Chapter 4 ~ Why Does God Hate Me?...

Over the course if the next several weeks, I will be publishing my story, as wife, mother, sister and daughter. This is the evolution of how a little girl can change the course of her mother's story, can change the course of her heart. If your new to this blog, please begin here. 

Sept. 27, 1992 - Courtney Elizabeth is baptized
Chapter 4 ~ Why Does God Hate Me?

Courtney was a quieter baby than Jonathan, very calm and peace filled. She nursed well and was such a change of pace compared to her very busy older brother who had recently taken up climbing on our entertainment unit. Good practice for Mount Kilimanjaro.

She smiled often and her cornflower blue eyes would follow me around the room. Her big brother was getting used to the new pecking order and couldn’t wait for Court to play “Yegos” with him.

After a consult with our doctor, Jerry and I had decided that I would have my tubes tied four weeks after Courtney was born. The doctor was concerned about the diabetes; my irregular heart beat during pregnancy and a few other anomalies. That was all Jerry needed to hear to be convinced this was the way to go. We had two healthy babies. He was done.

I was tired and overwhelmed and I wanted...needed desperately for my husband to be happy.

I agreed.

A week after my surgery, we traveled to Maryland to attend my younger brother Joe’s wedding. Dad was in the middle of chemo and really sick. He put up a strong face and smiled through the constant pain and nausea. He had a hairpiece so that he wouldn’t look so sick for the pictures.

We teased him relentlessly, calling it “Road Kill Sammy” because it looked like a squirrel had wrapped itself around his head and was sleeping soundly. He always looked better when he was laughing.

The wedding day arrived and Courtney was fussy. She wasn’t nursing well and slept quite a bit, which was unusual. I thought she was coming down with a cold, so I watched her. That afternoon during the reception, Courtney had two episodes where her body stiffened and her eyes rolled back into her head. It happened so fast like a snap of the fingers. If I wasn't watching I wouldn't have seen it. It was odd, but she recovered so quickly I chalked it up to being startled by the loud dance music at the reception.

Sunday morning arrived and the family gathered at the parish I was raised in to celebrate Courtney’s baptism. We were following the Large Catholic Clan rules. When three or more are gathered, celebrate a Sacrament!

Right before the ceremony, it happened again. This time she held her breath with her face turning red for a few seconds as her whole body stiffened, eyes rolled back once more.

I looked at Jerry with concern.

He assured me everything was fine. "She's just overstimulated." he said

We went on with the baptism.

As Father poured the water over her head, Courtney arched her back, cried out and stiffened. Her breathing was shallow and her face was getting redder by the second. Her arms curled up and came forward. Her eyes rolled back into her head and she shook for about ten seconds. I had a hard time holding her and Jerry reached over to help.

We looked at each other knowing this was not right.

My mother was watching with a frown on her face. She and my father exchanged a worried glance. As soon as the ceremony ended we took one or two pictures and it happened again, lasting longer.

That was it.

I couldn’t get into a car the next morning and drive 12 hours back to Maine without knowing what was wrong. I thought maybe she had a virus or bad ear infection and was reacting in pain. I just needed to know.

Courtney was getting fussy and more agitated. I decided to nurse her to see if it would help calm her. She went into another convulsion clamping down on my breast and not letting go.

Pain seared through my chest. Courtney curled around me like a stiff donut, and her body began to pulse. I cried out and got the attention of  Jerry who come over to me with a horrified look.

I could not get her to release. Tears were streaming down my face and my chest was on fire.

My Dad took over. 

"Go now. Bethesda is right down the road. GO NOW."

The next 30 minutes are a blur in my memory. I remember sitting in the back seat of the van with my daughter clamped down on my breast. I had my hand in front of her nose pulling the breast tissue away so I knew she was breathing. 

She just kept convulsing like a waves coming on shore. One slow beat at a time. She wouldn't detach but she wasn't nursing. I was so afraid that I was choking her. 

The pain was like nothing I have ever known, a mix of a burn from something searing hot and the intense sharp spike of stubbing your toe times one million. 

As we entered the ER, the nurse took one look at us and brought us back immediately, without one piece of paperwork. An absolute miracle in a military hospital. 

There were people buzing around me as they asked questions about allergies and what had happened. Jerry did most of the talking as I continued to protect her airway. 

17 minutes and counting. 

The Doc walked in and in a matters of moments gave Courtney a shot in her leg. She finally relaxed and I was able to pull her off my chest. The nurse took her from me and placed her on the gurney. I stood there, weeping, arms empty with my chest exposed. My eyes never left that bed. 

Jerry stood in front of me as the medical team assessed our daughter and helped me buttoned my top. A Corpsman came in with a coldpak. Jerry helped me put it inside my nursing bra on my left breast. Bruising was beginning to appear.

Another nurse brought us a hospital gown with little pink elephants on it. I helped changed Courtney out of her white baptismal gown as gently as we could. She had finally stopped shaking. She was breathing. She was being connected to all kinds of wires and there was an IV in her hand.

It was all happening so very fast.

She looked so small in a sea of white blankets, her little bald head and pale skin looking even paler. The doctors talk in hushed tones waiting for her to do it again. They thought she may be having seizures, but they wouldn’t be sure until she did it again. Tests were ordered, blood was drawn and Jerry and I began asking question after question.

Seizures? Did she have a fever? Was she sick? Did anyone in the family have seizures? Genetic anomolies? and on and on and on...

All the while we waited and watched.

Courtney obliged them about 30 minutes later and all hell broke lose.

She held her breath and began to turn blue.

There was yelling and rushing about and we are told by the team to step aside. My body began to shake and tears came even though I had tried so hard to remain focused and calm. Jerry held me tightly and we prayed aloud...

"God, please don’t let her die. Please God. Please God."


Brain Tumor


Infantile Spasms

Those were just a few of the things bandied about in the ER. They had no idea what they were looking for. They just kept looking. While we were waiting for the team to do the first of many spinal taps I realized that Jonathan wasn't with us.

"Jerry, where's Jonathan? Oh God, did we leave him somewhere? Does the nurse have him?" I turned  to leave the cubicle and my husband stopped me.

"Mar, he's fine. Your brothers took him back to the house. Your parents are in the waiting room. They will keep him with them for now. Don't worry it's going to be OK?"

OK? OK? Did he actually believe that?

"What the fu** about this is OK?" I whispered in that harsh tone I used on Jonathan when he was misbehaving in church, like a tiger whisper. "Take a look around you Jerry. NOTHING about this is OK!"

He crossed his arms and remained silent. It made me angrier.

They administered more meds and Courtney stopped seizing. I slipped into the bed next to her. She was sleeping peacefully for the moment. I began to sing softly...

You are my sunshine, my only sunshine
You make me happy, when skies are grey
You'll never know dear how much I love you
Please don't take my sunshine away

You are my Courtney, my only Courtney
You make me happy when skies are grey...

As I continued, hot burning tears slipped slowly down my face. I stroked her sweet little cheek while she lay so very still.

Please don't take my Courtney away...

The next 2 hours were filled with EEG’s, MRI's, CAT scans, blood tests, more blood tests and a spinal tap. My chest began to throb in a different way at hour number three. I needed to nurse Court. I asked the doctor if that would be OK. She was beginning to stir a bit and I thought she would be hungry.

He said "Not until the blood work comes back. That will take about 48 hours."

48 hours? My boobs would explode before then. I was already uncomfortable. What the hell was happening now?

"What test is this?" I asked, folding my arms to support my chest that was feeling heavier by the moment. 

Apparently there was a rare enzyme that existed in some mothers breast milk that the child might be allergic to. I had never heard of such a thing. They had to send a sample of my milk and Courtney's blood out for this unique test. Until then, they didn't want me to nurse.

I asked for a pump and was told he had already ordered one from the maternity floor. It arrived 45 minutes later. Military hospital precision. A huge bruise that was beginning to bloom for the earlier trauma. I pumped, gave the sample to the nurse and dumped the rest gritting my teeth through the pain. There were pain relievers for my daughter but none for me.

They admitted her to the Pediatric Intensive Care Unit (PICU) for the night.

Mom and Dad stay with us for the first few hours, and then went home to take care of Jonathan. It was the first time in his little life that I would be away from him. I hoped my mother was ready to read every book he had brought with him at least twice.

It was going to be a long night.

Jerry was due back in Maine the next afternoon. We were scheduled to move to DC on Wednesday for Jerry’s next tour of duty. We had been so happy when we received our orders. We were going to be close to family for the next three years. This was such a gift especially with Dad being so ill. In the last four years I had missed graduations, prom dates and too many football games to count. My younger siblings were growing up and I had missed it. At least now, I would be close for a bit.

How the hell was THAT going to happen? This was a disaster of epic proportions.

When it pours. This was not be the first hurricane in our lives.

Around midnight, I sent Jerry back to my parent’s house to rest. He had no choice. After discussing every possibility while sitting with Courtney in a dark room with more machines than I saw in an auto mechanic shop, we knew he had to drive back to Maine in the morning.

He bent down over his daughter, kissed her sweetly about 100 times and kept telling her how much her Daddy loved her. She was such a tough little chickedee, she was going to be OK.

He kissed me good bye and told me he loved me then he walked away.

I felt so alone sitting with Courtney in that hospital room. I pumped again and this time saved the milk. The floor nurses had given me a cooler and some disposable bottles to feed her with.

Court woke up and was was so upset. I rocked her and tried to soothe her. It was dark and the only noises were the blips and beeps of the monitors above her bed. She had wires and tubes coming from her chest and arm. They had a blood pressure cuff on her leg that swished every five minutes. She kept turning to try to latch on. I couldn't help her. They wouldn’t let me nurse for another 48 hours.

This was pure hell.

My chest hurt and I was getting frustrated. The bottle confused Courtney. She fussed and cried and I struggled to keep it all together. A young petty officer finally came in and offered her assistance to feed Courtney so she could get used to the new nipple.

No, no I could do it I assured her. I could take care of things. Miss Courtney had another opinion and just got more upset. I didn’t want to hand her over, but I had no choice. For the first time someone else fed my daughter and I wanted to rip her out of that woman's arms and run....and keep running...until there were no more wires, no more doctors, no more hospitals. I hated every second of this.

The petty officer burped her gently and placed her back in the bed.

I couldn't take care of her. I couldn't soothe my daughter. What the hell kind of mother am I?

That unsettling sense of doom stayed with me. The CAT Scan machine was finally available at 2 a.m. I walked down with my daughter in a crib that looked more like a cage. The halls were silent. The only sound was the beeping of Courtney's heart on her monitor and the constant squeak of one of the cribs wheels.

I wasn't allowed to go back with Court while the test was being done. I sat in the empty waiting room trying to keep myself together. My mind was running away with gruesome thoughts.

She was going to die. They were going to find a brain tumor and she was going to die.

Why God? Why would you do this? What the hell did I do to make you so mad at me? She's so little, so innocent? Why are you taking her from me?

I begged God not to take my daughter away. I begged Him to take me. Whatever it was, just give it to me. Let my sweet little girl have a chance.

Then it hit me like an anvil. My chest began to feel tight and my breaths came hard and fast.

The surgery. OH No...No...No...No..No...What did I do? What did I do? What did I do?

God was punishing me for my choice not to have any more children. Courtney was going to die and I could not have any more children! He was going to make me pay for my disobedience.

I was starting to lose control of my emotions. I felt like I was on a runaway train and we were heading straight for the side of the mountain.

My daughter was going to die and it was all my fault.

The battle that had begun in my heart between my will and God's...just became a WAR...

**If you would like to read here...thank you**

Copyright 2011 ~ Mary E. Lenaburg

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