Kelly was my next door neighbor. She was in diapers and crawling when I met her twenty years ago. Though her older brother and sister were good friends of my children I rarely spent time with her. Nearly twenty years later on most Sunday mornings I have the privilege of sitting next to her at church. Sometimes she sits quietly with her head gently resting on her dad’s shoulder until she falls asleep. At other times her dad carries her to her wheelchair where several of us take turns strolling her through the halls so that her voice won’t disrupt the service.
As a twenty two year old, Kelly is still in diapers and is still crawling. She can not talk or respond to conversation. She can not walk. At one time she could take steps with a walker. Surgery that was intended to make things better resulted in her being confined in a body cast for a year and losing most of the progress she had made. She suffers from many seizures, another symptom of Rett syndrome
My husband and I studied the Bible with Kelly’s parents before they were baptized. They have become dear friends. Kelly’s mom loaned us a video about her illness. It was sobering as our eyes were opened to what life was like not only for Kelly but for her entire family. Her siblings had to let go of many of the family times and activities they would have enjoyed because of their sister’s disabilities. Her parents had to learn an entirely new way of life as they faced many unanswered questions about this disease and how to function through it. Several times Kelly’s seizures brought her near death. Every new stage brought and still brings new questions and challenges that must be navigated.
Though her parents should be “empty nesters” by now they will not know that freedom as long as God allows Kelly to be here on this earth. While their friends can “pick up and go” they can’t do that. Few people have the knowledge or capacity to care for her for even a short time.
I realize I am one who likes to move quickly and I prefer it when people understand me quickly. I like to work with people who are quick responders. I can be impatient when someone doesn’t understand me. Kelly has filled my cup of learning with new understandings and perspectives. Even though she can not move about on her own, understand what I say or communicate back to me she is still a great teacher. I have needed Kelly in my life. I have needed her to “grow my heart”. Jesus knows we all need “Kellys” in our lives.
1 Cor. 12:18-27
But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. [19] If they were all one part, where would the body be? [20] As it is, there are many parts, but one body.
[21] The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” [22] On the contrary, those parts of the body that seem to be weaker are indispensable, [23] and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, [24] while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, [25] so that there should be no division in the body, but that its parts should have equal concern for each other. [26] If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.
[27] Now you are the body of Christ, and each one of you is a part of it.
While Kelly is not a “regular adult member” of our church family she is a vital part of our lives.
One of my sisters lost two babies soon after their births. In the subsequent years she and her husband adopted four children, two of another race. The family has endured many struggles and heartaches (including the death of one of their daughters) amidst the many joys. I vividly remember something my sister expressed to me while reflecting on the unexpected turn her life had taken many years ago. She mused that she was a different person because of her experiences… and that she liked who she had become more than who she would have been without them. Our trials often become our counselors.
Most often it is through weakness that I find strength. I find it quite encouraging to know that God specializes in making something from nothing and turning weaknesses into strengths.
2 Cor. 12:8-10
Three times I pleaded with the Lord to take it away from me. [9] But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. [10] That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
I have also learned from Kelly’s parents the importance of a decision to learn and embrace the unalterable challenges that come your way. I will share with you a poem by Pearl Kingsley that Kelly’s mom shared with me. It has a powerful message:
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Thank you Kelly, for introducing me to “Holland”. It is indeed a beautiful place.
