Us Versus Them

I got the COVID vaccine.

I spoke with doctors, priests, mentors, family and friends before doing so.  I weighed the risks.  I prayed for direction.  In the end, I got the vaccine.  I just finished my second round this week.

I've told few people.

And, now I feel as if I'm hiding something.  So, I no longer am.  I'm vaccinated.

But this post is about more than that.  It's about the implications that I am, or anyone else is, less for doing so.  Less pro-life.  Less Christian.  Less patriot.  Less (fill in the blank).

Which somehow also trickles down to being "less" because of the particular form of Mass we participate in.  Less because of the inclination to trust those in authority or with expertise on the matter at hand.  Less because of those we tend toward as mentors in spiritual formation.  Less because of our political inclinations.  Less because of the way we raise our children.  Less because of (you name any difference we have with those around us).

It has become us versus them.

I don't know when it happened.  I'm sure, as with most things, it happened slowly like the proverbial frog in the water.  But now it seems that there is no middle ground.  There is only the I'm-right-and-you're-wrong mentality.  And, what I've found that leads to is the sad state of complacency and indecency...in exercising an opinion without the necessary empathy and interest to understand the opposite...in reducing a person (or group of people) to a choice they make rather than seeking to understand the experiences that brought them to the choice.

Some may say it's the road to moral relativism, but's it's nothing of the sort.  Natural law is natural law.  Moral law is moral law.  There is right and there is wrong.  But, not everything is as clear as one imagines.  And, attaching one person's choice to a slew of "if this, then that" statements that eventually demonize said individual does nothing for the mission to love while calling each other to and leading each other closer to the ultimate Good.

Why do I feel like I'm hiding something by keeping my decision to get vaccinated close?  Because I know it will bother some.  I know it will immediately get thrown into a category of morally compromised decisions according to others.

Yet, I am a mother of eight, with a seriously compromised immune system, and I want to be as healthy as I can to care for those children who have been given to me for a time.  I'm a wife to one, and while he cares for me during the darkest moments of this disease, I don't want to add another possibly preventable health concern to his plate.  I'm a daughter of two whose world has been rocked by a diagnosis they would take from me in a heartbeat, and since I cannot change that, I'm doing all in my power to prevent another diagnosis.  I'm a friend to many whose current health cannot carry this virus, and while only God decides on our beginnings and endings, out of love, I want to do my part to protect those around me.

Am I making this decision out of a disregard for human life?  Absolutely not.  Will some think I am?  Of course they will.  I encourage those to read this when they do.  And when the question of my strength of faith arises, I'd suggest this.

Did I wrestle with this decision?  Yes.  Why?  Because I want to do the right thing.  And, I want to know why, but I haven't made the time until recently to do the research I know I needed to do.  Now, I have asked the questions.  I have prayed for guidance.  I have moved forward with a decision.

And while this virus, and subsequent vaccination, is a heavy, important topic...much more important is the state of our souls and the extent to which we love...those who make different choices, those whose viewpoints we have a difficult time understanding, those who oftentimes are the most difficult to love.  Those who we've termed "them" in the war against "us".

For in seeking to listen, if not truly understand, we grow closer to a point of realizing with all of our faults, mistakes and sins, we are still in this together.  We are all coming from different joys, pains, and crosses that shape the way we see things.  We are hoping to get to the same end.  And, while I don't believe that "the end justifies the means" I do believe that there is more than one way to get to a beautiful, truthful end...and in no way is that by demonizing one another.

Instead it's by showing truth through goodness, beauty, and ultimately love.

God forgive me when that hasn't been my means. 

Ask.Offer.Accept

O Jesus! meek and humble of heart, Hear me.

From the desire of being esteemed,

Deliver me, Jesus.

From the desire of being loved...

From the desire of being extolled ...

From the desire of being honored ...

From the desire of being praised ...

From the desire of being preferred to others...

From the desire of being consulted ...

From the desire of being approved ...

From the fear of being humiliated ...

From the fear of being despised...

From the fear of suffering rebukes ...

From the fear of being calumniated ...

From the fear of being forgotten ...

From the fear of being ridiculed ...

From the fear of being wronged ...

From the fear of being suspected ...

That others may be loved more than I,

Jesus, grant me the grace to desire it.

That others may be esteemed more than I ...

That, in the opinion of the world,
others may increase and I may decrease ...
That others may be chosen and I set aside ...
That others may be praised and I unnoticed ...
That others may be preferred to me in everything...

That others may become holier than I, provided that I may become as holy as I should…

The Litany of Humility.  It's the prayer that is on my bathroom mirror, with the idea that I'll pray it daily.  But it's difficult for me to do so.  In praying it, I realize just how attached I am to the things of this world and how far I am from the meekness I need.  But, I continue to pray.

And, in doing so, I beg God to break me...to use me for His purpose...and to forge me in a way that I prefer Him to everything, because on my own, I don't.  I put my stock in people.  I idolize my role as a mother.  I crave control.  I don't want to be weak.  And, I care what others' think.

Earlier this year a friendship went awry.  It affected me more deeply than it maybe should have.  Then, my sister lost her baby boy, Jack, and if I'm being honest, it was maybe one of the most difficult, heartbreaking situations I had experienced (sounds selfish, as I know it was nothing compared to their pain)...the ache and pain for my sister and brother-in-law, coupled with the helplessness I felt, was heavy.  

Soon after, COVID hit, and with that a divisiveness in our Church that was the very opposite of what was needed.  Coupled with a nine year broken relationship with a family member, I sought spiritual direction from a priest, hoping to put into place these feelings I knew I should not have and to learn to let go in order to move forward.

Instead, the meeting with the priest was anything but that.  It was a meeting that never should have happened, with words spoken that couldn't be retrieved, and I left thinking, "I've lost my source of refuge." Coming to the Church for solace in times of pain and confusion no longer seemed possible.  

In essence, it wasn't the Church.  It was a priest who I had made too much of an idol in my life.  And, through the early months of 2020, I learned that I sought refuge anywhere but where I needed to.  I wanted to run to my sister with every concern, or to fall at the feet of my husband in moments of loss.  I wanted my mom to know everything going on in my life in order to help me sort through.  None of those being bad things in and of themselves.  But, what another priest so eloquently stated was that there was one thing I was missing.  One major thing.  Allowing myself to be loved by the Father.

To do nothing, to just be.  To sit still and let Him love me.  And, if I was able to rest in that, it would no longer matter if that family member loved me, or if that priest was a source of strength, or if anything else fell apart.  Because...I would have all I needed.  His love.

So it began...God's prep work for the remainder of the year (or more!).

I began to beg for the ability to surrender - to truly let go of the pains and hurts I had held inside for so long, and to release the idols I had created for myself.

Then August came.

Agnes's birth changed me.  In some ways, it was as I expected.  I would find myself mentally saying, "If I can only get through (insert some aspect of her health journey), all will be well."  Or if I can get to this particular appointment or surgery, then, I can catch my breath.  But, it seemed just as I put those stipulations on each individual situation, plans would change.  Appointments were pushed out.  Snowstorms almost kept us from getting to the doctors.  Doors would close (or in some cases, never fully open).  Yet, if I took the time to sit with it all and look back, I could see what we were being prepared for and His hand in it all.  He was helping me let go of control.  Very slowly.

All the while, in the depths of my being, I thought, "Maybe having a sick child will bring my family member around."  Maybe that's the miracle I was praying for.

In the middle of October, we got news that we didn't expect.  Agnes's scans were worse than anyone thought.  We went from wondering when her spine would be de-tethered to asking if it would ever happen.  Each doctor whose opinion we sought said that there was a very high likelihood that her spinal cord would not be un-tethered, and regardless there would be significant neurological risks involved.

I knew I had to let go and trust.

A week later, letting go was taken up a notch.  I received a phone call that the lump in my breast I was sure was just a clogged duct was, in fact, cancer.  And, life would never be the same.

Suddenly, Agnes's possible surgery date became more critical, as I wanted to be there for it, and I knew my treatments would soon take over our lives.  What in the world would we do?

Luckily, He had been preparing us for such a time as this.  He had slowly helped me realize that I had nothing without Him.  And, my worries and anxieties were getting me nowhere.

So, I went back to my litany and remembered that I begged for this...begged to be broken and made new in Him.  Begged to only need His love.  Begged to not feel so much at times.  And, begged to be a saint.

And, while I'm so very far from being a saint, what I do know is this...

...that family member came around...apologizing for the years of pain.

...the motherhood that I based my worth on will likely end with Agnes (not saying I'll no longer be a mother, but that the desire to have more children will likely not come to fruition).

...the vanity I wrestle with will be chipped away piece by piece through this cancer.

...and that need for control...well, it's a tough one, but it's slowly being taken, too.

Miracles abound in these dark times.  Maybe not the ones you envision.  But, it just takes stopping for a bit to see them...in mended relationships, in a diagnosis that consequently allows you to find the world's best doctor for your baby girl, in having things taken from you that in essence will make you more whole from the inside out.

So, as I sob into this keyboard as my baby girl is eleven hours away undergoing her second (and unexpected!) extremely intense surgery in the span of a week, pushing back her return to a date likely after Christmas, and wresting with the affects of chemo, I rejoice.

Not in a superficial way.  In a way of truly letting go and letting Him lead me.  In a true, "Thank you Jesus" kind of way, because I've never felt more loved and at peace in my life.

I have asked for it.  Now I offer it.  And, finally I accept what comes.

Jesus, I trust in you.

Man, That Was Rough

 

On August 14th, we found out Agnes had a tethered spinal cord.  At that time, I only knew one other momma who had a baby with a tethered cord.  She was a friend I had met only 18 months before, and we had talked at length about her precious daughter and her surgery.  Thank you, God.

In Denver, exactly two months later, as we were looking at the MRI scans from her spine, with wide eyes the radiologist said, "Be sure and ask the neurosurgeons the 'right' questions."  What were the right questions?  "Ask if she will walk," she replied.

If she will walk?!

We met with the neurosurgeon an hour or so later.  He spent some time with the scans and then said it was one of the most complicated cases he had ever seen.  He explained that the fatty tissue that spinal cords can be tethered to (a normal spinal cord floats free inside the spinal canal.  One that is tethered is attached somewhere.) called a lipoma was everywhere.  Instead of being contained like most lipomas were, her's was not.  In fact, it had punctured the dura and was both in front and behind the spinal cord and covering the sacrum.  

He said she may walk.  But, he was almost positive he would never be able to fully de-tether her spinal cord.  It was too complex, and with complex cases, often greater neurological damage can happen with surgery.  But waiting means watching for symptoms (like loss of bladder and bowel control), and when the symptoms arrive, the nerve damage has been done and is irreversible.  So, what does one do?

Our first doctor wanted to proceed with surgery at the beginning of 2021.

My pediatrician wanted a second opinion.  I didn't think we had much time to wait.

Why?  Well, based on the scans and where she was tethered (the lowest possible spot in the sacrum) plus a prominent syrinx on the cord, she shouldn't have been able to move her feet and toes.  Yet, she was.  I didn't want to lose that.

So, instead of taking her to another doctor, we went with an online opinion...paying a service to gather all of her images and reports and asking one of the top pediatric neurosurgeons in the nation to give us an opinion.  The process was to take three weeks.  I had an opinion in five days.  Thank you God.

The opinion went something like this: 

First, it is important to stress that Agnes has a very rare condition. Spinal cord lipomas, themselves, are relatively rare. But Agnes has a constellation of abnormalities that put her into the diagnostic category of LUMBAR (also called PELVIS) syndrome. These include her extensive hemangiomas with ulcerations, anal/urogenital anomalies, sacral dysgenesis, and intraspinal lipoma. In regard to the lipoma, specifically, this is also of a more rare type that could probably fit the recent classification known as a "chaotic" lipoma. The lipoma surrounds the lower end of the spinal cord, including an extension anteriorly (towards the front). The nerve roots are mixed into the lipoma, and it would be very difficult to achieve either a significant resection of the lipoma or a successful untethering of the spinal cord without causing neurologic harm.

It went on to say that sometimes these children can have an intraspinal hemangioma that can be easily missed without a contrast enhanced MRI - if those are cut into, it isn't good.  Like my pediatrician said at her birth, if cut, sometimes the bleeding cannot be stopped.

Then, I was so incredibly thankful for the second opinion, as I hadn't thought of doing more damage with surgery - only the potential damage that could come with lack of surgery.  Basically there was no clear option.  Either way there were many risks.

So, we toyed with the idea of a third opinion.  At first I didn't want to wait to get one.  But, the Wednesday after the second opinion, I received word of my cancer and knew I would be traveling to Houston for testing and a plan.  So, as I was researching pediatric neurosurgeons in Houston, a friend mentioned that her friend was a neurosurgeon and might have an opinion as to who to see.  He did.  A very emphatic one.  If he had a child anywhere in the world who needed to be seen by a neurosurgeon, he would strongly recommend Dr. David Sandberg.

My friend looked him up.  We found his email address, and I emailed him, detailing the situation, that evening.  Before I woke up the next morning, I had an email from him saying he would like to see her.  He reiterated there were considerable risks with postponing or proceeding with surgery, but in seeing her, he could provide direction.  He had appointments set up with himself and other members of his team while we were in Houston.

At the appointment, he took a look at her scans, assessed her, and then gave me the varying medical opinions.  After all of that, he said, "If she were my daughter, we would do the surgery this Friday."  Yet, insurance would take longer.  So, we tentatively set a surgery date for December 4th.  The then hugged me and said, "I'll take care of your baby girl." At which point I could no longer keep from crying.

We had a decision to make, and it needed to be made quickly.

Whether or not this is accurate, this was the decision in my mind: 

1.  Wait on surgery and risk losing her bowel and bladder control, and possibly feeling in her lower extremities BUT possibly save her life by not cutting into a hemangioma we couldn't see.

OR 

2. Proceed with surgery in order to prevent any more neurological damage YET risk bleeding out.  In both decisions, we knew there would be damage one way or another because no one thought she could be fully de-tethered.  

Basically, damage would come either way.

We decided to proceed and trust God via the surgeon's hands.

I was able to hold off on chemo in order to at least be there for the day of surgery, so we made plans.  If I thought too much about it, which I did, my heart ached...begging God to not "take" our baby girl.

We flew into Houston the day before surgery, had her emergency confirmation via a beautiful, holy priest, and finally, the day of surgery arrived.   Before surgery, the neurosurgeon came to speak to us.  Jeremy prayed.  And, they wheeled her away promising text updates.  When I received the one an hour into surgery that said, "surgery is going well" I knew she was okay.  At that point I didn't care if they saw that no de-tethering could be done.  At least they didn't cut into a hidden hemangioma.

Five hours in we received a text saying surgery was nearing the end and closure would take two hours.

Around the two hour mark, we saw her neurosurgeon walking toward where we were sitting, beaming (we could see it in his eyes, underneath the mask.  He said, "I'm so, so happy!  We got her fully de-tethered - let's find a room to talk."  Praise God!!

We got into a room, he took a seat, dropped his shoulders and said, "Man, that was rough.  But we did it."  He went on to explain again what a complicated case she was.  Once part of the lipoma was removed and the cord de-tethered (he set up sensors over her lower body to monitor nerve function before cutting anything), he discovered that not only was the lipoma puncturing the dura, but that she was actually missing a major piece of dura, bone and muscle.  She had/has a type of Spina Bifida.  So, closure of that "hole" would be difficult.

To repair the missing dura, he used a bovine pericardium.  Then, he dissected nearby muscles to cover the opening and sutured her up.

It all took approximately seven hours.

But it happened.  Miraculously (I truly believe), she was fully de-tethered without any of the three incredible neurosurgeons thinking that was possible.  On top of that, we see no signs of neurological damage from the surgery right now.  And...she made it through surgery.

Early on, no one thought she should have the lower body function that she did based on the scans.  But she does. She wasn't supposed to be able to be de-tethered.  But she was.

You see, people all over the world were praying for our girl every minute of that day and more.  Rosaries were prayed, holy hours made, sufferings offered, prayers said, fasts made and intercessions of saints begged for on behalf of our Agnes.

Yes it was rough.  Yes it was one of the most complex cases seen by these wonderful men.  But, each one played a part in getting us to Houston, right into the hands of one of the most humble, capable, compassion neurosurgeons I now now.

He did it.  He took care of our baby girl.

And so did you.