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Friday, November 20, 2009

Uveitis ~ When Your Child has a Chronic Illness...

Whatever it takes

It was late, past 11 o'clock, when she came bumping down the hallway. Her head was tilted to the side, she had one wrist to her forehead, and her other hand trailed the wall. I was curled up on the sofa, reading.

"What's wrong?" I asked, as she came to stand in front of me with a serious look on her face. The look kids get when there is something on their mind that's keeping them up at night. Something they've thought over that's rolling around in their head. "Are you sick?" I asked. She shook her head no. I could tell she hadn't been asleep yet. "What is it?" I asked. Her answer changed everything. It changed me, and her, and our family and the way we view the world and my faith. It took us places I couldn't imagine, and gave us experiences we would find nowhere else and that we might not even take back if we had the option.

"Mommy, are you always supposed to see out of both of your eyes?" She was eight, and that's what she said that changed the whole world. She had been for new glasses not two weeks before so my answer was swift, "What do you mean, your glasses aren't working?" I asked. "No mommy, I asked Gabby (her best friend) at school, and she said she can always see out of her eyes. I can't."

I grabbed a magazine and flipped through it, selecting a two page sale ad spread, featuring a red mini van surrounded by the Rugrats. Angelica, her favorite, stood right out. "Which eye is better" I asked. She pointed to the right one. "Cover it" I commanded. I spread the magazine wide and stood across the room. "Can you see the picture?" I asked. She shook her head no. "Tell me what you see" I said, walking slowly toward her, finally settling the magazine in her lap. Fear settled in my belly. "What do you see now?" I asked, as I wrapped my arm around her shoulder. "A pink circle" she said. With the other eye, she could see that it was a vehicle, but couldn't make out details, even with her glasses on.

"Okay" I said, in my mommy tone, the setting things straight tone that all loving mothers develop after a few years. You know the one, "Okay, go to bed" "Okay, don't hit your brother" "Okay that was good, try again." So, I sent her to the bathroom to brush her teeth. I don't know why tooth brushing, but it came to mind, and she didn't ask why. She's my river child. As soon as the bathroom door shut, I called my husband at work on the night shift and began whispering feverishly. "You need to come home, Kelsea can't see and it's really bad. I don't know what's going on. You need to come home. No, nothing is in her eyes. No her glasses are fine." He was confused, he kept talking and asking questions but my mind wasn't working. The water in the bathroom stopped running. "I need you, come home now" I whispered. Then I hung up on him.

Some children are sweet and simple. They take to life like a giant rubber inner tube does to a lazy river. They don't cry much as babies and they enjoy what you put in front of them, be it an interesting toy, or a set of car keys. Other babies fight to learn to walk, pushing their mother away in their eagerness to find their footing. They scream in the grocery store and insist upon their way. Not a river baby. You might have to coax her with a sip of root beer to get her to her feet. She's happy to ride in the grocery cart, smiling at kindly strangers. Butterflies will land on her head and perch there long enough for you to take a lovely photograph. Life for her is warm and interesting and it will come to her when it's ready.

That's my Kelsea. The oldest of my three. My Hakuna Matata child.

The opthomologist began treatment immediately after his diagnosis, applying drops to her eyes as he said, "10 years ago, people simply lost their vision due to Uveitis. Today there are options. We'll start with steroid eye-drops to lessen the inflammation and atropine to dialate her eyes. We don't want them strained and working too hard."

Ten years ago, I was a Sophmore in high school dating her father. At that moment, as a young parent with an 8 year old kid who had suddenly gone virtually blind, the doctor's initial evaluation was daunting. I was lost in worry. I wanted to throw up. I had put on lip gloss and combed my hair into a neat pony-tail and adopted the calm, alert, professional demeanor of bank tellers and doctor's office receptionists, mixing it liberally with my mom persona to come up with the woman sitting in that opthomologist's office. I had done this with great thought, in order to generate appropriate and non-hysterical responses. "Okay, then what?" I asked calmly.

At the time, we were renting a semi-dilapitated home surrounded by vineyards. Scrimping and saving and dreaming of the day we would buy our own home. I visualized flowerbeds full of perennials and bird houses on posts covered with climbing clematis. The kids could pick any color they liked for their bedrooms and I would have parties, setting tables just like you see in "Home & Garden" magazine.

Before Uveitis, I didn't have my you-know-what together. I was that mom who brought the dog to the vet the day the kids were due at the pediatrician. I spent the whole day finger painting with them, and ended up rushing to make canned chicken noodle soup for dinner, because suddenly it was 7 o'clock. I saved every piece of artwork they made at school, but couldn't find their birth certificates. I always had a camera with me. My friends called me the "cub reporter" and "the picture mom." My closet shelves were stacked high with boxes of pictures that I had never put into albums and I had huge pickle jars full of unprocessed film. I wore Pooh bear sweatshirts, and my sneakers were falling apart. Life was peanut butter and jelly with no holes in the bread. My husband seemed surprised at his choice of wife, shaking his head at the overloaded laundry hampers and paint splattered children. But I was oblivious. I made mud pies in the driveway when it rained. In many ways, after settling down at the age of 18, I was growing up with my children.

The first year there were over 40 eye doctor appointments to our regular opthomologist, 8 or so at the big hospital in Rochester, and several out of state. We spent more time in doctor's offices than at home. If I could string the empty bottles of eye drops together, I think they would reach the moon, or Disney land, or at least to the Statue of Liberty.

I got a $5 organizer from Wal-Mart and planned our days. I kept every little appointment card, and could pull them out to prove my appointment times when the doctor's office messed up and thought I was there on the wrong day. Kelsea and I learned who the best blood drawing person at her pediatrician's office was, and scheduled her bi-weekly blood draws specifically with her. I discovered that HIPPA meant the results didn't get to her doctors in a timely fashion, and delivered copies manually.

Kelsea's eyes were poked and prodded and evaluated and exhausted. Nobody could tell us what caused her uveitis, or what her outcome would be. She couldn't read print well. Sometimes she could see and sometimes she couldn't. Her disease is strange like that. Little tiny cells filled her eye, like a sunbeam full of specks of dust. "I see white spots, falling down" she would say when asked. I imagined a snow globe, and tried to keep her from being shook up.

Finally she hit an emotional wall, and we had a nasty fall-out over the application of her drops. She was a little kid who was tired of being sick, and tired of being on multiple hourly medications. That frustration came out in a heated screaming-mimi one evening. She lost her temper over the way I applied her eye-drops. To my shame, probably because I was a young mother in somewhat over her head, I too melted down, and shouted, "fine you do it then!" To both of our surprise, she yanked the little bottle from my fingers and perfectly applied her own drops! We laughed at that until we cried. She was 9 and a half and it turned out that applying her own drops gave her an empowerment over her disease that she desperately needed. Parents, school nurses, doctors, grandparents, aunts, and even the parents of her best friend, had been more in control of her medication than she had been, every time they applied drops. From then on, I showed her each medication she was on, explained what it was for and taught her the names and dosages of each one. She liked to be the one to order her medication refills from the drug store as well.

Everything became visually noteworthy. To me, everything in the world suddenly seemed like a neon sign screaming "look!" "See the sunset guys?" I would ask in the mini-van on the way home from the opthomologist. I took them on walks, "look at this caterpillar, how yellow his stripe is." "Look, do you see how the water ripples when you throw a rock in the lake?" Nothing was beyond my fear of her losing her sight. In the cereal aisle, I asked her which box she thought had the best cover. My best friend Melanie flew Kelsea and I to Seattle and we gasped at Mount Rainer through the airplane window. She took 220 photos of clouds when I fell asleep on the plane and another 220 when we flew by Mount Rainier (see photo above). We met Melanie and her daughter in Seattle and watched the most beautiful sunset over Puget Sound. We rode a fairy in the hopes of seeing dolphins. We walked through the evergreen woods deep in the state of Washington, where the pine needles keep your footsteps quiet. We fed the goat in Spokane and saw our first IMAX movie. We went on an organized crazy spree to see everything everywhere.

She knew what I was doing. I know she knew. Sometimes I closed my eyes and pressed on them until I saw rainbow colors. Wondering what her life would be like blind. When her medication made her pass out at her brother's lacross game, I pulled him from the field and quietly raced to the ER, with three children under the age of 9, where the doctor wasn't familiar with her disease or her medications. I didn't sign the kids up for sports after that. Instead we went fishing together, and took walks. We became very close as a family. Kelsea's little brother, two years younger, and her sister, four years younger, adapted well. My husband and I just wrapped a little cocoon around our lives. Friends and sports, sleep and our own interests took a major back seat to the hourly drops and constant appointments. The children and I learned to play verbal waiting games, like "would you rather" and the alphabet game to keep from going crazy in the doctor's offices. I know that my kids have a character of understanding about them that most young children don't. They also know to stop and make the best of what you've got in the now.

When nothing was working, we found a doctor in Boston, 7 hours from home. I emailed him with a synopsis of her situation. Two hours later he emailed back, "can you come tomorrow? Can you come this week?" Over the years, we actually let the electricity get shut off instead of missing an appointment with him. I just gave the food in the fridge away and we left town. Trips to the city are not inexpensive. The doctor is an intense personality. He has made me ecstatic, and he has reduced me to tears. My kids like the free snacks and candy in his waiting room. This Doctor likes to say we will all do "Whatever it takes" when it comes to saving vision. "Whatever it takes." I often repeated this to myself when the chips were down and I wasn't sure if our next paycheck would come before the cupboards were bare. Uveitis has taken a lot from my family, financially, emotionally and in countless ways that may or may not ever add up into a full fledged explanation. But here we are today, all in one piece and all of us watching fireworks together on the 4th of July.

Regularly visiting the city of Boston changed our lives in so many ways. The tallest building in our town is 4 stories high, and the fire department practices getting to the top of this building with their ladder truck, because that's as far as the ladder will go.

Learning to love a big city was an adventure. And just like in life, there are things that you see, that you wish you had never seen. My children saw homeless people, sleeping on benches and beggars on the sidewalks. They were upset by the farmer's market, where leftover fruits, haggled over just moments before, were thrown in the street and literally bulldozed away. At home, somebody somewhere would can that stuff or get it to a family who needed it. But, just around those corners they saw tall buildings that amazed them, and tucked in with skyscrapers, they were awed by buildings that grounded them in the history of our country. They reveled at suspension bridges and subway musicians and street vendors and art and architecture and the giant aquarium. They ate octopus on a pizza. They sat in hotel hot tubs and we went on a whale watch. They took cab rides with their gregarious father, who got to know each taxi driver's home country and plans for the future. There were surprises, like finding the Holocaust Memorial around a corner one day, and the impossible to explain explanation of what all those names etched in the glass meant. There was the mundane drive week after week and people watching on the thruway. All of those things let us take another look at our own easy, small town lives. Horizons fell away, unveiling endless possibilities and a big wide world. And yet, through it all, we were there to save her sight.

Kelsea had her ups and downs. She developed cataracts. Then glaucoma. Her first surgery was on the day of the Boston marathon. It took hours longer than expected, and the doctor found another problem, plars planitis. It was another confounding disease. In the recovery room, before she woke up, my husband cried over her and gently picked her hair out of the bandage that covered her eye and face. There have been surgeries and recoveries, failures and new attempts.

Throughout her illness, I made it a habit to tell her the truth. If a procedure was going to be painful, I was honest. If she asked me a question I couldn't answer, I told her I didn't know, which meant we could find out together. After surgery, when she asked me how her eye looked, I said, "like hamburger." A lot of parents thought my approach was, ill planned, to say the least. But it worked for us. I didn't let medical professionals, teachers, or anybody lie to her. When she came to me and finally asked, "Am I going to go blind?" I said, "Not if we can help it, but I can't promise you anything." The honesty thing has been a boon as she has hit her teenage years. She knows I don't lie to her, if she asks a hard to answer question I tell her the truth. It's a trust thing.

We adopted the doctor's saying, "Whatever it takes." Fighting insurance companies and school special education departments took tons of my time. When they wouldn't let me leave work to take Kelsea to an emergency appointment, I made the hard decision to quit my job to focus on getting to doctors, and getting insurance and school problems straightened out. When we shut the cable off, cut every corner, spent our savings and still couldn't afford to pay the bills, we always got to the doctor. When the local doctor and office we were comfortable with developed a negative attitude toward the specialist in Boston, we let him go and found a doctor further away who would better fit our team. When the school wouldn't cooperate I cried and shouted and then read the state regulations and got them to blow up the size of her work. When the watch I bought to beep when drops were due didn't have enough beepers for all of the different drops and pills, I bought another. "You are going off" people would say. Indeed I was.

My river child had her moments. There was a point when she went through the steps of grief. Anger was first. I let her break things. I let her scream. I didn't know what else to do. When she started leaving "five stars" on her siblings, (this is the cool kids way of saying a big hand print from a slap) I knew she needed something more than I could offer. A great therapist, Maria, helped her focus her feelings and work through them.

Denial was also challenging. On a school night, at the age of 11, she informed me she was no longer "doing drops." She kindly explained that she was done with uveitis, and wasn't "doing uveitis" anymore. She missed a set of drops. She was about to miss the next dose. Internally I was freaking out, worried about her eye pressure, worried what would happen if she didn't go back to normal and take her darn pills and drops. Externally, I was trying to understand what she was going through, she had never behaved this way. Finally I convinced her to talk to a doctor and ask whatever she wanted. We called the doctor's answering service in Boston. Her favorite head intern called back. Thank God. We privately called him our "cute doctor" and he was wonderful. He works in NYC now, lucky NYC. I don't know what they talked about. My easygoing girl asked me to "go somewhere else" and they talked for about 45 minutes. When it was over, she put me back on the phone. He said, "Kelsea will take her medicine now, and she won't stop taking it. She is a really nice girl. She knows a lot about her disease and I don't think she needed education. She was just having a rough time and she's okay now." Kelsea was in the kitchen, taking her drops. That Doctor's wife was due to have their first baby at that time and I have great confidence in his ability to be a great dad.

Kelsea is 13 now. I was at work at my new job when the doctor called me to say she could stop her immunosuppressive therapy. I cried through three tissues at my desk, and then cried at lunch. I cried tears of joy, and fear that the remission might not last. When I went home and told Kelsea, she started crying. Then we jumped up and down in the kitchen holding hands. She is as tall as me now, and she can jump higher. Her first set of bi-focals make her look so grown up I sometimes do a double take when she walks through the living room. And yes, she can see. She can even read print!

Her disease is in remission and for the first time in 6 years, she is off all medications. After hourly drops, and every two, four, or 12 hour medications and drops, being med free is astounding. I keep feeling like I am missing something, forgetting something, but I'm not. I have fallen out of the loop, I don't know what the pharmacist's kids did last week, or when his next vacation is. I haven't read a large print doctor's office version of Reader's Digest in ages. In a lot of ways, we all have our lives back. The kids are all doing sports again. Funny though, I realize that a lot of the quality time we all had together was in a waiting room and I almost miss it.

My son played lacrosse and football this year, he is 11. He was in box lacrosse when he was 6, so there is catching up to do. My youngest is 9 now and she is joining 4H. She plans on raising a lop eared bunny for her first project. I have a great job as office manager for a not-for-profit agency. Kelsea can spend the night at friend's houses now, because she doesn't have to worry about meds. We finally bought a home. It's an old rebuilt school house by a creek. Kelsea painted her bedroom orange. Lime green is her accent color. I bought the paint. I am thrilled she can choose her own colors.

Doing "Whatever it takes" isn't easy, but in our case the results were worth it. I know I will never look through a camera lense in the same way again. Capturing the world isn't necessarily about taking pictures, and it's not about having it all or trips to Disney Land. Life is about recognizing when something is really worth doing, it's worth doing "whatever it takes." If each of us could find something worthwhile to invest our energy into, a great deal of good could be accomplished. One doctor decided to stop uveitis, and my daughter can see because he did whatever it took. Doing whatever it takes in the fight against uveitis brought my family together in ways we would never have imagined.

The biggest lesson I learned, is that the strongest, worst, most astounding, most insanely frustrating things in life, can lead to the best lessons you will ever learn.


  1. Rebecca,

    You are to be commended for both your commitment and your dedication to Kelsea and her journey. My kids were both sick as well and the nightmare we encountered was hell on earth. No-one can possibly understand it, unless you've lived it.

    Kudos to both you and Kelsea. I pray that her remission lasts throughout her lifetime.

    Your heartfelt writing is exceptional- have you ever considered writing as a profession?

    See you over at the Midlife site.

  2. Wow Beck. Jess had told me some of this, but I never knew the whole story. I'm so glad you are as tenacious as you are. For Kelseas sake. Shes such an awesome kid! I wish you and her all the best, you can make anything happen!

  3. Thank you for sharing your family's story... I hope you are still checking this so you'll know that the effort you took to write it has blessed and, somehow, comforted a mom who is going through learning to manage her own child's chronic illness.

  4. Wow Rebecca! What an ordeal. I admire how you were able to find the positive and write about the whole experience. I had never heard of your daughter's disease, but I am sure that, by writing, you have helped others who are struggling with it as well. You are a great mom and your kids are lucky to have you there to teach them. Thank you for sharing.