Saturday, September 27, 2014

Joy Comes Round

We're closing in on the geocakes with three to go, but we've hit a snag steeped in controversy. Our cake seeking friends planned on getting the last two far flung Illinois cakes before all meeting at the Arch for the final acquisition. However, two new local cakes were added post facto so there are now 252 official cakes and counting. I see no problem with getting the two extras and still ending with 250 at the Arch, but there's no reasoning with friends that met on the dorm's honors floor at college. Principles.

Ah well, we still have fun.

Celebrating Ellen.

We've had some family fun too with our usual fall traditions. Ben isn't up for participating in quite the same ways as before, but we're adjusting. Instead of going to the park grounds to watch the balloons launch at the annual Forest Park Balloon Race, we found a road on the outskirts and watched from a distance.

We took the wheelchair to the apple orchard and stayed close to the wagon drop off point to cut down on ambulation efforts.

I sought a shady spot for Ben while Gigi and Alex climbed and realized I'd found him comfort in the shadow of a willow tree. It reminded me of sweet Jack and his adopted motto of ever bending, never breaking like the willow tree and that reminded me of a conversation I had with Ben last May. We were on the way to school and heard a song about God turning our brokenness into beauty. I challenged Ben to be open to that idea, look for beauty in his struggles, and let God mend the brokenness. He replied, "Yeah, only remember? I'm not broken. I'm bent."

Bent, not broken. Got it.

Just hanging with Jesus
Balance is our word of the year. Priorities are shifting. We're being careful with Ben's reserves while respecting the needs of the family and striving for positive experiences. We stopped at a playground that had one of those handicapped swings with the high back that Ben loves. The playground was in great need of new ground cover so all the equipment was high off the ground. I asked Ben if he was a "The mulch is too low, or the swing is too high" kinda guy. He answered, "Neither matters to me when Mom is pushing the swing. It's just joy."

Friday, September 19, 2014

Just Desserts

Two weeks post retreat, I'm slowly making my way down the mountain, out of the mist of spiritual awareness and back into the day to day. I'm hoping to hang on to clarity and peace and continue to thwart my anxious inclinations.

We're settling into the new routine of Ben attending half days followed by rest, breathing treatments, and a little homeschooling. We are still struggling to get him back to baseline health-wise, but the extra rest and fewer demands has made life so much more manageable for him. It feels like the right choice and I'm slowly learning to accept help and accommodations with a little more grace and gratitude than humiliation. We're approaching these new challenges with acceptance for the way it is yet we're still hopeful it will get better, or we'll get better at handling hard things.

Jason has taken on a new role as cub master for scouts and it has given our family more bonding opportunities and a chance for Alex to earn some more responsibilities tempered with fun. Who knows maybe one day even I'll like camping.

A trail of unmitigated joy continues to follow Gigi like breadcrumbs. I've seen little in my life more precious than ballet class for beginners. So much pink and determination clad in toddler sized tutus and tap shoes leaves one with cheek ache from the smiling.

Sometimes I can't understand what she says because she uses words I don't expect from a three year old.

Gigi: I left my stuffed unicorn at home...(unintelligible).
Mom: You left your unicorn at home and you loved him the best?
Gigi: No! I left my stuffed unicorn at home so I feel depressed!

Mom (extracting from bedtime snuggles): I'm going to say goodnight to the boys now.
Gigi: I guess they deserve it.

Gigi was dawdling with her plate and I had moved on to cleaning up and giving ultimatums about bite to dessert ratios.

Gigi:  I don't want you to see my plate.
Mom: What did you do?
Gigi: Don't look in the trash!
Mom: Gigi! We don't throw away our dinner.
Gigi: I want just dessert for dinner sometimes.

Mom: Help me find the pieces (to the flannel bible book we take to church). I know we are still missing the snake.
Gigi: I got rid of him. He's bad news.
Mom: Ha! How did you get rid of him?
Gigi: I don't want that snake in my garden. Or spiders.
Mom: Where did you put it?
Gigi: In time out.

Yup, my daughter put the devil in time out. Things should start looking up, now.

Monday, September 8, 2014

Only My Feet

I've just been blessed with the gift of a triduum of time away through the ACTS retreat at our parish. ACTS stands for Adoration-Community-Theology-Service. I was brought to the retreat through a complex alignment I didn't see coming. Hours before leaving for the retreat, Ben's doctor had shown me some tough love in getting me to accept that full time school was now too much for Ben and we made the difficult choice to reduce to half days of middle school to begin as soon as he was over his latest pneumonia and ear infection. I went into the retreat worried, reluctant to face emotion, burdened with impossible decisions, and sorrowful. Early in the retreat a word was placed on my heart and the word was joy. I was a far distance from joy.

Beginning with my first reconciliation at the age of 8, I've felt God stirring within my soul many times. I guess that's why though I've doubted religion here and there, I've never doubted God's existence. I cannot un-know Him. When I pay attention and feel His presence, I'd describe the feeling as a welling up of humility. God loves me! He's bothering to be with infinitesimal me in this moment and He's so much bigger than all the bad in the world. I often feel shaky and the emotion can bring up sorrow or guilt, forgiveness or gratitude, but it almost always leaves me in tears. Not sad tears necessarily, but the kind of tears that cannot be hidden. I often sense that He's asking me to hand something over to Him, but my grip on my sense of control, or unwillingness to follow, or self pity is tight and He has to keep asking. I spent a good deal of the past four days in that welled up place, hoping that if I allowed myself to be there long enough I'd find the courage to hand it over.

I am Loved

I don't want to reveal too much about the retreat itself, since I don't want to spoil the surprise for anyone called to go. But I have a few safe anecdotes to share. We had some free time to explore the grounds and I went straight to the labyrinth. I went in with one question and was determined to hear God's answer. "What is Your will for me?" Head down, watching my step, intent on deciphering His call, I was startled by the voice of a fellow retreatant, asking if the rock lined path was a maze. I chatted briefly, explaining there were no choices, it was one winding path to the middle and back again, mildly annoyed that the distraction was keeping me from focusing on potential divine revelation. She chatted more, unsure of whether to try it or find the walking path through the woods. I shrugged, pointed out the entrance, and repeated inwardly, "What is your will for me?" She commented it might be nice to stay here in the sunshine because the wooded path looked cold and dark, but after a few paces she turned back and headed for the trail. After she'd gone I realized I'd failed to hear His voice sent in human form. Stay in the sunshine. Stay in the light. I could choose the easy path in the dark, or walk the tedious rocky path in the light where I must watch every step. As I made that connection I spied a memorial rock on the ground engraved with the message, "Joy come round me." Labyrinths are designed so that just when one thinks they are nearing the end, the path juts back in the opposite direction and when finally reaching the summit, the trek is only half done. I'd missed an opportunity to let in joy and a new friend. I finished with a sigh, knowing I'd gone in with a question and come out with an answer. God's will is that I follow his path, stay in the light, and let the joy come round me. Then, I too, set off for the shaded walking trail through the woods. 

The facility where the retreat was held happens to be the same system that runs the hospital prominently featured in Ben's life story. There was a giant cross centrally located in the retreat chapel where we spent much reflection time. It's a cross I knew very well since the same cross is found in every room in the hospital. Over the last 12 years I have said countless fervent prayers beneath the crosses in those hospital rooms, in that place of physical healing. Now I found myself praying for the same cause beside the same cross in a place of spiritual healing. On the final morning before returning to my family, I sat before that cross and prayed a Divine Mercy chaplet with my new sisters. On the decade marked with the letters B-E-N-J-A-M-I-N, placed there very recently by my Godmother, God washed over me once more. I realized it was time I handed my worries for Ben over and as I did, all I felt was joy. No tears. That is mercy.

Saturday, August 30, 2014

Daily Bread

After his four month stint in the Show Me State, Grampa is back in Hawkeye Country and doing well. Though it was a stressful time, I'm thankful we had the opportunity to care for him and to share our home and table. The kids will remember making remote control airplanes, nose boops, and chess and Grampa earned some Cardinal fan cred.

Speaking of the Cardinals (who managed not to get swept by the Cubbies tonight, thank goodness), we've been to more games than ever before this season since I gave Jason a two ticket five game package for Christmas. Friends bought the same package next to us and we've really enjoyed the experience. The seats are way up at the top of the stadium, but right behind home plate.  We took Ben the weekend before his latest surgery.

Speaking of Ben, he began school only a week behind. But he's really been struggling to get through the school days due to fatigue and I'm back to not knowing what to do. I keep hoping he'll perk up, but I'm beginning to suspect that Ben's new normal includes being exhausted and overwhelmed most of the time. We won't know if the surgery went functionally well until the follow up in October since dissolvable protective gel was injected into the space in hopes of keeping everything in place. Ben claims his vertigo is better but he still frequently complains of headaches.

Alex's school year start has been great, as far as I know. He got glasses this summer. Turns out vision is a helpful tool for learning. The moment he put on his new specs he said, "It's like I'm living in Blue-Ray!" Kids today.

Time just keeps marching on and changing my babies into bigs. Gigi is signed up for her first dance lessons. There was something mother-daughter special about shopping for her leotard and shoes, that just doesn't equal the experience of trying on soccer cleats. She was very excited to show the boys her grace makers.

A Natural

Gigi: Is it time for dance class today? And don't say no!

Gigi: Will you play with me?
Mom: First I'm going to finally fix myself some lunch and take some medicine for my headache. I need to take care of Mommy.
Gigi: And your children.

Alex and Gigi imagining with medical equipment, of course. 

This Monarch Likes our Zinnia Experiment

Dreaming of Magic Carpet Rides, Perhaps

Gigi was playing with her princess dolls when I heard her trying to recite what I thought was the Lord's Prayer.

It was.

Saturday, August 23, 2014

One Decade at a Time

I am one lucky Goddaughter to have Godparents that actually make rosaries. I've always been well supplied in beautiful prayer beads and most have a story. I brought my collection of broken beads to them when we visited this summer in hopes of repair. One belonged to my late father, one was given to me by my parents for my first Eucharist, and one was particularly special.

I suffered a miscarriage when Ben was two years old. As part of the healing process, we attended a commendation ceremony offered by the Archdiocese and gave a name to our daughter. As we exited the church a woman came up to me and handed me a crystal blue rosary. In tears she said she wanted me to keep it for Ben, from her little boy to ours.

We always pray the rosary on car trips and this blue rosary has hung from the rear view mirror as a small way to include our heavenly daughter in family prayer. Ben missed many days of school last year due to illness and I was frequently called to come pick him up. One particular call stands out because when I arrived, Ben was crying and upset, frustrated with constantly feeling ill. Unsure of what to do to help I decided we'd go to adoration and look for guidance in God's presence. I handed Ben the blue rosary from the car and told him my plan. The chain broke in his hands and his tears came harder, apologizing for the destruction. When I reached for it to examine the damage, it was completely intact and I couldn't find where it had come apart.

I left this rosary with my aunt and uncle to check closely for damage and I wanted to know if keeping it in the car was making it brittle because it felt different in my hands. My aunt gave me a rope rosary to temporarily take its place. Today a package arrived with all my rosaries perfectly restored. There was a note from my aunt saying my uncle wanted to talk to me about the blue one. I called him up in gratitude and he asked if we used the blue one a lot and if I knew about well prayed rosaries turning to gold. I'd never heard of the phenomenon, but when I looked more carefully, the chain is now gold in color. I'm inclined to think it has more to do with tarnish than miracle, but it is a special one, and the story of the blue rosary just became a little more dear.

Along with my well loved beads, my Godparents included the gift of unsaid prayer. This is my new favorite:

Medjugorje medal included

Thank you, Paul & Laverne, for your witness, your love, and your generosity.

Addendum: When I thought about using the new rosary with each of our names on it as the new car rosary, I realized our unborn daughter would not be included. I just looked more closely at the Mary medallion where the chain divides and realized it is actually an image of St. Therese! The name we gave to our lost baby was Summer Theresa. My Godparents did not know this.

Friday, August 22, 2014


I haven't posted in over two weeks which is odd for me. Whether warranted or not, I feel that I'm in crisis mode due to swirls of personal, local, and international chaos. It has put me in mood to leave it all unwritten, but I'm pushing that mood aside when I should be sleeping.

We'll start with personal. Maybe it's the teacher in me, but the start of a new school year means renewal with fresh supplies, precise routines, and lofty goals of high achievement. Healthy lunches every day. Homework done and checked by eight. Papers in the not yet ripped folder pockets and no reason to visit the lost and found for at least a week. Ben having surgery instead of starting seventh grade has me thrown.

First Day of School

Ben's latest ear surgery has gone well and he's bouncing back very quickly, but I still wish we could have gotten this done a month ago. We'd hoped to get a cancellation but it never came, that is, until the morning he was scheduled and they asked if we could come an hour sooner.

Ready to go to the hospital, "Ever Bending, Never Breaking" and "Like a Boss."

The nurse that registered Ben looked up from the computer and queried, "Heart failure? Oh, you must be our miracle baby!" Twelve years later and his birth story lives on. Despite being nervous, Ben chose to go back to the OR fully lucid hoping for an easier wake up. He was not disappointed and aside from the cursing, thrashing, threatening adult in the bay beside him, Ben had a great recovery (Is it bad that I took that opportunity to tell him that guy must not have been as brave?)  I'd had a feeling of dread prior to this surgery, I think because there was a lot of unknown about how serious it might be. It's tough not to think too much about aggressive corrosive tumors near your child's brain. Ben received the sacrament of Anointing of the Sick the day before surgery and the experience blessed us both with a needed sense of peace. There's just something about this kid. God is in everyone, of course. But I can just find Him easier around Ben some days. Maybe Ben did see God on that Third of May, and that vision still resides within.

I saw this written on the hospital wall I've passed countless times. I never read it before. 

This is what happens when I write instead of sleep. Ahem. So the surgery that could have been super scary, was pretty light. There was not actually any more cholesteatoma deeper than what was seen by otoscope which was astonishing news. The surgeon was able to shore up some of the fixes he wasn't able to get to in the last surgery due to bleeding and cut away some adhesions and improved the ear drum which may help prevent further cholesteatoma growth. He also removed the prosthetic pieces that he suspected could be causing Ben's nausea. He said Ben should now be working with a 50 decibel hearing loss, but that he could one day have that surgically restored and hearing aids should make up the difference for now. Honestly, I don't care so much about the hearing. I just want him to feel good. The best news in all this is that Ben awoke the next morning in the PICU and said, "I'm not dizzy!" After at least eight months of misery, it appears Ben's vertigo is vertigone! He coined that phrase, by the way.

Ben has a follow up scheduled tomorrow  today and he'll hopefully be cleared for school soon. As usual he's having some post event respiratory struggles, but breathing treatments are doing the job and giving me a reason to be up at crazy hours. I'm not joining words together well at this point, but some that can do a fair job standing alone are: Gratitude. Relief. Love. Peace. Amen.

I don't have the stamina for my other thoughts, so those words can wait.

Wednesday, August 6, 2014


At the risk of sounding dramatic, this summer has been fraught with trauma and stress. It started with a heart attack and will end with surgery and there wasn't much good between. The heart attack crisis has been mostly resolved. Grampa moved into a short term rehab facility to finish up his six week course of IV antibiotics. He's almost done and has been cleared to drive. It's great to see him feeling much better.

I don't think I've mentioned the surgery before. Back in December Ben had a big surgery to his ear to remove a benign tumor called a cholesteatoma. It was benign in that it wasn't cancerous, but malicious in that it eroded much of the mechanics of his hearing. We were told there was a small chance the tumor could return and the only way to know would be through regular CAT scans. If you wish to learn more about this medical issue click here.

As it goes, six months later, the tumor has come back and will be removed the day before Ben was to start the seventh grade. Ben has been suffering from dizziness, nausea, and migraines since last November. First we surmised it was the pressure of the growth in his head, but it didn't go away with the removal, so we blamed the swelling. The day of his surgery he also developed a facial twitch that hasn't gone away, though it has faded. The new theory is that the prosthetic ear drum put in place in December has been pressing on nerves causing vertigo and the twitch. At least his migraines are managed. The ear drum's conduit will be removed this time in hopes of relieving the vertigo at the price of hearing in that ear. We're left now to hoping this surgery will improve his quality of life.

I can't express the helplessness I feel seeing him chronically miserable, especially since it has taken us so long to pin down a cause and I wasted some time thinking he just wanted to get out of going to school. He rarely complains aloud but his default position is in his bed reading his Kindle and it takes coaxing to get him to do the things he once enjoyed. Since birth, it has been fairly easy to distract Ben from sickness and pain. A sock on our hands in the ER, a book, a cartoon, or a joke had amazing anaesthetic power. Ben is now king at distracting himself. He escapes to complex story lines running through his mind in times of ache. So much of his summer has taken place in Benlandia. This distractibility makes it easy for us to think he's doing fine when he's not. I suppose that's a gift. I've noticed that friends now contain the antidote once found in my sock puppet. The transformation is astonishing when Ben has a pal over for awhile. Friends are the best medicine.

Ben's happy place

With all that's gone down this summer, I've been very grateful for the distraction of the 250 cake scavenger hunt. We're up to 235 as a group, and our family has seen 144 of those. It has forced us to find fun we wouldn't ordinarily have sought, taught us much about our home, and given us the catalyst to check out a cave and a winery for Jason's birthday. I could spend more time at wineries.

St Ferdinand's Shrine in Florissant

Lincoln-Douglas Square, Alton

Aerie's Winery in Grafton

Mount Pleasant Winery in Augusta

The View

Bet I know his wish