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.

Life Itself

I just watched that movie.  Sitting here in my hotel room, attached to MD Anderson, alone.  And, while I wouldn't recommend that movie to just anyone without strong caveats,  strong caveats, it has a profound message, and one which deepens one's empathy.  And, in that setting, I write.

So, I have to back up.  To a month ago.  To this...

...sitting for family photos knowing I had a mammogram in two days that very few knew about.  Knowing that this might be our last "normal" photo for awhile.

I didn't want to believe the lump I noticed a few months before would be a problem.  The lump that since Agnes' birth I had forgotten about.  The one which I was reminded of with a phone call from my grandmother just a week or so before this.

My granddad (who had suffered greatly from a stroke almost two years before), woke up angry with my grandmother.  Apparently he believed I had called him in the night to tell him something was wrong.  Even after texting that I was fine, he wasn't convinced.  So, Jeremy stayed home with everyone but Agnes, and I drove out with her to see him.  When I arrived, he looked at my grandmother and said, "See!  She did call."  I tried to convince him otherwise without any success, and he said, "You said something was wrong, and you had something to show me."  So I introduced him to Agnes, and said I was fine.

But, that night, I remembered the lump I felt months before.

And, I got in touch with my OBGYN the next day to schedule a mammogram for after we returned from Agnes' appointments in Denver the next week.

I didn't tell anyone (well, except for my husband, mom, sister and a couple friends), because part of me was sure I had just made something out of nothing...like a clogged milk duct.  And, another part didn't want anyone to worry until they had a reason to worry.  But, when I told my mom a couple days before the appointment, she was determined to come with me (or at least drive me there).

When at the appointment they "saw something suspicious," part of me just knew.  They biopsied two sites and told me that it could be 200 other things but that they needed to rule out the one "bad" thing.  I got back in the car with my mom, and all I could think was, "Dear God please don't let my kids grow up without a mom."  I didn't want to start thinking of all of the what ifs, but I was somewhat worried, and I knew those I told were, too.

That night as I laid in bed thinking of the year we had had, I so vividly was reminded of Jesus being fully man and thus knowing the hurt of hard times, yet with He and His momma, part of me thought, "Yes, you became like us to know us and to feel everything with us - to be fully human - yet You never lost your mom."  

Two days later, as I was washing dishes after lunch, I had a call on my cell from an unknown number.  I picked it up, and after the lady on the other end asked me how my biopsied sites were doing, she asked if I "had a minute."  For the record, I'm no longer answering yes to that question ;)

I sat on my bed, grabbed a pen and opened up the nearest thing to me (a book called He and I), and began to write down everything she said.  It was a blur, but I came away knowing I had Invasive Ductal Carcinoma, Grade 3, with a 3.5 cm mass and at least one affected lymph node.  I would wait five more days to hear reports on the staging and receptor status.

I walked out of my room, made eye contact with Jeremy, and he followed me out our back door to sit on the steps, take a deep breath, cry and decide what to do next.  I had cancer.

Cancer.

I knew I needed to call my mom and sister, then one of my best childhood friends who had just been through a cancer diagnosis and treatment, and finally send a mass message to my friends and family who had no clue what was coming.

In the meantime, Jeremy called his parents and told our kids...the kids who haven't seen much death, but that which they have has almost always been tied to cancer.

After all of the communication, and the loving on my babies, I went to talk to my parents.  There is not much worse than seeing those you love most suffer...yet seeing them helplessly hurt for you, I've discovered, ranks right up there with it.

I came home to Jeremy driving his truck, with the kids behind in all of their run down, battery-operated vehicles...chained together, pulled by Dad...offering me what they termed, "The Love Parade."

I made the corner after watching their tear-stained faces wanting to lift my spirits and sobbed like I never have before.

And after that, I went back to those dishes.

Because what does one do after receiving a cancer diagnosis, with 8 sets of little eyes watching?

Only the very next thing that needs to be done.  Life itself.

On the Day She Turned Two Months

 

She had her first out-patient procedure.

We are here in Denver as I type this post, and she's under anesthesia. This morning began a series of things in a search for more answers and a plan to proceed.

Originally, doctors were going to remove a skin tag in her diaper area.  However, in thinking more about it, they decided to wait.  Based on its size and the unknown intricacies of her vascular malformation at this point, they didn't want to risk the bleeding at this point.

Also, we have seen a bit of oozing out of her belly button, so they have ordered a renal ultrasound to rule out a couple of things with that.

They have completed the vaginal and rectal exploration, determining surgery is not necessary in either place - praise the Lord!  And, she's currently having an MRI of her abdomen, pelvis, and spine - as well as an MRA of her abdomen and pelvis.  All of that imaging will help us see exactly where the spinal cord is tethered, how deep and intricate the vascular malformation is, and if there are any other issues that we might not currently be aware of.  

So, we wait.

In our two months of waiting and finding answers, of wondering what time will bring and of trying new things to make her more comfortable, I have learned a lot.  And while our cross is not someone else's, and knowing there will always be someone with a much heavier cross, God has revealed so much.

I've learned...

...there is still so much goodness and beauty to be found...even though her body is broken in ways, her soul is whole, and she brings us so much joy.

...when people offer to help, it's important I let them, as much I may feel guilty I am not able to help them right away in return.

...that Jeremy and my relationship has never been as important.

...there are days when I basically seem to have a good handle on things and days that hit me out of the blue to remind me life is peaks and valleys.

...sometimes it feels like I can't possibly think of anything else.

...health issues in one child can cause me to feel like I can't find a good balance in taking care of the noticeably sick one while also meeting the needs of the others.

...help comes in so many forms: meals, prayers, texts, calls, caring for kids, sitting and visiting, or even caring for your helpers.  But, it's important to let others help in the way they feel called (have I mentioned I struggle with this, hehe?!). 

...a million cares and concerns can be eased with the weight of a sweet baby on my shoulder.

...we are never alone.

...God prepares us for these moments years before we face them and He gives us the grace necessary for the moment (maybe not the year, or the day, or even the hour to come)...but the moment He has covered.

...miracles and affirmations aren't always what we envision, but if our eyes are open, they are all around.

More than anything, I've learned this...

...it is important to reach out.  

I've spent my life not knowing exactly what to say.  I've "put myself in someone's position" and convinced myself they want to be left alone or not bothered.  I've never been able to "understand what he/she was going through."  And so I haven't sent the text.  I haven't made the call.  I haven't popped a note in the mail to let someone know simply that I care.  I haven't stopped by to give a hug.  And, I've realized now...it doesn't matter what you say (by and large).  It doesn't matter how you show your love.  It doesn't matter if you were "never that close".  There is nothing too small.  Reach out.

Say something.

I have learned that so beautifully in the last nine weeks, and the only way I can describe it is humbling.  To feel encapsulated by prayer and love is indescribable.  I sit here and think, "How will we ever return all of this love?"

But, I know this.  Our strength has come from the prayers of hundreds/thousands of people...many who we don't know.  When people say, "I don't know how you are doing this."  I do.  Because of you.  God through you.  

Thank you.

(a few days later...)

She came out of anesthesia like a champ.  She was downing the sugar water and "talking" to anyone who came to her bedside.  

The next day in our meeting with dermatology we learned there is not much more we can do for her ulcers.  We are doing the best we can, and they may heal or we may struggle with them for some time.  Only time will tell.

The following day was full of appointments to discuss results.  

We learned that her vascular malformation at this point does not appear to be very deep...a huge answer to prayer!  There was a mass on the scan that they thought was worth doing bloodwork on - it came back clear, praise God!  Her kidneys also looked great!

The spine was a different story.  Her sacrum is very "messed up" and her spinal cord tether is one of the most complicated cases they've ever seen.  The neurosurgeon is unsure if he will be able to de-tether it, but he will try!  It will likely pose problems with bowel and bladder control as well as mobility.  

But again, we wait, and we pray.  And we do the very best we can with God's grace moment by moment.  

And we ask God for healing, because miracles do happen.

I Didn't Want a Child with Special Needs

 

I was afraid.  Always.  With every new pregnancy, there would be moments in that first trimester that I would worry myself sick about the possibility of something being "wrong" with the baby.*

*Before I go any further, I am not well-versed in this nomenclature, and I'm sure I'll say the wrong thing unknowingly, but I never mean to offend.

I would anxiously await the genetic testing or anatomy scan and breathe a huge sign of relief when everything came back clear.  Although I know God doesn't work this way, I would think to myself, "We've had four (or five or six) healthy babies...when will my luck run out?

Typing all of this out humiliates me.  It wasn't that I didn't love those around me with special needs.  It was that I didn't think I could handle it.  It was fine for my neighbor, or that beautiful woman of faith who had a special needs child (or five!), but I wasn't that strong.

Then, we found out at twenty-three weeks that Agnes had a two-vessel cord...which meant next to nothing.  She could have health issues, or she could be completely fine.  Since her genetic testing was normal, I didn't give it much more thought.  She was "good."

Then the nursery nurse's words, "Umm, just so you're not alarmed when you change her, she doesn't look quite normal...and she has a big bruise down her leg."

Needless to say, a million questions ran through my mind -- I hadn't even been able to completely see her as I was hemorrhaging.  Would we be able to announce we really had an Agnes?  Was she okay?  What about the bruising?

As we learned more those two days, and the doctors threw out the name of a syndrome to attach to her health issues, the questions and unknowns weighed heavily on us.  What would she go through?  What crosses would she have to carry?  Would she grow and develop normally?  Would she be in pain?  Those thoughts made me ache for her.

I wanted to fix it all.  I wanted to take her pain.  I wanted to carry her crosses.

But...in those early moments, was it anything like I thought it would be...the things I was afraid of?  No.  Not at all.  In fact, the love for her was fierce...deeper than I knew I had in me...more life-giving than I could imagine.

And, that's when I realized the birth of a child with special needs wasn't a curse.  Instead, it was a tremendous gift.  God chose us.  He gave Agnes to us.  And, while I don't for a minute believe God causes pain or punishes us with trials, I do believe He uses them to bring us closer to Him.  And, that He has already.

I was asked if I did anything during pregnancy to cause this.  And, while I can't honestly say I haven't thought of that, the very next day a man I didn't even know shared the story of the blind man in the gospels...the one in which His disciples asked if he or his parents had sinned to cause this, and to which Jesus replied: "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."

It is so the works of God might be made visible through Agnes.

Later that week, I was listening to a podcast from Father Mike Schmitz...and he said this:

The best is going to be the cross...for me and for you. The best is going to be denying this part of me who wants to run away and say yes to the Father’s will...for me and for you.  

In our love for others we want to spare them...pain, difficulties, struggle. But that means our love would spare them from greatness. It would spare them from the opportunity to love heroically. It would spare them from the opportunity to lay down their lives out of love.

In our desire to make things easier for them, we would give them mediocrity and rob them
of the opportunity to live and to live heroically.

Love demands sacrifice.

My tendency as a mother is to want to take this pain and "being different" away from Agnes.  But, in doing so, I would rob her of the opportunity to use her crosses to bring others closer to Him.  And, to do that would be to play God.

So, instead, these last five weeks, we have said so many prayers...begging for healing and understanding...asking God to show us how best to care for Agnes and how to lighten her burden...all the while praying we use what He has given her and us to bring greater glory to Him.

Agnes may never receive the miracle of full healing, but there are miracles happening all around us...in the prayers offered, the the mindsets changed, in the finding of excellent medical care, and in the humbling of her mother.

The diagnosis I used to run from in fear is the one I'm thanking God for now.  I'm so humbled and honored that God chose us to be Agnes's parents.  I just pray I'm worthy of such a gift.

I didn't want a child with special needs.  I needed one.

She is how He desires.  And, that, is perfect.

For Such a Time as This

 

Hearing that Agnes had health issues the day she was born (and learning every hour that they were more complicated than originally thought) was heart-wrenching.

In one breath, I knew we could handle whatever God laid before us with our precious baby girl.  In another, I couldn't stop the tears thinking of the future she would have and the crosses she would carry.  I wanted to take those crosses from her (and many times I still want that).  I wanted her to be "normal" - I didn't want to worry what this might mean for her and what it could mean for our family.  I knew next to nothing about what was in store (and still don't), and that was maybe the most difficult part.  The unknown...the waiting...seems to always be the most difficult.

We came home from the hospital both physically and mentally drained.  Where would we go from here? When would a team of specialists call and let us know they could see her?  What would we tell the other kids?  How would our lives change?

As we waited to hear the next steps, we decided to tell the older kids about Agnes, knowing some of her health issues were visible to them and that we would be away from home from time to time seeing her doctors.  When we told them, there were many questions, tears and uncertainty.  Then our oldest, Carter, looked at Jeremy and said, "We drink from the cup God gives us, and there's not a hair that falls from our heads that He doesn't know about."  Praise God for the affirmation through the mouth of a little one.  That was the beginning of the revelation of so many affirmations in the last four weeks.

When we were worried about genetic issues, I remembered a question I asked a close friend-now-pediatrician ten years ago that prepared me for that moment at birth.  When we discovered she had a tethered spinal cord, I then realized why I met my wonderful friend Amy two years ago...whose daughter is on the other end of surgery for her tethered spinal cord.  Each new day brought many "signs" of God's presence always.  Some more distinct than others.

I, of course, arrived home and promised myself I wouldn't google any of her conditions until I heard from doctors.  But, I read as many medical journal articles as I could get my hands on and joined a Facebook group for parents of LUMBAR kiddos.  One specific journal article my pediatrician gave me to read.  It was full of information and studied a case that looked eerily similar to Agnes's.  The week I read that article, a friend and former roommate of mine in Houston had an appointment at Texas Children's for her daughter.  She saw a new-to-her doctor that day in the department of hematology, and she casually talked to her about Agnes.  The doctor gave my friend a chart about LUMBAR to send me.  I looked at it and realized I had seen it before.  It was in the article from my pediatrician.  This new doctor for my friend was the author of the journal!

I immediately emailed her asking for advice on Agnes.  Within 24 hours, this specialist emailed me with the compassion and kindness I prayed for, plus an eagerness to help.  She was so open and wonderful and said they would love to see Agnes in Houston.  We went back and forth and finally got an appointment scheduled with her and a dermatologist who wrote the article with her.

In the meantime, I was looking for a saint to develop more of a devotion to specifically to ask for healing of Agnes.  At this point my mind is on overload and I'm obsessed with finding the "perfect" and most "powerful" saint.  Knowing how silly I was being, I still worried and decided to ask intercession from as many as I could think of.  Her namesakes of course  (Agnes, Mother Teresa and Mary Magdalene).  Then, we almost named her Philomena, so her.  Then, St. Therese because I love her.  Saint Gemma patron of back issues.  Alfonsus Liguori for the same reason.  Then, Blessed Chiara Badano - as she's a blessed and may need a miracle.  (If you don't understand the asking of prayers from saints, think of it as asking your friends for prayers.  They don't answer them...they just pray for you, too.  And, the saints are in Heaven with Jesus, so why not ask them to ask Him for you, all the while praying to Jesus yourself...the more the merrier).

My sister organized a novena to Blessed Chiara.  In the meantime, a priest was visiting my parents and offered to celebrate a private Mass for our family.  My parents brought over a saint statue for him to bless for Bell Road Beef, too.  Well, they walked into our house, showed us the saint, and said they were sent the wrong one, but it would still be good to get it blessed.  They thought it was Saint Cecilia.  We still had it blessed because it happened to be the name of this priest's parish!

The next morning I was sitting at the table drinking coffee, and I took a closer look at the saint statue.  She didn't have a harp or musical instrument like Saint Cecilia usually does, so I Googled "what saint is typically depicted with an arrow and an anchor."

Saint Philomena.

Then I discovered Saint Philomena is the patron of infants and babies, was born and died in the same years saint Agnes did (how neat if they were friends!), were both 13 at death, and both died as martyrs for their faith.  Wow.  I think that "wrong" saint chose us.

The same priest came back through town on the day we were finishing our novena and gave to Agnes holy oil he had from the tomb of Saint Philomena seven years ago!  He said he went there on his first pilgrimage as a seminarian and bought the oil not knowing what he needed it for, but that God always revealed that to him, and seven years later, he knew Agnes needed it.

Fast forward to the next week when my friend was taking her girl back to Texas Children's to hopefully get a diagnosis for her blood disease.  She texted that morning asking for a saint to intercede for her.  I looked up the saint of blood disorders...Saint Philomena!

As she was driving to the hospital she saw a tiny Catholic bookstore and called to see if they had a medal of Saint Philomena.  She was on speaker phone and the lady said they've never had anything of Saint Philomena, and just as she said it, the other owner in the background yelled that a lady had just brought in a medal of Saint Philomena giving it to them saying maybe someone could use it.

These saints are powerful, I tell you.

Then on Tuesday, Houston called to ask if we would rather get Agnes seen sooner...in Colorado the very next day.  I've had some struggles with that...just in my mind thinking Houston must be the best for Agnes since those two doctors are there, but they work with the team in Colorado and I have to believe wouldn't refer us there unless they were very confident as well.  So, to Colorado we went.  I was a little sad, too, that I wouldn't know as many people in Colorado if we needed anything.  Yet God came through again, reminding me of a family we met 18 months ago who stopped by our house on the way to OK.  And, my instagram messages went nuts with offers to help from Colorado people.  God is good.

All throughout the past four weeks, I've had so many reach out with prayers, offers to help, stories, and connections.  I've discovered why certain things in the past happened...in order to prepare us for such a time as this.  

Is God "punishing" us with a sick kid?  No.  Does he allow these situations for a greater good?  Absolutely.  And is He with us every step of the way, giving us the grace to handle each day?  YES!  Truly, I feel so blessed to be Agnes's mom, and she has already deepened our faith as a family.  I have a feeling that big things are in store for her, and us...but more on that in another post.

I'm a Little Pencil in the Hand of a Writing God...

...sending a love letter to the world. - Saint Teresa of Calcutta

I'm going to start sharing more of Agnes's story here as a way to document her/our journey and to keep those interested updated.

Where to begin?

Many have asked if we knew anything was "wrong" in utero.  The answer is no.  Of course, she had a two-vessel umbilical cord, and I had polyhydramnios, but they don't know if either are connected to her health issues.

When she arrived, the nursery nurse cleaning her up commented on the big bruise she had down her left leg and another issue of concern.  Jeremy and I didn't think a whole lot of it, until our pediatrician made rounds that evening to examine Agnes.

She came to our room with a little heaviness unlike her and said, "I know you're very concerned about the vascular malformation on Agnes's leg."  We weren't.  We just thought it was a bruise.  Then she mentioned it was the biggest she had seen, and there were other urological issues she noticed.  She then said she was going to spend the evening doing some research.  And she did, the entire night (we love her!).

The next morning she ordered many tests.  She wanted to check her major organs, her bladder and intestines, and run some bloodwork.  It seemed for those two days, with each new discovery more tests were run.  We left the hospital knowing this:  Agnes has a very large vascular malformation/hemangioma spanning from her bottom to the bottom of her left foot.  She has a few complications with urology.  Her spinal cord is tethered.  Her left hip is a bit underdeveloped.  Where she has a bowel movement is too small.  And a couple of other things.

Our pediatrician also mentioned the possibility of her having LUMBAR syndrome...a very rare syndrome - less than one in a million.  In fact, in the medical journals I've read, it says there there 55 known cases since 1986.  We knew leaving the hospital that a full body MRI could reveal more issues but that her heart, brain, spleen, liver and other organs looked great - praise the Lord!

We were to be referred to Dallas Children's for a consult with a medical team. And, I began to research.

In researching, the few articles/journals that discuss LUMBAR pointed to a few main doctors leading the research.  In another post, I'll share how we discovered those doctors were at Texas Children's in Houston...so we began communicating with them in hopes of going to Houston instead of Dallas.  

During the first year of life, the vascular malformation/hemangioma proliferates at an exponential rate and can begin to ulcerate.  In order to slow this growth, Agnes needed to be put on a blood pressure medicine which has a side effect of slowing the growth of infantile hemangiomas.  In the first few weeks, it started to grow and begin to ulcerate, so I felt it was imperative that she was seen soon.  

Going back and forth with Houston (Dallas wasn't very responsive), we set up an appointment with a team there for mid-September.  Om Tuesday, the 8th, they called saying a team in Denver could see Agnes the next morning, so we packed our bags and drove there that evening.

 

Agnes's Birth Story

It been a long time since I've blogged, but what better way to jump back in (even if maybe just for a day) with this one...

At my 37 week appointment, due to the polyhydramnios and two-vessel cord, we decided to induce the following Wednesday when I was 38 weeks.

So, that next Tuesday (Jeremy's birthday), we got half of the kids settled with my parents and drove the other half to his, staying the night there in order to be at the hospital the next morning at 5am.

Jeremy dropped me off at the hospital to get through all of the intake questions, get my IVs and all else started, etc, and ran a couple of last minute errands.  

I had to have a few rounds of penicillin before giving birth, so they started that in the IV and placed another IV in my right wrist in the event that I hemorrhaged.  They also started the pitocin.

My doctor arrived at 8:30 to break my water, and at that point, I wasn't uncomfortable with contractions at all.  He said he was free all day, just had a 1:30 pm meeting of sorts.

Throughout the morning they upped pitocin as I changed positions periodically to try to move things along.  Meanwhile, for some reason the penicillin going into my left wrist was killing me.  I don't know why but it finally subsided.  

I don't remember the timing of it all, but my contractions started picking up.  I had to focus and breath to get through them, but they were manageable.  I came in that morning at 3cm and 50% effaced, and slowly I made progress.  I'm guessing at noon I was maybe a 6 and 70% effaced.

Then things changed.  The contractions got much more intense.  I just closed my eyes, imagined walking to Jesus on the water like Peter (I think it was fresh in my mind because of the Mass readings the week before), and prayed for those intentions from others that had been shared with me.

Then I felt more pressure.  And there was no time between contractions.  From other births, I knew the time was near, yet I got kind of panic-y asking just how near.  I laid on my back, gripped both sides of the bed and prayed the doctor would be there soon.  

I looked up and it was 1:10.  Wide-eyed I asked my nurses if he would come, because he either had to show up soon (I was worried he would miss his meeting) or I needed an epidural to try to slow things down.  They assured me he was on his way.

My entire body started shaking as I tried NOT to push.  There was no rest between contractions so I'm not sure if it was more difficult getting through the pain or getting through not pushing right then.  Poor Jeremy said later that he was sure everyone thought he was a dead-beat because he just sat calmly in his chair praying.  But, he knows me better than anyone, and the contractions were just something I had to get through myself.

He arrived, got suited up, and with one push, she was out!  And I had some relief!  Born at 1:49 pm, weighing 7 lbs, 1 oz and measuring 18 inches, our Agnes Mary Madeleine had arrived!!  Smaller than any of my others by a pound and a couple of inches!

  

It took awhile to deliver the placenta, but finally that happened, too.  

Everything was wrapping up, and my doctor was about to leave when I sat up and felt blood gushing out.  I asked him to wait.  And, he suited back up, and spent an hour or so stopping the bleeding, with injections and packing and making my uterus contract.  It wasn't comfortable in the least bit, but I'm so very thankful I was right where I was and that it happened when it did.

After that was under control, a deep breath of relief and cuddles with Agnes made for the perfect day.

We had a difficult time at first deciding on her name (months ago).  But, one evening years ago, we watched The Letters (about Mother Teresa).  After the movie, Jeremy said, I want an Agnes someday.  We had Genevieve and Lucy since then.  Early in the pregnancy, he mentioned Agnes, and all the kiddos shouted in unison that that was to be her name!  So, I started doing research.  Of course, we love Saint Agnes, but I was wondering if Mother Teresa maybe had a middle name we might use instead.  As I researched it, I came to her bio.  I don't even remember what her middle name was, but what jumped out at me was that she was born August 26th...the due date of our little Agnes.  I immediately texted my sister, and she said, "Well, it looks like Agnes chose you!"  So, from that point on, Agnes it was.    

Mary Madeleine is the French spelling of Mary Magdalene.  This spring we watched The Chosen, and her character impacted me greatly.  We've always loved the name Madeleine, too.  When my sister visited France last year, she sent a photo of the Church of Mary Magdalene, spelled Mary Madeleine.  I was sold.

The final trimester of Agnes' pregnancy was one of my best, and I'm recovering well - all blessings from God.

Our days in the hospital with our sweet girl were full of tests, revealing some issues that we will have to further investigate...two of which are a large vascular malformation and a tethered spinal cord.

There is nothing quite like the love we have for our children, and the vulnerability that comes when our hearts are opened so wide.  Yet, as we meet with specialists in the near future and develop a plan for her future, I'm so quickly and strongly reminded that we are in the hands of God, and He is with us every step of the way...through friends, family, and the moments in the past that have been made very clear to be preparing us for this very time.

And, how blessed we are!  Agnes Mary Madeleine, you are a light in our lives, and we love you beyond compare!