Thursday, September 24, 2015

Another Scar Down

 Ben is in the middle of another physical tornado and he's managed to remain in the eye. I'm in awe of his bravery and continued positive outlook and the fact that he's sitting up at the computer right now doing homework, less than 36 hours after having his ear cut open and his brain prodded. As a woman of faith, I attribute much of his fantastic outcome to an avalanche of prayers and spiritual healing that have come in many forms in the last few weeks. As a patient advocate, I credit the skilled hands of his medical team too. As a citizen, I thank the many hands of our community making light our work.

Let's review: Jason spontaneously took him out for a little pre-surgical spoiling at the ballpark. We both tend to lighten up on rules and regiments and budgetary restraints when we get into medical mode, as is evidenced by my grocery purchase of Lucky Charms cereal.

After a night of little sleep we cracked the dawn, packed up that prayer shawl, and got ready to wait.

Ben willingly went back with the surgical team on his own and fully lucid. We turned on the tv to watch the Pope's arrival to the White House while we paced. A friend from church showed up to wait and pray with us. The surgeon was surprised to see that what he thought was new cholesteatoma on the scans was actually scar tissue and fluid buildup. He didn't see any new masses forming. However, a previous mass had eroded the bone beside the brain and it had herniated into the mastoid space.  He was able to fashion a dam of sorts from cartilage to put it back into place and hopefully prevent further migration. It is our hope that we've pinned down the cause of Ben's nausea and dizziness and headaches with this action. 

As anticipated Ben was in a great deal of pain afterwards and the work began to keep his lungs clear, which always feels cruel. But Ben quickly turned the corner and began declining offers of pain relief and accepting bites of food.

Ben was released the next morning after the surgeon changed his bandages and checked on his work. Ben is still at serious risk of infection so we're being very vigilant about the lungs and signs of fever, but I can't stress enough my gratitude for the outcome. Ben will still require careful monitoring and scans to watch for further masses, but by retaining his ear canal, we aren't dealing with the decreased quality of life issues we were expecting. He'll have to stay home for at least a week and any visitors will be tossed out at the first sign of a sniffle but I feel so relieved and blessed that this hasn't gone differently. 

Monday, September 21, 2015

Ordinary Rules

 Gigi began Pre-K and she hasn't stopped reading, writing, and talking about boys since. She can frequently be found at the homework table coloring and practicing her letters. Most of our conversations begin with her asking me how to spell the word on her mind.

First Day of School

A Few Days Later

Still Going

Gigi: How do you spell stop?
Mom: S-
Gigi: How do you spell S, again?
Mom: Why are you spelling stop?
Gigi: Because those boys are making me a little aggravated. A little bit.

Gigi was dawdling when it was time to get in the car so she lost a token of screen time. Her dramatic vocal protest continued in the car, "I will NOT forgive you! I will NOT play with you EVER again and you can't be in my play ANY more."

I felt like arguing, but instead I turned on the radio to JoyFM and began singing along, " I need you, Lord I need you. Every hour I need you. My one defense, my righteousness, oh God how I need you."

Gigi got quiet and then said meekly, "I DO forgive you. This song kind of makes me feel a lot better. You can be in my play."

Thanks Lord, we needed You.

Mom: We are leaving soon and I want you to leave nicely when it's time.
                 No answer
Mom: Capito? (Italian for understand)
Gigi: Opposite of capito!

I'm so excited that our parish has begun a Level 1 Atrium with plans to expand. Atrium is a Montessori approach to cathechesis for children which focuses more on the spiritual and offers hands on experience with religious works. The children are immersed in reverence and mindfulness in a beautiful child centered space and it's stinking cute with all the tiny vestments and wee vessels. I want to go to Atrium!

Moving on to those boys...

The wait for surgery is almost over and Ben is looking forward to having that nauseating ache out of his head, but he'd prefer to skip that whole pain step. He received the sacrament of anointing of the sick after Mass yesterday and we were overwhelmed by all the smiling and supportive faces that came to witness and enjoin their prayers to ours. Ben was given a beautiful prayer shawl handmade by the pastoral care team and knitted with prayers. He was immediately visibly comforted by the gift and asked to bring it along to the hospital. I hope the prayers don't come out in the wash.

Therapeutic Tingles
 Thanks to brothers and semi-traditional household roles, mowing grass is something I have never done. Now Jason has taught Alex and it looks like I just might avoid this task for good. I promise to make the lemonade.

Catching a parade before the soccer game just like people
I also got to spend three time slots of joy with my friend, Ann visiting from Arizona this week. I wouldn't know Ann if it weren't for Ben and his health struggles. Though many miles and dare I say, years?! separate us, we have a kindred spirit, soulful kind of friendship that always lifts me up. I hope everyone has an Ann on their path where real life gets handled; guts, scars, awe, and all.

The picture below just makes me smile. This was taken before Ben left for his second cotillion. I still don't know much about this local tradition, but I'm all in favor of teaching manners, reading social cues, and Wobble. What strikes me is Ben's genuine excited smile and feeling like a regular guy with places to go. He's looking up at his dad sharing something new he learned. In this snapshot I can see three and thirty and thirteen all at once. It gives me hope.

And then he even changed his socks.

Wednesday, September 16, 2015

Ears and Eyes, Hearts and Minds

I've just been gifted with four incredible days of retreat with my sisters in Christ. I was able to serve on the ACTS team at our parish for the first time. I wrote about my experiences on retreat a year ago and found so much peace, healing, and joy in that time. I did not expect to be so blessed this year. I went in hoping to facilitate that opportunity for others, but I think I was even more richly transformed by this service. I found courage and an even deeper peace and healing than before. I was able to let the peace of Christ Jesus control my anxious heart, something that I have always found difficult. I asked the Holy Spirit to give me the courage to do my part to open the ears and hearts of our retreatants and he showed up in spades.

I should note I'm so appreciative of my husband for taking time off and filling in for me so that I could have that time away. Things went so smoothly and he even had to do dress clothing shopping for Ben beginning his cotillion season. When I came home he suggested I take some time for myself at least weekly then skedaddled to a friend's house for some respite of his own. Knowing he found the work hard oddly makes me feel appreciated too. I'm not so easily replaced.

Shopping. Check.

First Dance Class. Check. And Hair!

Preschool. Check. And Hair!

My mother attended the retreat which was an unexpected and wonderful turn of events. I think it was an incredible shared experience we will always carry forward. I feel like I'm gushing a bit, but I cannot say enough about the importance of taking time away from daily life, turning off the phone, ignoring the calendar and seeking peace in whatever flavor it comes. For me, it was time with God and a community of loving, strong, and soulful women and it tasted like chocolate.

We are still worried about Grandpa in an Iowa hospital, but he has taken some positive steps forward. His ventilator is gone and he is out of the ICU awake, talking, and getting out of bed. There is talk of moving him into a rehabilitation facility for further cardiac recovery very soon, maybe even today. Continued prayers are appreciated.

I'm thankful for the steady calm I'm feeling about Ben's surgery this coming Wednesday. I should go on retreat before every procedure! We feel loved and supported and prepared. Ben will receive the sacrament of Anointing of the Sick on Sunday and a dear friend gave us water from Lourdes, France to bless him with as well. In the midst of it all, we went to a High School night last evening and he's feeling excited about making big decisions and finding his next path.

Butterfly Blessings

There was a lot of talk of opening ears and eyes and hearts on this retreat, while Ben's hurting ear, and my hurting optic nerve and my Father-in-law's hurting heart also weighed on my mind. God's timing is perfect. Be open. Healing isn't always physical.

Wednesday, September 9, 2015

Variation on a Theme

We'd planned a visit to Jason's hometown over Labor Day after receiving an invite to a friend's wedding some months ago. A few days before we left we learned Jason's dad was not doing well and was in the hospital in heart failure, adding urgency to our visit. That Friday morning, Jason's brother called to relay that Dad had suffered a cardiac arrest but had been revived. He was now on a vent and sedated with no plans to try to awaken him for a few days. He was stable but critical.
We arrived at bedtime so I took the kids into the hotel and Jason headed for the hospital.
The kids and I watched the pope on TV while we did our bedtime routines. 20/20 had a special foretaste of Pope Francis's upcoming visit to the states. He was telecasting from the Vatican and speaking to individuals lifting them up. I was impressed that a major media outlet treated the office with great respect. They didn't appear to bait him or try to twist his words. 

Ben watched with me and was moved. He then began asking me questions about what it means to "offer it up." He wanted to know how to turn suffering into something good. He then shared with me an emotional part of his day at the 8th grade retreat that morning. While meditating during adoration he said he saw himself sitting in a hospital bed, though at the same time he was still at his pew with his friends around him. Then it was as if he was in the bed and looking at the crucifix on the hospital wall. He felt the IV in his arm and knew someone was holding his hand. He said he knew Jesus was with him. 
Next, at benediction, the priest had held up the host with his robes and the students had touched his robes so as to touch God by proxy, as the woman who reached out for Jesus' cloak for healing. Ben prayed his surgery would go well as he reached for the robe. The experience gave him a calm that remains today. Thank You God, for gifting this child with awareness of You. 

The next three days was a blur of balancing the needs of the kids and keeping vigil over Grampa. We weren’t comfortable having the kids see Grampa unconscious and tubed and I was leery to have Ben hanging out in hospitals where he could catch some tougher strains of illness pre-surgery. Grampa remained stable, but critical with some scares. 

Sunday morning we went to Mass at St. Patrick’s downtown and marveled at the timing of the Gospel story of healing and ears being opened. We stopped by a wedding reception open house for some old friends and then visited the hospital before taking the kids out for some distraction at an arcade.  Ben said, “Let’s come out of here with empty pockets and smiles on our faces.” Jason and his siblings spent some good time together at their father’s house treading lightly over laughter and weaving possible outcomes. Thank You God, for the comfort of Your words and the constancy of Your church. Thank You for friends and family. 

On the last day of our trip I packed up the room while Jason took the kids for a last swim before heading to say our good-byes at the hospital. Grampa now had pneumonia and attempts to wean support hadn’t gone well. The plan was to keep him comfortably sedated while treating pneumonia. We whispered our wishes and wondered if leaving was right. Thank You, God, for this time together. Your timing is perfect. 

Sunday, August 30, 2015

Deductible Shemuctible

No joke, I found myself in the Emergency Room the day after my last post. Nothing too traumatic, just an inflamed optic nerve with a side dish of migraine that had to be checked to rule out detached retina. I got to experience an ultrasound of my eye which was kinda cool and then a lot of eye poking which was not. I had a follow up a few days later that showed the optic nerve had calmed down and I passed a visual field test. Next I have to see a neurologist for the visual changes and migraines since I have that darn benign tumor in my pituitary I've been trying to wait out. I'm accepting local neurologist recommendations, btw, preferably someone handy with a scalpel. The timing of all this could be better, but I'm relieved I didn't end up with emergency retina surgery last weekend. Seriously, why can't we stay out of hospitals?

Ben's surgery has been scheduled for the middle of standardized testing week and the day before Jason is supposed to go on a spiritual retreat. It also happens to be St. Padre Pio's feast day. I spent much of today reading about him and I'm in awe of his story. I will be asking for his intercessions that day, for sure. Ben will be having a bronchoscopy while under anesthesia to check out his airway too, so we may as well throw in a request for no new whammies. I would love for Jason to still be able to make his retreat, but know that it will all be as it should. As my new friend, Pio always used to say, "Pray, Hope, and Don't Worry!"

Lest one think all we do around here is wait for reasons to see specialists, we've made a few end of summer memories that fall under the category of "way more fun than needles".

I took in some light hearted outdoor theater with my BFF.

Gigi crammed for Meet the Teacher Morning.

We tent camped.

In the family room. Because breathing is fun.

We had our last ice cream cone.

What kind of ice cream cone was that again??

We saw deer on bikes. Wait, I remember learning about this in grammar class. On bikes, we saw deer?

Jason proved he still knows the importance of woo.

Gigi discovered the joys of Parmesan....

and goat herding...

followed by honing her newest princess skill, Bird Command.

Good night, Gracie.

Friday, August 21, 2015


The transition from lazy summer days to the scheduled chaos of school zone is still loading. Because Ben has had a relatively healthy few months, we are attempting to have him stay a full school day this final year, but with a built in rest period in lieu of specials. We tracked down a recliner to stow in the resource room where he can rest his body, catch up on assignments, and even be depended upon by others in need. Have I mentioned his school is phenomenal?

Pre-K (almost), 5th, 8th

We made these plans knowing things would likely change. Towards the end of the summer, Ben's nausea, dizziness, facial twitching, and headaches returned. I made an appointment with the ENT because those symptoms were occurring the last time he had a tissue-eating-non-cancerous-tumor in his ear. A CAT scan was scheduled for the second day of school and we braced ourselves for a whammy.

The whammy came after the third day of school with news the cholesteatoma had returned for the third time and was now eroding the last defense before the brain. Surgery is scheduled for next month and we are tasked with choosing to a.) remove the tumor and close up the ear hoping it doesn't happen again. Or b.) remove everything in that space and leave the "door" open requiring regular office visits to manually maintain. Swimming would be risky and infections more likely but any future tumors could be removed without surgery and we'd know it was there without needing imaging, hopefully nipping it sooner. Lead me, Lord.

The upside is that as long as the mastoid bone is intact (we don't know that for sure, yet) he should still be able to hear with a hearing aid and the left ear is still functional (though it has been at risk for forming tumors in the past).

Ben took the news stoically and said something witty about the third time being charming. My priest says that attitude is Ben's sanctifying grace at work. I know he has graces aplenty, yet part of me wonders if he just wants to make this easier for us by not putting up a fight. After a hard night of self doubt I woke up this morning all ready to hold it together for the first all school Mass until the opening hymn was announced as, "All are Welcome." I was reminded of toddler Ben singing the same song to me when I wasn't behaving very welcoming. I spiritually lost it for a bit, then took a breath and let Jesus in. "Let go and feed my lamb," He said.

I'm trying. But you see, my lamb isn't swallowing so well right now, Lord. Sigh. I know what You meant.

Jason had a few unexpected hours off and we didn't want to sit out of this beautiful day feeling glum, so we packed up our girl and put our botanical garden membership to use.

When we got to the maze, Gigi stood above and guided me through with animal names for directions. She got me through and as I danced at the exit, I was reminded of the scripture from Matthew, "A little child shall lead them." The lion will lie down with the lamb and there will be peace in the end. Until that day, feed the sheep.

"Monkey! Now, Butterfly!"

Wednesday, August 19, 2015


When Dad's personal effects were being cleared from his office at work, a worn piece of paper was found taped to his computer monitor. It was a Bible verse, Phillipians 4:4-7 and has helped carry us through the gaping hole in our universe.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus. 

The following is reposted from August 2010 on the 5th Anniversary of my dad's passing.

Truck's Leaving

Wally 1943-2010

I have no words, yet feel compelled to write. My sister called with the news in the late evening of Thursday, August 19. My heart sank with the ring of the phone. My husband, Jason, had already gone to bed. I don't recall the exact words she used that ushered me into my new reality. There was an accident. It's Dad. He didn't make it. Something something... boat in Maine.

With heavy heart and disbelief I went to Jason. He'd awakened with the call. While I received the tragic news, "Jesus, remember me when you come into your kingdom," began playing on the ipod in our room.

My only thought at that moment was to get to my mother, alone two hours away, innocent and unaware of the policeman en route to her doorstep. Every other immediate family member was in a different state at the time of the accident and I was closest.

No one slept that first night. Jason, the boys and I arrived at 2 am to a house full of loving friends and neighbors comforting my mother. My siblings and their families arrived throughout the morning.  The next day was a blur of calls, sympathetic e-mails, thick tears tinged with half smiles or near laughter and an armada of food and visitors.

One year ago I struggled to accept my mother's mortality as she fought and won the battle against breast cancer.  I recall my parents returning from my mother's surgery to two perfect pink rose blooms in my mother's garden.  Yesterday the five of us went out to the cemetery to see about a  mausoleum site. When we returned a single pink perfect rose had bloomed. Where there were two, now there is one.

The single rose is the hardest part. It is the natural  order that parents die before their children. It is a loss we can  expect. We marry til death do us part but shove the potential from our  minds as we traverse through daily life. Death has parted my parents.  Though her children, family, and friends are there for her, there is no  substitute for my mom's best friend.

As my siblings shared our memories, we were struck by the realization that our father had sought each of us out earlier in the week to tell us we were so blessed.  It's easier to feel cursed in moments such as these, but when we look harder we can see the blessings. We're blessed to have each other. We're blessed to have no one to blame. We're blessed with our faith. We're blessed to have known him.

His imprint surrounds us. The book he was reading, his shoes by the door, his empty chair, the car retrieved from the airport containing his ball caps and glasses.  I try to etch his picture in my mind and the sound of his voice so that I won't forget.

Wally had a passion for his job. We knew he'd never really be able to retire and as it turns out he never had to. He adored his Purple Martins. None of us know how to make them return. He was crazy for his Cardinal's baseball. My son wants to know if we can still watch them play. Wally loved his family.  He was so pleased we'd be twenty at our reunion next year. Ten adults, ten kids. But as of the 19th, we'll be 19. That number is not so perfect.

Dad was a great Papa to his eight, going on ten, grandchildren. My siblings and I remember our father being a strict disciplinarian but by the time the first grandchild came along he was a big softy.  Every grandchild has been tickled with a, "Here comes the bumblebee out of the barn with a bag of honey under his arm."

My dad had his own funny little ways of speaking. He answered the phone with "Yellow?"  All flowers were hollyhocks. Casual shoes were clodhoppers. A gazebo or any outdoor seating area was a gazzabow.  When something wasn't right or someone crossed a line he'd remark, "throw the flag" or "that's a flag."

He loved the word "multisyllabic" and used it to describe anything that was complicated.  Other common phrases include, It'll put hair on your chest, Look both ways, Figure it out, Down the hatch, You'll wake the baby (when no baby was around), We don't need to call anybody (in the midst of a home project), and des colores. Whenever Dad was ready to leave he gave no warnings. He simply stated,  "Truck's leaving" and we'd scurry to comply. It's fitting that he left  us without warning. He wasn't one for long good-byes.

Wally was full of wisdom and was generous with advice. Many people have used the word mentor when describing him. We remember him telling us, "Success is having the problems you want,""That's a good problem to have," and, "Learn to love the things you have to do." He often remarked, "Now that's funny, I don't care who you are." "Everybody has a cross," is a phrase we all well know.  We have learned this week that Dad was emphatically wrong about this phrase, "You can count your true friends on one hand." Each of us have been enveloped in a flood of warmth and love from a sea of true friends. We are in awe of all the people who have told us how important he was to them even before the visitation has begun. I hope that he knows better now.

Paper Boy in Mourning