Why does the caged bird sing?

 

Why does the caged bird sing? 

"A bird doesn't sing because it has an answer, it sings because it has a song."

As most of you know, I spent a month in the NICU with our daughter Kali. I spent a month crying, and laughing, and wondering, and thinking about life. I spent a month thinking about words. I wondered how I would eventually say all of the things that I needed to say. I wondered how to answer all of the questions that were swirling in my head and my heart. I wondered how I would best formulate the right, and eloquent words to share that journey with you. 

What I realized, after weeks of rehearsing the story in my brain (and almost making myself crazy in the process) is that there is no "right" way to share what I have to say. We all have our own journey, and we all walk our own roads in such different, but perhaps such similar ways.  What I learned is that the only thing that is right, is to be honest and to share our journey the way God would intend us to share it. From our hearts, and from His grace.

 So here is our story, here is our song.  

A few weeks before giving birth to Kali, I was browsing Facebook and came across another woman's blog. I wept as I read their story and I wept as I imagined how this would effect me, if I were in her position.  

To give some background on the situation, I will tell you that we have never had any screenings or tests done on our children during pregnancy. I have always said that I would love and cherish and give birth to ANY child that God would bless me with. Jason has heard me plead with him for years to sell everything we own and go and be parents to children anywhere and everywhere in this world, no matter the cost, no matter the condition, no matter the cause.  I have always believed that where God would guide, He would provide.  Little did I know how God was preparing me and my heart for what was to come.

Fast forward a couple of weeks and I'm at one of my final OB appointments.  Any day now, my perfectly healthy, wonderful bundle of joy would be making her entrance into the world.  The 9 months of stress and worry and agony were almost over... Just get through the delivery and bring her home, and all will be well in the world I thought...BUT....If you've ever been pregnant, or have been with anyone who is pregnant, you will know the dreaded moments of having your doctor look for a heartbeat, and not find one...I waited, I pretended to be OK, I held my breath and prayed a silent prayer.  "Let's go to the other room and take a look on the ultrasound" the doctor said.

Silence. Fear. Prayers. 

As it would turn out, he was able to detect a heartbeat, and tried to reassure me of her well being.

He offered me the option of being induced the following week if we still sensed unstable vital signs on my baby girl.  I went home from that appointment and found myself barely able to sleep for an hour at a time. I kept moving and turning and measuring kicks and movements to make sure that she was safe. I knew something wasn't right, and I knew that I needed to have her out as soon as possible. Looking back, I believe that my body reacted to my fears and anxiety, and began to labor on it's own because of this.  After 8 children (ALL late in terms of pregnancy) this one was making it's way early for a reason.  I called Jason, and my mother, and told them that they better make their way to the hospital ASAP and that I knew that something was happening. At that point my dear friend came to my house without prompting and insisted on sitting with me until the back ups arrived. (I am forever grateful to you RA). 

Fast forward again, and we were in the hospital, on the monitors, and the doctor advised that I stay there, and that I would be induced for labor the next day.

Nearly 24 hours later, Kali Raine Marie Owens would make her entrance into the world. 

9:48pm.  Thursday March 27. 

I looked down at her as she arrived and I cried tears of pure joy. 

She was alive. She was healthy. She was beautiful. She was perfect.

The doctors said that she had great newborn scores. All was well as I took her to my breast and met her eye to eye.  What would be my last pregnancy, and birth went off without a hitch. God is good I thought. Thank you for this perfect life. 

Thank you.

A few hours later Kali would begin to vomit. 

The nurses and doctors said that it was a normal occurrence due to having been born so quickly, and that her body maybe didn't process the fluids she swallowed during delivery.  We accepted this as the answer and we continued to feed her and watch her. The vomiting continued and the doctors began to consider that maybe, just maybe we needed to investigate further. X-rays were done and all testing came back normal. There was nothing they could see that would indicate any problems. We continued to feed, and we watched her sleep peacefully that first night.

2AM Saturday. The doctors woke us to tell us that because of her vomiting, they decided to do a 2nd Xray, to rule in or out the possibility of another issue. The 2nd test confirmed that she did indeed have an intestinal issue.  They told us, through our sleep depraved eyes and bodies, that the transport team was on their way, and they were taking our 1 day old baby to the NICU in San Antonio. Further tests and possible surgery were on the horizon they said, and they advised us to go home and get sleep now, so that we would be prepared for the "days" ahead.  

After a few minutes of "sleep" (yeah, not really), we met with a surgeon who told us of the possible complications and the inevitable surgery Kali was about to face.  One scenario not so promising, the other, the bright side.  After several hours of waiting for answers, we found out that the bright side was in fact in our cards, and that her surgery wasn't critical. Her diagnosis at the time: Duodenal Stenosis (http://www.webmd.com/children/duodenal-atresia-or-stenosis)  The surgeon assured us that this was a common and very treatable condition.  The surgery could wait until the morning...

But...

What came next would bring us to our knees.  

What came next...

The doctors and the surgeons gathered around and tried to make sense of what had happened so far.  The complications in pregnancy and the after birth issues...

They all scratched their heads, and doubted what they thought may be the case.

 Based on this one issue...

BASED SOLELY ON THIS ONE ISSUE...

They said the following words.

Down Syndrome.

Down.

Syndrome.

BUT!!!!!! 

We're going to do tests to RULE IT OUT they said.

We're just going to do tests to RULE IT OUT!!!!!

These amazing, certified, awesome, wise, and wonderful doctors, wanted to rule it out.

I couldn't hear anything else they said. Nothing else that came and went between us would matter.

NOTHING...
 
At the end of they day, they said those words.

Down Syndrome.

Those 2 words that we have probably all heard a million times in our lives.

Those 2 words that never meant much to us. 

Those 2 words that had the potential to change our lives. 

They said the words that every pregnant woman hopes she will never hear.

 It's true.

We don't want to hear it. We don't know how to handle it. We don't want it to happen to "us".

So there we were. 

There we were with no words to describe those first moments.

There we were speechless, because there are no words to explain what we were feeling.

We stood there in complete shock and in complete disbelief. 

I cried.
I sobbed.
I wept.
I mourned.
I feared.
I doubted.
I cursed.
I questioned.

And then, I cried some more.

My sweet, precious, perfect, beautiful, angelic baby may have Down Syndrome.

God.

Seriously God???

How can this be?

I didn't want to be pregnant in the first place (another story for another day). I didn't want another baby. I didn't want any of this.

Why?
How?
WHAT????

I cried as many tears in 5 minutes as some might cry in a lifetime. I wept with questions and uncertainty. I cried A whole LOT. A freakin' LOT.

Then, we pushed those feelings away and we waited.

Her surgery.

We cried. We prayed. We held our breath.

She made it through.  She was OK!! Praise God. Our baby made it through the surgery and she was going to be OK...

But, then we were back to that other reality.

We were back to minutes, and hours, and days that followed. 

We were in the throws of the hardest moments of my life. I sat and watched my 3 day old baby on a ventilator. I watched her chest rise and fall. I watched her eyes open for just a moment at a time. I stood by her and waited...I waited for signs of life. Signs of progress. I waited and I watched.

But in those moments of victory in LIFE, I also watched for other signs. I watched carefully. I watched every moment and every movement. I couldn't help it. It's all I could think about.

Down Syndrome.
Down Syndrome.
Down Syndrome.
 
Kali, your perfect, beautiful, amazing daughter, may have Down Syndrome.

Kali. My perfect, beautiful, amazing daughter. 

God. My perfect, beautiful, amazing maker.

Why?
How?
What?

God.

Why me?
Why?

To be continued...