I Think I Can Finally Talk About It - My Daughter's Story

Fair Warning - I'm going to be brutally honest about a trial of faith.... it may disappoint you that I didn't face a battle the way that I should.  It's lengthy.  It's the first time I've been open about this.  Please be patient with me. :)

It all began when my husband and I found out we were expecting..  We had been married for two years, both had great jobs, great insurance, were buying a new house, and all was well with the world.  Then, as the appointments went on, & we found out it was a girl, we were over the top excited (I'm pretty sure it's just the typical feeling that most expecting parents get)... So, when my doctor presented us with the question that most obgyn's do these days, "Would you like to run tests to ensure that the baby is healthy?  If you choose to do so, and the baby is not healthy, would you abort?", the answer was obvious to us, "Absolutely not!  We would love this child regardless."  Besides the fact that I don't believe in abortion, I really wasn't worried, our pregnancy had been picture perfect.  The following few months were a whirlwind.  Moving, cleaning, baby proofing, showers, preregistering at the hospital, and everything else that getting ready for a baby entails consumed our daily lives.  As my due date approached, every time I felt a nudge we raced to the hospital.  Yes, I was that crazy expecting mom.... I went to the emergency room not once, but twice with braxton hicks.  So, when my water finally broke (in the middle of Hobby Lobby, mind you) I was skeptical.  I went home, showered, got ready, called my mom, mother in law and husband, and expecting the same, "No ma'am, you're not in labor" drove to the hospital, only to find that my water had in fact broken.  It was game time. 

LOOOOONNNG story (22 hours of labor, to be exact) short, by 11:50 am we had a baby girl, and she was perfect in every way. 

Despite the drugs they had me on, I remember the tiniest, sweetest little girl that I had ever seen.... that I had ever loved so much.  The nurses and doctor talked about how great I had been, and how, despite the length of the process, the birth was picture perfect, and the baby was picture perfect.  So, off we went, on our way home, with our new bundle of love... Everything that you can imagine that is good, we felt for her....

As soon as we arrived home, we started noticing abnormal jerking movements on one side of her body.  It was just a small movement, so we just assumed that maybe she had pinched a nerve during birth, or that she was cold, or had hiccups... you know, my baby was perfect, nothing COULD be wrong.  Then, the movements started on the other side of her body.  It looked strange, so we called her pediatrician via phone (this was approximately 10pm), and were assured that all was well... it was normal for newborns to have those movements, that we could video it to share at her appointment the next day.  And, then, there was the appointment.  We went in, everything seemed fine, her measurements were good, she was eating well, the pediatrician had no concerns.  Then she started the same motion with her limbs that she had done the night before.  The doctor calmly excused herself from the room, was gone a few minutes and came back with a somber look on her face.  She said, "I've contacted Texas Children's Hospital.  I've got a friend there that is in the neurology department... I want him to just check her, to make sure that everything is okay.  I'm sure it'll be fine, don't get alarmed, just get to Houston, and see the doctor to double check."  So, we were off.  No reason to be alarmed, right?  Nothing was wrong with our new baby - we were just going to prove that. 

I have very little recollection of what happened when we arrived at Texas Children's Hospital.  All I remember is walking in, and doctors swarming us.  Our pediatrician had wanted us to be safe, and not drive dangerously, but the situation was apparently more dire than we had been told.  The doctors were telling us how thankful that we should be that we got her in so fast... that she could have (gulp) died had we not gotten her there.  Elevators were cleared to get her on and off in a hurry, nurses and doctors were sprinting across this huge hospital with my tiny baby attached to chords.  It was all happening so fast, I couldn't really process anything.  Then for days (they seemed like years) teams of doctors scoured her body with tests, MRI's, MVI's, Cat Scans, and drawing blood (so much blood that they were afraid they were going to have to do a transfusion).  She was in the highest level of NICU.  Our little girl, who was the picture of perfection a day before, was now lying in a web of wires, with monitors and screeching all around her. 

 This is where I have to just be brutally honest with you.  I. hurt.  I felt like I had been abandoned.  I can't even explain how alone and helpless I felt.  And, angry.  I was so mad.  I had done everything by the book.  I had great health care.  I had been cautious about everything.  Not only had I been cautious about everything in my pregnancy, I had been cautious in life.  I am a believer.  I went to church.  I didn't live a filthy lifestyle. 

This is where it gets real - Why was God putting me through this?  I. Was. Angry.  I had devoted myself to Him, and He chose the most precious thing I had ever been given, and let this happen. 

As time went on, answers to the cause of her seizures and abnormal levels seemed to be getting farther away.  It felt like they would never know.  We were given some hope, though, because she stopped seizing.  Thankful for that, we regained some momentum, thinking that maybe the problem had fixed itself...

Then, as my husband and I were by her bed one day, a team of neurologists approached us.  They asked us to have a seat.  They proceeded with, "We have good and bad news.  The good news is that we know what caused her seizures.  We have an answer."  Great!  We now knew the cause and could fix it.  "The bad news is she's had a perinatal stroke.  There is no remedy for this.  It's obvious that a portion of her brain was affected - there is dead matter."  What?! A stroke?!  That's something that people who are at the end of their life deal with.  NOT beginning.  "There are things that you need to expect as a result of this.  She will have trouble meeting her milestones.  Don't worry, though, we have a program that she can attend that will make sure she gets the care she needs." 

My. Heart. Sank.  As a matter of fact, the majority of what they said had to be repeated to me, because after "stroke" I heard nothing. 

We were free to go.  Just like that.  There was nothing else they could do for her, she was broken, and there was no fix.  So, I came to terms with the reality of the effects of a stroke. 

This is where I eat crow. 

There are those of you out there who do have children with disabilities. I understand (to an extent) how you feel. When it's your baby, regardless of who they are, they are perfect. I left the hospital with that in my heart. Regardless of the road we would face, she was alive. She had been through more in her tiny life than I ever have, and she was perfect. 

Despite the fact that I was okay with what we had been told, what we expected, God had other plans. 

We were told she would never lift her head, sit up on her own, or crawl.  She did.

We were told she would never walk.... She rarely does.  She mainly runs everywhere. 

Talking - don't expect it, they said.  She is now saying sentences, can identify her eyes, ears, mouth, nose, hair, knees, toes, etc. 

She is a normal, rambunctious 20 month old little miracle. 

Miracle - that's exactly the term that the neurologist used the last time we were at Texas Childrens for an appointment.  He said there is no medical explanation for it.  He says the only reason she is where she is, is because of prayer.  And faith. 

Faith?  Did I have faith?  I realize that God can move mountains with the faith of just a mustard seed, but I had been so angry, and self absorbed, I'm not sure my faith was even that big.  I would like to say that I faced the fight like David when he looked at Goliath, but I'm pretty sure I resembled the Israelites on their journey to the promised land.  I saw the battle, and I turned in fear.  I forgot exactly how big my God was.  I am so thankful for what God has brought us through.  The lessons I've learned, and the joy I have in knowing that God has bigger plans for us, despite what we see. 

Something that has embedded itself into my memory is the question my obgyn posed that day during my pregnancy, "Would you like to run tests to ensure that the baby is healthy? If you choose to do so, and the baby is not healthy, would you abort?".  You see, a perinatal stroke can happen in utero or within a few hours of being born.  One can only speculate, but what if?  What if she had the stroke in my womb, and the doctors had given me the scenario that they gave the day we discovered it on her brain?  What if I did believe in abortion? 

We like to make pretty pictures of things.  We like to share testimonies with "Halelujah!" shouts at the end.... when the truth is, God knows what happened during the thick of the trial.  During the anger.  When He watched you suffer alone, without trusting Him to take care of the battle. 

If you're standing, facing a giant in your life today, I pray that you trust that God is big enough.  He sees what we can't see.  He knows what we don't know.  And, He cares for you.  He has your best interest at heart.  He is painting a picture that is much bigger than who we are, or what we can see.  Be still.  Know that He is GOD.  His ways are not always our ways, but they are good.  The Merriam - Webster Dictionary defines faith as "complete trust, or firm belief in something for which there is no proof."  Did I know that God was going to let my new baby survive?  No.  Did I know that He was going to help her lead a normal life?  No.  But I should have.

My prayer is that I stand strong when I face trials.  I am obviously not strong.  I've proven that.
BUT - my God is.   

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33