Chapter 19 ~ Coming Home

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. 

The sign that greeted us at home.
Chapter 19 ~ Coming Home

The next 24 hours brought little sleep but much joy. After celebrating Courtney’s First Communion in Lourdes we packed and headed home. We made it through the 12 hour flight plus the three hour delay due to bad weather. We were reunited with our son who was so happy to see Courtney he cried and hugged her, a first for him.

Jonathan just kept staring at her, waiting for her to wake up. He was so sweet.
We dove back into daily living. Courtney returned to school on Thursday and she was still seizure free. I just kept waiting and watching to see what she would do, but no seizures. That Friday at school she took her very first steps in the gait trainer. She walked down the hall. I mean, she took actual steps! The Physical Therapist was so excited that she called me at home to tell me.

"She did it Mary! She did it!" Caroline, her PT,  was so excited. She had been working with Courtney for over a year and all she had ever done was stand in place. She had refused to move her feet. Until today.

"Did you take a picture?" I asked, hoping.

"No, I'm sorry. I was jumping up and down, then I was hugging her and she just smiled and drooled. I am so damn proud of her. Now we know she can do it, we will be in that walker everyday. It's time to get her on her feet. She can do this Mary."

I had no doubt my daughter could do many things. We were just getting started.

That Sunday, Mother’s Day 2000, we brought Courtney to church dressed in her First Communion dress including veil and her Reeboks high tops. It was good enough for Lourdes, it was good enough for St. Mary of Sorrows in Fairfax, VA. My parents met us at the church. Daddy was beaming but he looked very tired, as did Mom. We hugged and they showered love and praise on their girl.

Jonathan was so excited he was bouncing up and down. Father S. came out side to meet us. He was beaming and I mean beaming! “What a glorious day Courtney! You look beautiful, just beautiful. Welcome home.” he leaned down and kissed Courtney on the cheek.

Father S. giving Courtney her first Communion in the US.
 Grandma was right behind us. 
I looked over at Jerry and he just shrugged his shoulders. Neither one of us could believe it. The miracles from Lourdes had continued to infuse our daily life. I would not have it any other way.

When Courtney received her “second” First Communion, all I heard was the beautiful voice of that mother singing the “Ave Maria”. I could not have dreamed this moment but God knew that and He had outdone himself once more.

Life continued to move forward at a rapid pace. Courtney continued to be seizure free for the next NINE months! She laughed and smiled every single day. In August of 2000 we had our first hiccup since returning from Lourdes. Courtney had been coughing every time she ate or drank everything. She was also losing weight. A lot of weight. Her pediatrician classified her as "failure to thrive".  Scary words for a Mama to hear. After consulting with her GI team she underwent a series of test that determined her swallow had weakened significantly and she was aspirating liquids straight to her lungs and no longer protecting her airway. She was at high risk of getting aspiration pneumonia which could actually take her life.

It was recommended that she get a G-tube to handle her fluid intake. She would no longer be able to drink from a cup. The tube would also allow us to supplement her diet to increase her calorie intake to help her gain weight. We went in for surgery at Children's Hospital in Washington DC. It was a difficult one for Courtney. We discovered that she is allergic to latex when her skin began to break down rather quickly under the blood pressure cuff that had to be on continually over the course of twelve hours. She was also in a tremendous amount of pain. More pain than I had ever seen her deal with before.

All I could do was lay next to her and gently hold her whispering my love quietly into her ear. She calmed down when I sang "You are My Sunshine" as she had since she was just a baby. Once more I was standing at the foot of the cross holding my daughter begging Our Lord for respite and mercy. I prayed the Rosary over and over again. My mother would come stay with me at night and she would read to Courtney. It was a hard three days but I knew we had to do our best to help Courtney live a full life.

I was instructed by the nurses on how to replace the tube as well as the new daily care regimen that would be required for Courtney. In those moments I felt completely overwhelmed that I would make a mistake that could harm her, I would close my eyes and place myself back at Lourdes standing in front of the Grotto, late at night candles burning. I would go through all I had to be thankful for and in doing so peace would wash over me.

God is with me. I can do this. One step at a time. Accept the plan. Accept the help.

Courtney adjusted well to the G-tube. She began to gain weight but she missed her sippy cup. She would get frustrated and shake her hand looking for it. There were days that were harder to deal with than what we went through in the hospital. I hated that she wasn't able to practice a skill she had worked so hard to learn. To this day, if you place something in her right hand, she will lift it to her mouth. So I hold that hand and massage it every chance I get.

We celebrated the holiday's and in February of 2001, Courtney's seizures returned. At first they were just small partial seizures-then within a few weeks the grand-mal seizures returned with a ferocity we had not seen before. Courtney had grown two inches and had gained ten pounds, both very good things. However, with all the changes her body was having trouble keeping up. So we worked with her Neuro team and adjusted her meds. We also changed her diet fine tuning it to remove simple carbs and any processed sugar. This was a close to the Ketogenic Diet as we could get without getting her gall bladder or kidneys in trouble. Things calmed for a few weeks but then in April all hell broke loose again. We had just returned home from celebrating my Mother's 60th birthday.

This time she decided to stop breathing. There is nothing in this world that will take the fear and panic that all mothers hold DEEP in their hearts and bring it to the surface with the speed of a runaway freight train, like watching your child trying to take a breath and she can't. There is nothing that ever prepares you to watch your child turn blue, even if it has happened before. NOTHING!

We spent much of April and early May in and out of the Emergency Room. All the while, my Dad's health had taken a nose dive. He had been fighting his cancer for nine years now and his body was slowly shutting down. He had undergone five different rounds of chemo over the years and it had devastated him physically.

My Mom on her 60th Birthday with her eight grandchildren.
There are now 18 grandchildren. God is good all the time!
One day, Dad and I were sitting on the back porch of my parents new home, listening to the water fall he had installed when they had moved in 1998. It was his favorite spot to be especially when he had a rough day. As we sat in silence, I thought back to every fight I had had with my Dad over the course of our relationship. My Mom always said that Dad and I are the closest in personality out of all their children. It used to irritate me when she would point out how much we were alike growing up, but that evening it brought me peace. He had been through hell and back many, many times. He clung to his faith and was devoted to the Blessed Mother. He loved my mother with everything he had. If I could be  half the person he had become, I would be doing OK.

"I'm sorry Daddy."

"Sorry for what Mary Beth."

"I'm sorry for all the heartache I caused you over the years.I am sorry for all those nights I fought with you. I'm sorry for all the lies I told growing up. I was such a pill."

He laughed."No you weren't. You were a child who needed to figure out who you were and what God needed you to do. That's all. There is nothing to apologize for. I was not the perfect father you know. There were many mistakes made be me as well."

"How do you do it Dad? How do you stay so peaceful about all of this?"

"About what? Dying? Oh that's easy. When you have seen what I have during war, when you have seen marriages and families destroyed by people's selfishness and pride, when you have seen unspeakable suffering and all you can do is pray that God can bring some sense of peace...when you see all of that...dying doesn't seem so hard May Beth. He has given me more years than I thought I deserved. He answered my prayer and so now I walk with Him until the end."

"What do you mean Dad?"

"You know the story. I prayed a prayer 20 years ago and He said "yes". So now comes the hard part. I trust that God will take care of your mother and you kids and your families. But my time here is short."

ahhh THAT could I forget...

The night my father was diagnosed with Non-Hodgkins Lymphoma he called my mother and said "Bunny, it's the BIG C just as we suspected. I am headed home. I'll see you there OK."

My mother was stunned. She gathered her things and went straight home from work. She sat in the living room and prayed harder than she ever had before.

My father walked through the door 30 minutes later with a huge smile on his face. He gathered my mother in his arms and held her. "Be careful what you pray for honey. God really is listening."

My mom pulled back and looked at him. He sat her down and told her a little story.

When I was a sophomore in high school my Mom had gotten sick. After consulting with her physician as well as a specialist, it was discovered that my mother had a tumor in her throat. The doctors did not know if it was benign or malignant. My siblings and I were kept out of the loop until a few days before the surgery.

One evening my parents sat down with my older brother Chris and myself. She explained what would be happening and that everything would be OK. We would both need to step up and help dad while she was in the hospital as well as when she was recuperating at home. I was more than a little scared. My mother was never sick. NEVER.

She was the rock of our home. Steady and faithful, never wavering. Now she needed surgery. Not only that but she may be really, really sick.

The day of the surgery arrived and I took care of my younger siblings getting them ready for school. Neighbors were bringing dinner so that was all done. My Mom hugged and kissed everyone before she left.

After the surgery, the surgeon came out and sat with my Dad. This physician had over 30 years of experience and my parents trusted him implicitly. "Joe," he said "I have seen many tumors over the years and I have to tell you this one is bad. We will have to wait for confirmation, but you need to prepare your wife and family for the worst. I have no doubt this is cancer and she will have to undergo radiation and chemo. I am so sorry. She is resting now and will be up in her room shortly. I will let you know when the official word comes down. You need to prepare her Joe."

My Father nodded his head and shook the doctors hand. He got up and went immediately to the hospital's chapel. Daddy knelt before the altar and poured his heart out.

"Lord give it to me. PLEASE Lord. Let me carry this burden. My children need their mother so much. This once Lord, give it to me. I will carry it for her."

He remained in prayer for some time. then he got up and went to my mother. 

The next day the doctor called my father into his office. My Dad was prepared for the worst. 

"I don't know what to say Joe." he said shaking his head. "These results don't make sense to me. I had them done twice on the tumor we removed."

"How bad is it?"my father asked.

"That's just it. It's benign. It's clear. There is no cancer. I have never been wrong about this before. I have no explanation for this."

My father smiled. He knew what had happened. He never said a word to anyone about what he prayed that afternoon.

Until the day his diagnosis came...ten years to the day of my Mother's the day...

My mother looked at him that night and said "Oh Joseph. What have you done?" They cried together that evening. It changed how my Father would deal with his cancer. He was never bitter or angry about it. He just got up each day and fought for his life, for his wife, for his family.

"No Daddy I haven't forgotten. I promise to never forget the gift that God granted you and Mom."

"Mary Beth it gives every moment of pain and suffering I go through a reason. I am blessed beyond measure to bear this for your Mother, for God. I accepted His cross and His gift a long time ago. He has given you one too. I know what happened in Lourdes. I know the word he placed on yours and Jerry's hearts. Now you need to tell the story. You need to live it everyday with my Courtney. If you leave what happened in Lourdes, in Lourdes, than you are not doing what God has asked you to do. Write the story Mary Beth. God has great things in store for you and your daughter. You just need to listen to His direction."

"I've tried to write it Dad. I just don't have the talent."

"If you think that, then your no daughter of mine."

Harsh...but true words were spoken that night...on the porch...listening to the healing rush of water.

My Father's time was short and he needed me to know that I had a job to do.

Unfortunately for me...I didn't listen...

***If you wish to read here...thank you***

Copyright 2011 ~ Mary E. Lenaburg

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