Charlotte

My friend Kathy is a planner. When we get together for girls’ weekends, she has incredible restaurant suggestions for us. She knows which art exhibits are coming to town. She and her husband actually go on vacations together because she researches and plans and budgets for them, rather than sitting around wondering, “Why don’t we ever dooooo anything?” Kathy plans; Kathy achieves.

For Kathy, planning meant college, and law school, and marriage, and 2 kids. Which did happen, but not the way she planned.

When her second daughter, Charlotte, was a baby, Kathy noticed that it took Charlotte longer to do things than it had with her first daughter. Those of us a few more years into motherhood told her not to worry, that Charlotte was just fine. I must admit we probably thought Kathy just didn’t get the whole “babies develop at different rates” thing. We may have thought Kathy needed to relax a little.

But Kathy knew. She knew something was different about Charlotte. Kathy spent hours and hours teaching Charlotte to crawl and walk, when other babies did that on their own. When cutie-pie Charlotte started talking, but then lost those words shortly thereafter, Kathy’s friends and family finally began to fathom what Kathy had been trying to tell us all along.

Doctors’ visits, profound fear and sadness, whispered words like “autism,” and feelings of hopelessness entered Kathy’s well-planned life. No one knew what was causing Charlotte’s delays. And no one in our small sphere of friends even had the context to deal with what was to come. You see we were still in the pregnancy and potty training stages where we talked about lack of sleep, chafed nipples and pre-school spats. Depression, OCD, divorce, bullying, learning disabilities and other messy topics hadn’t yet entered our lexicons.

And then came Rett.

Charlotte was diagnosed with Rett Syndrome, a neurodevelopmenal disorder that affects girls almost exclusively. It is characterized by normal early growth and development, followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability. Rett girls cannot speak. Many are in wheelchairs. Every two hours a girl is born with Rett Syndrome.Who knew?

As Kathy said, “We were circling the drain.” The sense of loss for the life Charlotte could have led was staggering. The stress of making decisions for Charlotte’s care was enormous. This was not what Kathy planned for her precious little girl. Kathy felt doomed to a life of sadness.

But slowly the fog began to lift. The planner in Kathy used those skills to educate her family about Charlotte. She helped organize events to fund Rett research. She marshaled her talents to get Charlotte an array of help from amazing teachers and specialists. She plugged into a school system with vast early intervention resources, which even placed Charlotte in a special-needs preschool class right next door to her big sister’s kindergarten.

And most importantly, Kathy bonded with other moms with children with severe challenges and realized she was not alone. And do you know what she saw when she looked at these women? They laughed. They cried. They ran. They had sex with their husbands. They drank wine. They went to Disney. They had more kids.

More kids? “Two and then Through” became a thing of the past. On the practical side, Kathy and her husband did not want their older daughter to bear the sole responsibility for Charlotte’s care when she grew older. So Kathy and her husband jettisoned their plan for two kids and well, forged ahead, if you know what I mean.

But if Kathy hadn’t already learned some lessons about planning before, she did now, when the doctor told her she would soon give birth to not one, but TWO beautiful, healthy girls. Twins!

An orderly life of work and play and 2 kids, is now the busy, bustling life of a house of 4 girls. A happy house that rings with laughter, and tutus and art tables and…. personality!

Charlotte is cherished by her sisters and their friends. Through her, they are learning about differences and love. The twins, even at age 3, already nurture and care for big sis Charlotte. She has a calm, content demeanor. She loves the water, going to school and camp, and her adoration of Troy Bolton from High School Musical went unabated for years. She likes to steal food off her sisters’ plates, which makes the whole family smile.

Kathy would never have envisioned this house full of girls for herself. Just as she would not have envisioned having to share her house with home health aides and specialists and large-sized diapers. Planning and structure are still there, because they are so needed, but so is a degree of acceptance and relinquishing control beyond Kathy’s expectations. This acceptance has led to a rich life and the kind of life lesson none of us asks for but some of us get.

As Kathy wrote to me, “...I am grateful that Charlotte taught me never to give in to sadness. And because of Charlotte being who she is, we now have these two creatures who make me laugh every day. It is hard to imagine not having the twins, but I know for a fact that I never would have tried for another baby if Charlotte had been a typical child…I am sure people feel sorry for me because of Charlotte’s diagnosis. And I know for a fact that people feel sorry for me because I had twins. They are probably so thankful that they are not me. And that’s OK. But I know for a fact that I am lucky. I have four daughters and I love them all with my whole heart. And they are all wonderful and needy and loving and frustrating and sweet and annoying. None of them are “perfect”—except to me!”

Kathy prays that medical research and breakthroughs will help Charlotte and other girls with Rett, and she hopes you and I will be a part of that.

To learn more about Rett Syndrome, or to make a donation for much-needed medical research, please visit the International Rett Syndrome Foundation.

And today, in whatever situation you find yourself, when you may be thinking as Kathy did, and as I sometimes do, “This is NOT the life I signed up for,” remember that you are never alone.