Sunday, May 24, 2015

Sumo Potato

The school year has ended and we're testing out the new routine. Of course, we'll do lots of enrichment and projects around the house. We'll have a new chore chart and everyone will learn new skills and we won't fall into those bad habits of too much screen time and sleeping in. I vow to find creative ways to prevent bickering and whining about boredom, at least until July. 

Actually, I love having the kids around all summer. I'll be sad when they aren't underfoot all the time. The two and half months of togetherness stretched out before us will end too soon. I just realized that this time next year we'll be looking forward to three new beginnings. Ben to high school, Alex to middle school, and Gigi to Kindergarten. May will be a gully washer of tears. 

So lets focus on the now.

After the nightly tuck in trifecta, I let Gigi read "a few more books" in her bed and after she has fallen asleep I go back in and turn out the light. Every night, it's the same old story. Or stories. I think her eyes are bigger than her circadian rhythm. 

It is annoying to shelve all those books daily (even though I make her help) but I recall how much I wanted to be a librarian when I grew up, so it's my own fault.

Gigi asked if I would play a game with her. I told her I needed to finish my task first. She sighed, and said, "We would be super friends if we were the same size."

I wish I could remember what caused Gigi to say the following, "That made my eyes boom and pop out of my head!"

Alex had heard a snippet of the evening news and asked: Why is the news always horrible? Doesn't anything good ever happen in the world?
Mom: Bad news sells.
Alex: I'd buy good news.
Mom (ever the evangelist): Lucky for us, the real Good News is free and it takes away all the bad news in the whole world forever.
Alex: I feel like I should say, Alleluia?

I came across this photo from over a year ago my sister sent me. Foreshadowing?

We wanted to plant some more knock out roses to break up the Great Wall of Vinyl, but we missed the boat on a good deal. So Jason bought a bag of potatoes and some root starter and hacked off some of the present blooms. I'll let you know how it goes.

Ben went to a youth group event and a teacher sent me this photo. Learning to Sumo is just part of growing up Catholic, ya know? Probably, that's Shinto, but we embrace religious diversity around here.

This is just my odd little way of reminding myself to live in these moments and wishing all a happy summer. I better get some sleep so I can shelve with a smile.

Thursday, May 14, 2015

Hippie Soaps and New Age Cures

Medical Update

My neuro doc trialled me on one of Ben's medications which seemed to have an almost immediate improved result on my muscle strength and stamina. However, it appears to come with the price of some hard to tolerate side effects. I've taken a break and will experiment again with half the dose soon. It has helped Ben moderately but we had to work at getting his dose right too. Here's to hoping for a positive net outcome for the elixir. 


Alex celebrated the end of the cub scout school year by climbing a traveling rock wall about 50 times at the scout picnic. I think it's safe to say his mitochondria are doing a decent job. He wasn't even sore the next day.

Jason and Ben went on an overnight fishing/camping trip with scouts. It was a nice respite from the world and they caught and ate their fill.

Mother's Day

I was given Birthright Roses at Mass

Lunch at the Fountain on Locust

Malcolm Martin Memorial Park in East St. Louis, A hidden gem

 We stopped by Union Station in the hopes of seeing the renovated lobby, but it was blocked off from the mall (which is happily less dead than our last visit). I assume one can still visit the lobby from the front door, but we didn't try it out in the downpour. 

They wanted to try a photo booth. Jason set up his camera phone to pretend.


We celebrated our 15th Wedding Anniversary on the Feast of Our Lady of Fatima. The traditional gift suggestion is crystal. Jason made me a stunning necklace and matching earrings that include the birthstones of the kids. I wrote an ode to crystal and got him a crystal growing science kit. I used a stanza of my poem as the title of this post. 

Crystal Wedding Gift in Use

Jason also presented us each with a pin for 15 years of service. It even had a little embedded crystal. It was a corny joke, but we wore them proudly all day. 15 years of loving, honoring, and serving is pin worthy, after all.

We went back to the Fountain on Locust to share their Three Coins in a Fountain dessert, as the dish shares its name with our wedding song.

Things I recall from our wedding day:

Seeing the love and admiration in Jason's face as I walked down the aisle. Even though I looked like a ghost with my free make up counter experiment, I knew he thought I was beautiful.

Being awake for days because I was too excited to fall asleep the night before we wed.

The veil my mom and I made that was meant to detach, but kept falling off during the ceremony.

Fr. J telling everyone that as witnesses, they were charged with helping us keep our vows.

The weather was perfect.

Green cake and red champagne.

My relatives kept asking why I didn't make my sister dance in the hog trough.

No rehearsal because the church was mistakenly double booked with another wedding.

The first thing Jason said to me as my husband.

So many loved ones and friends that celebrated with us that are now gone.

Embarrassing dollar dance where we asked our friends to pay to dance with us.

So much happy crying.

After our first dance, Jason surprised me with a wedding song he'd written and recorded.

A St. Benedict medal being pressed into my palm by a guest. I keep it in my car.

The smell of gardenia.

Awkward moment where the single ladies were called up for the bouquet toss and I just handed it to my sister.

I wore a penny in my shoe.  The garter was my something blue. It was the second and last time I've ever worn heels.

The ceremony music was awesome.

My father beaming.

Feeling God's presence the moment we exchanged vows, as if His hands were holding both of ours.


Friday, May 8, 2015

Mito What Now?

In late 2012, we took Ben to the National Institute of Health in Washington D.C. to see the experts that could possibly classify his Congenital Muscular Dystrophy into a working diagnosis. There, we learned Ben didn't entirely fit CMD, but that he more likely had a myasthenic syndrome and that I was possibly affected too. Since then, I've been followed by Ben's neuromuscular doctor as well as a few other specialists. Soon I will undergo muscle and skin biopsies to see if we can confirm the latest potential diagnosis of Mitochondrial Myopathy. Mitochondrial diseases are not easy to diagnose and there is no cure, as yet. But there is still benefit in having a name and general prognosis in order to better treat symptoms.

Learning I'm not as healthy as I'd imagined is both frightening and oddly, vindicating. Maybe I'm not just hopelessly out of shape and lazy. Maybe my ATP sucks at producing energy and my ribosomes are rotten. My exercise intolerance, blurred vision, low blood sugar, headaches, muscle pain, frequent respiratory infections, misbehaving heart, planned descents to the ground (that I'm now told are actually falls), preterm labors, and maybe even the adenoma in my head makes a lot more sense now. After explaining my symptoms, I told my cardiologist he must think I'm a hypochondriac thinking there are so many things wrong with me. He chuckled and said I was the opposite; someone with a lot of things that are wrong, yet thinks it's nothing. Optimism is hilarious.

I told Ben we'd have matching scars and he just sighed, and asked, "What now?" I quickly explained I'd be getting a scar that would match one of his existing marks, no new cuts for him. We are hopeful Ben's muscle biopsy can be re-stained for the mitochondrial test as well, but it has been used for so many tests and shipped all around the country and the sample isn't ideal for the current standards. I'm not looking forward to having a slice of my quads removed, but I'll be glad if it can spare Ben a measure of pain.

This (potential) news is already altering how we make medical decisions. Ben saw his orthodontist this week and was supposed to be fitted for a head gear. The story is that his expander has done all it can, so now we have to bring out the next level of torture to try to pull his maxilla forward. Most kids that need this wear it while sleeping and in 60% of cases it prevents the need for jaw surgery down the road. Ben is not most kids and can't wear it at night because he wears a bi-pap mask for central apnea. So he'd have to wear the headgear pressure mounted to his forehead and chin for eight hours during the day.  Ben already struggles with oral motor control (eating, breathing, swallowing, speaking). How would he manage with metal rods in the way? And Ben's weakest muscles are in his face. Doing all these calisthenics to his bones isn't going to last without the muscle strength to keep it in place. Even with the threat of jaw surgery, I couldn't make him take that path right now. Ben isn't seeing an orthodontist in the hopes of obtaining a pretty smile, we are solely aiming for functional breathing and (if we're being greedy) eating parts. We are going to try to find a speech pathologist to help with oral motor control instead. Losing the word, "dystrophy," would hopefully help us in getting insurance coverage for therapy again. So now I'm anxious to get something else into his chart, even if it's only until the next rabbit hole appears. His future cheeseburgers depend on it.

Kid Quotes:

On Wednesdays I disinfect all Ben's medical equipment parts. It was close to bedtime and I hadn't gotten around to putting everything back together.
Mom: Could you go into the kitchen and get everything you need to make your bi-pap work?
Ben: You mean, like, hypothetically, or?

Mom: Why do you chew on your hair?
Gigi: Because it tastes like shampoo.

Gigi: Nobody loves me anymore.
Mom: I love you. God loves you. (listed others who love her). Do you love you?
Gigi: I can't love me, because I've never even kissed me yet.

We are waiting to hear if Ben's high school of choice will entertain the idea of enrolling him as a student when the time comes. I was explaining the process to Ben and said something about meeting expectations and grades.
Ben: They got academic standards they want me to meet? I'll just meet 'em!

The above is not a particularly funny quote, but it struck me as something to write down. It speaks to Ben's (perhaps inherited?) optimism. I don't think he realizes how much his attitude helps get us all through the muck. When faced with a new roadblock Ben usually seeks out the least bumpy way through rather than throwing his pack to the ground and insisting we turn back. I'm so grateful for that witty spark of resolve that has flickered in his persona from the start.

Since Ben only attends school half days for health, I started hosting small group Religion and Literature discussions with classmates after school at our house as a way to mitigate the loss of those class periods. The last scheduled event fell right around his birthday, so I opened it to the whole grade and called it a party. My first foray in the teen world was not so scary after all. About 30 teens and some adult helpers showed up and it was a lot of fun! Teenagers get a bad rap, though I do think there is something to the idea of checking the phones at the door. I think Ben was really moved that so many of his classmates volunteered for more "school" for his benefit. Kids today know how to show up and their support makes all the difference.

Sunday, May 3, 2015

Break A Leg

I woke up this morning to a new teenager in the house. I'm pretty sure I went to sleep debating his preschool choices but suddenly we are making plans for high school. Ben was born on a Thursday afternoon and we were granted one day of Italy before we got sent to Holland*. In the space between, I video recorded the new father sharing his happiness and reflecting on the events of the day. I tracked it down to show Ben how thrilled we were to be his parents. He asked how that could be when we didn't even know him yet. I tried to explain the beautiful mystery of parenthood. Loving without limits, knowing without facts, and humble gratitude at being privy to a miracle.

I still feel so blessed at being granted a front row seat to the Ben show. I know as he follows his path out of our theater he'll gain new fans and critics of his dramas and comedies. He'll have new directors and managers in unforeseen roles. I wish him moving monologues, a cast of supportive friends, and maybe one day a brave and beautiful leading lady.  I wish him adventuresome scenes, bombastic final acts, and glowing reviews. I wish him more. 

* Welcome to Holland is a poem well known to parents of children with special needs. I'd just like to add that having one kid in Holland and two in Italy requires extra finesse and there are cultural casualties, but that's a post for another midnight.


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

God Moment added evening of May 3rd: I wasn't able to go to Mass with the family in the morning because I was teaching Sunday School, and then Jason got called in so I couldn't go to the eleven, so I found myself sitting down in church this evening to the realization that it was the 6 o clock hour on the 3rd of May, the moment when Ben pulled his Lazarus impression thirteen years ago. Whenever we pass that spot on the planet in its orbit, I get weepy. So I was boo hooing my way through Eucharist, kicking myself for sitting in an exposed pew where I couldn't hide from my tears, when the second communion song began. It was the hymn Jason and I have sung to Ben at each and every hospitalization, a tradition we began the night of May 3rd, "Seek Ye First." Ask and it shall be given unto you, seek and ye shall find, knock and the door shall be opened unto you. Man must not live by bread alone, but by every word that proceeds from the mouth of God.  I know all these things to be true. 

Sunday, April 19, 2015

Just Doing Life

Vernal warmth has awakened the earth breathing up a new season and old habits. Since my kids have not yet developed the skill of dressing for the weather, I've hidden the sweaters and freed the shorts from their off season tubs.

The first scoops of frozen custard have crossed our lips.


Ben, on the brink of teen hood attended his first middle school dance mixer.


We dismantled the deck, diving into this season's marital test.

I feel...

Our tires are pumped.

Baseball is back.

Let's Go Caudnuls!

"I see the Auch!" 

Cub Scout night at the ball park.

I love that I can easily walk to the library, our church and school, the farmers market, and many local small businesses and restaurants. I remember wishing for that long ago, and without really meaning to, I've landed in that dream. And until the heat of summer remembers us, it's so much easier to find the time for errand walks. In part to relish the now, I'm aiming to see the present and capture the good on my walks. Scenes from my last two leg stretchers:

Noticing details (and collecting nerdy friends) creates the proper equation for carrying away a trivia night title.

(Ellen's photo) You'd think we'd know which 
Cardinal earned the most recent no-hitter though, right? We do now.

While I was storming my brain with musical groups that begin with the letter R and identifying best selling toys from the 80s, Jason was living on the land with Alex and Gigi at Cub Scout family camp.

A girl and her canteen.

Kid Quotes:

Gigi: Let's play science. Touch your nose.
Gigi and Daddy both touch their noses.
Gigi: Science didn't say!

Gigi: Will someone please help me spill the cereal?
Mom: Spill?
Gigi: Not on the floor, spill it in my bowl.

As we waited for some turkeys to pass in front of our car Ben said, "Hey! It's poultry in motion!"

Mom: I need you to pick up these toys.
Gigi: But that will take for one whole ever!

Alex wanted to climb a large boulder, but the height of the drop behind was not apparent, so he was denied permission.
Alex: But it's a dream rock!
Ben: It's my dream too. A nightmare, but still a dream.

Dad: How do you want your french toast cut?
Gigi: Like a unicorn.

Gigi (tearfully): Mom, I have something to tell you. Give me your ear. (whispers) I am not your best girl anymore. I didn't listen to my heart. I ate four chocolate eggs and you said three. Do you a'give me?

Ben: How does everyone else just know how to do life?

Thursday, April 9, 2015

The Upper Room

Alleluia time

Deep in a Berenstain Bear Phase

First Hot Rollers

Resulting in two minutes of curls, just like her mom.

At the post Mass egg hunt she fell in a hole and upended her basket. I stopped to snap a picture and she looked up in exasperation saying, "How about a little help here?" 

He was lost, but now he's found.

Cousins bonding over pink.

My mother took a picture of a reluctant Gigi at dance class and a friend of hers created a painting from the shot. It hung in a gallery for a bit and then was given to us. It makes my eyes wet

The original phone shot

The bulbs tossed out by the Jewel Box live on.
Easter Monday I was met with a challenge I hadn't seen coming. It has shaken me up and caused me to dig deep seeking the right response. The answer came much faster than I anticipated. The answer is gentleness. Every being in every state can be helped by a gentle touch, a kind word, a soft heart. It can't hurt, and that's the point. Don't hurt.

So though I may wish to stay safe and hidden in my upper room, surrounded by others that think like me and know what I know, that is not what Easter is about. We are all called to know, love, and serve and not just to those in our rooms for He is risen, indeed.