Two Valium and a Swig of Wine-because sometimes deep breaths are just not enough.

It has been that kind of a week month YEAR. Life continues to happen at a pace that has me barely keeping my head above water. I often feel like it’s a dance around the land mines. All day. Every day. Mostly I make it.

Tuesday I went to a high end NYC orthopedic hospital to continue the journey to diagnose the foot injury from hell. I taught my 27 fully remote 4th graders until 11:30 and took the afternoon off. I traveled in for my diagnostic nerve block. If this nerve block eliminated my foot pain for 6 hours, we would be closer to eliminating it forever. At least in theory. (Spoiler alert- NOPE, that wasn’t it.)

I arrived home from the procedure at 3:20 with instructions to log my pain hourly until 8:30. I was also to walk several miles during that window.

Except, April, our sweet as anything oldest girl hadn’t been feeling too good in the morning. Food had been tough for a few days, but normally I could cajole it into her. Not so much that morning. So, I wasn’t messing around and I opened a can of chicken salad from Costco. The smell would have had her jumping in place. Except I had to bring it to her. She took a bite or two and turned away.

I called the vet, pleased that our favorite was on call. The description of “distended abdomen” prompted “bring her in now.” He knew April well as he had set us up for her surgery just this past March. I paced the parking lot in between his calls.

“I’m worried. Her belly is hard. I am afraid it’s a tumor, but I want to be sure.”

“Yes, you can take x-rays.”

More steps on a foot that was anything BUT numb.

“It’s not good news. I see a large mass, possibly connected to her spleen that seems to have burst. Her abdomen is full of fluid. There is not much we can do except keep her comfortable.”

My head. My heart. My April.

April was the MOST GENTLE girl.

Two hours later she passed peacefully in my arms.

I collected her leash and collar, and whatever resolve I could muster.

That was fast. They all hurt. This one had hurt coupled right alongside shock.

April, my girl. She was by my side during my foot injury and in my 4th grade “classroom” every day this year. April, who saved Lucky who unraveled after the sudden loss of her companion Allie a few years back. April who took to Jax immediately. April who joined us through a bizarre adoption on a January Tuesday in 2015, had quickly left on a May Tuesday in 2021.

I was home barely long enough to put her leash down before I had my sneakers on to torture myself through the approved number of steps to complete the failing foot experiment. No time to pause. Game face.

I asked why it feels like we are living life on the Indy 500. No one had a straight answer. Clearly we are traveling above all posted speed limits with poor safety restraints.

Cowden’s has been largely minding it’s business for now, and after some sloppy surveillance, with covid seeming to be in retreat, we are getting caught up with regular screening.

And, with every appointment comes the question of how they will monitor Meghan while she is in college. We are trying to make real plans to stay on top of things, because Cowdens doesn’t take vacations. I believe it takes naps. But, not extended vacations. And college. Yep. Sneaking right up on us.

The psoriasis in my ears isn’t linked to Cowden’s. I don’t think. But it does add some more doctors to a very full plan. Plus, it’s itchy. And gross. BLAH!

Senior year? Nah. Not really.

Meghan will be confirmed in the ELCA Church in Plainview where my brother-in-law is the minister this coming Sunday. That is a happy day, a long time coming.

They promise me graduation will be some time late June. I’ll take it as it comes.

For now, the usually low maintenance medical one in our house is looking at oral surgery for a raging infection in his mouth. This following 5 days inpatient with Covid in March and he’s becoming a contender for appointments of his own.

“I’ve tried to take things one day at a time, but lately several days have attacked me at once!” was a sign that hung in my parents house for many meaningful years.

This year has been unlike any other with its own set of unique challenges. Yet, I don’t remember the last time it was “calm.” You probably don’t either.

Today I finished school on time. I am set up for Monday. I haven’t had many weekends this year. Usually during a school year this feeling of being settled in comes around Halloween. We’ve got 5 weeks left.

Today I went to the cemetery to clean up my Dad’s grave. It needed a little TLC. I swung by my grandparents at another cemetery and thought about how much I miss them all. Time keeps moving.

Joy. Sadness. Laughter. Pain. Chaos. WIns and Losses.

Ferris Beuller’s Day Off 1986

And that my friends, is a little tiny, carefully edited piece of how the title came to be what it was.

Hang in there, all of you.

We’ll be here

#beatingcowdens

We also have wine. In case you come by!

“Tell Me All Your Thoughts on God…”

lutheran church, sydney
lutheran church, sydney (Photo credit: Wikipedia)

 

The line rings in my head.  The internet gives me the artist’s name as “Dishwalla.”  The song doesn’t make a whole lot of sense to me, but then again the whole religion thing can be very confusing.

I have a belief in God, and faith that there is a higher power running the show here.  In many ways that confidence keeps me sane.  I mean, what would be the purpose of it all?

Don’t get me wrong, I don’t believe that we are selected to suffer.  Not with cancer, tumors, genetic disorders, or anything of the sort.  I do however believe that God can give purpose and meaning to our lives.  If we seek it, we get confidence to endure the tough times, and purpose.  A “share your experiences,” be helpful in every way you can, “pay it forward” kind of purpose.

What I haven’t sorted out, even after all these years, is well, what are the rules?

I mean, I was raised Lutheran.  I was baptized, confirmed, married, and baptized my daughter in the same church.  I spent my youth in that church.  Survived high school with close friends there, and always enjoyed the connection with the people.  I believe in the theology I was raised with, and I love the people I worshipped with for so long.  But I no longer believe in that church.

The minister has been there for almost 2 years.  Long enough to know the people in the congregation he serves.  And yet, I have gone through one of the most emotionally tumultuous years of my life and he has never extended a hand.  We had a long talk about it.  It yielded nothing.  He doesn’t care.  So, I haven’t been to worship there for months.  I would be lying if I said it didn’t hurt me.  It pains me deeply.  But to me worship has to be about God, and it has to be led by people of God. 

See, to me it doesn’t matter if you are catholic, Lutheran, or any other of the million religions out there.  I believe for the most part we all serve the same God.  What matters to me are the underlying values that go with being a person of faith.

Are you kind to others?  Are you tolerant, and understanding of differences?  Do you judge others, or do you leave the judging to God?  Do you extend a hand to a friend in need?  Do you lend an ear when someone needs to talk?  Do you hug your loved ones?  Do you value, truly value the gifts of your family, friends, and those you are yet to meet?

Those are the questions I ask myself as I interact with people each day.  And I ask those questions of ME, not them.  It is my role to be there, to be a person of faith, to share my love for others.  I don’t think it has as much to do with what building you walk into, as it does with how you live your life.

My brother-in-law is a Lutheran minister.  And, while I have at times not always agreed with him on everything (who does?)  he models what a Christian leader should be.  He has been there for me, as I try to sort out the many thoughts in my head, and his words have provided me some clarity on some tough issues.

So, I know I guess, what I need.  Now the question is where to find it?  I made a promise when I had my daughter baptized that I would teach her.  I do, but I would like so much to have a “home” base where she can be comfortable again.  This is all so confusing to her, and yet even as I watch, her faith grows.

We tried another Lutheran church.  I am just not feeling it.  We are floating right now – seeking.  But God has a plan.  Of this I am sure.

You see I am confident that the same God who sent the angels to watch over my daughter and I.  The one who blessed us with this Cowden’s Syndrome diagnosis (yes, you read “blessed” because as I see it, if she had not ever been diagnosed I would have died of the breast cancer that was hiding inside of me,) will stick by us, no matter where we travel.

I will continue to do my best to live the life of a woman of faith.  I previously sharply defined myself as Lutheran.  Now, maybe Christian is just a better term.

Forgive my ramblings, and I know this is a touchy topic.  But if you are reading this – drop a comment.  For lack of a better phrase,

“Tell Me All Your Thoughts on God…”  I really want to hear them.

Stained glass at St John the Baptist's Anglica...
Stained glass at St John the Baptist’s Anglican Church http://www.stjohnsashfield.org.au, Ashfield, New South Wales. Illustrates Jesus’ description of himself “I am the Good Shepherd” (from the Gospel of John, chapter 10, verse 11). This version of the image shows the detail of his face. The memorial window is also captioned: “To the Glory of God and in Loving Memory of William Wright. Died 6th November, 1932. Aged 70 Yrs.” (Photo credit: Wikipedia)