crisp, breezy days of November were just beginning to signal mid-autumn in the San Francisco Bay
area. I was working as a courier for Bank of America and was finished with my
day's driving. As I pulled into my driveway and opened the car door I heard the
jangling of the phone inside the house. Rushing to unlock the door, I hurried
inside and answered the phone, surprised to hear the voice of my long-time friend who lived in Arkansas with her husband and two children.. We
usually only called each other at "prime time" when rates were lower.
"Helen! What are you doing calling me in the middle of the day?" Her voice sounded strained. "Jan, our Tee is really sick and in the hospital. He started
having seizures yesterday and we took him into the emergency room. They can't
stop the seizures."
Tee had just turned two in July. A few weeks
before Helen called, I'd received a tape from Tee and his sister, Joni, who had just turned three. On the tape they both sang songs they were learning in Sunday School and chattered about what they were
going to be for Halloween. Things seemed to going well for Helen and her family,
so it was a shock to hear this disturbing news about little Tee.
The next day Helen called to tell me that Tee had been transferred to a larger hospital in
Rogers where there was better equipment and a pediatrician. The seizures were still not under control, but he wanted to talk to me on the phone
for just a few minutes.
"Hi, Aunt Janny." His voice sounded so tiny and
Tee Baby. How's my boy doing?"
real sick," he almost whispered.
Tears began welling up in my eyes and I tried to talk over the lump in my throat. "The doctors are going to help you get better, sweetie. I love you very, very much."
love you, too…" his voice trailed off.
Helen got back on the line. "Jan, I have to go. He's seizuring again!" Right after that,
Tee stopped breathing and had to be resusitated twice. He was moved to the intensive
care unit and had not regained consciousness after he talked to me on the phone. Those
were the last words he was ever able to speak. He slipped into a coma and the
doctor told Helen that Tee's condition was very critical and possibly fatal.
I made arrangements to take off work and booked a flight to Arkansas. When I arrived at the small hospital
I went to the Pediatric ICU to see Tee. He had IVs and various tubes running
from all parts of his seizuring body to medical monitors and machinery. His eyes
twitched, but they didn't open. His body trembled rhythmically in seizure activity. First the left side of his face would twitch, then his left arm and hand, then his
left leg and foot, then his right side would become affected. The procedure would
grimly repeat itself as if some ghastly remote control had taken over Tee's functions.
As I stroked his soft hair, I continually talked to him. He seemed so
far, far away, but I felt like maybe he could hear us or feel us touching him and loving him.
We certainly wanted him to know that one of us was always there, praying desperately that he would just wake up and
be all right.
The hospital staff was kind enough to let us use an empty room to take turns sleeping in over
the next couple of days. One nurse even came in as she was going home after her
shift and took our bag of dirty laundry home with her, bringing it all back clean and folded the next day! The pediatrician was there day and night, trying everything he and his colleagues could think of to help
Tee. Finally, after two days the decision was made to transport Tee to Little
Rock Children's Hospital where state of the art technology could be accessed.
Children's Hospital was much larger, considerably
more formal, and seemed somewhat formidable after spending the previous days in the smaller, more intimate hospital at Rogers. Fortunately, we
were able to stay at the Ronald McDonald House, an apartment-like complex used to temporarily house families of critically
ill children. For a very nominal fee we had a place to sleep and eat and take
brief respites from the hospital. This was especially helpful for little 3 year
old Joni, who really needed a break from the stressful atmosphere. I spent a
lot of the time taking care of her, playing games and coloring with her, anything to distract her from worrying about her
Now Tee had a whole team of specialists working on his case.
They tested him for everything imaginable: toxic poisoning, infections from ticks, meningitis. The tests never yielded any new information, and Tee remained unconscious, his condition growing worse
every day. The electroencephalogram (EEG) results showed that he had a significant
amount of brain damage, but the doctors still couldn't tell exactly to what degree or what was causing it.
After Tee had been in Little Rock
for about 5 days, the results of all the batteries of tests were in. There was
no known cause for his illness. As we boarded the elevator later that day for the umpteenth time to go up to ICU, one of Tee's
doctors, a young intern, followed us.
"Oh, I've been looking for you," she said curtly, clipboard in hand, stethoscope around her
neck, "We have finished consultation about your son." She glanced down at her
notes. "He's had a massive assault to the brain, probably from encephalitis,
a brain infection. There is extensive, irreversible brain damage."
There was dead silence for a brief moment, then, realizing that Helen was still trying to
process this bombshell that had been so tactlessly dropped upon us, I asked, "So, what exactly does that mean? What do we do next?"
Without even looking at any of us, she said detachedly, "His entire brain has been assualted. He will never walk or talk again. He's
spastic quadriplegic, probably blind and deaf. He probably won't live longer
than a few months. We'll put a feeding tube in because he will never be able
to eat by mouth. You may want to consider putting him in a facility where he
can receive constant medical care." The elevator doors opened and she stepped
out without another word. We stood there silently shocked, bewildered, and afraid
to think about what was ahead.
Fortunately, there were other doctors and nurses who were more compassionate and informative,
and who gathered around Tee's bed in what seemed to be a nonstop vigil. Often,
during a harrowing time, God places special people in just the right place at the right time.
Tee had a nurse who was absolutely that person. I was spending the night in the hospital the
night after we'd received the horrible news from the witless intern. I knew Helen,
John, and Joni needed some family time and I also just really wanted to be near Tee.
The rules in ICU were that you could only visit for five minutes each hour. I
sat in the waiting room, watching the clock, waiting for the time to come that I could spend with our precious angel boy. At midnight I went in, noticing the somewhat more relaxed atmosphere of the late night
shift. I stood by Tee's bed, telling him how much we all loved him, stroking
his hair, kissing his soft, chubby cheek. The monitors that showed his vital
signs didn't look good--the constant seizures caused his heart rate and respirations to remain very erratic.
From behind me came a male voice with a lovely Australian accent. "So, you must be his Mum, eh? He's quite a boy, isn't he?"
I quickly brushed the tears away. "Yeah, he's
really a little fighter, but he's having a tough time." I turned to look at the
speaker. He was a young nurse with an armload of towels, washcloths, and other
hospital paraphernalia. He put the things down at the foot of Tee's bed and stood
by me, taking one of Tee's tiny hands in his large one.
"How long's he been in ICU?" he asked gently.
bet he'd really like to be held. You want to hold him for awhile?"
My heart melted. Because of all the tubes and
devices Tee had been connected to, we hadn't been able to even cuddle him, much less hold him.
The policy here so far had almost been hands off. "I'd love to hold him,
but how can I with all this stuff….."
The nurse pulled the curtains around so that none of the other staff could see us. "Well, I have to give him a bed bath and change his sheets, and it'll be a lot easier if you help me by
holding him, so let's do it!"
He brought in a rocking chair, and by some miraculous contortions he managed to lift Tee,
tubes, wires (including the 15 EEG wires taped to Tee's scalp), catheter, and all and place him in my lap. I never knew holding a child could feel so good. Tee's tight,
stiff muscles began to relax as I sang quietly to him. The twitching slowed to
just slight movements, and his heart and respiratory monitors began beeping rhythmically rather than the erratic stop-start
stacatto they had been playing. The nurse disappeared for about a half hour and
just let me spend some blissful, precious time that helped to heal the jagged edges of the past week for both Tee and I. When the nurse came back, he let me bathe Tee and he assisted with getting the water
and handing me the towels. He, too, was amazed at the change in Tee's vitals
and in his more relaxed muscle tone.
I never knew the nurse's name, and we didn't see him again at the hospital. Wherever you are, though, God bless you!
A week later, Tee opened his eyes. We were so
excited at this small, hopeful change. But that was all that changed. It was difficult to tell if he could see or not, because his eyes wouldn't track anything and he didn't
appear to look at us. He did not move at all, except for the seizuring. The doctors said he was still in a semi-comatose state. They set up a training session to teach Helen how to feed him through the feeding tube they'd placed in
his stomach, and how to take care of him once he was able to leave the hospital. A
few days later I had to return to California, heartsick
and sadder than I'd ever been, hating having to leave my friend with so much on her plate.
A couple of weeks later, Tee was sent home with an assortment of seizure medications and referrals
for various types of therapy. During the next few months, I talked to Helen often. Every time we talked I could hear Tee crying a high-pitched, distressed cry in the
background. She said he cried almost all the time and he seemed bewildered by
all that had happened to his body. My friend sounded so exhausted that I knew
she couldn't keep up this pace, plus there was little Joni to take care of. Helen's
husband coped with the stress by staying away from home as much as possible.
In May, I quit my job and moved to Arkansas
to help take care of Tee for awhile, planning to stay a couple of months. I was
alarmed when I saw him. The once chubby, cherub-like little toddler was now thin
and pale. His lips were pulled back from his teeth and his limbs were all very
stiff and tight, the result of the spasticity of the cerebral palsy. But I looked
into those big, brown eyes and saw such innocence and such beauty! Something
told me that he could understand more than most people were giving him credit for.
I ended up staying in Arkansas
for two years. Each day as I worked
and played with him, I realized what a wonderful, special boy Tee was. He
began to smile, and that smile lit up my world! A strong bond grew between us
and soon he was spending as much time with me as with his parents. I will be
eternally grateful to them for sharing him with me. I think he knew that I believed
in him, so he tried very hard to meet the challenges we put before him. He didn't
talk, but I could coax him into making sweet cooing sounds. He became able to
eat pureed foods by mouth without choking at every meal.
and teachers at Tee's preschool were compassionate and helpful. They encouraged
me to work with him, taught me to exercise his limbs to reduce the spasticity so that the muscles wouldn't be so tight, and
showed me techniques for stimulating his vision and other responses. I learned
how to feed him properly by mouth, and now he didn't need the feeding tube at all. I
also began volunteering and working with other children with disabilities as well. Soon
I was hooked! A job came open as an early intervention parent trainer and I was
The wonderful staff there encouraged me to go back to college and begin working on a degree in special education,
so I enrolled at the community college and took some basic courses. Soon I needed
to transfer to a university to finish my degree. Helen had relatives in Flagstaff, AZ, and I knew the university
there had a very good special ed program. We all decided it was time for a change,
so we made the move together. The class Tee was enrolled in at Flagstaff was a refreshing change for us. If
he'd stayed in Arkansas, now that he was graduating from
preschool, he would have had to go to a county day school where the students were all disabled. Now, in Flagstaff, he was in a self-contained
class in a regular elementary school. His new teacher was already thinking about
integration and including disabled students in regular classrooms, even though nobody else at the time thought it would work. Soon Tee had lots of friends, both with and without disabilities, and went to regular
class for part of the day.
I plugged away at college and earned my degree while working as an aide in Tee's classroom. Those next few years were probably the best years of his life. He
didn't learn to walk or talk; his vision was unpredictable because of cortical blindness; he had grand mal seizures every
single day. He was profoundly disabled and would always be so. But he had a network of friends who invited him to birthday parties and to other activities. He smiled a lot and made sounds to indicate he was having a good time (or not!). His birth parents moved to Phoenix, but
Tee got to stay with me. It was a very happy time for me, too. I was finally getting to really be a mom! We made a "shared
parenting" arrangement so that I was Tee's legal parent as well.
Tee flourished in the ever more stimulating environment.
His teacher pointed out to me one day that whenever he was with his "typical" peers, especially in their cooperative
learning groups, he held his head up, stayed awake, and didn't have nearly as many seizures.
He got to go to 6th grade camp and a bunch of those cute middle school girls even sneaked him into their cabin, wheelchair
and all. He was declared the cutest boy in the 6th grade by a number of them….they
said he was the strong, silent type.
We spent a lot of great times together up in those beautiful mountains and woods of Flagstaff. We went fishing,
camping, to the movies, and to every event in town. Often his friends whisked
him away when they met us, but that was alright. It was so good to see Tee happy
and relatively healthy in spite of several surgeries to try to correct some of the damage done by the spasticity in his legs. Twice he gave us a scare when he developed a cyst on his lung which in turn caused
pneumonia. He was in the hospital many times, but seldom complained and always
amazed us with his ability to recover.
When I graduated from NAU, I was offered a teaching job in Bakersfield, California where there was an excellent and
innovative program that was showing amazing progress in teaching disabled students to sit, stand, and walk. Helen was ready for Tee to come spend some time with them, so he went to live in Phoenix for awhile. The plan was for me to get
settled in Bakersfield, then Tee would come and we'd see if
he could benefit from the special program. We thought there still may be a chance
that Tee could learn at least to sit up on his own, and maybe even to stand.
Over the next few months, Tee became ill with pneumonia again, then developed chronic lung
disease. He was in and out of the hospital.
Many weekends I flew to Phoenix, took a taxi from the airport to the hospital and stayed
there with him until I had to fly back to Bakersfield on Sunday
night. As he became more ill, I begged out of my teaching contract and moved
to Tempe; I just
couldn't stand being so far away from my boy!
I quickly found an apartment in Tempe,
and Tee lived both with me and with his birth parents. At first he seemed to
get better, but then began having breathing problems again and went into the hospital with pneumonia. He had a wonderful lung specialist and a great pediatric neurologist, who worked well as a team to try
to help us keep Tee as healthy as possible. They showed us how to do breathing
treatments and percussion to loosen the fluid in his lungs, and they sent us home with a suctioning machine to use when nothing
else would work. His doctor told us he felt we could do everything at home for
Tee that they could do for him at the hospital. Tee was so relieved to be at
home--he despised being in the hospital, and had constantly vocalized his opinion by almost "growling" at any medical personnel
who approached his bed.
Over the next year, Tee never really got well. At
times he was less congested than others, but it was a constant uphill battle. We
gave him breathing treatments every four hours, around the clock. The doctors
recommended countless decongestants and antihistamines; we put special air conditioning filters in our homes, but Tee's health
continued to decline. One day Helen and I met with the lung specialist and expressed
"Tee has so many neurological problems that his brain is having a hard time keeping up with
his physical challenges," Dr. Legris told us gently, "I don't want to sound negative, but I want to be honest with you. I don't think he's going to get better. I
think that each time he gets sick, he's going down a little further, and not coming back to where he was. We can put him in the hospital and we can put him on the feeding tube again and even put him on a ventilator
if necessary, and keep him alive for a long time. But the decision is ultimately
up to you and I will respect and support you in whatever decision you make."
We talked it over for a long, long time. It was
so difficult to think that we were losing our precious angel boy, but it was even more difficult to watch his suffering and
distress increase. After many tears, we decided that we wouldn't put him in the
hospital anymore for the lung problems unless he became so distressed that we couldn't help him. We felt like this decision honored Tee's wishes, because we knew how he hated being in the hospital. We were in constant contact with the doctors, and they assured us that we were doing
the very best that could be done. We opted to keep him at home where we could
hold him and love him for as long as God allowed us to have him. I still felt
like no matter what happened, if I just worked hard enough at it, Tee would be okay.
After all, hadn't he been through a hundred crises before this? And he
always survived, got over the hump, and moved on. Surely this was just another
of those bumps in the road, albeit a large one.
Even though we saw a daily decline in Tee's health, we resolved to make his life as normal
and stress-free as we possibly could. I continued to take him fishing, to the
mall, to the movies. One day, out at Saguaro
Lake, he caught a tiny fish and was hanging on tightly to the pole as
I helped him to reel it in (this all had to be done hand-over-hand). After showing
him the fish and taking it off the hook, I told him that it was too small to keep and that we had to throw it back in the
water. When I dropped the little fish into the lake, Tee stuck out his lower
lip in a pout and let out a most pitiful cry. He was really ticked off at me
for letting his fish go!! I got a lot of dirty looks from the bystanders, too,
for making this poor little boy cry!
We tried to have a normal spring, that spring of his thirteenth year. Much of the time Tee slept through the activities, but some days were better than others and he enjoyed
what we were doing. Some days he cried, which was rare for him, so we went home
and cuddled quietly.
Around the middle of June, Tee seemed to lose his previously strong will to survive. He never wanted to eat, and I found my self having to force him to swallow. He choked on everything, even liquids that we thickened for him.
He lost weight and his lungs were always congested, even with the never-ending breathing treatments. I got so I could give him a treatment without even fully waking up.
He needed suctioning more and more often, and he slept and slept. And
no matter how hard I tried, I could not make him fight to stay alive anymore. It
took a long time before I realized that he was trying to tell me that he was tired of the struggle.
By the last week in July, we knew our beautiful boy was dying.
The doctors felt he may have suffered another neurological setback, which added to his chronic physical difficulties. Helen came and stayed at my house and we spent Tee's last days holding him. He never seemed frightened, and the doctors gave us medication to alleviate any of his pain. I had learned long ago that Tee loved to be read to, and had read several of C.S. Lewis's Chronicles of Narnia to him over the years. I began reading one of
the books to him now, and as I read, he looked right into my eyes. For just a
few moments he seemed more clear and lucid than I'd ever seen him since he first got sick.
I found that as I read, he relaxed and his breathing was not so labored.
Quietly, on the afternoon of July 28th, Tee slipped into a coma. During the night we took turns holding him, and in the early morning hours his sweet spirit left this world
for a much better place. He would have celebrated his fourteenth birthday the
next day. I was heartbroken beyond belief, but so glad that he had died here
at home, surrounded by love. At his memorial service a few days later, over 300 people
came, attesting to the fact that Tee had indeed touched many lives. Such a tiny boy, with such a huge spirit of love
Not a day has passed during these fourteen years since Tee died that I haven't thought of
him--sometimes with such sadness that words can't even begin to describe, sometimes with so much joy that I feel my heart
will burst. But always he is in my heart and on my mind.
privilege of knowing Tee and getting to raise him as my son has been, without reservation, one of the two best parts of my
life (the other best part I'm living right now, as I'm raising Tee's nephew, James, who lives with me and is a healthy, strapping
12 year old). I always thought of Tee as a teacher. I watched as he taught a group of rowdy fourth graders about compassion, patience, and acceptance. He woke me up and made me realize that the important things in life are things like
learning to love someone who cannot hug you with his arms, but can embrace you with his deep, brown eyes. Tee taught me that a big, empty space in my heart could be filled to overflowing by a tiny boy who could
not walk, talk, move his arms, or even see very well, but who could communicate love and understanding in a way that can't
be measured by any of our senses. He had a way of always bringing out the best
in all of us. I guess that's why I will always think of him as a most precious
gift from God.
14th year in Heaven, my Sweet Prince.