Plan For The Future But Live For Today
I can remember so clearly my daughter Arielle’s 12th birthday party. So much preparation went into it. It was a sleepover. She wanted to invite everyone in town. We decided on 12. The girls politely endured all of the activities that my wife, Tracey, had prepared for them. By 11:15pm Tracey and I passed out from sheer exhaustion. This is when the party truly began…
Even in my coma-like dream state I could hear girls giggling and running up and down the stairs all night long. They sounded like 12 kittens at play. These 12, mild mannered girls played so hard that by morning they were all passed out in the den. Our plan of cooking pancakes, eggs, and bacon was completely scrapped. It was a wonderful event. I can still remember the look in my daughters eyes after the party. She was so happy.
The next day Arielle started complaining of stomach pains and began having excessive bowel movements. This was followed by vomiting. Soon she could hold nothing down, not even water. We went to her pediatrician who told us that it was a stomach virus. Arielle’s stools began to be filled with blood.
We soon found ourselves in the emergency room, beginning what would become a year long ordeal with ulcerative colitis. By the third emergency hospital visit in a week, we were no longer buying it. Something serious was going on. Tracey demanded to see a gastro-intestinal specialist. This doctor immediately had Arielle admitted. Within 2 weeks she had lost 20 pounds.
Initially, Arielle was being treated for a “superbug” called C-difficile. Her symptoms were quite severe. She had extremely high fevers (102 to 104+), severe diarrhea ( severe is considered 10 watery stools a day; Arielle had over 20), she also experienced severe abdominal pain. She was dehydrated and malnourished.
After treating the superbug, Arielle didn’t seem to get better. A scope of her colon was performed. This is when her ulcerative colitis (UC) was revealed. The reason it took so long to diagnose is because the C-diff symptoms were almost identical to the UC symptoms.
In any event, the year was filled with several hospital stays, the longest being 6 weeks. Arielle, at one point, was taking about 17 pills a day. As a last resort, she was put on a drug called Remicade (used for Rheumatoid Arthritis) that had proven to be effective in a high percentage of Crohn’s and UC cases. Unfortunately, it didn’t work for Arielle. Her surgical team decided that she had to have 4 feet of her large intestine removed, basically all of it. ,
On the day of her surgery, the entire family was present. Mom, Dad, Step-Dad, Grandparents, Aunts, Uncles, Cousins, were all there. Arielle was taken down to surgery. The 2 hour surgery stretched into over 4 hours. We were all on “pins and needles.” Finally, the phone rang and we were informed that Arielle was on her way back to the room.
We were all there awaiting to “support” her in the remarkable battle she had faced. The tears began to stream down my face as I recognized something in her eyes as she looked at me… looking at her… looking at us…that supported everyone in the room and in the hallway…
The thought that this small child, after facing major surgery of this magnitude, would seek to comfort those that were there to comfort her was more than I could bear. This appeared to be the general consensus as I could not find a dry eye about me.
The Post Surgery Nursing Team hustled around and connected Arielle with IV’s and tubes running to machines on both sides of her bed. They prepared the pain medication that was going to be necessary after the morphine and anesthesia completely wore off from the surgery.
The operation was a success. Arielle’s large intestine was safely removed. The surgeon created a “J-Pouch” that will one day serve to function as her large intestine used to. He also created a “stoma” so that Arielle’s digestive system would continue to function outside of her body culminating in a colostomy bag.
I’m not going to tell you that it was easy going. The post surgery pain she experienced was incredible, even with all of the pain medications. There were also many setbacks, far too many to name, that turned what should have been a 1 week surgical procedure into a 6 week hospital stay.
Arielle’s nurses taught her how to properly care for her colostomy bag and stoma. After 6 weeks she was released. She is now awaiting her 2nd surgery, scheduled in December, 2010, to reconnect her intestines and “get rid of this “darn bag .”
It has been a long ordeal. Arielle hasn’t been in school since last March, 2010. It is now November, 2010. Her mental state through all of this has been incredible. When asked about how she was able to keep such a positive attitude about it by hospital child psychologists, Arielle remarked, “I never saw myself as being sick…it was just a “thing” I had to go through while waiting to return to myself…”
Arielle has matured in ways that I can’t even begin to explain. She is far more serious about life, almost “adult-like.” I wish I could tell you that I taught her something about life during this trying ordeal. The truth of the matter is that I have learned from her…
I have learned what is really important in my life. What’s really important is spending time with your loved ones. We take so much for granted. Careers that mean everything diminish in the face of tragedy. My wife took a medical leave from her job as a librarian and practically “lived” at the hospital for months. Money, houses, cars…it all means nothing when measured against the ones that you love.
Family members and friends from everywhere stepped in and showed support and concern. Even the hospital staff at Scottish Rite became pretty much like an extended family. We could not have made it this far without everyone involved. We are so thankful that Arielle made it. There were children on the same hospital floor that didn’t.
My family and I have learned to appreciate each and every day afforded us. We are determined to “live each day” as it presents itself to us. We plan for the future but live for today. Don’t wait for a medical event or some unforeseen disaster to take place in your life before you realize whats really important.
Spend quality time with your loved ones now, today. Tomorrow isn’t promised to any of us. Tell your son or daughter how important they are…today, and how much you love them…today. Hug your spouse and realize that this is the only day you have. Ask them, “What can I do for you…today?” If you ask any of my family members what’s really important in our lives…we’ll tell you with no hesitation , “spending quality time with the ones you love.”