Beautiful, is the short tale of my serial bad luck, and how hope, faith and love, can make everything, beautiful.

I am no stranger to hard times, I’ve had my share.

I became the mother of Roxanne at 17, finished high school, and went on to be further educated myself, while raising my daughter. I understand what it means to struggle, as I had no financial assistance from her father. I choose to view this as a favor he granted me. I look to him with gratitude. He taught me that I can do anything.

The next hard time fell upon me, when I was 25; I woke, so ill I could barely move. Two weeks later I had lost 40lbs., was admitted to the hospital, and told I had a very bad flu. So, I lay in the hospital, my condition worsening, not certain of anything, but the horrible pain that shot through my body. I am not sure if I was given pain killers, if I were, they were ineffective.

A new doctor was introduced to me, he ran tests, and concluded I had Crohn’s Disease. As I learned, about the condition, I came to the realization, that it is no treat, to have Crohn’s Disease. Through my self education, I learned a great deal about my options.

At that point, I had been taking 52 pills a day. Which, I was soon; able to lower to 36 pills a day, which soon became none.

At 27, almost two years after, I fell ill, having had nine feet of intestines removed, an ostomy bag placed, and then removed, I became blessed with overwhelming evidence of how truly loved I am.

Now, I needed to get my life started again. I hadn’t worked in a year, was still relatively ill, and was running out of money, when, I was offered a great job. The whole experience taught me, that I could not, be held back.

The next and most trying time of my life began early Mothers Day 2005. My husband Paul, my children Roxy & Adi, and I had been ill with flu during the weeks prior to mother’s day. We had all recovered, other than Adison my two year old daughter.

First she had croup. Shall we steam up the bathroom? No, my husband being a first time parent, hearing that all too familiar cough…Emergency Room trip, where they treated her, with most air, for croup.

Next she was vomiting and had diarrhea, which led us to the ER again. Where we were told, that they had been seeing some serious cases of flu, we should treat the fever, which was reducing with medication, and push fluids.

She seemed better, although not completely up to par, so, we stopped the acetaminophen, but kept her in our bed. At the very start of mother’s day she began to vomit again, so, we called the ER. It was, around 1:00am, and a Dr. explained that her temperature was still under 103 and she had been seen in the last 48 hours, so, we should keep her home and watch for any signs of symptoms worsening; Rash…high temperature…not able to wake.

By noon mothers day she was not easily stirred and in obvious pain. We rushed her to the closest ER (not the same one we had previously been to). When we arrived, the intake nurse took us back, without question. I laid her down and I could no longer touch her without causing her pain. So, I stood numb, watching an array of people, drawing blood, looking at her, each asking us, the same questions. In my heart, I knew what was wrong, but I didn’t dare utter the words.

A young Dr. approached us, and suggested she have a lumbar puncture. I suppose, he thought it sounded better then, spinal tap.

I agree. It does, but either way, I knew what was meant.

Still too numb to react, and certain my husband didn’t understanding how dire her situation was. I remained quiet, unable to get my mind around what was happening, and certainly not willing to accept, or speak of it.

There was no doctor that felt confident they could give the spinal tap to Adi. We were transported to the local children’s hospital, where my worst fears were confirmed…bacterial spinal meningitis.

My husband and I both stood numb. No reaction, no emotion. For me, it didn’t seem real, as if it were happening, to someone else. It had to be someone else. It couldn’t be happening. The crazy, wild, beautiful, child, I hadn’t been able to keep up with, was lying, as if dead in front of me.

I assume I remained numb, because, if I hadn’t, I’d have been hospitalized myself. Now thinking back on it, my heart aches, my eyes burn, and the tears come. It is still so painful and real to me.

As we waited, for the PICU room, my mother suggested we go home and get some clothes for ourselves. My husband and I didn’t speak to each other, at all. He called his mother, and, as he explained, what was happening, he began to cry. It was as if, it wasn’t real, until one of us spoke the words. He had the courage, to speak them. The tears flowed; we clung to each other, and packed our bag.

Upon our return to the hospital, we faced our motionless child; asking no questions, just waiting, until finally, a nurse appeared to take Adi to her room.

The rules state, children are to enter the PICU alone, all treatments to be administered, and the child made comfortable. As we approached the PICU, I began to ask the nurse questions. To which she simply responded “There is nothing you could have done to prevent this. This is something no one could have foreseen.” I started to sob. When we reached the PICU, I was to stay at the door. I hadn’t complained, but the nurse said “if everyone else is willing to stay back, you can come in.”

We entered the room, notices were posted everywhere, and I began to look at them. “Contagious wear gloves and masks” I had never noticed the masks and gloves on people; until that moment. The room was made ready, everyone flooded the room, and I can’t tell you another thing that happened until I crawled in the small bed and held my daughter.

I ‘m not sure if it was the next morning or later that day, but I woke up and had to list the people that needed treatment, due to contact with Adi. The doctor taking down the names is writing slip after slip after slip, and finally turns to me, sighs and states, “You have far more friends than I do.” I returned “Most of them came to see her because she had been sick.” She said, “Wow, a two year old has more friends then I do.”

There I stood smiling, at a group of people, trying to heal my daughter, seeing for the first time, just how human they are. Each day I noticed it more and more. I felt helpless, and each morning when she didn’t wake, I could see the helplessness radiate from them, in the form of pity, I could literally feel their sympathy. It hurt more, than seeing Adi. It told me she was not going to wake up.

I lay down and held her as often as I could stand to lie down. During the first four days in the hospital, we left the room only when we felt Adi was safe. When she was with Roxy, the grandma’s, the grandpa’s, my sibling’s or Paul’s brother,

We went down stairs to smoke, each time feeling horrible, about Adi. It is so sad to say, but others doing so poorly, made us feel fortunate. Our hearts and prays went out to each person we encountered, we hoped and wish for only the best. I know that we received the same saving grace from each of them. I never had the strength, to check the status of the others. I still harbor that regret. (I feel guilt due to my inability, to reach out to others, when in pain myself.) I still hope to some day outgrow my selfishness.

At first in shock and later in shock and pain; I think that it hit, both Paul and I, at the same time. Adison was going to be fine. I felt it as certainly, as I feel the keys beneath my fingers now.

We met friends in the parking lot, smoked, and had a beer. Talking, of my babies face, and how it looked as, if she were Rocky Balboa, without the bruising. Her face was so swollen, even her eyes, but I could see my baby. I knew she was there, and coming back to me. I could feel it.

We had left Adi with the nurses. They were bathing her. We had burgers from vending machines. We had chips and Coke’s. We re-entered the room. While we sat around eating, Adi woke up, and said “Chips”. She had a bottle of diet Coke. And bag of chips. She was awake, eating and drinking…my heart leaped…It leaps now.

Soon after, she was playing in bed. She was happy, through all the pain, she was happy. My wild thing came back to me…to us. I swore at that moment, I would never bitch about how crazy she was, again.

She was tested for hearing problems, before leaving the hospital. She was sobbing and not helpful for the testing, therefore the results were not conclusive. But she was responsive and, the Dr.’s, nurses, Paul and I knew she could hear.

Two weeks, after her release, she couldn’t walk. She couldn’t talk. She couldn’t even hold her head up. Adison had become a newborn again, and by the end of June, we knew she was deaf.

On June 31st, our neighbors invited us for dinner. We were three houses down the street. We returned, to find our house on fire, and our dogs trapped inside. Paul ran in and tried to put the fire out with our garden hose. I found our big dog the basement, and brought her outside. Our small dog was found by rescue workers. They tried to revive him for 15 minutes. I stood in tears, and walk back to my neighbor’s house.

We went to our vacation cottage, for a week or so, but Paul needed to return to work and we needed to find a place to live. We stayed with my parents, for what remained of the summer.

We had one problem after another, with the contractor repairing our house, so, we began to look for other houses. We found a beautiful house. It is slowly becoming our dream house. It took 9 months for this contractor to finish the house, after the fire. It should have taken 3 to 4 months.

In the mean time, Roxy had flunked her second year of high school. So I had to get her into this computer based school. It was a fight, but one that I had to win, and I did. I went to the school on the first day of classes, with Roxy and Adi. I asked to get her signed up, and was led to believe that it couldn’t be done until her old school signed the paper work.

I had been arguing, with the current high school all summer, to no avail, but on the first day of classes, at the new school, I took Adi in, and let her loose. She was running and screaming, and pulling books off shelves. And as if by magic, Roxy was enrolled. She started classes that day.

Roxy has excelled in her new school. She has managed to almost completely catch up over the last year and a half. She may be able to graduate on time.

As for Adison, there wasn’t much offered to a two year old. We couldn’t get her into speech therapy. There were 6 month waiting list, so, we sent her to Head Start, where she received weekly speech therapy with her class.

When she turned three, we were able to enroll her in pre-school with our local school system. Two months ago she began to respond, with terror fits upon entering the school. It began to interfere with her outside speech therapy and hearing aid tuning appointments. She was not willing to be left alone with anyone. So, I had no choice, but to withdraw her from her classes. I am now teaching her at home. She is doing well. Her speech improves everyday. She is once again doing well with her hear aid and speech appointments. She is going into a room alone again in both cases.

Through the past 18 years, I have been tested. I think that I have made errors, but I passed. I know I can do anything, and can not be held back. I am strong because in the end I know everything will be beautiful.

I was born on June 23,1971, in Youngstown, Ohio. I am the mother of two Daughters, Roxanne and Adison.
 
 

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