Thursday, January 5, 2012
Ten years ago I married my best friend who had challenged and inspired me when most other boys seemed superficial and dull. We packed our few belongings and headed to a Seminary on the East Coast. We had no idea what the next ten years would bring our way: deep peace and joy, close friendship and warmth, tragic loss and mounting stress, distance, bitterness and resentment, reconciliation, refreshment, babies and more babies, disease, doctors and more doctors, tearful prayers and astonishing answers, and the unmistakable hand of providence through it all.
How do you summarize ten years? Is it the events? The emotions? The growth we've experienced? It's even more complicated on a blog, since I'm not exactly sure who I'm summarizing for. I'd sum it up differently for my family, a stranger, or my long-lost friend. But however I put it down it will be inadequate, some things you just have to experience to understand.
2002: Matt and I were married, moved to the North Shore of Boston and continued Matt's seminary education. I worked as a Nanny for two families that year. We helped lead the youth group at a Reformed Baptist church. We spent the year visiting the beaches of the Atlantic Ocean, taking long walks through hill country, and chasing each other through the haunted halls of Matt's security job in an old convent turned advertising agency. One of the boys I nannied for had Autism and it was here that I first learned about therapies for this disorder and gained the skill of gluten-free, casein-free cooking.
2003: We survived a colossal New England winter. Matt was accepted into the tuition-paid PhD program at Wheaton college in Illinois. We bought a little condo in a half-way safe neighborhood and learned a lot about cultural diversity there. I miscarried our first two babies. One night, on the balcony of our condo, I was struck with the deep conviction that children are gifts from God, and I prayed, much like Old Testament Hannah, that if God granted me children I would surrender my plans for them and graciously accept his plan for them. I felt deeply convicted then that suffering would follow. Several weeks later we learned that another child had been granted us. This baby stayed with our family.
2004: In January we headed to our 20 week ultrasound like any naive first-time parents. The technician was friendly at first but grew more distant and less chatty as the exam went on. She hardly seemed happy when she told us we were having a little girl. I figured she'd had a long day. One week later our OB told us bluntly that our little girl's kidneys were too "echogenic" or bright on the ultrasound. She had no idea what this meant and advised we see a specialist. We declined, being confident that everything was fine and knowing we didn't have the money for needless doctor's visits. It is better that we didn't go. I wasn't mature enough then to handle the diagnosis that would come.
In March I was put on complete bed rest for preterm contractions. I spent six weeks reading, crocheting, and crying at every episode of Extreme Makeover: Home Edition. On May 17th, just over three weeks before I was due, Naomi Katherine Eby was born. Her club feet immediately dampened the mood, and it wasn't long before they observed her distended abdomen and ordered an ultrasound and blood work. The next day Naomi was placed in intensive care as her kidney function declined and the doctors began to discuss the possibility of putting Naomi on dialysis. We cried and prayed and sat at her little plastic bassinet in that bright, beeping room as many hours as we could. Everyone we knew prayed, and by her fifth day of life Naomi's kidney function had stabilized at impaired, but sufficient levels. She came home on Matt's 26th birthday.
Though a relief and a joy to bring her home I soon learned the stress of a special-needs baby. She needed routine blood draws, ultrasounds, nephrologist appointments, and orthopedist appointments, alongside the normal well-baby visits. But far more stressful was her unique personality. She screamed just about night and day, she never slept for more than 20 minutes at a stretch and woke in full-blown screams again. It took ages to settle her again. One day, after reading that a newborn should sleep 16-20 hours a day, I recorded Naomi's sleep patterns and found that her 10 and 20 minute naps only totaled about 6 hours out of 24! I used to dream about committing myself to an asylum just so I could sleep. I tried altering my diet. I tried "sleep training her" (Ha, Ha, Ha! She could cried for five hours at a stretch without falling asleep!) I only found a measure of rest when I gave in to putting her in bed beside me, wearing her around while I was awake, and nursing her most of her waking hours. We later learned that Naomi had a complete inability to concentrate her urine causing her to dehydrate quickly, hence the need to nurse constantly. She also soon gained a diagnosis of "sensory integration disorder" which basically means hypersensitivity to every stimuli and an inability to calm oneself. No kidding.
In December I began nannying for a family with a newborn little girl. I brought Naomi with me and the two girls grew up as friends the first three years of their lives.
2005: Naomi began having physical and occupational therapists visit our house weekly. She was hospitalized three days again in March, but soon after began to sleep through the night. Phew! In June, just after Naomi's first birthday, we learned that God had granted us another baby. Two separate geneticists told us that they didn't know what disease Naomi had, but it certainly wouldn't repeat itself with our other children. We were excited, but tension mounted. Naomi was still quite needy and Matt was supposed to be finishing up his dissertation within a year to graduate within three years. We learned then what happens when two people are pushed to the point that they have nothing left to give to the other: distance and bitterness.
2006: On March 6th Hannah Claire Eby arrived safe and healthy. Matt didn't get the dissertation finished to meet the optimal three year goal and opted to use a fourth year of full-time work to finish. I continued to nanny, now taking two kids with me and found support with other moms in our local church.
2007: In January we learned that a third baby was on the way. Matt was still unable to finish the dissertation and bills were mounting. We would have to find full-time work to support the family and try to finish a dissertation on the side, long-distance from the college. On May 17th, Naomi's third birthday, my grandmother passed away, and Matt and I sat stunned at another 20 week ultrasound. Our third little girl's kidneys were echogenic. This time we opted to see the specialist.
In June we were offered positions as dorm parents and bible teacher at a small christian boarding school in Iowa. Just before we moved in July the baby showed fluid collecting in her abdomen and the pregnancy was watched every few days with ultrasounds. We spent July and August settling into our new house, driving the hour-long trip to the University of Iowa for monitoring and tests, and meeting our new family: seven teenage boys who lived in the dormitory attached to our house.
On September 9th labor was induced almost a full month early because the baby was in clear distress. Emma Peace Eby arrived and was whisked away to intensive care. She spent a total of eight days there before being sent home. She was a peaceful baby and we began to love the busy, full days of boarding school life. In October we finally received a diagnosis for Naomi and Emma's kidney disease. It was scary and dark: Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), a disease that the information on the Internet mostly described as a death sentence. Matt was able to accomplish absolutely nothing towards the dissertation that year.
2008: Matt, Emma, and I flew to Philadelphia in April for a meeting of and ARPKD/CHF support group and learned more accurate information about the disease. We were also accepted into a study on the disease at the National Institutes of Health (NIH) in Maryland. NIH flew our entire family out to Maryland for a week-long research trip in June. The girls were poked and scanned and tested with every possible test that week. At the end we were sat down in a conference room with doctors and nurses who told us that our girls had a mild version of ARPKD/CHF, that their condition would deteriorate slowly, and that transplant and surgeries could be many years away. We were advised not to try to have more children unless we wanted to do In-Vitro Fertilization with genetic screening to implant only healthy embryos and destroy the diseased ones. They looked at us like we were crazy when we said we could not ethically do that.
Two days after returning from NIH I began to feel nauseous. Baby number 4 was already on the way. I dreaded the next 20 week ultrasound. Matt dedicated the entire summer to his dissertation so I took the kids on vacations by myself that year. In August our dormitory filled with seven teenage girls and the busy year began. In October, at the dreaded ultrasound, the baby was found to have only one normal kidney. Subsequent specialist ultrasounds showed a small "right" kidney attached to the bottom of the left, but no signs of polycystic kidney disease.
2009: February 17th Tobiah Matthew Eby made his debut, healthy and strong with one good kidney. With the down-turned economy enrollment dropped, our dormitory was closed, and we knew major staff-cuts would be made at the boarding school. Matt was granted only one more year to finish the dissertation. When other employment couldn't be found we made plans to move in with Matt's parents and make a last push to finish the PhD. We moved in July. Naomi began kindergarten at the nearby public school, and we settled into a new church home and routine.
2010: For months Matt had done nothing but eat, sleep, and breathe dissertation. In February, two days before Toby's first birthday he turned in a completed draft of a 100,000 word masterpiece. In April we drove to his oral defense, which by all accounts he nailed. Students congratulated Matt in the hallway and said it was the best defense they had ever seen. Matt called me in good spirits and I drove to pick him up with the kids. But the committee was solemn when Matt was called in. The dissertation was not passed, the PhD was not granted. I will not speculate here as to why. Matt was never given a straight answer. He had made mistakes in the process, the draft was not perfect, but it was almost admitted that he never would have been able to please the committee with the topic he chose. It was too controversial, too volatile. Perhaps the fault lay with those who approved his topic six years earlier. Whatever the reason, it was not to be. Matt was granted a second masters degree instead.
With the economy plummeting a PhD was practically useless anyway. There were no jobs in that field. There were no jobs in any field. Matt put out applications and attended interviews in all fields of work, but nothing materialized. Tensions grew with Matt's family, as they will when any two families live on top of each other for over a year. I began blogging as an outlet, and a way to focus on the positive things in my life that summer. Naomi and Hannah were diagnosed with Celiac Disease and I began gluten-free cooking. By Christmas things were desperate.
2011: A neighbor helped Matt land a factory job. A friend from Matt's parents' church showed us a rental house. Our church family helped us fix it up and move in. I began homeschooling the girls. In March we learned that baby number five was on the way. In April Matt got a job as a phlebotomist, which was slightly more lucrative and a lot more secure.
It was a healing summer, in our own house again, with Matt home every evening--no school work hanging over his head. We went for walks again, spent evenings talking again, began to live again. In September Matt was hired by the American Red Cross, and in December Elijah Gabriel Eby arrived, healthy and whole.
2012: I truly have no idea what will fill this
year, but I look forward to finding out.
Ten years ago I married my best friend, and we walked a difficult road of blessing. Remembering those years here (however briefly and inadequately) is my way of celebrating them. May we walk together many more years.