Tuesday, September 15, 2020

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.

Thursday, September 10, 2020

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.