Sunday, June 28, 2015


Exactly four weeks after my biopsy procedure, my neuromuscular doctor called with results. As things have gone with our cases, the findings don't point to a definitive diagnosis, but it provided some clues. First, the great news is that my muscle appears healthy and a progressive muscle disease is not evident. The muscle biopsy was non-diagnostic but will be maintained and stored for further staining if needed. However my skin biopsy was abnormal and showed a neuropathy, pointing to a problem with how the nerves and muscles communicate. The neuropathy alone, however, doesn't explain my clinical muscle weakness. Somehow my body isn't tapping into the resource of healthy muscle, causing weakness and fatigue. So no progressive muscle disease, but still a neuro-muscle issue is evident. I'll continue to be followed in the neuromuscular-cardiac clinic and will keep fine tuning the cholinesterase inhibitor dosage. Ben's appointment with the same doctor is upcoming so we can talk about how this diagnosis may relate to him then. After sitting with the news a day I feel relieved and confused and hopeful and a little aggravated that the assault on my leg seems mostly for naught. Onward.

In the spring, we dismantled our little backyard deck. It was in need of repairs and wasn't very functional. It was already surrounded by a small concrete patio, so we decided to go for one level space by filling it in. We got bids and signed one and then our region tried on the identity of tropical rain forest for a few months. Finally, the clouds parted long enough for the pour and our patio is complete. Mostly. Somehow it wasn't communicated that we'd like them to remove the old deck post still embedded in the concrete and we need to find a way to patch the missing siding on the house.



The workers cut a peep hole out of the protective sheeting so Alex could watch the whole process.


We knew the color wouldn't match, but it's more noticeable in the picture than in person.
Function over form.


Gigi's first year of dance classes came to an end with her first recital. I wasn't sure how she'd do on stage since she's often hesitant to try new things or to have an audience outside of family. She did great with her Shirley Temple tap number, "When I grow up." She spent the rest of the show in the green room with the whole dance troupe and came home twirling and leaping into the night. I was on the fence about signing her up for dance again next year because she was beginning to resist going to class. I think feeling shiny under the stage lights may have changed her attitude.

Kid Quote

Gigi was complaining in her car seat.
Mom: I don't want to hear any fussing.
Gigi: Well too bad, I already started.

From early on, Ben has always loved to swing and we encourage the activity because it is good for his vestibular balance and moves his muscles without much force. His self proclaimed favorite spot in the world was the orange handicapped swings at a nearby park. He recently made the sad discovery that he'd grown too big for that seat since his feet dragged on the ground. Another local park recently added a new handicap swing. Ben eagerly tried it out and it was a perfect fit.

Happiness is in a swing that fits

Happiness is in a snow cone

Happiness is in sharing

Friday, June 19, 2015

While the Camper's Away

At drop off. It was caveman day. 

For the 6th time, Ben spent the week at the annual Muscular Dystrophy Association's Camp. We've gotten pretty good at packing him up and walking away, confident all his needs will be met, especially the need to feel celebrated and free from some of the confines of a medically challenging life. Packing is a big task with all the medications and equipment, but Ben's haul and five pages of instructions is light compared to what it takes to support many of his fellow campers. It is always hard to see so many of his camp friends lose more of their physical independence year to year. Living it day to day, the tolls sometimes slip by, barely noticed. I wondered what changes others observed in Ben. Still, evident in every camper's face was the delight at making it to another MDA camp experience. I'm not entirely sure what all goes on in that special society of preserverers, but I think that's part of the magic. It's not mine to know. What I do know is Ben is very well cared for and always returns more confident and spiritually independent and wiped out by fun. I couldn't ask for more.

After we dropped Ben off, the four of us explored a local wonder, Johnson's Shut-ins. I hadn't been since the 90s and there has been major changes to the area due to a devastating reservoir failure about a decade ago, but the wonder lives on.

New boardwalk makes access to the shut ins a lot easier than I recall. 

I didn't allow Gigi to follow the boys up a wet, slippery path of ankle-turning treachery. 

It is difficult to admit, but while Ben is away, we try to do things we likely wouldn't attempt as a family. It is not easy to balance Ben's needs with wanting to give our other kids more typical life experiences. This is another reason camp is awesome. It gives us permission to focus on the other priorities of our family, while Ben is having his own ideal vacation. Though, we also eat lots of ice cream because Ben doesn't like cold foods, so I guess it's not all about ability.

As I struggled with climbing all those stairs on the boardwalk, however, Jason pointed out that time might be running out on our more adventurous treks. Where's my camp? I was told to expect biopsy results in two weeks. It's been three but it hasn't been read yet so I'm practicing patience. I'm still experimenting with the medications and found one that really did improve my muscle strength and stamina but the side effects were miserable. I also became aware while on the med that I was suddenly swallowing better. I hadn't realized how difficult it had become until I stopped the meds and my old swallow returned. I will be trying another formulation of this drug and am hopeful that I can benefit from the positive effects eventually.

Sibling Reunion at Pick Up.

Alex and Gigi missed their brother to the point of behavior change, a fact I shared with Ben before drop off. He asked me to prove it with video. I showed him how Alex slept on the floor of Gigi's room because his was too quiet without Ben. I showed him Alex tearfully describing his Lego creation and what he'd do with it if Ben were there. And I showed him clips of all the statements that started with, "I wish Ben were here." I shared our prayers and letters and count down chart. I think he got the point.

He's back!

Back to Real Life (Unpacking meds requires reorganizing the lot. He didn't take all this along).

Tuesday, June 16, 2015

Dear Santa

The list of things I haven't blogged keeps growing but I'm resisting the urge to load all the pictures up and phone it in with a caption fest. We've had a busy week filled with events like vacation, Alex's birthday, Gigi's dance recital, a day of prayer and reflection, a visit from my mom, a visit to my mom, getting Ben ready for and delivering him to MDA camp, saying good-bye to a stand out priest, and a hiking adventure. I'm not sure I could get all that to flow. So I pick vacation to start.

We continue to sing the praises of Santa Claus, Indiana as a favorite place to while a few summer days as a family. We evangelized our good friends, "The J's," and they've joined us for two summers running. Santa Claus is a small lake town filled with kindly townsfolk that began answering the stream of hopeful letters bombarding that zip code each December.

She'd like a pony. What? 

 Soon, a Christmas village sprang up and now it boasts a fully themed amusement and water park where free refreshment and sun screen stations abound. The park is clean. The food is relatively affordable and the menu extensive. Mashed potatoes, chicken salad sandwiches, hummus wraps, and shrimp are sprinkled in with the usual fare. The atmosphere is positively charged with friendly staff and a relaxed pace. It probably helps that we've always gone to the park on weekdays in early June when the crowds are lower.  The merchandising is noticeably kept to a minimum, eliminating the greedy gimmies. This mom approves. The only thing I'd do differently is bring the back up manual wheels for the power wheelchair when it breaks down, but that's maybe a little patron specific. 

Team Triplet Testing the Waters

Less likely to lose a Cards fan in Hoosier land

There is a wonderful campground attached to the park that offers a wide variety of tent sites, RVs, and cabins to rent. Guests travel by golf cart which are decorated for the three times weekly traditional glow in the dark parade. The grounds also have a pool, playgrounds, water park, camp store, ice cream shop and pizza place, gem mining station, and a community pavilion that offers family activities each night. 

Alex completed his first decade on our trip and I think he had a memorable birthday which began with a campfire breakfast and ended with riding in the glow parade in a birthday themed golf cart. 

Ready to Glow
Yes, I'd say we are Santa Claus fans. But the best part of the trip came at days end reflecting around the campfire with friends and family, slowing down and building memories, sharing problems and seeking peace. No matter where our summers take us, may we carry that ember of renewal. 

Friday, June 5, 2015

Q and A on Dad

I sequestered the kids and interviewed them about their parents. In honor of Father's Day coming up, I'll share some highlights from the dad portion.

What is something Dad always says to you?

B: Bernoulli's principal!
A: I love you.
G: Get your books.

What makes Dad happy?

B: Long, like two hours, random conversations.
A: Us!
G: Cows?

What makes Dad sad?

B: Lack of sleep.
A: When we don't do what we're told and sad movies.
G: That the boys were playing screens and they didn't do all their jobs.

How does Dad make you laugh?

B: You want it alphabetically? Good jokes and funny things. He's just a really funny guy.
A: Wrestling with us.
G: Showing funny faces.

What was Dad like as a kid?

B: He did music with his brother.
A: He didn't have a tv, pretty sure. They had a fish and they were playing and the fish fell on them.
G: I'm his own baby. How do I know?

How old is Dad?

B: 41
A: 40
G: I don't know? What, 16?

How tall is Dad?

B: 5 foot 8? 10? Pretty tall.
A: 6 foot about, because you're 5 feet.
G: As tall as the snacks.

What's Dad's favorite thing to do?

B: Go camping with his family.
A: Play guitar and he loves to love us.
G: Kissing Mommy.

What is something Dad is not very good at?

B: There isn't much, maybe riding an elephant upside down while juggling 18 eggs at a time?
A: Not loving Mom.
G: Playing games.

What makes you proud of Dad?

B: Because he's proud of me.
A: His guitar playing.
G: That he plays with me, 'cept not games.

If Dad were a book character, who would he be?

B: August's Dad from Wonder
A: Tigger
G (immediately went to her bookcase to pull out a Berenstain Bear book to show me the picture): Papa Bear

What's something you do with Dad?

B: Talk and pretend that we're knights or demigods or something and we fake wrestle.
A: Make torches.
G: Take walks, but not far ones.

How are you and Dad the same?

B: Good sense of humor.
A: We are both like Tigger, we dance around and are always excited.
G: Sometimes we wear the same clothes.

How do you know Dad loves you?

B: Because he cares about me and tries to teach me about stuff and tells me not to do stuff that's bad.
A: He gives me food and a bed and lets us pick our fish.
G: He says it a bunch of times.

What does Dad like most about me?

B: You said yes.
A: That you gave him kids.
G: Cause he kisses you on every day.

When I'd finished interrogating the kids, I asked Jason how he'd answer. My favorite response was when I asked how he knows he loves the kids. He replied, "It's in my heart. It's in my soul. They are my purpose." That, and if he were a character he'd be Huck Finn, all grown up.

Happy Father's Day, Huck. Bernoulli's Principal can't explain your bottomless energy and devotion for our little family. I'm so glad I said yes.

Saturday, May 30, 2015

My First Scar

I had my procedure yesterday and it wasn't anything like I'd expected. If I'd known then what I know now, I would have waited to do these biopsies on a weekend Jason wasn't working and I would have taken somebody with me. It was a way bigger deal than the punch-core-bandaid I was anticipating. Knowing I was just getting local anesthetic, I didn't think of this event as a surgery and hadn't even read through the standard letter other than to see when and where to show up and when to stop eating. 

So when I did read the letter at the eleventh hour, I realized the hospital was kind of serious about not letting me drive myself. Jason tried in vain to rearrange his schedule and I posted a plea on Facebook where two friends angel-ed it up for me on the spot. Funny story, the friend that took me was Ben's transport nurse to his first surgery when he was a baby.   

People watching in reception, I saw a woman wearing an "F Cancer" (only it had a few more letters) shirt. She was dragging an IV pole and I thought, "Get it, girl." Then she made her way outside to light up in the smoke-free zone and the shirt began to take on a little different tone. 

Finally I got taken to my bay and given my gown, scrubby socks, and mesh hat. The questioning began and I was sticker-ed, banded, and monitored. I had to stop myself from answering the questions for Ben. My birthdate. My symptoms. My medications. No, I'm really not a nurse. 

When the team came for the pre-op talk, it dawned on me that this was not as simple as I'd been led to believe. They asked if I had any questions so I squeaked, "Am I still going to be able to do my 4:00 shift at the carnival today?" They thought I was joking. 

I was wheeled back and I got to see where Jason spends all his days. I'd never been in an OR awake before. I don't recommend being the alert one on the table, if it can be helped. But I'm telling myself I was very brave and I didn't even kick anyone. It was not a painless experience and parts of it reminded me of an EMG (electromyography test). Of course, I was at a teaching hospital so someone had to learn how to stitch on me. I reminded myself I'd delivered babies, ignored broken ribs, and that Ben goes through stuff like this all the time. I just kept breathing and saying my Hail Marys and finally, "Just one more stitch," was the truth. I was wheeled to the PACU and was feeling pretty good with everything still numb. My knight in shining Saturn showed up to escort me home and I was all smiles. 

That lasted a couple hours and now I'm wondering if it's really supposed to hurt this much. I was just instructed to ice it, keep it elevated, and alternate acetaminophen and ibuprofen. No one mentioned needing a cane to walk, or the burning, or that my Mosby scale would still be at a frown. 

Anyway, I should have results in two weeks or so and I hope this little suffering leads to some answers. It freaking better. Smiley face. 

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.