers from Serbia, Ukraine and other countries where children with mental disabilities are often put in orphanages or mental hospitals. ”
Thanks to Barb Curtis, who sent me a link to this story in “The Washington Post” about Andrea and other women who are working to make a difference in the lives of Down syndrome children.
My friend Suzanne sent me this article about the VP-nominee’s infant son, from Michael Gerson of the Washington Post. It is a powerful reminder of how far these extraordinary kids have come, as a group, in the last 100 years … and how far they still have to go.
I ran into Suzanne at Curves the other day, and she told me that her daughter Anna (who has other, non-chromosomal challenges), who attends a regular high school, has been the basketball manager for the school team. “It’s been amazing to see how well the other girls interact with Anna,” Suzanne said to me. “The funny thing was, when I mentioned how well a particular girl got along with my daughter to other moms, their response was often something along the lines of, ‘Oh, you gotta watch that one. She’s pretty wild.’ Time after time after time.
“But they were great with Anna. I guess these girls related to her in some way — maybe it was because they sometimes felt like outsiders, too.”
I’d like to introduce to you the newest of our Extraordinary Moms, Leticia Velasquez. A gifted journalist and mother of three, Leticia is a strong advocate for families with children that have Down Syndrome. If you or someone you love is struggling with a prenatal diagnosis of DS, feel free to get in touch with Leticia at “Cause of Our Joy.”
“God would never send us a special child,” I mused, caressing my pregnant belly, “our marriage isn’t strong enough.” I was deliriously happy to be pregnant at 39, for three of my five pregnancies had ended in miscarriage, and my younger daughter, Isabella, was an independent four year old. Last summer, I had returned from a homeschool conference with an aching heart, longing for a translucent-skinned newborn nuzzling my neck.
When my pregnancy lasted past my danger zone, I was ecstatic, and refused the triple screen blood test. “There’s nothing you can tell me that will make me end my baby’s life,” I told my doctor, putting the subject of prenatal diagnosis to rest. Or so I thought.
Five months along, I was attending Sunday Mass, absent-mindedly watching the parishioners with Down Syndrome from a local group home when, from out of the blue, I heard an internal voice. “You’re going to have a child with Down Syndrome,” the voice said.
Astounded, I tried to dismiss it as a hormonal fixation, until, in line for Communion, the voice spoke again. “I want you to accept this child as a gift from My Hand, when you receive Me.”
Now I knew there was no escape. Jesus had a call for my life. How would I respond? I choked, “Yes, Lord, as long as you bring my husband along for the ride.” I received His Body in tears.
My husband, Francisco, was floored, thinking that I had finally gone over the edge. I also began to doubt the message, since there had been so many normal sonograms. “And besides, Lord, I’ve seen these mothers of special children. They’re saints. You could NEVER compare my impetuous personality with theirs.” That, I decided, was the clincher. God gave special children to saintly women. I was safe.
Never tell God what He is capable of doing. During the remaining months, I struggled with self-pity, and even, for one instant, regretted my pregnancy. All the while, unknown to me, His grace was molding my heart.
The time came for little Christina Maria’s arrival. At her birth, the delivery room fell deathly silent. Alarmed, I glanced over at the pink, wriggling baby in the isolette, and asked “What’s the problem?” The doctor didn’t respond. Francisco tried to tell me in Spanish that Christina was a “mongolita” (Spanish for Mongoloid), but I didn’t understand. So, on the way to my room, the nurses circled my gurney and said, “We regret to tell you that this child has symptoms consistent with Down Syndrome.”
I was ready with my response. “This child will never take drugs, go Goth, or shoot up a schoolroom. She’ll learn the Faith and keep it her whole life. She’s my best chance at getting a daughter to Heaven, and I consider her a special blessing from God.” My answer came from a book, Pregnancy Diary, by Mary Arnold, which I had read regularly for inspiration.
But words are cheap. What cost me dearly was watching the other newborns in the nursery and comparing Christina’s weakness to their vitality. I resented the happy chatter of the other Moms in the ward. I was haunted by dark thoughts, and self-pity took hold of me.
Just then, the phone calls began. My mother and homeschooling friends had summoned support from around the country, and I was encircled in love. I spoke with a mother from my parish who told me what it was like to raise her youngest daughter with Down Syndrome, and answered many of my anxious questions.
Another friend, the mother of 11, sent an Elizabeth Ministry package for special babies, with a CD and book set entitled, Sometimes Miracles Hide, Stirring Letters from Those Who Discovered God’s Blessings in a Special Child,by Bruce Carroll. That package was a constant companion, reminding me that regardless of how inadequate I felt, God had, indeed, chosen me to mother Christina, and that she would be my means of attaining holiness down the road. God’s favorite road, the Via Dolorosa.
On Mother’s Day, the day of Christina’s Baptism, we shared that song with the over 100 guests who crowded the church. My heart swelled with gratitude to God for choosing my family to raise Christina. And when her godmother asked what she should pray for, I didn’t ask for a cure from Down Syndrome. I was beginning to understand that her “condition” was a blessing, not a curse. Perhaps, as Fr. McCartney had said, Christina pities us for not having the purity of heart to see what she sees.
After six years of specialists, therapists, and conferences, our family has grown in acceptance of her halting development, yet often, we are awed by Christina’s perception of that which escapes us. One day, I brought her with me to Eucharistic Adoration. Entering the chapel, she waved enthusiastically to the Monstrance and called, “Hi, Jesus!” I was congratulating myself for having communicated that Jesus was present, although unseen. She promptly put me in my place, for, as we were leaving, she waved again, saying, “Bye Jesus!” as if He was as visible as Grandpa standing in front of her!
You know, I believe she did see Jesus. And what’s more, they already have a friendship.
This article was published as a sidebar to an article in “Faith and Family” in May/June 2007.
Extraordinary Moms Network 