Why do I feel compelled to dress my children in costumes and drag them around the block, collecting bags of candy, each fall. Is it just that it's a cultural norm? Is it because they look so cute in those costumes? Is it because I have happy memories of dressing up and hording candy as a child? Is it because the neighbors invited us to go with them, and my children and Matt and I all need the socialization? Or is it that I feel my children are already deprived of so much that is "normal" in childhood because of their health conditions, so I want to give them any of the experiences that their peers have if I possibly can. They do need to have happy memories of more than doctors and ultrasounds and biopsies. Or maybe I just like raiding the candy stash afterward.
I do not like the roots of the "Halloween" celebration. I do not agree with the celebration of that which is evil, grotesque, and morbid, but I know that for the vast majority of families out there it is simply a night to dress children in cute costumes and hand out candy. So, probably for some combination of the above reasons, I spent yesterday helping the girls go through our dress-up clothes and pick out suitable costumes. We enjoyed a dinner with the neighbors (with our own gluten-free food of course) then began pulling on layers of tights and shirts and sparkly skirts. Just after 5:00 we headed down the street in the amazingly mild fall sunshine.
Our neighborhood must be the favored trick-or-treating neighborhood for the entire county. The streets were filled with a menagerie of ballerinas and lady-bugs, goblins and ghouls, all frantically hurrying from house to house. The neighbor kids we were following were older and faster than mine. Naomi and Hannah ran after them giggling, but Emma resisted being rushed, and Toby had much more to explore than the next house's front-door. Matt carried Toby from house to house as I pulled Emma's arm. She stared wide-eyed at the freakish faces passing us, and whined at having to walk so quickly.
"Now just take one,"a kind, naive lady sweetly advised Toby, holding out a large bowl of candy. Toby took one, placed it in his bag, then took another and reached for a third. "Mommy," Naomi whined, half-way down our street, "my knee's hurting. Can you carry me?" Most of Naomi's joint pain has vanished since going gluten-free, but it occasionally resurfaces, and it struck her nearly lame last night. I ended up carrying Toby and dragging Emma while Matt carried Naomi. "Why didn't we bring the wagon?" Matt called back to me over the crowd. "I don't know, remind me next year," I yelled back, nearly panting for breath. We decided that one trip up and down the street was more than enough this year.
Today I set up the "Candy Trade-in Shop" and went through all the kids' candy piece-by-piece, searching for gluten and dairy. Any piece found to contain gluten went into a pile to donate to Uncle Phil. Any piece containing dairy Naomi and Toby had to trade in, but Hannah and Emma could keep. I had a stash of gluten-free, dairy free candy that the kids chose from each time I confiscated one of their hard-earned treasures. In the end, each child has a Ziploc bag full diet-approved treats and, hopefully, a mind full of happy memories. They better.
"We've decided what we want carved on our pumpkins," Naomi announced several weeks ago, "We want a flower on one and a cat on the other." I do not spoil my children, I certainly do not cater to their every whim, but when I've decided to do something special for them, like carving pumpkins, I do hate to let them down. But a flower and a cat? I decided to take a wait-and-see approach, hoping that perhaps they would take an interest in geometric shapes, say a triangle and a rectangle?
Tonight, the night before trick-or-treating, I had delayed all I could, and the girls' desire for a flower and a cat stood firm. So I rolled up my sleeves, picked out the thinnest knife I could find, and gathered the girls around. Toby was also interested in the knives and the guts of the pumpkin, but he lost the privilege of watching after he head-butted the pumpkin I was carving. One-and-a-half hours later three excited little girls stood in awe of the beautiful jack-o-lanterns they had dared to dream up. "I knew you would finally carve these pumpkins and they would look like this," Hannah sighed as if she were reading the last sweet lines of a happy fairy tale, "and now I'm kind of smiling because I'm happy."
Despite my initial qualms, and a freshly flared up sore wrist, I'm pretty proud of myself too.
I was more than a little perturbed to discover a large streak of Desitin on the living room carpet this afternoon. After some interrogation, it was discovered that Hannah had decided to attempt to use the Desitin to glue some papers together. Given this usage it is not at all surprising that some ended up on the carpet. Hannah was sentenced by the committee for restorative justice to scrub the Desitin with a wet rag while I went to get some carpet cleaner.
Upon returning to the living room with the cleaner, I found Hannah with the tube of Desitin, lid open, poised to squirt some more out on the carpet. "Hannah!" I yelled, "What in the world are you doing?!" "Well...I," the timid Hannah replied, "I was just going to put some more on so I can see where to clean. I can't see it anymore."
I have decided against using restorative justice for the time being. If more Desitin shows up on the carpet Hannah will be sentenced to stay in her bed until she can demonstrate evidence of having acquired common sense.
"It seems so exceptional that things just work out after all. It's just another ordinary miracle today." --Sara Mclachlan
Have you ever gone grocery shopping at 11:00 at night and seen the irresponsible mothers who are carting their tired toddler around in the shopping cart. The poor kid's eyes are dark and drooping, their head is a lead weight on their shoulders, and you think, "Why in the world isn't that poor baby in bed?" I have, and now I'm humbled.
In preparation for Toby's MRI, I was instructed to only let him have five hours of sleep the night before. They wanted him to be so thoroughly exhausted that he would drop off to sleep with just a touch of sedation. He also was not allowed anything to eat or drink for six hours before the procedure, so I knew I didn't want to wake him early and have him screaming for his morning juice. This meant waking him at 6:30am, which translated into keeping him up until 1:30am! Quite an undertaking. He was thrilled until about 10:00pm, when the sleepies really set in. So we went to the grocery store and rode the one-cent horse ride, and I got a little shopping done too. Of course people stared and wondered what sort of mother I was, and I felt like telling them to mind their own business, "He has an M--R--I to-mor-row! I'm not a bad mom!" OK, I will never think bad thoughts about the other moms at the grocery store again, maybe they have a strange explanation too.
Toby was recharged by his stint as "cowboy of the grocery store," and we were also blessed to see the full length of a "CHOO-CHHOOOOO!" at the crossing by our house. Another block down the road their was a fire-truck parked with it's lights flashing against the dark sky. By the time we reached home around 11:30pm there was enough adrenaline in Toby's system to support him for another hour. About 12:45am Toby and I were both running on empty and I decided to put him down--close enough to 1:30am for me.
We were up around 6:30 and checked in at the hospital by 7:30am. I guess the person before Toby was claustrophobic, so that pushed Toby's appointment back some. Finally at 8:30, when he was reaching the end of his tired, thirsty, hungry patience we were called back. He tolerated the stickers on his chest, but certainly not the IV placement. Unfortunately he did not drift peacefully to sleep with a touch of sedation either. I guess some kids choose to fight rather than succumb, and Toby fought as if it were his dying breath: flailing, squalling, back-arching, and thrashing. It was all we could do to keep the IV in. He finally succumbed after about 15 minutes of fury. Then we were left alone in the cold white room, Toby limp and hooked to monitors, and me in a chair beside him with headphones and the latest National Geographic.
Somehow after all the chaos it was eerily still in that room. I suddenly remembered why we came: the unmistakable, inexplicable lumps all over his little head. It was hard not to let my imagination go. What were they seeing inside his head right now? What if they're seeing masses, tumors, lesions? What would that mean for Toby and for our lives? Was that worry I detected in the technician's voice when he spoke to me over the headset just now? How would I respond if it turned out to be the worst? Would I still trust God? Would I still praise him? Somehow I knew that I would. The technicians were frustratingly poker-faced as they unhooked Toby's equipment and woke him from sedation. Then I was sent home with a furious, delirious toddler, a lot of unanswered questions, and more fear than I had felt in a long time.
Toby was inconsolable, even at home. He looked heavily drugged. He couldn't stand up, and he wouldn't sit still or lie down. I'm not sure he even knew where he was or who we were for about an hour. Matt and I took turns holding him and trying to calm him, until he finally sat in a high chair and had some lunch, then gave in to sleep around 1:00pm. He took a five-hour nap which was a blessing to my weary body, but left more quiet time for me to worry. When the MRI was days away I had put the potential result out of my mind fairly easily, but now that I knew the phone could ring any minute with news that would change our lives I began to feel weak, even panicky, something my stable psyche is not at all accustomed to.
I called the pediatrician's office at 3:00pm and again at 4:00, no results. I had to collect myself to get Naomi from the school bus, put some dinner on the table, and prepare for a parent-teacher conference with Naomi's teacher that evening. Matt and I took our cell-phone with us to the conference when we left at 6:15pm, but in an all-cement building we missed the phone call from the pediatrician. The phone vibrated with a message as we left. My heart began to pound as I listened to the message. I recognized the voice of the nurse as she spoke, "The official report is still unavailable, but Dr. A called and spoke with the radiologist. He said the brain and skull were normal." I sighed and whispered, "normal," to Matt who was waiting anxiously for my word, and suddenly the sky was blue again.
After a drought the rain feels cooler, after the clouds the sun shines brighter, after the winter the flowers smell fresher, and after the long walk up Mount Moriah the angel's voice was never sweeter, "Now I know that you fear God because you have not withheld from me your son, your only son." You may think I'm being melodramatic, but I think most mothers would have feared for their son's life in my situation, and I felt as if I had received him back from the dead. Toby is healthy! There will be no brain surgery, no chemotherapy, just normal toddler-hood. Did I take that for granted before? I don't now.
Again and again in my life I am faced with the question: would I give my children up if that were God's purpose for their life? How would I react if he wanted to teach others through their suffering or death? It is an easier question to answer in the abstract, much more difficult when your sweet child is lying limply inside an MRI machine with lumps on their head. But by his grace I have answered back, "Lord, not my will, but yours be done," and in his mercy he has handed my children back to me each time as if to say, "just checking." I am grateful, truly. If I hadn't been through yesterday I wouldn't appreciate today as much. It may seem ordinary to you, it is a miracle to me, but much of our lives are daily ordinary miracles aren't they?
I have written a summary of some of the prenatal fears we faced with Naomi, Emma, and Toby for Prenatal Partners for Life. It will be included on their website at some point under "Stories" and then "Kidney Defects." I thought I would share it here as well.
Naomi, Emma, and Toby’s Story
I was twenty-two years old when my obstetrician looked me in the eyes and said bluntly, “I’m going to send you to a specialist. The ultrasound showed some abnormalities.” My husband and I were shocked and skeptical. We questioned her more closely about the abnormalities. “It just says, ‘increased prominence of echogenicty of both kidneys,’” she shrugged, handing the radiologist’s report to me. The OB didn’t have any guesses as to what that meant, and offered nohope of remedying the problem beyond the cold suggestion, “You could choose to terminate.”
Naomi Katherine Eby arrived just before 37 weeks gestation with a visibly distended abdomen and club feet. We did not receive the diagnosis of Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis until three and a half years later, because Naomi didn’t fit the classic profile. Most babies who are diagnosed with ARPKD/CHF will die because their lungs did not have enough room or enough amniotic fluid to develop properly. In God’s mercy, Naomi’s kidneys, though filled with cysts, were only mildly enlarged, leaving enough room for her lungs to develop properly. And though the club feet indicate that at some point the amniotic fluid level around Naomi was low, amazingly, her lung function was not at all impaired. Little Naomi was allowed to room in with me the first night, but when blood tests showed a climbing creatinine level, indicating deteriorating kidney function, she was moved to intensive care. The doctors began to discuss dialysis with us. I was forced to leave my baby at the hospital, not knowing when, how, or if she would come home with us. Amazingly, though her creatinine climbed to 2.3, it leveled off there when she was four days old, and slowly began to drop. With more than enough kidney function to lead a healthy life, Naomi was discharged when she was five days old.
Naomi’s nephrologist and two geneticists assured us that whatever Naomi had, it was a fluke and would not repeat itself with any other children we had. Our second daughter, Hannah, was born completely healthy twenty-one months after Naomi, so I was stunned when, during my third pregnancy, the sonographer looked at me softly and said, “The baby has echogenic kidneys.” Fearing a more grim outcome for our third daughter I sought comfort in choosing a name for her, it felt like something I could control in a rolling ocean of emotions. I sunk my anchor in the knowledge that God was in control and that he brings suffering to our lives for a purpose, and we chose the name Emma Peace, which means “embracing everything (in) peace.”
My pregnancy with Emma was more complicated. She accumulated a large amount of fluid in her abdomen, called ascites. I accumulated far too much amniotic fluid, called polyhydramnios. Her heart rate remained at a steady 120 beats/min, refusing to accelerate with movement or startling, which concerned the doctors. The perinatalogist cautiously mentioned the possibility of terminating, but didn’t mention that again after we told him that was absolutely not an option. I was subjected to two amniocentisis, one for chromosomal testing, and one to drain off one of the four liters of extra fluid I was carrying because I was beginning to have trouble breathing with an ocean of water pressing on my lungs. My labor with Emma was induced at just over 36 weeks because she showed clear distress, but once again we were graced with a miracle. Emma’s lungs functioned normally, her creatinine never rose. She was kept for eight days in intensive care, then released to a near normal childhood.
It was when Emma was one month old that we finally received the diagnosis for both girls of ARPKD/CHF. Though we weren’t exactly asking for another baby immediately after this experience God sent another one to us when Emma was eight months old. I dreaded the 20 week ultrasound, and felt like clubbing the two sonographers who stood beside me arguing about whether or not my baby boy had two kidneys. Back to the specialists we went, and I went back to the foundation I had found so secure before, naming this baby Tobiah Matthew, which means, “The Lord is good, gift of God.” At least I was greeted with the loving, open arms of the same perinatologist who had cared for Emma. She had to assure me repeatedly that Tobiah’s good kidney was completely normal and showed no signs of being cystic like Naomi and Emma’s. His right kidney was shrunken and stuck to the bottom of his left. It probably wouldn’t functional well, if at all, but his left one was more than he needed to lead a healthy life.
Baby Toby did struggle with inexplicably high potassium levels requiring some medication, at least a hundred blood-draws, and one overnight hospital stay during his first year of life. But this problem vanished as strangely as it had come, around the time he turned one.
Naomi is now six years old. She has experienced mild developmental delays, wore braces on her feet for 18 months, underwent surgery for crossed-eyes when she was two, and has recently been diagnosed with Celiac disease, but what a blessing she is to us! She is a bright, adorable six-year-old with a soft heart for others. Emma is now three, she has experienced some speech and developmental delays, but is as bright and sweet as her sister. Toby is as full of life and vigor as any 20-month-old could be. Naomi and Emma have learned that periodic blood-draws, ultrasounds, and doctors’ visits are a way of life, but really not a bad life. Naomi is enrolled in the high-ability program of her school and matter-of-factly answers the questions of other curious first graders who want to know why her belly is so big. ARPKD/CHF is a degenerative condition—the fibrosis in the liver and the cysts in the kidneys will continue to worsen as they grow. The girls will probably face life-threatening internal bleeding (the main complication of the liver fibrosis), as well as kidney transplants at some point in their life. They may not be able to carry children. They probably will not live to a normal life expectancy. The path we walk is lined with fear and sorrow, but there is far more joy and thankfulness growing along the way, if we will stop to receive it.
To all the parents who receive the devastating news that their unborn baby is not healthy I would offer these words: please give your baby the chance to live to the end of his or her natural life. Give yourself the chance to offer your baby love, comfort, and life. Many times the doctors are right and the outcome is grave—please offer your baby a dignified death and offer your family memories of your baby’s brief life. But sometimes the doctors are wrong, and they are all too quick to suggest termination of pregnancy. My children are proof of that. There is a grace in receiving the unique children sent our way. There is joy in seeing the blessing they bring, even mingled with pain. In our effort to avoid suffering we all too often close ourselves off from the blessing these children bring. We are all too quick to label as punishment that which God means as a blessing. Sometimes grace comes thickly veiled in tears.
Among the many things we love about our church are the small, close-knit atmosphere and the frequent fellowship meals. Our church family of about forty meets every-other Sunday for dinner after the morning service. The kids run around with each other in the large basement while the adults warm the casseroles, set out the fruit salads, and catch up on each other's lives. I do try to keep an eye on my children, but it gets difficult to count all four heads bobbing among the crowd while checking to see if my hot dish is indeed hot.
Once last May, Emma entered the women's bathroom in the dark, wandered into the shower and actually managed to pull the shower handle! (For full story click here and scroll down to Little Miss Independent Gets a Shock dated 5/10/10.) But the reassuring thing is that there are forty-some other pairs of eyes to help watch my children and return them to me, even if slightly wet from a cold shower.
"No, Toby! Hot!" I warned today as he wandered near the oven. I returned to my conversation, but had to break it again just a minute later as Toby stood gazing at the full coffee-pot. "No, Toby! Hot!" I yelled across the room. He reluctantly wandered away from danger and out of my line of sight. Several minutes later a young man in the church carried him over and dropped him off beside me. "I found him upstairs, wandering around in the sanctuary," He informed me, smiling. A few minutes later Toby was returned from upstairs again by another informant. I snuck in another conversation before a friend questioned me, "Do you want Toby heading up the stairs, because he's half-way up?" I decided that that was a good time to strap Toby to a high-chair.
I am reminded today that there is a reason God designed us to live in community, and I am thankful for that.
A friend sent me a link today to the organization Prenatal Partners for Life, which offers support to parents who receive an adverse prenatal diagnosis and encourages parents to choose life over termination of pregnancy. Looking through their website I was flooded again with the emotions that we had once felt after our twenty-week ultrasounds with Naomi, Emma, and Toby.
Each was a time of fear, a time of questioning, and a time to grow our faith. After we learned that our fourth child, a little boy, was missing a kidney, I feared that the one he had would be cystic as his sisters' were. I feared that his one kidney would fail after he was born. I feared for his life, but I had learned to trust the one who gives us these children. In the face of fear we named him "Tobiah" which means, "The Lord is good," and I wrote the following poem:
Heaven's Child
The blueprints are not flawed
Steady fingers have not failed
This is no accident
Sometimes grace comes veiled
It is not mine to prevent
Not mine to remedy
It is mine to accept
And simply bow my knee
This is masterful design
Not genetics going wild
Exactly as intended
This is Heaven’s child
Sent for more than my enjoyment
I can not hold him selfishly
His creator has a purpose
Higher than my plans for me
It is not mine to worry
Not mine to question why
It is mine to hold him
To gently hush his cry
It is mine to offer comfort
To love him without greed
It is mine to walk beside him
But let his Creator lead
Planned from long before creation
Written down, his Maker smiled
Exactly as intended
This is Heaven’s child
Tobiah Matthew Eby arrived with one healthy kidney and had no immediate complications. He struggled for his first year with inexplicably high potassium levels, but that has now resolved. He is full of life, energy, and a great desire to self-destruct that keeps me always on my toes. He is such a sweet and joyful little guy. We have been blessed, but now we're facing an MRI on Tuesday morning to find the cause of multiple lumps on his head. It is a good time for me to remember the words of faith I penned two years ago. May God bless all the families that face the fear of scary prenatal diagnoses and daily live the life of caring for Heaven's children.
"Now just take one,"a kind, naive lady sweetly advised Toby, holding out a large bowl of candy. Toby took one, placed it in his bag, then took another and reached for a third. "Mommy," Naomi whined, half-way down our street, "my knee's hurting. Can you carry me?" Most of Naomi's joint pain has vanished since going gluten-free, but it occasionally resurfaces, and it struck her nearly lame last night. I ended up carrying Toby and dragging Emma while Matt carried Naomi. "Why didn't we bring the wagon?" Matt called back to me over the crowd. "I don't know, remind me next year," I yelled back, nearly panting for breath. We decided that one trip up and down the street was more than enough this year.
