Pity

She spotted Joel and me leaving Starbucks one morning last summer and smiled. But the smile didn’t quite reach her eyes, and it lingered a bit longer than your regular stranger greeting in my town. Then she approached (startled) me while I was strapping him back into our van. I can’t even remember how she opened the conversation, but she was smiling and obviously felt “called” to say what she was saying about “praying for us” and asking our names. (Why can’t I come up with  good aliases on the fly? I never was very  good at improv…) Although Joel enjoys meeting new people, he was visibly confused by this convo too. I’m pretty sure my mouth was still hanging open by the time I got home.

At first I felt guilty: “Ugh, I let my beatific-special-needs-mom smile slip for a moment and just looked regular-mom-exhausted.”

Then annoyed: “WTH, she doesn’t know anything about our life.”

Then amused: “Hahaha…she didn’t know this was a GREAT day. We got Luke to nature camp on time, our move is almost complete, no one is screaming/crying/bleeding. Ha!”

Then pity. The same I guess she felt for us. Because how is it that the people who must mention that they’re praying for you don’t seem to understand that our lives are fleeting? Also, who knows what’s going on inside anyone else at any given moment? What we see is only temporary, ephemeral. I don’t exactly know what happens after we die, but I believe we leave these imperfect bodies behind. My friend calls these strangers the “well-meaning idiots” and we can usually spot them coming. I often try to cut them off with humor or, depending on the day, I’m extremely curt. On exhausting days, the “I don’t know how you do it” peeps get a “Badly, actually!” and the “What’s wrong with him?” bunch sometimes get a flat “Nothing” in reply. (Again, I was never good at improv…I need to rehearse a great blanket response.)

I’m probably most irritated by this interaction (nearly a year later) because it nearly blocked out a lovely little memory inside Starbucks that morning. A sweet toddler boy being awestruck by Joel’s bright red chair and light up wheels with a mom who did such a beautiful job of saying something like “what a cool way to get around!” Those are the moments I want to remember.

Pity of the disabled is insidious in our society. “Inspiration porn” stories frequently pop up this time of year of an athletic, kind-hearted kid asking a peer with a disability (usually intellectual) to prom. Is that cool? Sure. I just wish it wasn’t news. Has the teen with Ds/CP/etc. ever said “Thanks, but no thanks”? That’s an interview I’d like to see.

And it takes place in our churches, too. We’ve been very lucky/blessed by a supportive church community with leadership that works to include Joel and other kids with disabilities. But we have friends who have left churches and cut ties based on the overwhelming amount of “pity prayers” or utter lack of effort to include their disabled child. In my Bible, “Jesus said, ‘Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these'” (Matthew 19:14, NIV). He didn’t say only the developmentally-typical or only those with an IQ of 130 or above. He said children. And don’t get in their way.

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Joel at our church’s VBS with one of our faves.

Staying out of Joel’s way, and trying to stay two steps ahead to remove/rearrange barriers (both actual and logistical) is what our family team is all about.

Did I say I would pray for our parking-lot pitier? I hope so. But it doesn’t matter.

I pray for people without telling them all the time.

 

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Launch

This morning:

I watched the bright yellow bus drive away with my miracle boy inside. (And sure, I think both of my boys are miracles…but it’s our second’s, my baby’s, first day of Kindergarten.) And wow. Of course I’m surprised to find myself here. Not the drinking coffee in pristine silence moments, but the two-boys-in-elementary phase. And I have all the feelings.

Hello, all the nostalgic/whoa-life-moves-fast/what? feelings everyone has at this point. Probably magnified by my turning 40 this week. But there’s more…

When they call you and tell you your child’s brain, the actual structure, of it is very different than most everyone else’s, you basically freak out and have to grieve and let go of who you thought your kid was going to be. And it’s hard. If you’re me (a recovering perfectionist), you’ll research and be even more worried that there’s just not much to go on. You’ll read that his rare combo of rare “disorders” puts him in a one in 100,000 club. It’s lonely.

But eventually you find your tribe. Some you already had who stick with you and make your crazy journey their crazy journey. Friends from college who face other big diagnoses. Family who wear their wheelchair heart shirts with pride. The Perlman families who become your family. A Facebook group that becomes a lifeline. The preschool mamas and kiddos who invite your “different” into their lives and celebrate it.

Then whoosh…you’ll look at your 5 1/2 year old and be amazed at how far he’s come thanks to your tribe and his village of teachers/therapists/doctors/aides. He walks and stands (in spurts) with minimal to medium assistance. He grows in independence daily while babbling and talking when you least expect it. His maneuverability on wheels (the chair that was a leap of faith considering he didn’t self propel when we ordered) is outta sight considering his visual processing delays. And you’re surprised at how vivacious, curious, loving, empathetic, smart, hilarious, and handsome he is–traits so inherently Joel that even a funky brain couldn’t stop them from developing.

So I’ll wear my shades to hide my puffy, misty eyes today. And also because the future is so bright. Yellow. School bus yellow to be exact.

Preschool

I panicked. Absolutely sick-with-worry panicked.

Before we had kids, nine years ago now, we purchased a home in an excellent suburban school district. We often refer to it as Mayberry, and its small-town-next-door-to-a-fantastic-city feel is ideal for our family. We can easily walk to shops and festivals in our quaint little town then arrive in downtown Cincy in 20 minutes or less. We love it.

After our world was rocked by Joel’s rare diagnosis, I worried we needed to move. There are plenty of districts that score fabulously where “typical”/”advanced” students are concerned and fail miserably at serving those whose needs are different than most. I began to research school districts’ state report cards and seek out families all over the city receiving multiple interventions for their children.

My neighbor told me we’d be fine. My friend with an older child assured me there was a place for Joel at our neighborhood school. I still doubted. I found myself chatting at our park with another mom, who asked me more about Joel than acquaintances usually do. It turned out she has a sister with Down syndrome. It also turns out that her mom is our preschool director and intervention specialist, Miss Mary Ann. What are the chances? Pretty good in our small town I suppose, but I began to think we might just be precisely where we are supposed to be.

Nearly nine months before Joel would turn three (the magical age when the county turns the bulk of DD services over to the school district, at least in Ohio), I contacted Mary Ann, introduced myself and Joel, and explained that I was desperate to know if our local preschool would work for him. She invited me to come in and visit that spring. After that visit I never doubted again.

For that day I witnessed the physical therapist, Miss Melissa, work/play outside with the entire class, adapting requests as necessary for developmentally delayed and medically fragile children. It was beautiful. And pretty much every day of the 2 1/2 school years that Joel attended preschool there were just that beautiful.

We started with two mornings a week because he was already enrolled in intensive integrated therapy at Children’s twice a week. The next fall we moved to three mornings a week and quickly added a fourth day to ensure enough time for therapy. In addition to the classroom teacher, intervention specialist, and two assistants/aides, he sees the school’s physical therapist and her assistant, the occupational therapist, a speech language pathologist, and a vision teacher who visits from the county. If you add those to all the specialists and therapists that work with Joel at Children’s, it comes close to two dozen professionals following Joel at any given time. It’s a truly spectacular village.

But there is so much more to our school than a phenomenal staff. I didn’t expect to fall so head-over-heels in love with the other families and kiddos in Joel’s class. Some of our friends see most of the same therapists Joel does, some see one or two, some require that little “extra” help, and some are typical learners.The multi-age classroom means that Joel even started out with a few kids in Luke’s grade and the next. We are lucky enough to take some of our precious friends with us to Kindergarten, and we will leave some to finish up another year or two of preschool. Even the kids from the other preschool classes greet Joel when we’re out and about. He also enjoys visiting (read: escaping to) various classrooms and the office, so most of the elementary staff and students know him. Luke often says, “Joel’s famous!”

What I cannot quite describe is how much Joel adores his classmates and how much they love him. For many years, he was the tag-along little brother of Luke, and now he has his own posse. He simply belongs. Isn’t that what we all want?

We will forever be grateful for Joel’s preschool experience and to Miss Mary Ann, Miss Jackie, Miss Bridget, Miss Lisa, and Miss Barb (and the rest of the village Joel will continue to work with) for making it so special!

Let It Be

“And when the night is cloudy, There is still a light that shines on me,
Shine on until tomorrow, let it be.” -McCartney

John and I watched Across the Universe the night before my mother died six years ago. I remember very few details because I was so worried about her. I knew she was having a hard time with her recent round of chemo, but I had no idea her body was shutting itself down after battling colon cancer more than five years. I remember the movie was visually stunning and the Beatles’ music artfully arranged, but I can really only recall sobbing during a funeral scene set to a gospel version of “Let It Be”. I think of her every time I’ve heard it since. I read recently that Paul McCartney wrote it about his departed mother, but I feel like I somehow already felt that.

At Mothers Day (well really every day) I think of her and John’s mom Mary Lou and wish they could be here to get to know our boys. I like to think of them watching over us and laughing so hard they cry at our kiddos’ antics, especially the ones that remind them of the wringer we put them through. Luke usually prefers to play inside with his Lego collection whenever there’s free time, and we sometimes must coerce/coax him into getting fresh air. “Let’s go outside. It’s a beautiful day!” we say, “Legos can wait.” But not when there are important creations to be built and epic adventures to enact. John often shakes his head and mutters, “this is how she felt”. Not surprisingly, the verse, “When I find myself in times of trouble,  Mother Mary comes to me, Speaking words of wisdom, let it be” reminds me of Grandmother Mary Lou.

So I’m choosing to be proud of the behaviors that certainly cause our mothers fits of giggles. Some of Joel’s most maddening actions are those I wondered if he’d ever accomplish, and I can’t believe how proud I am to admit he pushes my buttons and wears me out mentally more than physically these days. He is smart. So much smarter than most people realize, smarter than I remember sometimes. A black belt in parental manipulation, he cries the instant John tries to sit down in church and whines through transitions at school most often only if I’m present. He quite literally crawls under my feet at home, banging on the bathroom door and pulling open drawers and pots off shelves in the kitchen and play kitchen. He pulls magnets off the fridge and tosses them over his shoulder, and

he laughs when he’s caught diving for Cheerios under the dining room radiator. And he knows when to wrap his arms around your neck and nuzzle into your shoulder so that you will always forgive him and always be ridiculously proud of his antics. Which is so deliciously typical. Who knew the highs could be so high?

“Joy does not simply happen to us. We have to choose joy and keep choosing it every day.” -Nouwen

Let it be.

Community

“I get by with a little help from my friends.”  -Lennon/McCartney

A few weeks ago Joel and I met a new pediatrician, and I was super nervous about it. The practice we visit has been great, but explaining Joel to someone who may or may not have looked closely at his chart is exhausting. And I felt horrible that it was a well check visit 8 months overdue. (I am my own worst critic…calling myself all of the names banned at our house: “Stupid! Why can’t you be more organized???”) Also, I only had this appointment because we were too late for a known doctor the previous week…so I was sure this new pediatrician visit would be awful. (Have I mentioned I’m a human roller coaster?)

But it wasn’t awful at all. First, the nice nurse didn’t ask any of the developmental questions that usually make me want to throw up. Then the doctor walked in and her face lit up when she saw Joel. And my little barometer of goodness in people Joel-man reached to embrace her automatically! We talked about his handsomeness, fabulous hair, and cute glasses. Then she asked about his school schedule, therapist village, and casually mentioned that her child attends the same intensive therapy program as Joel. That, in fact, she relocated her family so they could live near our children’s hospital. And then it was like we were old friends, exchanging tips and stories. When I said, “I don’t know how I messed up and missed his 4 year checkup.” She said, “Pfft! I know how you did! How many other specialists has he seen in that time?” I lost count thinking of all the appointments we’ve gone to since January…

Then she asked me what my secret is, how do I do it all? All the things associated with parenting both a “typical” and “special” child. My first response in my head was, “Oh so haphazardly! I mess up and there are not-so-great days where everything just seems hard. Just like everybody else. Plus, I’m kind of a slob.” The words that bubbled out of my mouth instead were, “We have really great friends.” And we do.

We live in a community where little preschoolers I don’t even know greet us at the soccer field and say, “Hi Joel! Watch this!” and tumble over each other just to make him giggle. If your kid’s picture is in the paper section for subscribers only and you want extra copies, three will be on your porch by the end of the day. Meals are delivered for new babies, surgeries, and bereavement. (We’ve had some from each category, of course.) Church friends even delivered meals to Children’s when Luke was inpatient post-op. Those may have been the most delicious foods I’ve ever tasted. At our homecoming parade, at least half a dozen older elementary/middle school football players stopped by to hand Joel candy directly instead of tossing it at the ground where he can’t reach. We watch each other’s children when one has an appointment or work. We just do life together.

I love that I frequently have multiple-aisle, intermittent conversation with other moms while at Kroger/Target. I love that Luke and I joined a playgroup when he was 9 months old and that those other kiddos and mamas are like family now. And I love that we have friends who stick around for the hard stuff, who know that grief sometimes calls for a giant box of wine, chocolate, coffee, and more of my favorite things. And our friends who have volunteered large chunks of their precious weekend time building a ramp for our house will always be saints, IMO. (Stay tuned….ramp completion sooooo close! John is a rock star, FYI.)

I grew up in a small town where families have known each other for decades, heck centuries really. My parents knew the family tree of nearly everyone in my class. Although we don’t go back *quite* so far with our current village, Cincinnati sometimes seems like one big town really. And our corner is pretty fabulous. Oh it’s not perfect. We have our characters, just like the Gilmore’s Stars Hollow. (I’m late to the GG party, and some might say I’m currently obsessed.) But it’s home.

As Joel and I rolled into his preschool classroom this morning, three children shouted, “JOEL!!!” Two ran over to us, and one hugged me while the other hugged him. I suddenly realized Joel is Norm, and his Cheers is preschool. So of course I started singing “Where everybody knows your name, and they’re always glad you came.” Luckily a teaching assistant joined in. Have I mentioned we love our school?

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Thanks for joining us on this journey, friends!

jessaP.S. – The newest life that we cannot stop gushing over belongs to my sweet great niece Jessa. She was born just a few days before my mom’s 79th birthday, and we are so in love with her already. My niece Nicki and her husband Tom are the proud parents, and my sister and BIL are simply over the moon about becoming grandparents. Life is good.

Moments

“Sometimes you will never know the value of a moment until it becomes a memory.”  -Dr. Suess

It’s funny how memory works…the pieces you recall when thinking of a person or time in your life. I can’t pull up much of my parents on the big days (graduations, my wedding, etc.) other than huge smiles. I remember shopping in Kmart before my mom’s first big surgery fifteen years ago, laughing ridiculously together over cheesy nightgowns. Or sitting in her enormous brown Grand Marquis in our driveway on a beautiful summer evening, sipping milkshakes, and talking about nothing/everything because it was too nice to go inside just yet. Whatever we were discussing seemed too important. I remember her reading to me as a child, switching around words in my Sesame Street book to see if I was paying attention. And in my head she is always sewing, working on some project or another. Usually for someone else, of course.

I remember my dad driving me to high school and wanting to learn French, asking how you’d say everything we saw. For years he’d say “It was a gris matin (gray morning) today”. And he loved “Laissez les bon temps rouler!” Which of course he learned from a movie. He played a continuous game of “What movie is this from?” You never knew when he’d spout a line and expect a quick answer. He loved music too, and the soundtrack of any given movie was usually part of its review. “I liked it all right,” he’d say, “but I really like the music in the bar room/action montage/whatever scene.” He’d rewind/skip back over and over again just to listen to the best music in a movie. He loved the Blues and got a kick out of John making CDs of newer artists for him to listen to while driving back and forth to the restaurant.

John’s maternal grandfather passed recently at age 89, leaving behind a legacy that includes a close-knit clan of some of my favorite people. John is the oldest of 31 grandchildren on his mother’s side, and the great-grands still ensure plenty of merriment when they get together. Friends often comment thatDSC_0345 my husband is such a great sport, happily entertaining groups of kids at gatherings, camp, the pool, etc. But I know he can’t help himself just like his Grandpa Murphy couldn’t back in the day. Kids are fun, and playing keeps you young. Even as Grandpa aged he kept a close sparkling eye on the children, always holding the little ones looking for a snuggle.

A few weeks ago I was driving the boys home from the pool in the evening. It’s a ten minute scenic drive through a wooded area, and the sun was casting long, slanted golden streaks through the trees. “Hey Jude” began streaming on the radio, and I glanced back to realize Luke was reading to Joel. Sure, he’d been reading, often out loud. But not to brother without prompting. It was so beautiful I wanted to stop time and listen to Click Clack Moo on repeat for all of eternity. And I thought, “Please let me remember this moment. Please let them remember it too.” Instead of the times we’re all frustrated with each other in the daily tasks of growing and living.

I don’t want to miss these moments that remind me we’re doing something right. That there are so many good nuggets in days that sometimes seem long:

Foldingphoto 2 a flat sheet on a lazy summer morning can turn into a game of parachute hide-n-seek with Joel that leaves us both in fits of giggles. And sometimes we dance on our porch just for fun.

 

 

 

 

 

Lounging on the porch on a breezy afphoto 1ternoon was suddenly the first time Luke read me an entire pageof one of The Magic Treehouse books. I was so proud I almost cried.

 

 

The look ophoto 5f fierce determination/amusement Joel gets when he’s teaching himself to climb the stairs or pull up to the couch.

 

 

So many summer fun things that Luke now does independently…roasting marshmallows, swimming, fishing.

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The feeling of friends turning into family. Knowing that our family friends now will be our friends for many years to come because they keep showing up. Many of them have invested precious weekend hours building our ramp with John. Our village keeps teaching me what it means love your fellow human. I am humbled by their generosity.

More of our summer moments…we hope you’ve enjoyed yours! Thanks for all the love, gang.photo 1

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Shock

“He who has felt the deepest grief is best able to experience supreme happiness… Live, then and be happy beloved children of my heart and never forget that… all human wisdom is summed up in these two words – wait and hope.” -Alexandre Dumas

As I arrived at school to volunteer in Luke’s class last month, I was excited to find Joel’s preschool class on their way back from the gym. My little man was bringing up the rear of the line in a gait trainer (supportive walker; if you’re not familiar, see pic below) and stepped over to greet me with arms outstretched. (Sporting the sumo-style ponytail on top of his head that reminded me I really needed to get his hair cut…why didn’t I take a picture? It’s hilarious!)

I greeted those sweeties and went on my way. But I paused and turned at the end of the hall because I’m really quite impressed/amazed at how well Joel is taking steps now. I wanted to see how he made the turn down the preschool hall, and instead I witnessed a coup. As the class made the turn, I saw that one of Joel’s BFF’s made a dash down the first grade hallway which sent the fabulous Miss L chasing after her. In the mere seconds that Miss L wasn’t at his side, Joel turned the gait trainer 180 degrees and took off for the office. (The office is a wonderland of doors, cabinets, desksIMG_2508, and smiling faces…heaven for Joel!)

It was all I could do to not shout down the hall, “GO JOEL, GO!!!!” as I gaped at this child who suddenly can step/hop/glide in certain devices. For me, this is bigger than an inchstone…it’s taken two years of trialing, working, and bribing. But now he’s getting it, and I am shocked.

“Shocked” pretty much sums up the last several months of our lives. This weekend marks five years since my mom’s passing, an astonishingly abrupt ending to her valiant 5+ year battle with colon cancer. Now my dad has been gone three months following a sharp, fierce decline caused by an irregular heartbeat which lead to a stroke. He lingered for several weeks but wasn’t himself and slipped away a few days before Thanksgiving. I have often thought losing my mother was like losing all the air in my atmosphere. She was/is so much a part of my being that I occasionally found/still find it hard to breathe. Now I feel as if the ground beneath me has crumbled at the loss of my dad. It’s something you don’t question, right? There is always earth to catch you, hold you up. But I find myself stumbling, not quite sure how the world can keep spinning on its axis if my dad isn’t making pizza and watching movies. (Shoot-’em-ups, as he would say…can’t believe how sad I am when I see a promo for a new action movie.)

But joy and pain have become so intertwined in our lives that there is always a flip side. Our boys keep growing, learning, and moving forward every day. And once again I have no idea how I’d climb out of the grief chasm without their sunny faces. Luke is now six years old, reading all over the place, and steadily improving his writing. I certainly don’t remember writing full sentences in Kindergarten, much less making books! He’s losing teeth, making new friends, and plotting a Lego revolution. He is obsessed with facts about animals and will share with (lecture) anyone within ear shot. In fact, his teacher mentioned that she has stopped wondering if he is correct because he usually is!

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And our sweet baby is now four, with a whole new attitude and level of determination.

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Joel is marking off some major inchstones in communication, vocalizing more sounds and mimicking speech patterns more frequently. We are also in the preliminary stages of teaching him (and ourselves) to use an ipad app for communication. I am fascinated by the world of AAC (Augmentative & Alternative Communication) as part of Joel’s total communication package. Seeing the look of relief on his face when I present a board or the ipad gives me a lump in my throat every time. We know he has so much to say, and I feel like we are on the path to helping him let it out. I am amazed.

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“True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have, which is sufficient, for he that is so wants nothing. The greatest blessings of mankind are within us and within our reach. A wise man is content with his lot, whatever it may be, without wishing for what he has not.” -Seneca

We have family who are our true friends and friends who are like family. We are so very blessed by our village. Thank you, xo.