A Girl With So Much To Say
By: Kelly Butler
On May 13, 2005 our world changed forever—a precious baby was born, and my husband Charlie and I became parents! All the fears, joys, and anticipations of first-time parents washed over us. Brooklyn was beautiful, healthy, full of life—everything we could have asked for. We never imagined that seven days after our little girl turned two, our world would change forever again when Brooklyn was diagnosed as having Rett Syndrome.
What Rett Is
Rett Syndrome is a neurological disorder, the most severe form of autism, and it affects mainly girls. Symptoms appear during early childhood, and it’s usually not an inherited disease. Girls may live into adulthood yet are fully dependent on others to care for them. Although they are physically debilitated, they are just as intelligent as their peers.
According to the Rett Syndrome Research Trust, symptoms include:
• Loss of speech and motor control
• Functional hand use replaced by compulsive hand movements
• Disordered breathing
• Severe digestive problems
• Orthopedic abnormalities including scoliosis and fragile bones
• Disrupted sleep patterns
• Extreme anxiety
• Impaired cardiac and circulatory function
• Tremors like Parkinson’s disease.
Right now there is no cure, and up until 2007, hoping to cure such a disease was unimaginable. But the work of Adrian Bird, Ph.D. at the University of Edinburgh showed that the symptoms are not permanent but could possibly be reversed. More research is needed, but hope has been sparked for our Rett girls.
Brooklyn was an absolutely perfect baby—she slept through the night at an early age and only seemed to fuss if she was hungry or tired. She was a little slow learning to sit up, but she eventually got it.
When she was not crawling by her first birthday, we were a little worried. But Brooklyn’s pediatrician told us we were overly concerned, and he said his charts and books proved she was “just fine.” At 15 months old, Brooklyn still was not crawling, and our pediatrician still was not concerned. I was—deeply. Yet the week after the checkup, she started crawling, so I assumed she was fine—just a relaxed, laid-back girl, like her dad!
A nurse practitioner in our local doctor’s office was the first professional who expressed concern. She also goes to our church, so she had watched Brooklyn each week for a year. The nurse practitioner noticed Brooklyn’s lack of vocabulary and a little loss of eye contact, and of course the fact she was not walking at 16 months old. We went in with concerns of an upper respiratory infection and left in tears with the fear of autism.
We were sent to a pediatric development specialist who promised to figure out was wrong with our little girl. Three months later he told us he gave up—he was stumped. So he sent us to a genetic neurodevelopment specialist. After several more weeks, we finally received the diagnosis of Rett Syndrome. Now that we knew the problem, we researched what to expect next.
“Regression” is a stage we had read about but never knew how to fathom. It’s the time frame when Rett girls lose their abilities. For Brooklyn, it lasted about six to nine months, but it seemed like an eternity.
During regression, Brooklyn averaged only two to three hours of sleep at night, and for a while every morning she’d wake up and lose a skill. She began losing control of her hands, her legs, her ability to speak the words she knew (mama, dada, blankie). But crawling was the hardest; when she lost her words, she could at least crawl toward something and give us a guess about what she wanted. But it just seemed to stop—one night she was crawling and the next morning she wasn’t. From that time on we had to guess as if she were an infant again: “Brooklyn, are you hungry? Hurting? Bored?”
The saddest thing was the personality change during regression. She hit, bit, and had screaming fits. This wasn’t the sweet girl we knew. We ached with her, wondering how it felt inside her own little body and mind to experience this.
Charlie and I went through a whirlwind of emotions. We never imagined how heart-wrenching it would be to watch our child slowly lose most of the abilities she had learned during her first two years of life. We went through the grieving process over and over. I remember being sad and crying for days. Also I was angry: why was this happening to our sweet little girl? We felt a loss of the dreams we had for Brooklyn since the moment we found out we were pregnant and heard that sweet heartbeat on the ultrasound.
I remember being at a wedding a few months after Brooklyn’s diagnosis and feeling like I was going to have a breakdown right there. I thought, I will never see my daughter walk down the aisle! Even now some moments or events hit hard and send me into the grieving process all over again.
It was tough on our marriage. We were exhausted and disconnected. We were in crisis mode, trying just to survive.
Charlie and I are both strong in our faith, but we have asked over and over: Why did this have to happen? Why does she have to suffer? Why can’t I get to hear my daughter speak, or go for walks, or even talk back to me? I would not say that we have ever doubted God is still there, but I confess that this is the closest I have ever come to wondering.
But as dark as the days of regression were, I feel like the light began pouring back in once that stage ended. Brooklyn had lost all the skills she was going to lose, and she became calm, happy, and more herself. We were a family again, growing and communicating together. We began to focus on her abilities rather than dwelling on the disability.
Now Brooklyn continues to grow stronger with therapy sessions: occupational therapy, physical therapy, music classes (music has always seemed to be an amazing motivator as well as a calming influence on her), and therapy on horseback (for core strength and balance as well as self esteem—she spends a lot of time sitting or on the floor so people are looking down to her, but when she is on a horse, riding high, all eyes are turned up toward her and she eats it up!)
Brooklyn communicates with her eyes. We ask her questions and she looks at yes or no cards to respond. Brooklyn goes to preschool and uses her gaze and cards in class to answer questions and communicate with her friends.
Even though she can’t talk to me, I know her better than most parents know their kids—because I have to. I have to know, from head to toe, basic things she can’t say, like “Mom, this shirt itches” or “My head hurts.”
I see Brooklyn’s patience with Charlie and me. Imagine having so much to say and waiting for Mom or Dad to ask the right question using just yes or no questions to figure out what you need. I can’t imagine how frustrating it must be for her, but very rarely do we see that frustration from her.
Our Little Girl
Brooklyn has such a unique personality! She communicates things differently than others. I love watching Brooklyn play with her cousin Jackson and her friends. Even though she needs my help for so much, I realize I need to give her space, just as any four-year-old wants some independence from Mom and Dad. And like any four-year-old, she likes to learn, enjoys picking out her own clothes, and bucks the system and tries to ignore us sometimes.
Here is what I wrote on our family blog the day we received the diagnosis:
Absolutely nothing changes for us. We will still wake up in the morning to hug and kiss our little girl . . . . We will still thank God for everything, especially Brooklyn and the amazing love and tremendous blessings she shows us each day. She has been given a label of Rett Syndrome, and that is OK. We plan on joining forces with all the other moms and dads of Rett girls to get the word out about this horrible disease. We will help educate our friends and family about this syndrome and help them see that Brooklyn is amazing and that we will actually be the ones to learn from her.
What I wrote then is still true: We thank God for all he has done. We thank him for teaching us so much through Brooklyn. We get to spend time with an angel every day. We have learned greater patience, compassion, and love than we ever thought possible.
Girl Power 2 Cure
I am blessed to work from home as the program director of Girl Power 2 Cure and process memberships, keep up with Rett families, and help raise money for Rett research. I am thankful to have a job our whole family is passionate about.
Our biggest month is April, autism awareness month, and our biggest fundraiser is on April 1 called Dress Up 2 Cure. For more information visit: http://www.girlpower2cure.org/
Two other places online you may want to visit:
Rett Syndrome Research Trust: http://www.rsrt.org/
Our family blog: http://www.brooklynbutler.blogspot.com/
A tip for parents WITHOUT special needs children:
When many people see a physical disability they assume a mental disability. Talk to Brooklyn like you would talk to any other child her age. Our Rett girls are “in there.” They are trapped in their bodies, unable to communicate their needs, wants, and dreams with the world—that is unless you are willing to really “listen,” which to our girls means watching their eyes. If you are willing, they can tell you so much.
A message of encouragement for parents WITH special needs children:
I often tell other mothers it is OK to cry. I went months where a day did not go by that I did not cry. But there comes a time to get strong again to fight for our kids, to be their voice if they do not have one. We are our children’s biggest source of encouragement, support, and love. We can’t let our sadness get in the way of their needs. We need to help them thrive!
Wednesday, August 5, 2009
A Girl With So Much To Say
Posted by Kelly at 12:01 AM