Queen Kelley

Ulcerative colitis (UC). When I told Butterfly she has it, she giggled and said, “That’s a silly name!” She’s dealt with diarrhea and minor bleeding for nearly a year, so the introduction of a name makes little difference to her.

Yesterday, I received a call from Dr. GI’s assistant, who told me the definitive diagnosis. They want Butterfly to begin taking a maintenance medication called Apriso, whose purpose is to keep a person in “remission” from UC. This means people take it to keep their symptoms at bay and control inflammation. In two weeks, Dr. GI wants to see the three of us. If he thinks Butterfly has made no progress, he will put her on a short-term steroid to get the condition to the point where we can maintain remission.

Of course, we’ve consulted the great Internet to research this disease, explore its implications, and learn more about the treatments. As with any health problem, treatments and symptoms range from mild to extreme.

We are glad Butterfly’s problem is diagnosed so early, but also sad that she will likely live with this condition and be on medication for most of her life. We are grateful that UC is at least treatable and, with good care, not life-threatening, but we are heartbroken that our little girl has to deal with this at all.

I let my mind wander into the future, when her digestive issues may cause her emotional as well as physical discomfort and embarrassment. I think about the possibility that she may have to undergo surgery in her adult years. I wonder what kinds of side effects the medication may cause, even years from now.

Believe me when I say we are so thankful for a happy, otherwise healthy child who is blissful and relatively oblivious to the seriousness of her problem. We know that much, much worse illnesses and diseases strike too many children to name. Even so, please understand that we still grieve for what she has. To one who dearly loves a child, any problem is one problem too many.

Thanks again for everyone’s comments, support, prayers, and love. We’ll take care of Butterfly, and she’ll be fine regardless of any obstacles her condition might put in her path. And I have no doubt that she’ll take care of us too. She already does.

How do you prepare a five-year-old child for a colonoscopy? You don’t say, “Sweetie, the doctor needs to check your colon for growths, bleeding, or other irregularities. He will sedate you through an IV and stick a thin, flexible probe up your rectum so he can take pictures and biopsies. In order for him to do this, your colon needs to be completely clean, so Mommy and Daddy will deprive you of food for more than 48 hours. You can only have clear liquids, gelatin, and a limited number of popsicle flavors during that time. Oh, and you’ll also have to drink an over-the-counter laxative every two hours until your bowel movements are runny and clear. Okay?”

No. Instead, you say, “Sweetie, the doctor wants to take pictures of the inside of your tummy. We want him to be able to see everything, so your tummy has to be clean. It can’t have food in it. This weekend, you get to have special things like all the juice you want, popsicles, and jello! We’ll mix a special medicine into your juice to help you go potty. On Monday, the doctor will help you fall asleep so he can take pictures, and then we’ll go home and you can eat! Okay?”

The King and I bore the burden of knowledge for more than a week without telling our daughter. We wondered how she’d take it. I, for one, am grateful for a husband who took Butterfly aside on Saturday morning, cuddled her in his lap, and gently relayed the news to her. From her reaction, you’d think he’d offered her a trip to Disney World.

GG, the King’s mother, came to take Ladybug away for two nights. Without her sister’s competition for attention, Butterfly thoroughly enjoyed her two full days of having Daddy, Mommy, and Nana (my amazing Queen Mother!) all to herself, complete with new activity books, food coloring to mix into shaving cream, a new movie, a fresh box of colored chalk, and plenty of one-on-one time with each of us in turn. She drank her Miralax-laced juice like a champ, handled the resulting potty trips with grace, and suffered through a few bites of jello and sips of broth. Only on Sunday evening did she begin to complain of an aching belly.

By the time we made it to the hospital on Monday morning for our 8:30 check-in, our girl was puny. She rarely spoke, grew listless, and fell asleep several times as we waited in our little corner of what eventually became the recovery room, along with five other children getting upper GI scopes. One by one, the kids went away, got their IVs, and returned, only to leave again on their rolling beds for their procedures. A kind nurse came to give and get information, noted Butterfly’s condition, and quickly ordered fluids for her IV. The King carried her back for access, and later he reported that once her beloved Mickey Mouse got his IV, she took hers well. Apparently, the “magic cream” they rubbed at the site made the needle stick painless.

The fluids perked her up a little; she watched the Disney Channel while we waited for her turn. Nothing prepares you for witnessing powerful drugs put your little one to sleep. Even so, Butterfly (and her parents) did well. After the brief procedure, the doctor (whom I’ll call “Dr. GI”) spoke with the King and me, telling us about his findings. Unfortunately, Butterfly has some form of colitis. We are waiting for results from the biopsies Dr. GI took, which will help him determine between ulcerative colitis or Crohn’s Disease. He thinks colitis is the most likely diagnosis, which involves less of the digestive system than Crohn’s.

We were all surprised, considering Butterfly’s healthy weight, eating habits, and active lifestyle. Dr. GI said the lining of her colon bleeds easily and sloughs off. We saw pictures, and the problem is obvious. Basically, this is worse than we expected but not as bad as it could be. Medication can help control the chronic condition, and she will likely have a thriving adulthood. With good treatment, Butterfly can avoid any complications from the disease. I know enough about childhood afflictions to be grateful for something treatable.

The King and I are still trying to process what we learned. Of course, our consult with Dr. GI once the results come back will help. For now, we enjoy watching Butterfly as she enjoys life—creating her artwork, making “soup” outdoors from various nature items, playing with friends, telling us about her days at school, and aggravating her little sister. For now, we live.

Yes, it’s been a long time. Personal writing is not a priority in my life right now. If it were, I’d take time to do it more often. The good thing is I’m okay with that. For now. On to the post…

We’ve all been there: bearing a burden for days at a time, maintaining relative control of our emotions, moving through life as usual despite the knot in our stomachs. And then we reach the boiling point.

For me, it was last Friday morning. In December, I wrote generally about a medical issue Butterfly faced. Since then, the King and I have debated whether to go through with the recommended test. Meanwhile, Butterfly continued to have sporadic episodes of diarrhea and bleeding. We finally realized that the colonoscopy, a test most people don’t think about until they’re fifty, was necessary for our five-year-old. (Check back for more regarding the test and results.)

So there I was on Friday morning, after a week of knowing the scheduled date for the scope, mentally preparing myself to deny my daughter food over the weekend, and it all boiled over. The girls were dressed for school, and I looked forward to the much-needed three hours of work time before the trials of the next days. We needed to leave in ten minutes. Then Ladybug, nearly ready to claim her place in the “Trying Threes,” refused to let me comb her hair. She also refused to comb her own hair. She whined, she resisted, and she attacked. Eventually, I calmed her. At the door downstairs, though, she refused to put on her shoes and had another meltdown. After buckling a placid Butterfly into her booster seat, I returned to the house to get my wailing younger daughter. At long last, my heart pounding in frustration (it was, after all, 9:00, and we were supposed to be at school), I sat at the steering wheel. Unbelievably, the car wouldn’t crank, apparently the result of a door left open for hours the day before.

That did it. For perhaps the first time, my girls saw me cry. It silenced their argument. I tried unsuccessfully to phone a friend, and then I just sat there struggling to compose myself. Several minutes passed, and then Butterfly said calmly, “Why don’t we just get out of the car?”

We did. We went inside. I was able to reach my friend, who graciously came and drove us to the preschool thirty minutes late, where dear, sweet teachers welcomed my girls with smiles and open arms. I got more than two hours to finish editing an overdue book for my supervisor.

For some, exceeding the boiling point is healing. It was for me. I spilled out the rough bits and discovered smoother waters beneath. Thanks to the physical release of sobs and the rescue of a priceless friend, I was able to move ahead with the path awaiting me. Sometimes we have to reach the boiling point before we can go forward. When I do, at least I have a little observer who puts life into perspective. Check out the picture Butterfly drew to capture the moment. Ladybug sits in the back seat. I’m in the front. Butterfly, my hero, stands outside the car, using her long super arm to try to push the vehicle out of the garage. “It didn’t work,” she told me. But look at her smile. She reminds me that, even when it doesn’t work, it will be okay.