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.

Every Hair on Our Head

Agnes is in surgery.  Possibly for the next seven hours.  Seeing your little baby (or any one you love) being wheeled off is a new kind of ache.  Yet, she is in such good hands.  

Before I forget (which I'm sure I've already forgotten some of the details), I want to record where God has been in all of this.  Suffice it to say...He has been in every detail.

A month after Agnes was born, I received the sweetest email from a "stranger" who had read my blog post about Agnes...about how we didn't know until she was born that she came with some special needs.  She, too, had a baby girl a few days later with a similar situation...and unexpected diagnosis.  We were no longer strangers.

In fact, in the chain of events that lead to us taking Agnes to a care team in Denver, this new friend's daughter had an appointment the same day...and now, we communicate at least weekly!  The day I met her, I got an Instagram message from another "stranger" saying how thankful she was that we met...that my new Denver friend was one of her best friends.  Small world.  Little did I know at the time how small.

Fast forward to a week later and my cancer diagnosis.  Soon we would be heading to Houston (where we were originally planning to take Agnes for care) to undergo testing and develop a plan to attack this cancer.

Agnes and I were in Houston with my sister (until my husband could come trade places with her) because since I was already going, we thought we would get a third opinion from a neurosurgeon here on her spine.  While here, a college friend said I should go to Mass near the medical center with a priest she knew and loved.  We did.  And, we called an Uber to get a ride back to our hotel so that my sister could get ready to fly home.  I really wanted to tell the priest hello and that his friend suggested I go to Mass at his parish, but I didn't think I had time.  The line to speak to him was a bit long, and the Uber was on his way.

My sister insisted.  So, I went to the line and waited.  As I was waiting, someone tapped me on the shoulder saying, "Are you Britt?"  That person was the same sweet girl who had messaged me on Instagram saying how glad she was that I met one of her best friends in Denver.

She was also the sister-in-law of the wonderful priest, and before we knew it, we were going to their house for dinner the following Tuesday.  

At dinner with this amazing couple who so easily opened their hearts and home to our family, they mentioned that their parents/in-laws had a home they liked to use to help people and said we should get in touch.

My first thought was, "absolutely not!"  I never wanted to ask anyone to host me...and even if I could bring myself to ask, hosting my entire family would be insane.

A few days later, I received a call from the mother/mother-in-law.  She basically told me we would stay with them when we were in Houston (in a very loving way).  I told her I could never ask that of her, and her response was, "That's the beauty of it.  You didn't."  She had a bed for every one of us, and she said they were called to do so.  Then, as she was hanging up, she said, "How do you know (this particular family)?"  It was the family of one of my favorite priests back home...who also happened to be one of their son's best priest friends.

What is even neater is that none of us were "supposed" to be at that particular Mass.  Agnes fell asleep before the Mass we were planning to attend.  Our friends never attended that particular Mass time.  Yet, we were there, together.

And, now, here I sit a month later, having been driven to the hospital via our new family away from home.

Other things: when I found out the cancer trial I was a candidate for (which would have been a much shorter/less invasive plan as a whole) was no longer an option (and after I had gotten really excited about it), I took a walk.  On that walk ,in a pile of rocks, was a painted rock with the word, "trust."

At one point during my Houston stay, I didn't think I'd made it back in time for Genevieve and Lucy's birthdays.  Of course, so many sweet people were determined to make it special.  I did arrive home the afternoon of Gen's birthday.  But, I had one more oncology appointment the next day before going home home.

When we did, they had the cutest cakes, a house full of unicorn decorations, Chicago pizzas and so many extras from sweet friends.  After all of that, as we were getting ready for bed, Gen excitedly said, "Oh I can't wait for my birthday party!"  Confused, I told her we just had her birthday party. She immediately started bawling (Gen's style).  When I asked her what was wrong, she said, "It's not a party without a piñata."

Had I ordered a piñata?  No.  Did I tell her one was coming to make her stop crying?  Yes.  Was it a lie?  I thought so.

Until the mail came the next day.  A piñata!

Not knowing anything about this, a Florida friend had sent Genevieve a piñata of all things!

So, as Carter said when we found out about all of Agnes' needs, "We drink from the cup He gives us, and not a hair falls from our head that He doesn't know about."  He's right.  

In fact, not only does He care about our community, shelter, friendships, support and everything else we have been given...He cares about the piñatas in our life, too.