Smiles from Strangers

It’s no secret that my great love for baby carriers leads my husband and I to use one nearly every time we are out of the house.  We even found a rockin’ spring green performance Ergo that fits my very tall husband much better than our old ones.

When we are at stores and at church, we often get questions ranging from the judgmental (“How can they breathe in that thing?” and “All I can see is mom’s back, I want to see, mommy!”) to the promo ones (“What brand is that? Do you love it?”) to the circus gawkers (smiling, waving at our little ones, pointing out the baby to their own children). I actually don’t mind any of them. In every case, we’re changing folks’ ideas of normal ways to transport your kids.

This Sunday, on our monthly pilgrimage to Sam’s Club after mass, we happened to stop for lunch before shopping. Hoss was sleeping in the car, so we transfered him to Andy’s back without waking him, and went to the cafe. Andy ordered and found a table while I took the older three on a potty run.

On the way to the bathrooms, we passed a man who had Down Syndrome. I smiled, because I thought it would be rude to go and pepper him with questions. I counted it as a little victory to see a person who might be like my child some day, out and doing normal things. By the time we returned from the potty (nice remodel on the family bathroom, by the way, Sam’s Club), we were walking right behind his family. I noticed his Hooter’s shirt, and inwardly cringed just a little. Not because a man with DS was wearing a Hooter’s shirt, but because a man was wearing a Hooter’s shirt. I mean, come on, world.

We sat down and got the kids started on pizza, when a woman came over to Andy to ask how the baby could breathe in the Ergo…but oddly, not in the judgmental way. It was the mom of the man with DS. A put-together, snappy dressing kind of woman. She said her daughter had just had a new baby and they wanted to get her something she could really use. While she and Andy talked, I couldn’t resist. I turned to the man, and said hello. I told his mom, who was apologizing for interrupting us, that I had wanted to interrupt them, earlier. I told her about our plans to adopt a baby with DS. She was like “that’s wonderful” or something, and got back to talking to Andy.

I was offered a large, warm handshake, direct eye contact, and a smile. “My name is Jon,” he said, with nearly perfect speech. I introduced him to our kids, and he turned to each one and said hello, in the slight baby voice/over enthusiasm most kids in their late teens use with little kids. He told us it was his birthday today. He was 32. A year older than me. His mom chimed in and let us know he was living on his own, and they were just going out to Hooter’s, his favorite restauraunt (she said with the motherly tolerance she was mustering on their dining locale). She was hurrying him along, and said with a smile “Yours might be just as social as ours is, and you’ll have to push him along everywhere, too.” Jon went over to say goodbye to my little boy, and give him a big high-5.

We wished him happy birthday, and as they were leaving, his mom told us both “It hasn’t been easy, but I don’t have a day of regret.”

As they were walking away, I told the kids that our new baby might grow up to be a little like Jon, because he had Down Syndrome, too. Cal asked, “Mom, will our baby be different?” I asked her, “Well, was Mr. Jon different?”

She thought, and JR answered, “No.” Cal agreed.

“No, I told them, then our baby won’t be different either.”
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God, I love the hints, but You’re being a little obvious.

Our peace is so complete, I put some in storage with the paper-towels and peanut butter.

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Porcupine

About a year ago, a good friend was struggling to understand her very strong-willed six year old. The more she talked, the more I realized, she was describing me as a child.

I was a smart kid. Like, giving me a standardized test was like asking Paula Deen to bring a few cookies to your bake sale. When I got angry, though, I would ramp up to a very agitated state and, no matter how much I wanted to, could not come down from the anger. I had no way to make things right, or “fix yourself up,” as we now call it in my house. My friend was at a total loss, wondering what she’d done wrong as concerned friends gently suggested therapy and others rudely suggested beating it out of her (not kidding).

Seeing her at her wits’ end, I sat down and wrote out all the things that I wish I could have said as “that kid” back then. The letter went on for four pages, and came back to the same idea, again, and again.  I lost it when I felt patronized and misunderstood, when I was forced to be wrong.  I was a very tough kid to be in charge of. Just ask the daycare worker who locked me alone in a dark room with a cot when I wouldn’t nap for the hundredth time. I was screaming “My mom said I don’t have to take a nap!” over and over.  No one listened.  I was afraid of the dark.  The walls were sound-proofed canvas that could be rearranged to make larger meeting spaces.  I was too afraid to look around.  I just stared at the sliver of light under the door.  I screamed myself to sleep.  I remember every minute of it. My mom dealt with the staff, but the fact remained. At the age of three, I could irritate an adult enough to make them treat me like a much older child. That “caregiver” was just proud she had found a way to get me to sleep.

So, I have an unusual compassion for kids like me who are begging to be heard, begging to have someone believe that they really don’t want to be this way.

And, I have two children who are just like me.

Last night, my very patient husband, Andy, was in a standoff with JR that would make lesser men weep. I watched JR ramp up to higher and higher levels of emotion and Andy warn, and get stricter and stricter, reasonably increasing consequences with every passing minute. And then, the worst of the worst: physically dragging the child to timeout. Some would have argued we should have spanked him at the first sign of insolence, but that just would have gotten him to the heightened rage faster, with less opportunity to repair it.

Now don’t get me wrong, this is not a democracy, and we aren’t worried that we are crushing fragile egos by enforcing a bedtime. But, what we do need to worry about crushing is his God-given spirit. When these explosions occur, there is something chemically firing in his brain, forcing him to stand his ground, not back down for anything, and never apologize. He is not capable of making that cascade stop, even when he wants to.

I know, because I can feel it, too.

This fight-to-the death feeling cannot be dispersed by punishment or discipline, but can only be diffused from within. That’s a tall order for a five-year-old boy. For a three-year-old girl. Even 28 years later.

So, how can I take what I’ve learned in a lifetime to make overcoming the control of this chemical anger, as I call it, possible? Can a five-year-old learn to channel his rage into something that won’t make life so punitive for him? Can his three-year-old sister?

We have taken the first steps already.

The first thing was to let the kid know that they are safe.  As a parent, I can be that.  “Safe” means I am capable of not making him pay for my frustration or anger over his offenses.  Safe is a person who doesn’t need anything from the child–because he has nothing to give.  JR now knows that when he gets in this rage, I will not continue to meet his challenges, and I will not escalate the situation.

Andy has never felt this way (he quickly learned to duck under the radar under punitive discipline), and can’t get over his incredulous “You have no idea what would have happened to me if I pulled that as a kid…” And not in the “I wish I could do that to him,” way, but in the “I am killing myself to be such a thoughtful and deliberate parent—for what?!” way. As a result, many of the escalations happen under his watch because he doesn’t feel the warning signs like I do. But, he’s an amazing father, and is fighting to see.

So, to give my friend’s daughter and our son (both sharp little tacks) a chance, I invented a term. At any time when he feels himself about to explode, JR can say “Porcupine!” What it means is “I don’t know how to stop being angry and I feel myself going off the deep end and I don’t know how to stop!” Porcupine means he does not admit he’s wrong. It means he gets some space. We don’t hound him. We don’t demand resolution. We soften our hearts when he can’t.

Also, we don’t get to say porcupine.  It is a precious tool only the child can use.  We can stick a kid in time out in his room, but only he can say that he can’t handle what’s happening.  This power gives him a tool of self-awareness, too.  When he calls “porcupine,” he is my kid who can’t handle what is happening, and needs me to just be his mom, and not his teacher.

Gentle discipline advocates say kids parented appropriately never get to this stage. I say go jump off a bridge.

Why is rage in a small child a sign of a bad kid? Bad parents? When JR calls down he’s ready, I throw a strip of pH paper in by asking him “Is your heart soft enough to learn the lesson yet?” Nothing ticks off a raging child like pansy talk about soft hearts. If he says “no,” he takes more time. If he won’t stay on his own, he’s ready to fight, and didn’t really mean his “Porcupine.”  That has never happened yet.

But, I just won’t destroy a little boy who, in a rage, can punch his grandmother in the stomach, destroy his sister’s favorite book, and tell the baby he hates him. Because when he’s himself, he calls me over to whisper “You’re the best mom in the whole world,” tells his little sister she’s adorable, and paints pictures for his Amma, “So she won’t forget me.” And don’t go thinking about master manipulator capablities. I’m here. I know genuine.

What’s not genuine is a little boy who, when he gets scared and can’t find his way out of the darkened room of the emotions running through his mind, fights to the death.  He screams himself exhausted in the frightening world of these intense, genetically given, chemical surges. Maybe you would medicate him out of these extremes that happen maybe once a week. I wouldn’t blame you. But, you’d be wrong to do that to my boy.

I know, because he’s me. And I wish I had a porcupine to defend myself back then, too.

Why Now?

One of the biggest concerns my family had when we told them we were adopting a child with Down Syndrome was “why now?”.  Wouldn’t it be more prudent, fairer to the other children, if we waited until baby Hoss was five or six?  This baby might need a lot of our time and energy, and right now our time and energy is the kids’ time and energy.

The biggest reason we are ready now is because I am still nursing Hoss, who turned one last week.  Actually, we first called an adoption agency last year, when Hoss was just a few weeks old, knowing the adoption process might take two years.  I have always had it in my heart to seamlessly bring an adoptive child into our family, bonded, completely one of us, and without barriers.  Nursing is in line with this dream.

But, last year, we were told that a mother with a healthy baby (of any color) always asks for the same thing: a couple who couldn’t have children biologically.  It would be unethical to take our money and start a homestudy.

That’s when a friend gave us the link to Reece’s Rainbow.  Our hearts were moved by these children halfway around the world, desperately in need of a family to call their own.  A friend of a friend, Heidi, is actually raising money now to bring her own little boy home through this incredible organization.  We looked, but knew that these children were going to be closer to a year old by the time we brought them home.

Was there a child who might need a family from birth?

When Heidi’s blog went active in March to drum up support and finances for her Peter, Reece’s Rainbow appeared on my Facebook screen again.  Could we be the parents to one of the incredible children?  How could we ever choose?  They would certainly be too old to nurse, but what’s nursing matter when they have no future there? [UPDATE: I WAS SO WRONG ABOUT THIS! Read Jenny’s story.]

And just a few days later, we stumbled across the National Down Syndrome Adoption Network.  Obviously not a web-saavy organization, they spend their time on the phones, counseling prospective birth families and helping them decide if an adoption plan (what used to be called “giving a child up for adoption”) is right for them.  They also keep a database of families, like mine, who would love to provide a home to one of these children.  The woman laughed when I told her, apologetically, that we have quite a large family, with 4 kids, ages 6 and under.  “That’s not a large family around here!”  she said.  (Oh, God–what a healing ointment in those words!)

And so, we have requested to be considered as an adoptive family to a newborn who might need mom’s milk (DS kiddos often have correctable digestive problems at birth, but struggle with formula), but mostly, who might need a family like ours.

We want to be the parents to a child who will be the next child in birth-order, who will be in the same generation–and not separate from–his or her brothers and sisters.

Also, close friends know that we have some unique emotional and physical concerns about having more children.  But, in our marriage vows, we committed to being open to life.  We have kept every single one of our vows, and it has made us exceedingly happy.  How could this one be wrong, too?  We are remaining open to life.

We know our friends and family may have to fill in the gaps for childcare with the special needs that may take precedence over our lives for a while.  Homeschooling will also help facilitate the adoption, as our schedules will be much more flexible than traditionally schooling families (counting down the weeks until the end of preschool, or as I call it, the 12:20/2:50 time bomb).  I also bought a new pump on Monday and a boat-load of “in the trenches” books from Amazon.  We have a small network of five families in our town with young children who have DS.

We are actively preparing the best way we can.

So, to sum it up:

  • We’re hoping to adopt a newborn domestically child from Eastern Europe.
  • We’re picking the time to be now so that baby can nurse, just like he or she was designed to do.
  • We want our children to see their new brother or sister as one of them because of his or her close age.
  • We would be getting ready for a new baby in the next year, anyway.  There is no peace in being pregnant or childbirth for us anymore.

And lastly, my dream for the world is that there is such a line of people waiting to bring home every child that can’t be parented by his or her biological parents, that no one waits for more than a few hours, while we grown-ups scramble to seamlessly bring each child home.  If our family can help make that dream a reality for one child, we must.

Now is the time.

The 10%

When 9 out of 10 dentists agree on a toothpaste, we buy it.

When a funky new chair goes on 90% off, we find a spot for it.

When our gas tank is down to 9/10ths of a tank, we fill up.

Let’s face it, Target has been trying to pawn off 30% as clearance for years now, and I have stopped even browsing those racks.  But 90%?  90% gets us to move.  We act quickly to snatch up the item valued for ten times what we could now purchase it for, we know that 9/10ths gone is a tank in need of refueling, and 9 out of 10 experts is as close to a consensus that we are going to come to in most of our lives.

But this particular 90% is a statistic that has changed my life.  Our lives.  Forever.  For better.  For best.

This 90% has rocked Andy and me to the fundamentals of our faith, our family, and our sacred honor.  This 9 out of 10 has pursued me in my internet searches, and consumed my thoughts in the infrequent quiet of our long car rides, in the every day conversations with our cashier, with the moms at the preschool pick-up line.

I don’t want to break your heart, but I will, if it gets you to move.  Because it has broken me.  Us.

An estimated 90% of all children diagnosed prenatally with Down Syndrome are aborted.

Never given a chance at life.

Never given a chance at all.

When 90% of a tree frog population is killed off, fundraisers happen, environmentalists go wild, and patient local capitalists protect them through ecotourism.

When 90% of a group of people are killed for their genetic makeup, however, it is genocide.  Many people consider the only “cure” for Trisomy 21 is detecting it early enough to terminate a viable life.  It also terminates a complex, challenging, and rewarding new family.

But, the darkness of these statistics isn’t what makes us act.  It’s what breaks us.  Our faith makes us move.

So, last month, it was time we faced two choices.  We could accept how beautifully our family works as is, four healthy kids, a great home we’re affording, giving generously, sponsoring impoverished children.  We could live happily in this life as a given, living in the gift.  Or we could rock the boat and trust that the One who made all this possible can give us enough to love one more.

One of the 10%.

One of the children whose mother saw something, somewhere that made her say “not me, but someone.”

We want to be the someone.

We are opening our homes and our finances up to be considered by just such a remarkable woman.  For one such remarkable child.  For one such stubborn child.  For one such loving child who may hold the potential to see the world through God’s eyes.  For one child who might introduce us to the NICU, who might require surgery, who might need physical therapy, but who will, obviously, have the benefit of his mother’s breastmilk.

We are laying the groundwork (ok, paperwork) to become the parents of five children, one of whom will not start life from our DNA or grow in my body.  One who will start life in our hearts.

One who will rock an extra chromosome.

One who may not even be born yet.

One who will knock us into the deep end.

It’s ok, we’re strong swimmers.

And without us, without families waiting in line for these children, the next one just might go into the deep end alone.

Wouldn’t you go after him, too?

A year ago, there were three things I thought were for someone more inspired, less mediocre, more brilliant, far stronger than me to aspire to.  And today, I am not sure how I could have been so wrong, because today, that person is me.

I am homeschooling.

I am running my first half-marathon on Saturday.

We are adopting a baby who has the potential to change everything.  For the best.

Hmm, that last one makes the others sound so lame.