Chapter 7 ~ John's Hopkins

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. 

Courtney and I one month after ACTH - July 1993
Chapter 7 ~ John's Hopkins

After the ACTH experience, I went from being obsessed with finding a cure to being obsessed with protecting my child from any further harm.

My guilt was compounded by the fact that Jonathan was turning four and beginning to act out in a huge way. He was kicked out of pre-school for biting another student. He would throw temper tantrums in the middle of the grocery store if he didn't get what he wanted. He talked back and refused to be obedient.

I felt like a complete failure as a mother. I couldn’t get it right.

Jerry and I continued to struggle in our marriage not being able to communicate how we were feeling about everything that was going on...other than yelling at each other and judging every little choice the other made.

Life was further complicated by my father’s battle with cancer. He had come out of remission and was in the fight of his life. Two people whom I loved so very much were suffering on a daily basis and I could do nothing to help either one.

I felt so alone, so very alone.

I had no control over any aspect of my life.

Our trust in Dr. M and the military medical establishment was gone. We fought to be transferred to a civilian medical practice. This was unheard of at the time but we fought hard and took our fight all the way up the chain of command.

Because of our daughter's unique case, we were approved to receive care from Dr. John Freeman, a world renowned neurologist at Johns Hopkins in Baltimore, MD. He would become Courtney’s guardian angel for the next two years.

Courtney still dealing with the after affects of the steroids...
We met with him in June of 1993 and a week later, Courtney was admitted to the Pediatric Research Unit at Hopkins. He wanted to run every test available to see if we could solve the mystery. He had resources that most hospitals did not. He had a reputation of solving the tough cases and finding or creating treatment plans that helped.

I walked through every single test that would be done to Courtney weighing the value of the result with any side affects. There was no way in hell I would let anyone touch my girl again without a darn fine reason.

I finally told him as long as there were no lasting side effects, he could go for it. We were once again cautiously optimistic. If there was no "fix" but maybe we would finally know why she had seizures and there would be something available to help her deal with the seizures better.

The morning of June 16, 1993 dawned bright and cheery. We were finally going home after a week filled with non-stop testing, medical interviews and alarms interrupting sleep every single night as Courtney continued to have seizures.

The sun shone through the blinds in our tiny room on the PRU. Courtney had been taken down for her final round of imaging tests before being discharged that afternoon.  I had awakened in time to kiss her before the nurses rolled her away in that ugly metal crib that reminded me of the ones I had seen in a magazine article on Russian orphanages.  We had already been in the hospital for what seemed an eternity and the outcome was as grim as it seemed for the orphans.

Hopkins was one of the finest medical institutions on the east coast.  Surely some one knew how to help my little girl.  This past week had been filled with spinal taps, blood test after blood test, muscle biopsies, EEGs, MRIs, PET Scans and many other tests I can’t even spell or pronounce.  It was exhausting and very painful for Courtney.  She was bruised from head to toe with punctures, biopsy scars and tape marks.

This was the last day. I was waiting for the clinical team to let me know the results of some of the tests taken during the past week.

Maybe we would finally have some idea what was wrong and they would let us go home with an answer. At least that's what I hoped for and hope was all I had. I was NOT going to quit on my girl.

The team of physicians and nurses made morning rounds early that day, even before I had a chance to shower and eat.  There was a soft knock on the door and they entered the room with very concerned expressions.  It was only 8 a.m. and my stomach began to turn.

This cannot be good  I thought.

The Pediatric Neurologist, Dr. Freeman began a very long and lengthy dissertation of all of Courtney’s ailments, from seizures with no known cause, cortical blindness to severe developmental delays and so on.

 “Mrs. Lenaburg,” he said, “Your daughter may not see her third birthday. The seizures will get worse over time and if we can't get them under control, it will not end well. I say that for you to be prepared for what will come. Based on what we have found this week, she won’t be able to walk or talk.  She will be wheelchair bound and will be severely mentally retarded and developmentally delayed. She will be completely dependent on you for the rest of her life.”

I sat stunned in silence, before nodding my head and weakly saying, “Ok.”

The social worker was next. “Mrs. Lenaburg, 80% of all marriages with severely disabled children end in divorce within the first five years.  We suggest you and your husband go into counseling immediately to help prevent this.”  She said softly reaching for my hand. “Also, we understand you have another child, your son Jonathan, he’s four now?”  She asked quizzically. “We recommend family therapy as well to help with the guilt and anger he may feel.”

Guilt and anger? What do you mean? What did he have to be guilty about? 

I must have looked completely baffled because she tilted her head and gave me the briefest of smiles and squeezed my hand before yielding to the next troubadour of good news.

Funny I thought How was one supposed to comprehend all of this with no coffee, no breakfast, and teeth that feel like they have four years of plaque on them?

I had to mentally shake myself to pay attention to the floor nurse.

The floor nurse, who smelled suspiciously of bacon as I heard my stomach grumble, began to go over Courtney’s daily care plan with me including special charts for diet and medications to help curtail the seizures.

How was I supposed to remember everything so I could tell Jerry when he arrived to take us home? Notes...I need to be taking notes...

By the time they finished and everyone had handed me their cards, test results and various paperwork assuring me that I could do this, thoughts were screaming through my brain. I couldn’t focus.

Courtney will never be a normal child. 

 She will be mentally retarded and severely disabled.  

Why me?  Why now?

 How am I going to deal with this? 

What about Jerry and Jonathan?  

How are they going to handle all of this? 

What about my marriage? 

 Jonathan…will he feel guilty that he was normal and Courtney wasn’t? 

 I think I might throw up…

How do I explain this?  

Damn...There is no answer….

I needed to move.

Shower, a nice hot shower to clear my mind and dissect everything.  I looked at the wall clock and knew Courtney would not be back for at least another hour.  I gathered my things and went into the small closet they provided with a sink, toilet, and the most cramped shower known to mankind.  I turned the water on so it was nice and hot and eased my body into the small space.

The water was hard and I could almost hear it echo in my head as I washed and rinsed my hair.  I turned and faced the wall and let the water cascade over my neck and back.  I watched the water swirl about my feet and down the drain, carrying what felt like were the remnants of the life I thought I would have along with the soapsuds.

My eyes were hot with unshed tears as I fought for control over my emotions.

She can’t die, God, she can’t.  You can’t have her. Take me. Your mad at me. Take me. They’re wrong.  The doctors are wrong. They have to be. I am not ready for this.  Who do you think I am?  I am not strong enough for this.  She’s so little, so sweet.  Oh, God, Jerry can’t do this.  He has a hard enough time with babies to start with.  The seizures alone are freaking him out.  He’s going to leave--I know it.  Retarded. I hate that word, what does it really mean? I did not sign up to be the parent of a special needs kid. It's too hard. I can't do this...

I could no longer hold back the tears, and they came with a violence that was unexpected.  With huge sobs, and my entire body shaking, I sank down in the shower crouching, holding my knees to my chest and letting the water roll over me like a swollen river.

My sweet little girl. How are we going to do this? 

I had lost her forever and there would be no more more little girls...

I stayed until the water ran cold and numbly went through the rest of my routine.  I dressed and brushed my teeth.  I walked quietly and dazedly down the hall to the “family common room” where I poured myself the last dregs of coffee from the pot.  I grabbed a stale donut and went back to my room to wait for my Courtney to return.

I tried to read through some of the paperwork they had given me but kept getting it wet with the tears that did not seem to stop.  Finally the door opened and in rolled my sunshine followed by her team of merry assistants.

“She’s a trouper, Mrs. L,” said the happy one in the Mickey Mouse shirt.  “Didn’t cry at all for the IV and stayed perfectly still for the test.  She’s a strong little girl.”

This I knew, but it was nice to hear.

The nurses left us alone and I lifted Courtney, dressed her in a little pink hospital gown, out of her crib and cuddled with her in the rocker they brought in for me from the maternity floor the first day we arrived.  She curled her little hand around my finger and held tightly.  She was still groggy from the mild sedative they had given her, opening and closing her deep blue eyes, fighting the drowsiness that would soon overtake her.

I started to sing softly.

You are my sunshine, my only sunshine.
You make me happy, when skies are gray.
You’ll never know dear how much I love you,
please don’t take my sunshine away.

Tears rolled down my cheek as I silently turned the song into a prayer.

Please don’t take my sunshine away, God, please. I know your mad at me, but she is fighting so hard to remain here. Can't you honor that? She's like her Grandpa...strong...fierce...

We rocked the rest of the morning away and Courtney was content in my arms having dropped my fingers in her deep sleep.  I rubbed the side of her cheek with my thumb as I began to bargain once more with God as she slept.

I traced the perfect features on her face as I begged God to change His mind and not let this be.  He could change it and no one else. That's what the nuns said. That's what my Dad said all the time.

"God allows things Mary Beth...not to punish but to build your faith..." he had said time and time again.

Ha! Daddy...I wish you were standing here right now then you could tell me why does he allow so much suffering...especially of one so very young...why? I just don't get it...I would do anything, give up anything, just DON'T allow what those crazy people in white said come true.

I drifted off to sleep. I thought I was dreaming when I  heard Jerry call my name.

“Mar, wake up sweetie,” he said in a whisper.

I sat up straight in the rocker adjusting Miss Courtney's sleeping form. I just stared at him for a minute  not sure how to tell him. Then it all came rushing forth. In my harsh church whisper voice I blurted out, “Courtney will die before she’s three, but until then she will be completely dependent on us for everything. We are getting a divorce and Jonathan will be bitter and angry for being ignored.  I hate this place and I want to go home!”

To say Jerry was startled is an understatement.  His mouth open and jaw dropped, he took off his baseball cap and slumped on the end of my bed.

“What the hell are you talking about?” He got up and reached over and gently took our daughter from me and kissed her little head pulling her against his heart. She settled into the crook of his neck still asleep even with my little outburst.

“The doctors came in this morning and gave me all the results from the tests or at least the ones they have so far. There is no answer. She can’t be fixed, Jer.  She will always be this way and they said that she would die before she was three.  How can they say that?  There has to be something we can do.”  I got up and was pacing now. I felt all the uncertainty and fear from this morning coursing through me.

“Start at the beginning and go slow.” Jerry told me. “And stop pacing, would you. You’re making me dizzy.”

So I sat back in the rocker and explained the mornings events.  It took an hour to go through everything that they had said that morning.  I showed him all the test results, all the charts and new med schedules.  We went over everything with a fine toothcomb.  I wrote down every question that came up, which were surprisingly few and far between.

During this time, Courtney woke up and we fed and changed here while we continued to talk.  She loves music, so we turned on her little music bear and placed her in the crib so we could spread the paperwork out.  Finally, there was another knock on the door and the discharge nurse came in.  She had more papers in her hands.

“These are your discharge papers that need to be signed before you leave. There is also a balance to be paid that insurance didn't cover. You can see the billing people on the way out.”  She handed it to Jerry.

He read down the columns and his face lost all color.

“This can’t be right..” His hands were shaking.  The nurse instructed him to go downstairs and speak with the billing office if we had any questions.  He told me to ask the nurse the questions we had come up with while he went to ask his questions down at billing.  He hugged my and turned to go.

“What’s wrong?” I whispered.  He smiled weakly and told me not to worry.  Just ask the questions and he would be right back.

So I spent the next twenty minutes grilling the nurse with my questions, taking notes all the while.  She left us to pack and I did that in record time.  I started pacing again and finally Jerry came through the door looking quite defeated.

“What is it?  Our insurance covers everything right?”  I looked apprehensive.

“Our insurance,” Jerry replied tightly, “doesn't come close. I called NFCU and they agreed to a signature loan to cover the balance.”

“That can’t be right,” I was pacing again and wringing my hands.  “The docs at Bethesda said everything would be covered if we came here.”

“Yes, well some of the procedures Courtney had were considered ‘experimental’ so the Navy won't cover them.” Jerry explained pensively.

“Oh, Jerry, how are we going to afford to take care of Courtney? This is only the beginning.” I said softly as I walked into his embrace.

After a moment of silence, he spoke the words of a promise that carries us to this day:

“We will love her with everything we have. We will not give up. Your Dad taught us that. Whatever it takes to give this child the best life she can have, it is what she deserves.”  He said into my hair, “We are going to do whatever it takes to make this family survive, all of us, strong and safe.  She is our daughter and we will not abandon her.”

***if you would like to continue here...thank you***

Copyright 2011 - Mary E. Lenaburg

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