Life Sketch

Ian Aston Brown Life Sketch

Ian Aston Brown was born August 5, 2002, at Magee Women’s Hospital in Pittsburgh, PA.  From the day he was born, Ian proved that he was a fighter.  He came to us full-term, but he was underweight and about ten weeks behind in development.  He was in neonatal intensive care for 14 days as we waited for his lungs to develop, his heart to begin pumping correctly, his pneumonia to dissipate, and his jaundice to disappear.  At the time we thought he must be doing pretty well compared to other NICU babies.  It was only later that we learned that his open-air bed was a precaution so they could get to him immediately if necessary.

Before leaving the hospital, the nurses informed us that he had very definite ideas about when and how much to eat – and that he found the hospital feeding schedule lacking.  Once home, he was eating round the clock – and growing like a weed.  They had assured us that he’d let us know when he was finished eating, but actually he would regularly continue to eat until he started over-flowing.  I guess he was just making up for lost time because there were several instances when we’d get him from his crib and he would be visibly bigger than when we put him down the night before.

His first few years in Pittsburgh were a blur of laughing, teasing, and chasing – he has a great sense of humor.  As one of his nursery friends put it, “Ian runs!”  And he did.  We saw other parents serenely watching their children from park benches as we frantically tried to keep up with him and guess which direction we’d have to catch him from next.  Open doors, hot stoves, long stairways, and the endless expanse outside…all were potential dangers and required us to run active interference.  We could never be more than a few steps away.

As we were sifting through pictures for his video memorial, we were again reminded of how central books have been to his life.  From before he could sit on his own, he loved to cuddle and be read to or just to flip through brightly colored pages.  When he was 10 months old, Aunt Sunni came for a visit.  As we were driving to Washington, D.C. she was riding in the back with Ian looking at his books.  She commented how well he knew his favorite book, Farm Flu.  Though he couldn’t say the words, from the front seat we could recite any passage (we had it memorized, too!) and, to his aunt’s amazement, his little hands would quickly flip through and stop at the appropriate page.  This love of books continued throughout his life – Nana made countless laminated copies of his favorites so he could read them time and time again.  And every night of the last 11 years, almost without exception, Ian’s day ended with a rendition of either Time for Bed or Goodnight Moon before family scriptures, prayers, and songs, though lately bedtime supplements of Frog and Toad Stories brought a smile to his face as well.

From a very early age, Ian was fascinated with music and responded to its mood intuitively.  His earliest nap times were in his baby swing with classical music playing in the background.  Without any assistance, he learned to sing and do actions to the Mr. Rogers theme song, and we could often hear his sweet voice drifting into our room as he played and sang happily in his crib.  The first word we knew he recognized was “piano”—whenever he heard the word he would turn and look at our piano.  As soon as he could get there on his own, he loved to play the piano, especially duets with Mom.  We color-coded the piano keys with stickers, and before he was three years old, he could play the introduction to Rubber Ducky and a pretty accurate one-note bass accompaniment for The Muppet Show Theme, which he and Mom played for a primary talent show.  The day before Anya was born, Ian turned 3 and opened a huge present from Uncle Dylan – a gorilla he named Bear.  Once out of the box, Ian insisted we sit Bear on the piano bench.  He then deliberately placed (and replaced) Bear’s hands on the keys, hoping for Bear to favor him with a song.  This was a recurring theme – no matter where Bear was in the house, Ian would often direct Clayton to pick up the gorilla and bring him down to the piano for another attempt.  Ian was definitely persistent.

Ian had a prodigious memory.  Well before he was two, we could sing any of a number of familiar primary songs and he could fill in words.  He also had half a dozen children’s books memorized (and so did we) and when we went to Taiwan, much of our travel time was spent reciting The Cat in the Hat, Farm Flu, Click-Clack Moo, Green Eggs and Ham, and others, always with Ian filling in whichever words we chose to leave out.

When we moved to Taiwan, Ian’s books and his favorite toys accompanied us, including Mike the talking lawnmower and his Fisher Price school bus. One evening at bedtime, when told that it was time to put his toys away, he picked up his school bus and headed to his room. After placing his bus on the shelf, he burst into tears but returned to us clapping his hands in praise of his own obedience.

Though people loved Ian wherever he went, he became particularly popular in Taiwan.  His beautiful red hair, big brown eyes and gorgeous long, dark lashes, along with his winning smile made him a favorite of all the Taiwanese girls.  Everywhere we went, girls would stop to practice their English on him or have their pictures taken with him.  We lived half an hour away from the nearest city, so travel in to Taipei (or almost anywhere actually) required both bus and train, to Ian’s great delight.  On these trips, we would often see teenage girls nonchalantly pull out their cell phones and try to discreetly snap pictures of the cute little foreign boy.  During one of our trips to the zoo, a group of perhaps 20 teenage school girls in uniform swarmed his stroller.  We were able to snap a picture (as did they) and captured his look of bemusement.

The bond between Ian and Anya has always been a special one.  Anya was born the day after Ian turned three and he was not a particularly careful toddler.  In preparation, we had taken him to the store to pick out a baby doll for him to practice with.  We instructed him in how to be “soft” with baby Anya, but were still nervous about bringing a newborn home to a big brother who crashed through toys and stomped on toes and whose favorite word was “Bam!”  But from her first moment in the house, Ian was more than careful.  He took on the role of Anya’s protector.  It was his job to let us know when she was crying or if he thought she needed to be picked up.  We will always remember his low, serious voice reminding all of us, “Bee An.  Sahhhh!”  (which meant “Baby Anya.  Soft!”)  Though the role of protector has fallen to Anya as the years and the disorder have progressed, the closeness and understanding between the two of them has not faded.

As Ian grew, anomalies in his development, particularly language, had become increasingly apparent and had us searching for answers.  Just after Ian turned five, we received the diagnosis that made everything clear.  Ian was diagnosed with Sanfilippo Syndrome, a disorder which led to regression and loss of all of the skills he had struggled his whole life to develop.  Things that usually come naturally such as combining words, eating with utensils, and reflexive actions as basic as catching himself when he was falling had to be deliberately taught and practiced.  His life revolved around therapies, hospital tests and procedures, doctors and specialists visits, medications, and special equipment.  His first two weeks were spent in NICU on oxygen and feeding tubes and countless monitors.  As a preschooler, he put in a full-time 40+ hour week between preschool, speech therapy, occupational therapy, and intensive behavioral therapy.  He endured many hospital stays for various illnesses, as well as two hernia surgeries, a tonsillectomy and adenoidectomy, placement of ear tubes twice, sedation for two MRI’s and two ABR’s, 3 sleep studies, several EEG’s, EKG’s, and echocardiograms, full body x-rays, and a swallow study in addition to the extra accommodations required for even routine dental, vision, and doctor’s appointments.  He was regularly seen by his neurologist, cardiologist, geneticist, ophthalmologist, physical therapist, orthopedist, gastroenterologist, and at times his occupational therapist and speech therapist in addition to his pediatrician.  His latest assistive equipment included a wheelchair, a stander, and leg braces but had in the past included communication devices and hearing aids as well.  His medications included up to 4 allergy medicines at a time, and lately involved two seizure medications as well as prescribed thickening for liquids and a multi-vitamin to ensure adequate nutrition.  The tasks of feeding, clothing, changing, bathing, grooming, and medicating Ian typically took 6 hours in a day.  And yet, through it all, Ian found joy in every day of his life.  He remained patient, cheerful, and happy – an example of enduring patiently (and pleasantly) for all of us.

Ian brings out the best in people.  His needs were great, but provided great opportunities for family, friends, teachers, therapists, doctors, and ward members to serve.  For much of Ian’s time in Primary, he was accompanied by someone other than Mom or Dad to help him.  His second week in Primary in Memphis, the Primary president felt inspired to spotlight Ian so the kids could know and understand him better.  From that point on, he was a star in the Primary – children wanted to sit by him and help him.  As one of his friends told me, “Ian is cool!”  Such little acts of kindness accumulated in a feeling of overwhelming love that accompanied Ian wherever he went.

There have larger acts, as well.  While in Memphis, the Make-a-Wish Foundation granted Ian’s wish and sent our family on a trip to Sea World in San Antonio.  A school in a community which had just been devastated by floods and tornadoes had raised the money and invited us to an elaborate, student-led assembly to present this gift to a child they had never met.  Because of Ian, we have been privileged to witness such acts of selfless love and service first hand.

Raising Ian meant raising a child with differences.  These differences are not bad, they are just different.  We have heard it compared to planning a trip to Hawaii and ending up in Japan.  At first, there is disappointment.  There are things that Ian was never able to do that we hoped he would experience.  But Ian brings a new perspective and special experiences that we would have missed if he had been given the journey we were expecting.  With this perspective, we are truly thankful to have borne Ian’s struggles with him and recognize the growth that came from sharing his life.

Through Ian, we have met truly remarkable people that we would otherwise never have known: people willing to sacrifice and give from their hearts to help him and our family; doctors who volunteer time to talk to Ian’s peers or who bring balloons to a hospital recovery room; therapists who share experiences they’ve had praying for Ian and our family; teachers who call to check on Ian when he has missed a day of school or who invite Ian to their classrooms for story times just because they know he would enjoy it; friends who shower him with homemade Valentines cards and pen-pal notes and make the effort to include him in school and church activities.  We have seen Ian bring out the best in people and he has helped us see others a little more as God must see them.

Early Monday morning, September 16, Ian returned peacefully to his Heavenly Father after an exceptionally enjoyable weekend.  He went to bed Sunday night happy and surrounded by his loving family and has since continued to rest from his worldly struggles.  Though his passing leaves a tangible void in our lives, his influence will live on through all those he has touched.  He was able to enjoy life to the last and is now free from the limitations and pain of this mortal world.  We will forever be grateful for the time we had with him here and find comfort in the promise of reuniting with him in his perfect state.