Not-So-Miraculous Monday: Feeling Overwhelmed?

The kids and I spent the day in our jammies … me never more than a couple of steps from the bathroom. Yes, that kind of day. Craig put off going to work until after lunch — but then it was just them and me and a snowy afternoon just yawning out ahead of us.

Since Chris wasn’t feeling much better than I was, he was happy to snuggle next to me and watch a movie. Sarah, however, was not a happy camper. Alternatel poking the dog and changing outfits and standing between Chris and the televison to get him to emit squeals not commonly heard in nature.

There are times, my friends, when you just hunker down and deal. And so, today I’m sharing this tidbit of wisdom that I encountered when I came up for air on Saturday afternoon. When motherhood gets to be a bit of a load, managing your own expectations can be 9/10s of the game.

Miracle Monday: “When Autism Speaks” with Ellen Bry

lostandfoundRecently CatholicMom.com ran an interview that I did with Ellen Bry, star of “Lost and Found Family.” Ellen is the mother of three grown children, including two sons with autism. I was delighted when Ellen took time to chat with me about what it’s like to raise — singlehandedly — two young men with special needs.

One of the greatest challenges of parenting the special-needs child is managing one’s own expectations. “There’s a kind of smugness among very bright, accomplished people, an engrained bias that being bright and accomplished is somehow being ‘better.’ When you have special-needs kids, you realize immediately that intelligence in merely another gift that you’re lucky enough to get – but not a God-given right. It’s surely as much of a fluke as being good-looking. A sharp intellect is a gift, nothing you deserve, just something you’re lucky to have. Other human qualities are more important – love, decency, compassion, goodness, and kindness. My two special-needs kids have those in abundance.” When parenting the special-needs child, love means learning to appreciate each child for who he is, rather than what he can or cannot do.

Want to read more? Just head over to CatholicMom.com and check it out. While you’re there, you might appreciate another CatholicMom.com post, “Prayer for Families Touched by Autism.”

Miracle Monday: “My Sister Alicia May” Reviewed by Leticia Velasquez

sisteralicia_largeMy 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!

Miracle Mondays: Guest Post by Catholic Matriarch

Today I’d like to direct you over to “Catholic Matriarch,” who recently posted this amazing story about a woman who chose to bring to term her child, who because of a rare genetic disorder survived only 10 minutes.

“I was so happy I did what I did,” little Angela’s mom says of her decision to bring her infant daughter to term. “You get to see your child’s birth and death all collapsed in one time frame. What most people want for their kids is for them to go to heaven. You get to complete that journey with them. As a parent, that is unbelievable. Life is about relationship to God. You know that when you literally pass them from your hands to His.”

Monday Miracles: RIP, Mean Mommy!

monster-momLast night my son didn’t want a book story. He wanted a “Mommy story.” It had been a rough day — lots of snarking about the unreasonable and arbitrary limitations mothers put on their poor, defenseless children. (I’m paraphrasing here.) Listening to him, I couldn’t help but wonder if I’m destined to join the ranks of adoptive parents who are (sometimes publicly) denounced for not living up to the “perfect parent” image. I hope not.

But just to be safe, I thought I’d put the whole “Mean Mommy” to rest by giving my wonderful son … another perspective.

Once upon a time, there was a MEAN, MEAN MOMMY!!!  (Uttered in best growly voice. Pause for giggles.)

This MEAN MOMMY had two beautiful children, Christopher and Sarah. (Maddy’s ears perk up at this.)

Every day MEAN MOMMY would make them do their homework, pick up their clothes, and tell them they couldn’t watch TV or play DS anytime they want. They even had to eat their VEGETABLES instead of PEEPS.  (“But I like vegetables,” Christopher observed.)

And every day poor, poor little Christopher and Sarah would have to go to bed WAAAAAAAAAAAY early so they would be fresh-faced for school the next day. While MEAN MOMMY sat in the living room, watching TV and eating all the Peeps! GRRRRRRR!

Poor Christopher would lay in bed at night, wishing very hard that MEAN MOMMY would go away, and he could have a better mommy. (Guilty looks.) One who would let him watch TV before homework, who didn’t make him read, and did all the work around the house all by herself. One who never yelled, or made him sit on the stairs, or made him walk the dog. (Christopher’s eyes brightened up at this. “YEAH!”)

But then one day . . . something sad happened. MEAN MOMMY fell down, and hurt her back. She was in the hospital for three days. (Christopher gets sober at this, remembering the time I was in the hospital.) And no one remembered the snack in the car. No one knew how to make bird-in-the-nest. No one knew how to fill his love banks the right way. No one remembered the Jell-O with oranges or strawberry syrup at the grocery store.

And when she finally came home, MEAN MOMMY seemed like the very best mommy in the whole world. She is definitely the happiest mommy in the whole world . . . because she has the very best kids. *MWAH!*

Miracle Monday: Ben’s Bells Project

ben_collage

Update: On April 15 I got a note from Ben’s mother, thanking me for the post … and letting me know that, two years after Ben’s death, they adopted two girls from Russia!

On March 29, 2002 — Good Friday seven years ago — three-year-old Ben Packard suddenly died of croup. His parents desperately wanted to find a way to bring some kind of healing out of their personal tragedy.

They created “Ben’s Bells” to recognize acts of kindness in their community — in their own words, “to inspire, educate, and motivate each other to realize the impact of intentional kindness and to empower individuals to act accordingly to that awareness, thereby changing our world.”

“Ben’s Bells,” grew to become a community effort that recognizes the power of kindness. In memory of little Ben, people in the Tucson, Arizona area gather to create these beautiful ceramic windchimes … and send them to selected recipients (it’s called “belling”), whose act of kindness has made a difference in the life of local residents. To date more than 11,000 sets of bells have been distributed.

One of the recent recipients of this award are foster parents Barbara and James Reyes, whose story was run in the Arizona Daily Star last February.

Ben’s mother Jeannette tells their story here.  The site offers instructions on how to start a chapter of the “Bells” in your own community as well!

Miracle Mondays: Tootsie Roll Trials

tootsie-rolls

This week the Knights of Columbus are doing their annual “Tootsie Roll Drive” to benefit local mental health support services, including the St. Louis Center and Special Olympics. We hand out Tootsie Rolls in exchange for small donations.

In one sense, we could have picked a better weekend. It was cold and blustery, spitting little raindrops intermittently against pavement and eyeglasses and turning our hands to red, chapped icesicles. On the other hand, the sight of us hunched against the cold seemed to make people dig more deeply as they tossed change into our buckets.

Not everyone, of course … Some averted their eyes as they dashed past. But most had a kindly expression as they handed over their dollars. One store owner even brought me a cup of tea and invited me to stand in the entranceway, out of the cold.

I was proud of Craig, who actually chased people with shopping carts to their cars for a contribution. He came back with a full can. I waved and held the door open for restaurant patrons that didn’t seem to see me standing there … and returned with the bottom of my bucket about an inch deep.

I couldn’t help but think about the young men and women served by the organizations we were collecting for. How often do they feel invisible, as though people are embarrassed at the sight of them? Do they ever feel like charity cases, rather than valuable human beings deserving a little support?

When was the last time I gave one of them a cup of tea … just because I was glad they were there?