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.
**authors note: there will be jumps of time as we move forward with this story. It is meant to show a progression of events instead of a perfect time capsule. I will mark the year/month whenever that happens.
|Miss Courtney with the giggles…|
Chapter 9 ~ Grandpa’s Miracle…
Courtney came home after a week in the hospital and did not suffer any long term affects from the accident.
In August we celebrated her first birthday. We had survived Courtney’s first year. Looking back, it was no small feat. After a year in the apartment we moved to a rental home for our remaining time in DC. Time passed quickly. Courtney’s seizures stabilized due to the diet and she only took one anti-seizure medication, Depakote. Once placed in a seated position, she was able to sit on her own for as long as 15 – 20 minutes, She did not roll over or pull herself up. Her upper body strength was negligible. We continued with school and therapy.
Most days, she was a happy little girl.
I was still struggling. I had now gained another 25 pounds-pushing that scale higher. Even though Jerry and I had begun to talk more about things, he was gone all the time working on his first Masters Degree. I felt extremely isolated.
No one had a family like mine. None of my brothers or their new wives understood, not even my parents really got it. I stayed home and baked, sewed, read and cared for my home. If I wasn’t home, I was shopping trying to fill the emptiness in my soul.
Finally, Jerry urged me to do something for myself. So I got a part-time job at a local fabric store. It was a life saver. I was around adults again and it had nothing to do with therapy or doctors. I loved my job and Jerry loved the paycheck. Things were looking up.
We continued to be regular churchgoers. My parents and the nuns had taught me well. I knew I was supposed to be there, but really didn’t feel like God was on my side. One night, I stumbled upon Jerry looking at pornographic web sites and it made me feel so incredibly worthless, unloved and unwanted.
I can’t blame him, I was not the woman he had married. I look more like the Michelin Man.
We couldn’t seem to get ahead finacially. The Navy didn’t cover Courtney’s private therapy or her equipment co-pays. We had to purchase special food and other personal care items to support the Ketogenic Diet. My parents loaned us money to pay off some of our bills and we arranged a payment plan with them. Once again, we worked hard and we paid them off in time.
Jonathan’s struggles escalated and we finally took him to a counselor. We were lost and completely unprepared for caring for a profoundly disabled child or an emotionally distraught older sibling. If someone looked at him or his sister cross wise, he would hit them or bite. He had no place to put all of his fear and anger. I am amazed at what Jerry and I put him through trying to deal with our own confusion and grief. He moved from pre-school to pre-school, private to public as we tried to find the right fit for him. He was so lonely and filled with hurt. He was desperately trying to get his parents attention. To get as much love from Jerry and I as he felt his sister was getting.
The counselor was a young happy nun who smelled like chocolate chip cookies. Jonathan talked with her a few times and drew lots of pictures. Every picture Jonathan drew was a superhero. He was obsessed with them. He wanted someone to protect him from everything that was out of control in his world. At $200 a session, paid out of pocket, we couldn’t afford to keep seeing her after the six months. I read books on child development and emotional distress to try to gain insight into how I could help my son.
I needed a superhero too. I didn’t know how to help either one of us.
For awhile things were almost clam, almost “normal” whatever that was. The diet was working. Her seizures had dramatically lessened, and we were seeing steady but very slow progress in her development. She had regained most of the skills she had lost with her allergic reaction to the ACTH, but we could not seem to push her past the 7-9 month mark.
|Grandpa Green and Miss Courtney enjoying a nap together…|
Courtney began having difficulty once more with seizure control the summer she turned three, August of 1995. The seizures were harder and more violent this time and she would stop breathing for 1-3 seconds at the beginning of them. That was something new that we had not seen since those very first seizures in the hospital three years prior. She was turning blue during the first 20-30 seconds of every seizure. She was having 6-7 seizures a day lasting anywhere from 4 minutes to 22 minutes. It was a new level of stress trying to handle her care. She was with me 24/7. She slept in our room so I could care for her easier in the night.
Jerry and I felt the early predictions made by the Hopkin’s team were coming true. She was struggling everyday and I was convinced she would not be with us much longer. I didn’t think her body could take much more. Jerry and I began to quietly plan her funeral and make sure we had everything in place should it become a reality. There is nothing that will take you to the very edges of insanity like planning your child’s funeral.
Three days before her birthday, she became very ill. She was throwing up and I couldn’t keep anything in her including her meds. So we brought her to the emergency room, and and they admitted her immediately, thinking she had the flu.
They began IV fluids to try and rehydrate her. She seized time and time again. The grand-mals were lasting longer and longer. There was no rhyme or reason to them. We were getting more nervous by the hour.
The end was coming.
The doctors had determined that Courtney was having a gallbladder attack due to the high levels of fat in Ketogenic Diet. We knew this was a possible side affect, but were told it was a rare one. Courtney was proving to be one of those kids who like to challenge the medical community always dabbling with “rare” side effects of various drug interactions and medical procedures. She had been on the diet for two years and her gallbladder and liver were beginning to show signs of wear.
They finally got the seizures under control in the ER and sent us up to the floor for further tests and observation. They did not want to take her gall bladder since she was so young, so we settled on a new treatment plan to try and save her organ. They were in consultation with Hopkins over wether she could withstand the diet any longer. We didn’t have a lot of hope in that regard.
My Dad came to visit her the second night in the hospital. He and Courtney had forged a close bond in her three short years on earth having gone through so much together. He was in the middle of another chemo, this one a little less invasive than the last round he had been on. He had lost weight, was losing his hair again but always seemed to have a smile on his face and a joke at the ready.
“Life is precious” he said. “Not one second was to be wasted.” I wished I could embrace the struggle like he did.
|Grandpa and his favorite 3 year old…|
While he was there Courtney went into a very hard fully involved, grand-mal seizure. Alarms started blasting. She was turning blue. Her oxygen levels were dropping fast. One minute went by and another. Her color came back some but she was still in heavy convulsions. Her oxygen stats were in the high 80’s, then low 80’s then they hit 79, 78 and were dipping lower. Her body was stiff and rigid, her limbs pulsing without bending. She was surrounded by nurses and the head pediatrician on duty that night. Neurology was called in as well as Gastro.
My father stood holding my hand, as we were helpless to do anything. After 10 minutes of hard grand mal seizures, the neurologist turned to look at me. I will never forget his expression.
“Mrs. Lenaburg, we are doing everything we can. We have given her as much Valium as we can without causing further damage. This is such a hard seizure and she was without oxygen for a whole minute. If she comes out of this, you need to be prepared for her to be in an altered state.”
Altered state? What the heck did that mean?
Before I could verbalize anything, my Dad took three steps to the side of her bed. The side rail was already lowered so the nurse could get to her easier. He got down on one knee close to her ear and yelled “That is enough young lady! No granddaughter of mine is going to give up without a fight. Now stop this nonsense and look at me.”
There was silence in the room accept for oxygen level alarm and the blip of the rapid beat of her heart.
It seemed even the staff was holding their breath.
All of the sudden, Courtney opened her eyes and took a huge breath. Her body began to relax and she turned her head and looked right into my father’s eyes taking ragged breath after ragged breath gasping for oxygen. My father kissed her all over her face and kept encouraging her to keep breathing. She was his girl, a fighter.
“Amazing” said the doctor right next to me.
I said nothing. I couldn’t. I had just witnessed a freaking miracle and those didn’t exist in my world. My father stood up and backed away from the crib so the doctor could check vitals and see what shape her lungs were in. Her oxygen levels were back in the high 90’s within moments.
Dad put his arm around me and and said “God gives and He takes away, Mary Beth. Today He agreed to let her stay with us awhile longer.”
He assured me that everything would be OK. We had been in this place before. It was not time for my daughter to die.
“How do you know God is on your side-Dad with everything He has put you through? How do you still believe?”
Their were still doctors and nurses buzzing around her bed, so my Dad took my hand and lead me out of the room. Once in the hall he lifted my chin to look at him, like he used when I was a little girl.
“What’s going on in that head of yours Mary Beth? Why would you question God in such a way? How long has this been going on.”
Blunt and to the point. The man had a gift.
“Daddy, I have done some bad things in my life. I don’ think that God is very happy with me and I think He wants me to pay for those wrong choices. I am so pissed that He is allowing this to happen to my girl? Why Dad? Why Courtney?”
“Mary Beth, what have you done that is so bad you would thin that God would punsih you in such a manner? What? Tell me.”
I looked down at my shoes. I couldn’t do it.
“Tell me. Now please.” My Dad was not known for his patience.
It all came spilling forth like a geyser at Yosemete. Full bore eruption.
“Daddy I can’t have more babies. I got my tubes tied. I told God no more. I did this to her. Jerry and I weren’t chaste Dad, we weren’t. I got pregnant before Jonathan, before we were married. I lost that baby because I screwed up Dad. This is all my fault. I am sorry to disappoint you but I have screwed up big time. He is mad and He knows the only way to hurt me is through the people I love. That’s the God I know.”
“Sweet Jesus Mary Beth!”
Yep, I was done for…I couldn’t even keep eye contact with him.
“Look at me young lady. Look at me.”
I raised my tear stained face to his. “I’m so sorry Dad. I don’t know what came over me. I know this isn’t the place. I just…it just came out. I am so sorry.”
“We have all done bad things in our lives. We’re human. He knows we’re going to screw up. There is nothing that you have done that would MAKE God hurt you or your daughter. How could you ever think that? Oh Mary Beth, it doesn’t matter. None of what you shared matters. I know what happened. I’ve always known. You mother was worried you wouldn’t be able to get past it, so she told you not to talk to me about it. You get stuck sometimes and we were worried. We thought it was best at the time. I love you. God loves you.”
He pulled me into a bear hug.
“Then why Daddy, why did this happen? Why, my daughter? Why?”
“God doesn’t work that way. He doesn’t always give us the why. He loves you. He loves Courtney. He hung on a cross and died for you my girl. He already paid the price for those sins of yours and mine as well. He wants nothing but the best for you. Suffering happens because we live in a world full of sin. Suffering draws us closer to God. He allows it so we grow in reliance on Him and His grace. He doesn’t punish the innocent Mary Beth. Why NOT Courtney? Don’t you see? Courtney has a job to do to. He is calling her into a deeper union with Him. There is something special she needs to do for Him. It’s not all about you.”
He chuckled. “Wow! You better get your pride in check my friend. It is causing you nothing but trouble.”
Nothing like a little spiritual smack down in the hallway right after God has granted your child a miracle. Me and my pride have been at war my whole life. This was just one more battle lost.
That was Dad though. Direct and to the point. I loved and hated that about him. I had to sit with what he said for awhile. I had been so angry for so long,
When the Docs gave the all clear we went back in and Dad scooped Courtney out of the crib and held her for a long time talking quietly about how strong she was, how special she was. She was his eldest granddaughter and she was a Green…a fighter to the bitter end.
“I am here for you little girl. My pain for your pain. You are not alone.”
I just stood there shaking my head in disbelief. I had gotten it all wrong. All this time…so wrong…
Watching my Dad hold my daughter, praying over her and consoling her, changed me. It changed my heart. I had to figure out where to put my anger and fast. I needed to figure out how to make this right.
Courtney spent her third birthday in the hospital. The Gastro team determined she couldn’t process the high levels of fat anymore. It was time for a change in diet. Another twist in the road but not unexpected at that point.
They released us two days later. They wanted to allow her body to rest a bit before beginning to mess with her meds again. Within a few weeks we were on a new drug regimen.
Time moved forward and we did our best to meet the needs of each of our children one day at a time. I started to meet with a group of women each week for a bible study. I began to speak to God again, in slow exasperated spurts of prayer and occasional thanksgiving.
It felt awkward at times but my Dad continued to be my champion asking each time we spent time together “So how the courtship going?”
“Funny Dad. I am not dating Jesus. You’re so weird.”
He would laugh and comment “I don’t know why not. He’s the best date a gal could have. As for me I think His mother is beautiful. She and I are like this.” crossing his fingers.
The following year Jerry received new orders and within the month and it was time for another move. After three years home we would be back in the deployment cycle again.
I was terrified.
How was I going to do this all by myself? God had shown His face and I had no choice but to sit up and pay attention. Now who was I supposed to be mad at?
Copyright 2011 ~ Mary E. Lenaburg
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