When we bought our house on Belle Pointe, one of the first things I loved about it was the big staircase. When you walk in our front, door thirteen steps greet you on one side, a long hallway down the middle and the living room on the left.  But the stairs sold the house for me. I grew up in a house that had what seemed like a “grand” staircase at the time – now I know they were just narrow steps up to what was once the attic, since turned into bedrooms with slanted roofs and plaster walls.

I haven’t thought much about the steps until this morning. Until I spent about thirty seconds on each step as I held James’ little hand and helped him awkwardly and very slowly navigate each and every one.  At first I was annoyed – I don’t have time for this today James!  So began the conversation with myself: “I should just pick you up and position your thirty-five pounds on my right hip and carry you down. No, that would not be good for my about-to-go-any-minute lower back.  Okay, well, I can get you on my back and give you a piggyback ride, that won’t be so bad.” And then I realized, James was actually enjoying his very slow and cautious decent. How could I take that away from him? And, so it was onto step number three.

I kind of tricked James into wanting to decend the steps in the first place.  He was running around upstairs, sure to end up in the empty bathtub making the sign for water (which wasn’t part of my morning plan), so I turned on Little Einsteins really loud downstairs and he heard it. Drawn to the TV, (like a moth to a really big TV), at first he sat on the top step and made horrible sounds that I now know mean, “I want you to come carry me down Mom, ‘cause I don’t want to put in the effort!” But as soon as I got to the top step he stood up, grabbed one hand and placed his other on the banister. And we walked.

As we walked, I thought about that staircase in my childhood home, and the many times I slowly descended it. Not because I wasn’t able to walk well, like James, but because I was afraid of what or who waited for me at the bottom.  (And because you never knew when or if you were going to step in something left behind by our mischievous poodle.) And before I got there I would listen with all my might to see if I could figure it out.

An alcoholic’s home is not peaceful and mornings are not greeted with an hour of quiet time and a cup of coffee. At least mine weren’t. Our house had an open door policy, which meant as a kid you were never sure who would be sitting at your kitchen table, and what drama had unfolded or was just about to unfold.  With each step I grew more anxious trying to put a name to the voice and decipher if they were crying, mad or drunk. I don’t want to exaggerate here – nine times out of ten it was the neighbor lady or an aunt or someone that I’d be glad to see, but there were those times when reaching the bottom step meant you were about to hear news that was gonna rock your world for the next couple months. This is how I found out my sister-in-law, just twenty-eight at the time, had passed away in the middle of the night, and that my brother had escaped a near-death motorcycle accident at three a.m. and was lying in the hospital with a multitude of broken bones.

My point in rehashing all these things is to somewhat validate myself in saying, “Yes. I didn’t feel safe in that house, and I should have.”  Blah, blah, blah – woe is me. No need to dwell on the past, just a simple reminder as James and I make it to step six that I want him to always feel safe while descending these steps. I want him to always know what or who awaits him in the living room. All children deserve at least that much in their own home.

I grow impatient at step number ten. But as I watch his little foot carefully slide off the top of step nine and place it safely on ten, he smiles. He smiles because he knows that he is making progress. You know the saying, “a journey of a thousand miles starts with a single step,” well, these stairs must seem like a thousand miles to him, and the viewing of Little Einsteins is still light years away.  But we keep going.

As we near the bottom, I smile as I remembered the first time our dog, Fido, just three days old, learned to climb up the steps, eagerly following us upstairs. And then how he would sit on the top step and cry- too scared to come back down. Until we taught him how. Until we took his paws, just like I was taking James’ hand and carefully helping him learn how to navigate. I know they always say in life the “climb” is hard but “from this point on, it’s down hill,” but that’s not always the case. Sometimes the aftermath of things can be just as tricky as the climb. Falling down steps is easier then falling up them.

As James’ feet move from the last step onto the hardwood floor, he smiles with excitement when he sees the Little Einsteins on the television. I sit down on the bottom step and am overcome with thankfulness. It was just a year and a half ago that I collapsed on this step in tears, in a deep depression. I was reminded that the climb and the descent sometime take time, but in the end are so worth it.

I am thankful today that I had to stop and take five minutes to help James descend this morning. It gave me a chance to realize that I must take those first steps in order to get to where I want to go. That I have the ability and responsibility to help James feel safe in his own home, and that “stopping to descend the staircase” like “stopping to smell the roses” is an opportunity to appreciate life and growth. The downside to all this? The realization that my steps really need to be scrubbed!

James said the word “apple” the other day. This is a huge deal, considering that he still hasn’t said the words “no” (which I hear is big for three-year-olds), “Daddy” or “Mommy.” Nope. He chose to say the word “apple”. Believe me, it’s not that I haven’t tried to get him to say “Mommy.” Almost every morning when I go in to get him up I say, “James, can you say ‘Good morning, Mommy?’” and I even sign the word for “Mommy” as I say it. He will look up at me and giggle like he’s watching his favorite Little Einstein episode. “MOMMY”, I say again — a little slower and louder. More giggles. Today it dawned on me that this might be the reason he still has a hard time with his own name. Does he think he is Mommy? I don’t know. But if in fact somewhere in his little head he does understand, I’m at the point after four years that I’m about to say, “James, come on, really… would it kill you to say my name? Just once?”

Recently, another mother of a boy with Down syndrome turned me on to these great educational DVDs . Her name is Sharon, and I met her at a fundraiser for James’ school. Her son was sitting just a few tables away and I was drawn to him. I could hardly keep my eyes off of him. This is not normal for me. I usually run as far away from a teenager or adult with Down syndrome as I can – I guess in my attempt not to have to face what is ahead of me before I am actually ready. But with Ben – that was his name – it was different. He had such a sweet spirit, even from far away. We stayed until the end of the event at which time Ben started helping to stack the folding chairs and I saw her interacting with him and assumed she was his mom. I introduced myself, still staying clear of Ben, and commented on how sweet her son seemed. She was kind and gracious and extremely well put together. (I thought as I stood there, “I never look like that since I’ve had James. I always look like I just woke up and threw on the first clean thing I could find and there is always a stain on it that I didn’t notice until I got in the car.”) Anyway, as with most of my encounters when I’m talking about James, I ended up crying to this woman I didn’t even know. She offered a lunch date and I accepted.

We met on the South side of town and she showed up looking like she just walked out of the Coldwater Creek catalogue. I made sure there were at least no stains on my shirt. I cried a lot, and she listened and offered as much advice as she could. I confessed to her that I wasn’t a very good teacher/mother, and that sitting down to read with James has proven to be as hard a task for me as committing to work out. She said, “Hey listen, I understand. If it weren’t for the Love & Learning DVDs, Ben would have never learned to talk! Instead, he entered kindergarten saying the entire alphabet.” Within an hour I had purchased the whole set.

When the set arrived in the mail I could hardly get it out of the package fast enough. Included with the DVD is an audio CD and several paperback books with instructions that said, “This is your One Minute Reader.” Now, this amount of time I can commit to reading! One minute a day.  So, after going through the first book, which is the entire alphabet, each letter on a single page, we moved onto Book No. 2. This book is dedicated to letters A through F, and now each letter has a word: A – apple, B – bus, etc. And the other day, when I opened Book No. 2, he stared at those five little letters for a moment and then said, “apple”. Well, it sounded more like “aauu-pppa”, but I knew what he said!

To be honest, I know he doesn’t know what an apple is or what it tastes like, because he won’t try one. And sadly, he will never get to eat my mother’s apple pie, or pick a ripe green one from my grandfather’s tree and sit on the back porch with him and a salt shaker on a hot summer day.

When I was growing up, my grandparents lived in the house next door. Although my Grandmother JoHanna died the year I was born, I have fond memories of my Grandpa Michael who lived until I was six. Although I was slightly scared of his rough-and-tough exterior (a trait I’m sure he developed being an immigrant), he had a gentle spirit that could easily calm my fear. He would sit at our kitchen counter and in his native Slovenian tell me to put my hand down and we would play a game. I would put my hand on the counter and he’d pull his arm up with a fist made, and give me the chance to pull my hand away before he would slam his fist down so hard that the salt and pepper shakers would dance. When it was my turn, of course, he would let me hit his hand several times before egging me on to “really hit it hard.” With all my five-year-old might, I’d aim for his hand and, of course, he would pull it away just in time. He’d walk out the back door with a grin on his face and I’d run upstairs holding my hand, bruised and red, yet somehow my heart felt so loved. My grandpa wasn’t big on hugs and God forbid you ever said, “I love you,” around him, but somehow I knew, even at such a young age, that this was an outpouring of his affection; the only way he knew how to love a little girl.

The apple trees were in his yard. And come July, you’d see him out there, a little hunched over, walking underneath their branches with a glass saltshaker in his white front shirt pocket. (Which could be part of the reason why he was hunched over — it was the thickest and heaviest glass saltshaker I’d ever seen!) My brothers like to tell the story of him picking up a rotten apple from the grass, covered in bees, sprinkling it with salt, then biting and swallowing – bees and all. I don’t doubt this story, I’m just happy to have never witnessed it myself. Maybe that was the only way he knew how to love ten-year-old boys?

I would have loved for my grandpa to wrap his arms around me and say, “I love you,” on a daily basis, but he didn’t know how. What he did do, however, was find ways to show his affection – ways that cut through everyday life and created lasting memories; memories that I could hold on to forever. I pray that I can do this for James. Even though I’m well aware of my shortcomings in the “mommy” area, and I know that I don’t love him like I should every day (how many hours of TV are kids his age supposed to watch?), I pray that I can create hand-bruising, bee-eating moments he’ll remember and know that without a doubt I loved him more than words can say!

Thanks to Sharon and Ben, James and I now share a good five to ten minutes together every morning (we’ve graduated from the One Minute Reader!), and they are the best moments I have with him all day. I feel more connected with him then ever before, and I pray that these times will cut through. I often wonder how I would feel if I committed to the “one minute reader”version of my spiritual life, setting aside that time every morning to hear what God might want to say to me.

Last night, while surfing the Internet, I came across one of those web sites that offers to do your weight and fitness evaluation, and give you the perfect diet plan for your body type, all for free! In my desperation to lose the ten pounds from James that I’m still carrying around on my mid-section four years after his birth, I’m up for anything! So I spent the time inputting my cravings, my eating habits, my height, my weight (well… close) and then I got to the final page. I was about to hit “submit” when
I see in small print: “Before we give you all this amazing, valuable and life-changing information for free, please know this is a fourteen-day trial and after that it’s going to cost you $30 a month for our guidance. You can cancel at anytime, but you have to give us your credit card first or you get nothing!” Augh. Did I really just waste twenty minutes with the hope of someone telling me what I really already know? Eat less. Work out more. No big secret there. So I just left the site. Then I started getting all these pop-up windows saying, “Wait! You’re not done”, and “Wait! Did you think about how fat you might be if you don’t give us $30 a month?” Please! However, in one of the pop-up windows there appeared this body chart and I was able for the first time to look at different shapes and determine which one describes me. I didn’t know this, but there are four body types for women: hourglass, pear, banana (who knew?) and apple.

Apple. I am an apple! This basically means that I’m thick around the middle, tend to gain weight more in my stomach and chest area and have broad shoulders. Apple. Me. Mommy. Hey wait … James has said my name!

Boots

There is a pair of black rubber rain boots on my patio. Not because I wore them once and they were muddy and I left them outside the door so I wouldn’t track mud into the house – no, these boots are a permanent fixture of my patio decor. My husband filled them both with potting soil and planted ivy and petunias in them. But, one boot has grown and flourished; the other is dead as a doornail. Before I get ahead of myself, let me tell you why I even have boots filled with flowers on my patio.

My mom and dad had six of us kids, and somehow we all managed to outlive my parents, even though our life styles much of the time didn’t support such an outcome. So, when my dad died last July, my brother Lenny (who manages to walk the line between intellect and emotion really well) was handling all the funeral arrangements. In making the decision on who the pallbearers would be, he had an idea: “Dad pretty much carried each of us throughout our lives through many rocky times. I think it only appropriate that we six carry him to his final resting place.” Brilliant idea! And because he thinks about the practical, he added, “But how will the girls carry the coffin in high heels?” The answer? Black plastic rain boots!

My father Lud was a character, although I’ve yet to see him portrayed on screen, he was larger than life itself.  He was one of those “go-getters,”’ a non-stop ball of energy and talent. And he was always right, always looking for the deal, and always entertaining. I remember my first communion party, and thinking that it was boring and not very fun, until my father took out his accordion. Within a minute the place was lively and full of life. I watched in awe as a seven-year old and knew then that that’s what I wanted to be when I grew up. I saw that day the power of music to transform people’s spirits, people’s hearts, and I wanted to become like my dad — a spirit changer.

Along with being an entertainer, my dad spent the first fifty years of his life an abuser- abusing his body. He drank a case of beer and a bottle of whiskey, along with smoking four packs of cigarettes, a day. Yes, a day! He had his first heart attack at fifty, and took his initial stab a sobriety two weeks later after he emerged from a coma.  All of that booze, along with failed attempts to live life in a non-altered state also made him a man that you could love and hate in the same second!  He would give you the shirt off his back, and then when you had it on, tell you that you looked like shit in it.  When my husband was just 21, he called and asked my dad’s permission to marry his youngest daughter. “Call me back in two weeks,” was his response.  Needless to say, from that moment on Jim and my dad had a love/hate relationship.

My father spent the last 31 years of his life cheating death and dealing with the residual effects of all that self-inflicted abuse. He also seemed to be part feline in his constitution, because there were many times my brothers and sisters and I were called to his bedside to say our goodbyes, only to discover that he was only on life number six or seven.  One time in particular we all flew to Naples, Florida, where he went to escape the Cleveland winters. It was Easter weekend and he lay once again in a coma without much hope of pulling out of it. I said my goodbyes and had to catch a flight that Sunday morning, Easter morning. As I waited for my plane, I got a call from my husband who had stayed behind. “Lynn, you’re not gonna believe this — but he has risen again!” Not only that, but to make sure he had all his “faculties” the doctor asked him to point out the people in the room. “Why, that’s my beautiful daughter Karen Rose, and you’re Dr. Bogart, and that guy (pointing to my husband), that guy right there is a pain in the ass.” YES! He’s back.

But in July of 2009, he did in fact reach life number nine. As I lay next to him and sang to him in his Slovenian language, the tear that fell from his eye said what he could not say … “goodbye.”

It rained the night before his burial service, but we were prepared. As the coffin was wheeled out from the funeral home, the six of us walked along side it, the boys intermixed between us three girls in order to distribute the weight, and my sisters and I were wearing our boots. In true Hrovat fashion, we added an exclamation point to the already great sentence. Late in the night, with no sleep and tears in her eyes, my sister, Karie, took white shoe polish that she found amongst my father’s things and painted “WE LOVE LUD” on the outside of each boot. As we walked up the soggy hill that July morning to place my father next to my mom, there was no doubt about the amount of love we had for our dad. For a man, who even though he couldn’t tame his own demons, loved us the best he could. For a father who left this world penny-less, because he gave all his earnings to support his children’s dreams, and for a father who, through his faults, taught us to be better fathers, better mothers and better people.

Now, in the mornings when I have my coffee and contemplate how I might make the best use of my day, I stare at the boots. I don’t find it ironic at all that one is flourishing and one is dead. It is to me a reminder that the living must go on living after our loved one moves on.

After watching several batches of flowers die in the right boot, my husband took a candle and placed it in the dirt. And to mark the one-year anniversary of his death, he lit the right boot and we reflected on the man, the legend, and the one-of-a-kind spirit changer.