I feel more secure sending Naomi off to first grade this year. She handled the last year so well, her teacher seems wonderful, and there are a few kids from her kindergarten class who carried over into this year's class. But there are so many new kids too. I still worry about bad influences, I worry about bullies, I worry about little kids who just have no sense of tact. Probably it's that third category that worries me the most. When Naomi was little complete strangers didn't only stare at her large abdomen they occasionally stopped to lift up her shirt and look at her belly or to tell me that I had tightened Naomi's pants too tight. It's happened too many times that kids who are a bit curious and have not yet learned manners will say to me, "Why does she talk so funny?" or "Why does she look like she's pregnant?" and at least I've been around with a quick answer like, "Why is your nose bigger than hers? God likes to make people in all shapes and sizes." At school however, she is on her own to handle these questions, and that can be daunting for a six year-old.
Naomi and Emma were born with a genetic condition called Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. It's a big long name to say that Matt and I each carried a recessive gene without knowing it that happened to meet up in both Naomi and Emma. It causes their kidneys to fill with cysts and their livers to fill with scar tissue. Though they are doing well now, it is a degenerative condition with potentially life-threatening complications coming in their later childhood or teen years. (If you want more info on the disease you can visit arpkdchf.org.) For now the disease only requires monitoring with periodic blood work and ultrasounds and the girls are mostly symptom free. Naomi does require extra water intake which means keeping a water bottle with her at all times. But Naomi was also born with an extra helping of issues: crossed-eyes which mean she wears bifocals and has no depth perception, club feet which means she is unstable in the ankles and needs special shoes with orthopedic inserts, some struggles understanding and following social rules, and an enlarged abdomen. Her abdomen is enlarged probably because she collected fluid in the abdomen (called ascites) when she was in utero and this caused a malformation of the abdominal wall. Also her liver and spleen are enlarged. For practical purposes it is the big belly that draws the attention and comments of curious kids around her.
Last year, when I sent Naomi off to kindergarten, I knew I needed to prepare her for these questions without making her overly self-conscious. One day in the car I mentioned that God had made her with special kidneys and that her belly is bigger than most other kids. I was upbeat and assured her that it was just fine and that other kids all have things that are different about them. As Naomi likes details and thoroughness, I walked her through the fetal ascites, and the enlarged liver and spleen. Then I asked her what she would say to anyone who questioned her big belly. She said, "Well....I would tell them that when I was in my mommy's belly I collected fluid in my abdomen called ascites, that it caused my abdominal muscles to be weak, and that my liver and spleen are enlarged because of the the scar tissue in my liver, but that it's OK 'cause God made me that way and he makes everyone different."
I laughed a little and said, "Well, that's the long answer Naomi. I wanted you to know that, but you could just give them a short answer like, 'That's the way God made me' if you want to." Naomi agreed and the subject was laid to rest until she came home from her first day of kindergarten. As we debriefed about her day she suddenly laughed and said, "You know, Mommy, someone did ask me why my belly was so big!"
My stomach turned a little, but Naomi was clearly impressed by my fortune-telling abilities, so I smiled and laughed too, "Oh really? and what did you tell them?" I asked.
"It was a girl behind me in line to come in from recess." Naomi explained, then she added confidently, "I gave her the long answer."
I had to chuckle thinking of Naomi confidently walking the poor girl through every detail of her medical history. "And what did she say?" I asked.
"Well, she just said, 'Oh'," Naomi smiled. I guess that shut up the girl in line, and anyone else who might have been listening, because to my knowledge nobody ever asked Naomi again for the whole school year.
Ah, but now a new school year has begun, with new curious children. Day three of first grade is under-way, and I have to wonder which rude comment may turn the ever self-confident Naomi into an overly self-conscious criticizer of self. All I can do is assure her of how uniquely and wonderfully made she is and talk often to her of how God's plans are mysterious but never mistakes. Sometimes I think she understands better than I do, and with the way she handled the girl in line on her first day of kindergarten I guess I have every reason to be confident of her ability to silence any rude first graders.