“For you created my inmost being, you knit me together in my
I praise you because I am fearfully and wonderfully made” Psalm139
My story begins about a year ago. I was tucked comfortably within
the perimeters of my mother’s womb. My mother and father along with
six other siblings lived in a “not so good” area of what is East St.
Louis, Missouri. I know my parents loved me very much, but do to
financial circumstances, they felt they could not adequately care
for another child. They loved me enough to not abort me but to carry
me to full term and give me to a family who could take better care
of me. So they contacted an attorney and began their search for just
the right family.
On March 6,2007, I entered the world at 10:34pm at St. John’s Mercy
Medical Center, in St. Louis Missouri. My new adopted family awaited
excitedly as they anticipated my birth. But shortly upon entering
this world, the doctors noticed some things with me that were not
quite right. The bottoms of my feet were very rounded and my heels
protruded. The doctors called it “rocker bottom feet”. They said my
hands were “polydactily”. I guess it’s not normal to be born with
six fingers on each hand. They said the bridge of my nose was too
wide and my forehead was too high, My hair line too far back, The
top of my head too soft,
and my muscles were too tight. Now if you add up all those “too’s”
that makes me about a ten. I thought that was a pretty good score if
you ask me! Apparently, the doctors had a different opinion. Because
I wasn’t breathing so good they put a tube down my throat and hooked
me up to a ventilator with various other wires, tubes and monitors
and placed me in a warm bed in the special care nursery. The nurses
placed a sign on my bed with what was to be my name for the next
month, “Loveless, baby boy”.
The Doctors told my birth parents and my new adopted family that I
had trisomy 13, a rare chromosome disorder that is labeled “not
compatible with life” It means I have an extra 13th chromosome. I
thought, ”wow“ this is great, there’ll be a little more of me for my
new family to love! But then they told them I would be profoundly
mentally retarded and won’t live very long. Sadly, my new family
decided not to take me home. I can’t say I blame them, I didn’t come
with a very good warranty. So my birth family and their attorney set
back out to find me another new family.
Mean while back in the nursery, they removed the breathing tube
because I was breathing much better on my own now. Then they removed
my two teeth I was born with and placed a feeding tube down my nose.
Food is just not quite the same when it bypasses the taste buds!
I had lots of pretty nurses who liked to hold and rock me. I must of
charmed them because they were always bringing me toys, and blankets
and hats to keep my head warm. After a month it was decided that
somebody needed to give me a name so my birth mother named me Seven,
because I was the seventh boy. Hum…. Seven Loveless….I’m not sure I
like that….apparently the nurses and attorney didn’t either so they
started calling me Joey. More distinguished don’t you think?
I was about six weeks old, I got some really good news. My birth
family had picked a new family for me. They said they live in
California and knew how to care for me because they had had a little
boy who was born with trisomy 13 just like me. Their little boy,
Tucker, lived for two years before he went to be with Jesus and now
they want to take me and love me and care for me as long as God
allows me to be on this earth. I couldn’t wait to meet them but it
was going to be another couple weeks before they would be out to get
me so in the mean time, the doctors put in a new feeding tube that
goes directly into my belly through what they called a Micky button
and then I went to live with my foster care family, the Fitzpatricks.
They took really good care of me until my new mommy and daddy picked
On May 9th, I met my new mommy and daddy. I knew they loved me as
soon as they laid eyes on me. They scooped me up and held me for a
long time and took lots of pictures. We camped at Jelly Stone Park
for five days and visited with Yogi Bear before going to see the
judge. When we finally went to court the judge signed the papers and
told my mommy and daddy that I now belonged to them as if they had
given birth to me. They kept my name Joey but gave me a middle name
and a new last name. I am now Joey Lane Huddleston Reite. It was
such a good feeling to know that I belonged to someone!
My parents assured me that the camper was not my new home but that I
had a nice home with my own bedroom right next to theirs. And
awaiting my arrival there was new brothers and sisters, aunties and
uncles, grandmas and grandpas and even a niece…Hum….I’m not sure how
that works, but mommy says not to worry about the details, she’ll be
someone for me to play with.
2000 mi. and five days later we drove up to my new home. We were
greeted by a bunch of people who wanted to hold me and kiss me. For
two days people streamed in and out just wanting to hold and kiss
me. They “ooooed” and “ahhed” over me, I’m not sure what all the
fuss was about, You would think they had never seen anybody from St.
Louis with twelve fingers before!
Then “SHE” came through the door, the one whom they said was my
niece. They call her Sophia. She was not much bigger than me but boy
she could get around. She calls my mommy, grandma. I still haven’t
figured that out yet. She must love me too, because she smothers me
with kisses. And she is always wanting to hold me. So mommy makes
her sit down and gets me all situated on her lap and just as I get
comfy, she’s rolling me back off saying she’s done! Then she piles
blankets on me and says, “Joey go nigh- night” but I don’t want to
go “nigh-night”! She’s always rubbing her hands on the top of my
head feeling my hair. Then she pats me like a dog and starts kissing
me again. But then mommy sees I’ve had enough of this one sided
affair and she comes and rescues me.
Shortly after I came home, mommy didn’t waist any time. She had
lined me up with many doctor appointments. I first went to see my
pediatrician, Dr. Loomis. Mommy says he is the best. Then she told
me we were going to see a the G.I doctor. I couldn’t wait to put on
my camo! I thought, here is my chance to play “G.I. Joe”! But then
she told me that G.I. Stood for gastrointestinal and that this
doctor wanted to check my umbilical hernia, and my Mickey button.
I also see a cardiologist for the hole in my heart, a pulmanologist
for my obstructed airway, a nuerologist for my seizure activity, an
ears, nose and throat doctor, a chiropractor and a opthamologist
because I am very near sighted.
see a physical therapist who likes to stretch and bend me in ways I
didn’t think possible. And on Mondays, Amy from “Pride & Joy” comes
and visits me and we do fun things. She puts me in a parachute and
swings or rolls me back and forth, or bounces me on a ball. Then she
dangles shinny things in front of my face so I’ll grab them. She is
teaching me to roll over and hold my head up and she always has
something new and fun when she comes.
In July, mommy and daddy drove me back to Salt Lake City to go to a
S.O.F.T conference. S.O.F.T stands for support organization for
trisomy 13 and 18. We camped along the way and in Elko Nevada, I
watched my first fireworks from our campsite. When we got to the
conference I met kids who couldn’t walk or talk either and had
feeding tubes just like me. Most of them already had their first set
of wheels, and were being chauffeured around in their fancy Zippie
chairs. My big sissy went with us and I met lots of her friends that
she knew from going to past conferences with Tucker.
This past summer I went to an orthopedic surgeon to have my extra
fingers taken off. I kinda thought it was cool that I could count to
twelve on my fingers, and “high six” everyone but mommy says it
would be too hard to find gloves to fit me in the winter. I guess
she has a point. So the doctor tied some string around them real
tight and after my fingers turned real blue, they cut them off. I
didn’t like it very much and I cried.
I learned to go “frog gigging” at an early age. That’s what daddy
calls it anyway. Mommy lines up my plastic green froggies on the
railing of my changing table so that their beady little eyes are
staring at me. Then after contemplating their position a moment, I
strategically place my arm at just the right angle and “whack” them
off one by one. “Wolfy”, my “partner in crime” puppy, sits in eager
anticipation of the flying frogs and tries to intercept them before
hitting the floor. It’s kinda like team work. Then mommy pries the
frazzled froggies from his jaws before he has a chance to finish
them off, and lines them back up on the railing again for round two
In September I had a swallow study done and it showed I could drink
safely from a bottle and eat baby food. It wasn’t long before I
figured out I didn’t like drinking from a bottle so mommy tried a
“sippy” cup. I liked that much better, it makes me feel like a big
boy. I’m eating several solid meals a day now and drip feed through
the feeding tube at night. Mommy runs carrots and spinach and
broccoli through a juicer and mixes the juice with cereal, and then
adds some “concoction” under the disguise of “vitamins” and
“nutrients”. She says it’s good for me, puts hair on my chest….I
would rather have hair on my forehead! then at night she gives me my
dose of garlic, she says a clove a day keeps the doctor away……and
everyone else! The funny thing is, when mommy puts Sophia in the
highchair, the dogs gather around and can’t wait to eat what falls
to the floor. When mommy puts me in the highchair, the dogs flee…Is
there something they know that I should know?
When I started eating solid food I quit pooping as much and mommy
and daddy starts to worry. So we make another trip to the health
food store and mommy buys more “nutrients” to mix up another
“concoction” and sticks it in my feeding tube to make me poop! Then
she checks my diaper all day long asking if I pooped yet! I don’t
understand what the big deal is! If I haven’t pooped she starts
shoving more “nutrients” down my feeding tube. In this case, I’m
glad I can bypass the taste buds! Then at night when mommy and daddy
are praying, they actually ask God to give me a poopy diaper! Don’t
I have any say in this? And when I finally poop, they are so excited
they start praising God. After observing and analyzing their bizarre
behavior, I have come to the conclusion that, it doesn’t take much
to please mommy and daddy and there’s nothing like asking God for
the little things in life!
In September I went on my first hunting trip and camped in the
mountains. Like daddy, I was all decked out in my Cabella’s camo,
but the only thing we got was snowed on.
In October mommy made me a Hershey’s kiss costume. I thought I
looked pretty ridiculous but not as ridiculous as I looked when
mommy and sissy carved out a pumpkin and cut two holes in the bottom
of it for my feet and then stuffed me in it. They laughed at me
while they took pictures, but I didn’t see the humor in it. I also
went with my “Pride and Joy” play group to the pumpkin patch. We
took a ride in the hay wagon and picnicked by the pond.
In November Daddy finally talked mommy into giving me my fist hair
cut. They couldn’t just cut my hair. Instead, daddy gets out the
camera and mommy gets a hair pick and picks my hair so it stand up
about three inches off my head. I looked like one of those guys from
the “Mod Squad!” They thought I looked pretty funny…..They’re so
In December I watched mommy and daddy put up the Christmas tree.
When they turned on the lights it was so pretty, I couldn’t stop
looking at it. It glistened and sparkled like nothing I’ve ever
seen. Then daddy held me up and helped me put the angel on the top
of the tree. Mommy told me that if I was a good boy Santa would
bring me a present. So, I started thinking,…….. how easy it was to
please mommy and daddy. The way I figured, a few poopy diapers and I
would have it made with Santa!
I had a Christmas party to go to at “Pride & Joy” so mommy invited
Sophia to go with us. We played on fun stuff, ate some Christmas
goodies, shook some noisy things to some Christmas music and then
Santa came out and we got to sit on his lap. Well, I did and got a
Whinny the Pooh ball but Sophia wanted NOTHING to do with him!
Mommy and I made a list for Santa and hung it on the front door. A
week later I got a surprise letter from Santa Clause that had been
mailed from the North Pole. He said he had been checking his list
and saw that I had been a good boy and he would see me Christmas
Eve. Sure enough, Santa stopped by Christmas Eve and I got to sit on
I had my big acting début in December. I played in the Christmas
play at church. It wasn’t a very big part but it was the most
important part. I thought it was cool because by the worlds
standards, I’m so imperfect and flawed. But I played Baby Jesus, who
was perfection for the world. When asked if I had a future? You bet…
I have the greatest future of all, Eternity in heaven with Jesus.
In January I started getting my first tooth. Because my bottom ones
had already been pulled, my first tooth was my top eye tooth and boy
did they hurt. I was really grumpy and gave mommy the “boo-boo” lip.
So mommy gives me some drops of “happy water”. Something she
“brewed” up herself. I don’t know what she put in it but it works.
When ever I’m grumpy, she gives me a few drops and soon I’m happy!
Amy said she should market it.
We also got lots of snow in January and I got to take sled rides
“over the hills and through the woods” to grandma and grandpas and
to Auntie Kris and Uncle Ken’s houses. Sophia would come over too.
She liked to feed me snow balls and watch me lick them. (mommy made
sure it was white snow) Then we would go in the house and drink hot
chocolate. Well…., Sophia got hot chocolate, I got something “green
One day we all went to grandma and grandpas to slide down their
driveway like mommy and Auntie Kris used to do when they were kids.
I even got to slide down the hill in my little toddler sled all by
my self and mommy would catch me on the short run. Sophia and my
friend Brook got to go all the way down the hill but mommy said I
have to be bigger to do that.
I am learning to play “peak-a-boo”. I make a fist with my hands and
hold them up to my eyes like binoculars and take them down when
mommy says “peek-a-boo”. I’m sometimes slow and don’t always get it
right but I’m working on it. Sometimes I even clap my hands when
mommy says to. I still don’t roll all the way over yet but I will
sometimes roll from side to side and I can hold my head up pretty
good. When I’m eating and see the spoon or the “sippy” cup coming, I
take my fingers out of my mouth and open my mouth to eat or drink.
When I’m real happy, I stick my tongue in and out of my mouth. The
happier I am, the faster it goes! And like most trisomy 13 kids, I
lick everything that is within tongue distance of me. It’s my
“gateway to the world“.
I don’t say any words but I do make my own sounds. For awhile I was
blowing raspberries but now I make a sound that mommy says sounds
like Donald Duck. Daddy says I sound so much like a duck that next
time he goes hunting, I can go with him and sit in the blind and
call the ducks in for him.
Sometimes my daddy takes me with him when he hauls hay or does
service calls. He must be pretty proud of me because he is always
telling people about me. Daddy says I’m his favorite passenger
because I don’t bark at the cars passing by or leave nose prints on
the windows like Mattie and Alley (the dogs).
My favorite things to do are play with my kick board and “spin a
letter” wheel, I’ve gotten pretty good at manipulating my toys to
make them make sounds. Cause and effect is one of the biggest things
I’ve learned this year. I also like to watch the “Little Bear “
movie while swinging in my swing, go for a bike ride with mommy and
daddy, and “tool” a round the yard in my car seat strapped to
daddy’s quad when we have fire wood to cut, horse pens to clean or
leaves to rake and burn. I love jumping in my “jumperoo” seat. I can
bounce it enough so my feet come off the ground and make it play
music. It’s making my legs stronger all the time, and helps me learn
to balance and hold my head up.
Today March 6, 2008, I am one years old! I am now considered a “long
term” survivor!. We are having a birthday party with family and
friends. Daddy is barbequing hot dogs. I get to stick my fingers in
chocolate cake and eat ice cream.
I don’t know what God has in store for me for the second year of my
life, I just know that each day I live I am a miracle, and as with
each one of us, only God knows the hour in which we will see him
face to face. But for today I am thankful to be here and for my life
and I know I am wonderfully made!
"Sons are a heritage from the Lord, children a reward from Him"
Wow, I can’t believe a year has past! I am now two years old. This year has
been full of new adventures. But it did not start off so great. I had my
first and only real illness. I first came down with a fever, which Mommy
thought I was just teething. But as it kept going up (103) she decided to
take me to the doctors. My doctor thought I had a virus that was going
around and that I should be feeling better in a day or two. But by day two,
my temperature was up to 105. So back to the doctors mommy took me. A few
test later; the doctor said I had a urinary tract infection. After an
antibiotic shot, which I did not like one bit, and instructions on how much
fluid I should be taking in daily, we went home.
Within 24 hours I was feeling great…for about two days. Then I had a fever
again. Still on the antibiotic for the UTI, Mommy knew this shouldn’t be so
she took me back to the doctors. My UTI had cleared up so they sent me over
to the hospital for chest ex rays. To everyone’s surprise, since I had not
had any cough or any other symptoms, I had pneumonia. Another shot, “ouch!”
Breathing treatments, more antibiotics, and I’m good. So now added to my
daily regiment of seizure medication three times a day is breathing
treatments and extra fluids, via the G tube, to prevent these from
Daddy started a new job this year and with that came some traveling. This
summer Mommy and I went with him and stayed in a KOA with a pool. This was
great news since Mommy had just found out it was O.K. To take me swimming
with a G tube. And they found out what a real water baby I was. I absolutely
LOVED it! Look out Mark Spitz, next year I’m going for the gold!
Mommy would put on my life vest and pull me around the pool….ALL DAY LONG…
while I made my motorboat noises (blowing raspberries) until we were
shriveled up like little prunes. When Daddy got back from work, she would
pass me off to him. Daddy liked to bounce me up and down in the water and I
would laugh. I could not get enough of the water. When we were finally water
logged, Mommy would put me in the bike trailer and we would go for a ride
around the campground. Mommy and Daddy decided that wherever we went this
summer it needed to have water. So over the course of the summer, I swam in
lakes, pools and rivers. Well, the river was just a little too cold so I
floated around on the raft with my mommy.
I’m still nonverbal; in fact, I do not make any audible noises except when I
laugh or on the rare occasion that I cry, and even that is not very loud.
The funniest things will make me laugh. Like when mommy runs the juicer or
blender, when the dog barks, or when something falls on the floor. Just
about anytime there is pandemonium and chaos I just crack up.
My main source of communication is sucking in and out real fast on my bottom
lip. This is a happy sound I make when Mommy is giving me a “belly drink”,
or when I raise my right hand into my field of vision, which is about 4” in
front of my face, and discovered I could move it all by my self. This will
keep me very entertained for some time. This sound is also the nice way I
let mommy know that I am hungry and it’s time to feed me.
I have also learned the fine art of blowing raspberries. This is also a
happy noise and since I’m typically happy all the time, I’m usually blowing
raspberries. Being that at times I’m still nocturnal, you can hear me making
raspberry noises at three in the morning while playing in my crib, in the
back of the church on a Sunday morning, or pushing me through the store in a
shopping cart. And when those embarrassing noises escape me and everyone
looks at me? I just play innocent and blow raspberries!
Now blowing raspberries is normally not a problem…. until feeding time.
Mommy doesn’t dare talk to me while she feeds me because it stimulates my
communicative responses. And you guessed it, I start blowing raspberries! I
have turned it into a game of sorts. Now it takes some skill and a good deal
of “lip-eye” coordination, but the object is to wait until Mommy gets the
spoonful of food right to the edge of my mouth, then I blow the biggest
raspberry I can muster up! Mommy doesn’t really like this game because she
always has to play defense and threatens to come to the table with a face
shield. Kind of a poor sport don’t you think?
Mommy’s decided she needed to expand my culinary horizon from “finger
foods”, (my fingers) to table foods. Along with my daily juicing of carrots
and spinach, I am enjoying such things as venison stew, bear ham, home
cooked sweet potatoes and yams and avocado puréed to my liking. Now avocados
are an interesting food, I like to take the green stuff and rub it all over
my face. Mommy says people pay good money for avocado facials. But since I
already have a nice complexion, I need the calories more and I really should
try and keep the avocado in my mouth.
This year I weighed in at 22 lbs. That’s more than doubled my first birthday
weight of 10 lbs. 8oz. Mommy feels it in her pocket book when she goes to by
diapers, and feels it in her back when she carries me up the stairs. Daddy
says if I keep growing like this, he’s going to build me an elevator.
I spend my days playing with my toys in my new play area my daddy built for
me. or bouncing in my jumping seat. My beloved Wolfy Pup is usually at my
side. Now and then he comes over and gives me a big wet kiss across my face.
I think it’s funny and I laugh but Mommy doesn’t like Wolfy doing that. She
says she sees what he eats in the horse pen and she chases him away.
Daddy took me fishing this year. Although it was a good time basking in the
fresh air, it was not a successful fishing day. But that’s O.K., I just like
to spend time with my daddy, like in the evenings when we sit down and watch
‘The Backyardigans’. We get out my Viking helmet when we watch the Viking
Voyage episode, and our cowboy hats when we watch the adventures of cowboy
Tyrone. Daddy says were secure enough in our manhood, we can do these
Mommy says I’m a good shopper. I can be gone all day with her in and out of
stores and I never complain. I just go with the flow. People are always
commenting on how good I am in the store. I don’t ever ask for anything, I
don’t cry and throw tantrums, and I don’t run around pulling things off the
shelf. With out going into detail, Mommy just smiles and says I’m the most
well behave baby she’s ever had. One time this woman came up to my mommy and
asked if I was her child. When Mommy said yes, the woman said I looked just
like her. Now I’m thinking ‘woman, are you colored blind?’ but mommy just
smiled and said I was adopted. The woman, after fumbling for words, said,
“well, some children do look like their adopted parents”. ‘Good comeback’ I
thought. Mommy graciously accepted the compliment and we went on.
This past summer Mommy and Daddy took me to the county fair where we watched
the rodeo, went on my first carnival ride, and ate ice cream. It was hot but
we had lots of fun. We also went to the beach. The shifting sand between my
toes and the crashing sound of the waves made me laugh. I actually liked the
beach until the cold water crept up around my bottom and then I let my mommy
know, in no uncertain terms, that I was not having fun anymore and I was
My big sissy got married this summer and moved far away. Sometimes she talks
to me on the phone and I smile and blow her raspberries. I miss her but I
gained a brother in law who just adores me. Now that my sissy is gone, I
have a new respite care worker named RuthAnn. Mommy met her about 30 yrs ago
when she was the nurse in a doctors office that Mommy used to go to. I can
see why they have been good friends every since. RuthAnn is fun to be with
and gives me lots of lovin’.
In the fall we made our annual trek up into the mountains to our favorite
hunting spot which Mommy and Daddy have affectionately named “Camp Joey”.
Mommy and Daddy each bagged a buck this year and while I was glad I got to
pose with them in their pictures, I was just as glad I didn’t have to do the
dirty work that followed.
With fall comes the harvest, and with the harvest I start getting nervous.
Mommy’s creative juices start flowing and I never know what kind of costume
she is going to come up with. This year, after my niece, Sophia, my friend,
Brook and I carved out our pumpkins, Mommy dressed me up as a California
raisin and took me to the local daycare harvest festival where I won first
place for my costume.
By December the weather finally started getting cold. Sophia and her mommy
and daddy had moved away. Christmas was approaching so Daddy hooked up the
quad trailer and mommy strapped me in my quad seat and stuck a pair of
antlers on my head and we set out with Aunti Kris and Uncle Ken to find a
Christmas tree to Cut. I thought this was going to be a fairly easy task
since we live on the edge of the El Dorado National Forrest that just
happens to have a Christmas tree farm not to far from our house. I’ve come
to realize that picking out a Christmas tree is harder than it looks. The
trick is getting everyone to agree on one tree! They’re either too small,
too big, not enough branches, too many branches, too many branches on one
side and not enough branches on the other. There were more reasons than even
Goldie Locks could think of and all I wanted to do was get these silly
antlers off my head and go home before someone mistook me for something
they’d put in their freezer! We finally found the one that was just right.
Now the amazing thing about Christmas trees is they have a tendency to grow
another three feet from the time you cut them down to the time you try and
stand them up in your house and ours was no exception. But, buy the time we
got it decked out in all its trimmings, it looked like something you would
see in a Norman Rockwell picture with the magical lighting touch of a Thomas
Kinkade. As Mommy sat back to admire it, I could hear her wheels turning and
I started getting nervous again. I knew she was thinking. Then, out came the
tripod and the camera, and after wrapping a big box to look like a present
and stuffing me in it, she started clicking away. She said, next to Jesus, I
am the best Christmas present anyone could hope for!
As the snow started falling, once again, we took to the slopes. Brooke and
her mommy and daddy, my friend David from next door and his daddy, and Aunti
Kris and Uncle Ken along with Mommy and Daddy and I, made the trek across
the road to grandma and grandpa’s sloping driveway. I out grew my toddler
sled and since I was the fourth toddler inline to inherit it, it was pretty
wore out and just wanted to spin me into a doughnut, so Mommy put me on a
sled with her. It was so fun because I got to go fast and I would be
grinning all the way down. Sometimes we would crash and roll out in the
snow. I ate snow and laughed all day long. It was great! Then all the big
people got bored with that run so everyone headed next door to Brooke’s
house to a really steep hill. Mommy said it was too steep for me to go down
so I stayed at the top with Daddy bundled up in my sled while everyone else
FLEW down the hill. Mommy said once was enough for her and as they all
gathered at the bottom discussing the need to have a tow lift and
anticipating the hike back up the hill, they heard Daddy yell “Oh no, Joey!”
and saw my sled flying down the hill with a bundle in it. You should have
seen the looks on their faces as mommy leaped in front of my out of control
sled to stop it. I didn’t know an approaching fifty-year-old woman could
move so fast! Daddy and I thought it was pretty funny as we watched from the
top of the hill. I still bundled up safe and warm. As for mommy? Well, she
just didn’t see the humor in it!
We continued to get more snow through out January and Mommy took me for a
few sled rides over to visit grandma and grandpa. But for the most part it
was too cold for outside. We mostly stayed by the woodstove and I would play
in my jumping seat or my new activity chair. I also got a stander that mommy
puts me in to help me learn to bare weight on my legs. I actually like this
and tolerate it for long periods at a time.
I finally got my new glasses. I had no idea of the world around me until I
put them on. I tolerate them quite well now but it wasn’t always that way.
At first I didn’t like them because the ear pieces would get tangled in my
curls when Mommy tried to put them on. If I had them on while laying down
playing, they would slide all over my head and when Mommy tried to take them
off, they would be even more tangled. Eventually they would make me sick.
Now Mommy only puts them on when I’m sitting up playing or watching a movie.
Everyone says I look very sophisticated and quite debonair in them.
In February I got invited to my first birthday party for my new friend
Lilly. She also has trisomy 13 and lives about an hour from me. Lilly is one
month older than me and boy is she a “looker!” Mommy says if she believed in
arranged marriages, Lilly would be the one for me! She likes to run her
fingers through my hair and hum to me and I like it when she does it.
My seizure activity started increasing in February. I went from having
Myclonic jerks to stiffening and shaking my arms for about 10 seconds once
or twice a day. I had to have a 24-hour EEG done so when Sissy was home
visiting, Mommy and her took me down to the hospital to get me hooked up.
The technician was set up and ready to start marking my head with a black
marking pen but when he saw me, thought better of it, and tossed the black
one aside and went for the florescent blue. After marking about 30 blue
spots on my head, he glued an assortment of colored wires to the spots with
something that smelled like model airplane glue. By the time he was done my
head looked like an elevator control panel and if that wasn’t bad enough, he
took some gauze and wrapped my head like a mummy and left a 3 foot pony tail
of wires coming off the top of my head and then said “your good to go”.
‘Good to go?’ I thought. ‘You mean I actually have to go out in public like
this?’ I just wanted to get in the truck and go home so nobody would see me.
Just as I was strapped in my car seat and home was on the horizon, Sissy and
Mommy started talking about how hungry they were. I’m thinking, ‘No, Mommy
no, don’t stop’. But sure enough, they pulled into a Fresh Choice and
wheeled me in in my stroller. If this had been Halloween, I would of been
pretty proud of this getup, but February? What were they thinking!
The next day we returned to the hospital to disconnect the wires on my head.
This was not an easy task as the glue worked real well at sticking to the
fibers of my hair. I winced a few times and let out a whimper as the
technician rubbed stinky stuff on my hair to try and dissolve the glue so he
could pull the wires off, all the while assuring my mommy that the remainder
of the glue would just dissolve and wash out. Well, when the glue mixed with
the florescent blue marker, it turned the glue an iridescent blue that stuck
to the tips of my tight curls…… for two weeks! It was a hair style any
teenager would have been proud of.
Aside from my good nature, I do have one teensy, weensy, rebellious streak.
I don’t like my teeth brushed, and I don’t like my nose suctioned. At this,
I purse my lips and fling my head back and forth real fast hoping Mommy
won’t catch up to which ever orifice she is trying to tend to. Mommy even
tried to disguise the “booger sucker”, which comes in the form of a big
green bulb syringe that you get from the hospital, by drawing a smiley face
on it, complete with a bow tie at the neck of the bulb. So when she deflated
the bulb for a good suction, the smiley face turned into a silly face,
hoping to get my attention. Her little plan might of worked, had the bulb
not blown a seem. She tried wrapping the “booger sucker” in white medical
tape, which made the smiley face bulb look like I did a month ago minus the
wires. When tape didn’t work, to my relief, she tossed it in the garbage. I
thought I was safe. But then she set out to find a new one. She went to
every department, drug and medical supply store she could think of but
couldn’t find the big green bulb syringe. She tried the little blue ones,
the white ones, but none of them quite suctioned liked the smiley-faced
green one. She tried all my doctors’ offices to no avail. The only place you
could get one is at the hospital. Now I’m thinking, ‘It must not be God‘s
will, (or mine) for Mommy to have one of these “booger suckers” and she
ought to just give it up!’ But she didn’t. In fact she called everyone she
knew who was about to have a baby and asked if they could get her a new big
green syringe, hoping that at least one person, in the throws of labor,
might remember the “booger sucker”. Then this strange phenomenon happened,
“booger suckers” came abounding from every direction! Every one of those
friends Mommy called remembered the big green syringe. One friend was so
kind, she got Mommy two! We had “booger suckers” lurking in every corner of
the house! As soon as Mommy hears the slightest irregularity in the airflow
of my nasal passages, she heads for the booger sucker! Mommy thinks this is
the greatest thing since sliced bread. All I know is I have the cleanest
nose in town!
Well there is no place like home. Every night while Mommy and Daddy sit and
talk before bed, I curl up in my mommy’s arms and she rocks me to sleep. I
never demand that she does this but I sure enjoy every minute of it when she
does. Then Daddy kisses me good night and Mommy puts me in my bed. She lays
her hands on me and prays for me. She even prays for my other mommy and
daddy. Then she kisses me good night. Daddy always comes in first thing in
the morning and says goodbye before he goes to work.
Here it is, my second birthday. Among the group of aunts, uncles, great
aunts and uncles, grand parents and siblings, were my friends Brook, David
and my special friend Lilly. God has been so good to me this past year and
has blessed me with good health and friends and family that love me very
much. My needs are met, I’m well cared for and I’m happy. What more “quality
of life” could you ask for!
AKA : JO JO BEAN\
THE CHRONICLES OF JOEY
“HAPPY BIRTHDAY TO ME, TODAY I TURNED THREE”
“I’M A LONG TERM SURVIVOR, OF TRISOMY THIRTEEN”
Here it is, another new year of
adventures. And once again, I kicked off my year with bronchitis. But you
can’t keep this cowboy down. I just had to pull on my boots and buckle my
spurs and get tough because I had a rodeo to go to in April. Yep, that’s
right, I joined the rodeo circuit and had my first ‘Special Kids Rodeo’ at
the Auburn Stampede. I drew up on big wooden bronc and an over sized stuffed
bull and after making, my 8 second ride, I did my barrel run. That’s kind of
a ‘girlie’ sport, but somebody had to do it. The only problem was, my
wheelchair kept bottoming out in the freshly plowed footing of the arena so
we didn’t make a very good time. But the cowgirls and rodeo queens loved me
and we had a great day complete with a free meal, special t -shirt and
bandanna. And of course, Mom and Dad liked it ‘cause they got free tickets
to the Pro Rodeo.
In May, I got referred to Shriner’s Hospital to
have the curvature in my spine checked and x-rays of my hips because they
are not very supple. After looking at the x-rays, the doctor told Mom that I
had osteonecrosis, which means the blood supply to my right hip had
diminished and the hip bone would eventually die which would then cause me a
lot of pain. Mom asked the doctor if the blood supply could ever replenish
its self to the bone and get better. The doctor said it would be very rare
in a ‘normal’ child but in a child like me, it just would not happen and
there is nothing you can do for it in a child except pain management. They
would recheck it in six months. Then the doctor had my feet and legs casted
for some braces that will keep my feet and ankles aliened right with my legs
which will be better for weight bearing. After that appointment, Mom had me
put on the prayer chain at church for healing in my right hip.
The beginning of the summer I got sick with a virus but once again I had to
“cowboy up” cause Mom signed me up for a rodeo in Reno. This was a big one.
Ten days of professional rodeo with three days of special kids rodeo. Mom
didn’t realize when she signed me up it was fathers day but it was a good
way to spend the day with my dad, and Mom too. So on the road we went
pulling the trailer so we could camp there. When we got to the rodeo and
checked in, they gave us a BIG bag of all kinds of goodies, a bag lunch,
t-shirt and of course those free tickets to the professional rodeo. We first
did our grand entry where we all (thirty of us) paraded in with the American
flag. The professional cowboys and cowgirls sang the national anthem to us.
I had a very proud mommy standing in the bleachers as daddy and I stood
proudly at attention with our hats off to our American flag. Then it was
time to ride. Once again I was helped down on my bull and bronc by the
professionals who know how to do it right. I had a good ride and a lot of
fun. I did mutton busting (adapted) for the first time too, and that was
interesting but the best part of these rodeos are the rodeo queens. There
were queens there from all over the country and they would not put me down,
they actually fought over me but of course, I didn’t mind, I was lovin’
every minute of it! After wards, I got glamor pictures of them with their
autographs and sweet messages to me that are now covering my bedroom walls.
When we were all done with our rides, we each received a nice Justin silver
buckle from the ‘Reno Special Kids Rodeo’. It was a great event and I can’t
wait to do it again next year.
This summer Mom and Dad decided it
was time to get me my own pony. Some friends would come over from church and
help give me therapy by putting me in different positions on my pony’s back
while they walked me around. They call this Hippo therapy but I never
understood why since you use a horse and not a hippo! Mom and Dad want to
get a special saddle made for me so I can also ride in the upright position
When it got too hot this summer, Dad was really wanting a
pool and you know how much I love water. So, I’m thinking this is a really
good idea. Now, most people go down to your local Wal-Mart and get one of
those big blue pools……..not my Dad. He’s calling around to feed stores for
prices. I wasn’t quit sure we were on the same page. I’m thinking, ‘floating
on a raft, basking in the sun, my sun glasses on, my straw cup with an ice
cold drink in one hand’ You know, a nice relaxing way to spend a hot summer
day. Then came the really good news. Somebody named ‘Craig List’ had one for
a really good price. So, Mom and I went to pick it up. Not only did ‘Craig
List’ turn out to be a girl, but the pool was not quite what I had in mind.
It looked like one of those big galvanized water troughs you would find in
the ‘cow patty’ pasture! Doesn’t Craig know pools are supposed to be blue
and come from Wal-Mart? Well, we loaded it up and drove home. We looked like
a couple of Oakies with it hanging off the back of the truck and I was
praying Mom’s trucker knots were tight enough it wouldn’t go rolling off the
side of the canyon. You should of seen the glee in Dad’s eye when we pulled
into the driveway. He couldn’t wait to set it up. Of course, there wasn’t
much to setting it up. Just a flat spot and some water. Maybe if ‘Craig
List’ had sold us one of those blue pools from Wal-Mart it would of come
with directions that told daddy to put it in the sun. But instead, he put it
in the shade where it was too cold for Mom and me to get in it! Dad called
it refreshing, says it’s his ‘red neck’ swimming pool. And when he plopped
down in it he looked like someone you would see on an ice tea commercial.
‘Hmmm…..I think I’ll wait for the Wal-Mart pool.’
When it got too
cold to go out side and ride, Dad made me a platform swing and hung it from
a beam in our living room where I can get some vestibular stimulation
through the winter months. Ten minutes on a platform swing for me is like
winding up a wind up toy and letting it go. When we stop, I just want to
keep moving all over the place! When Mom can’t work with me on the platform
swing, she puts me in my toddler swing that Dad hung from another beam where
she can walk by and give me a push and then do what ever she needs to do.
With the help of Missouri, some good doctors and a lot of prayer
and hard work on Mom’s part. I was able to get synagis injections to prevent
a respiratory virus that can be fatal to medically fragile kids. I don’t
like getting the 2-3 shots every month in my legs that lack much meat and
muscle but Mom felt better with me having it along with various flew shots
and the N1H1 Vaccine, knowing I was well protected against the winter months
of illnesses that put so many kids like me in the hospital.
November we made a trip down to southern California. While we were there, we
visited a family that has a ..trisomy 13 girl named Natalia, she is nine
years old and walking and doing great.
After we got home, it was time
for my appointment at Shriners to have my hip re x-rayed. Now Mom had been
praying for me every night as she always does, laying her hands on my hip
and asking God to bring back the blood supply and heal me. One night while
praying, Mom really felt God had healed me. She could no longer asked God to
heal me, but could only thank Him for the healing he had done. When the
doctor came in with the results, Mom already new. The Blood supply was
coming back and the hip was improving. However, The doctor that told her
that would never happen, didn’t think it was a big deal that it had! But Mom
knew were the credit lies and continues to praise God for the healing.
This year, I learned to drink from a straw which Mom really likes
because now she can pack those little juice boxes when we go some where. I
also will grab the spoon in my food bowl if Mom forgets and leaves it in
front of me. The only problem is, once I get it in my hands, I don’t know
what to do with it except fling food all over.
I have adjusted
pretty well to wearing my glasses and Mom says I actually reach out a little
farther for my toys and focus on my movies when I have them on.
only gained about 1½ lbs. Over this past year but added a few inches to my
height. What I didn’t gain in pounds, I made up for in nieces and nephews.
This year I gained two new nephews and one niece born New Years day, which
makes me an uncle X’s 4.
In January, I had my first grand mall
seizure while we were standing in line at the pharmacy picking up
antibiotic. Mom was ready to tell someone to call 911 when I took a breath
and my color started to come back. I ended up having a urinary track
infection. The doctor thinks between that and the fever, that’s why I had
the seizure. But I did have another one about a month later and Dad did call
the fire dept. My doctor increased my medication and gave my mom a
medication to give me when I’m having a big seizure like that.
Well, I made it through the year without Mom dressing me up in some silly
costume, or so I thought…..Then I got an invitation to my special friend
Lilly’s (trisomy 13) birthday party. She was having a disco dance for her 3rd
birthday. I didn’t know what disco meant, but I couldn’t wait to dance with
my girl. Mom and I went shopping for the special occasion. I should of known
something was up when we went shopping at the thrift stores. My first clue
was when she pulled a pair of girls white bell bottoms off the shelf and
held them up to me and said, “perfect!” Then we went to the woman’s
department and found a shiny, colorful paisley shirt and some silver,
shimmery material. By the gleam in her eye I could tell she was really
getting into this. Next, we went to the shoe department were she picked out
a nice pair of black, boys, dress shoes and said, “these will do!”
‘Something normal’ I thought. But apparently, they weren’t quite good enough
for my mom because when we got home, she took out a can of metallic gold
spray paint and painted them! Then she went to work cutting, pinning and
sewing until the woman’s paisley shirt was now a toddler size three and the
silvery material became a vest. I was starting to get the idea of the
meaning of disco and could understand why my dad always said he tried to
forget those years.
Just before my third birthday this year, I
started putting up a fight when Mom tried to give me a drink from a straw.
She couldn’t figure out why I suddenly didn’t like it. She likened it to
trying to ‘bit’ a horse with a bad tooth and decided it was time to make me
a dentist appointment. But not without looking in my mouth first. After
finding a creative way to get me to open my mouth, she found what used to be
a yellow spot on my front tooth, was now decay.
My time with
‘Pride and Joy’ (early intervention) is coming to an end. Now that I’m
turning three, I will be going to school were I will be getting all my
therapy and have some social interaction. This will be a big adjustment for
my mom since she has never had to load one of her children on a school bus
before because she home schooled all my siblings. The closes School is an
hour away, another big adjustment. This is were I need to tell mommy to
‘cowboy-up’ it’s going to be O.K!
My sissy and favorite (only)
brother in law came out from Maryland with my new niece for my birthday. We
had lots of friends and family here to celebrate with a pot luck and bon
fire. For my birthday I got a pool from Wal-Mart so this summer you will
find me basking in the summer sun on my raft!
We are the new and proud parents of Joey Lane Huddleston Reite. Joey came to
us "Via" the internet. It's amazing what you can find online these days!
Joey hails from St. Louis, Missouri. He was born March 6, 2007 at St. Johns
Mercy Medical Center. His original adoption was all in place at the time of
his birth and when Joey was born with trisomy 13, the adoptive family backed
out. His birth family, feeling even stronger about not being able to care
for him, put him back up for adoption.
The attorney who was handling the adoption contacted the "Living with
Trisomy 13" organization and sent a letter over their website. Because of
our son Tucker, (full trisomy 13, April
5, 2001-May 3, 2003) we are still involved with the trisomy 13 support
groups and read this letter from the attorney stating she was was looking
for a family to adopt this baby whom she and the nurses called Joey.
After Tucker died, Jim and I talked about adopting a baby. But I didn't want
just any baby, I wanted another trisomy 13 baby. We have four other healthy,
Normal (which is all a matter of perspective) children but I missed the
uniqueness that only comes from these special children. But what were the
chances of finding a baby like this when the syndrome is so rare to begin
with. And out of those how many are miscarried or aborted. The percentage of
those that actually make it to term and then survive long enough to be put
up for adoption, and that's providing the birth family did not want them,
was so small that I always said "If God wants me to have another trisomy 13
baby, He'll have to drop one in my lap!" Well That's exactly what he did!
Jim and I read the letter and felt God laying it on our hearts to call this
attorney and inquire about Joey. I asked questions that only a mother of a
trisomy 13 child would ask and gave her Tucker's website (www.cowboytucker.com).
She had contacted several other families that were set up for adoption but
they backed out. A few other families did inquire but it was Tucker's
website and the questions I'd asked that kept drawing her back to us so she
asked if we were set up for adopting. Our fleeing thought for adoption had
long since past and we were looking at the empty nest since our last one at
home was about to turn 18 in a couple months. So no, we had never started
the process. We felt so sure that God was prompting us that we started the
adoption process. This was about March 22nd.
We had no clue where to really start so we talked to a friend from
church who ran a Christian foster care organization in our local area called Koinonia Foster Homes. He put us in touch with Rob who was starting to do
fost-adopts for Koinonia. We met With Rob in his office and talked about
what we were trying to do. The problem was, Koinonia only did instate
adoptions so they could only get us started on our home study which we were
told takes about six months to complete. But he was willing to do what he
could to help us out.
So before we left we all prayed together asking the Lord for direction if
this be his will. Rob got in touch with Cindy S., The "whirlwind" of an
attorney back in St. Louis who was waiting to hear back from us on our
progress. Although she actually represented the birth family, she offered to
do all our paper work on that end "pro-bono" (free). And she was helping
walk Rob through the interstate compact red tape which could take a year or
two to complete. All of us who have Trisomy children know that time is of
the essence and we may not have months or years. Well God knows that too and
He is obviously bigger than the state of California or Missouri because with
in two weeks our home study was completed, (paid for by the state of
Missouri) the home inspection waved and by the end of April all the paper
work in Missouri was completed and they were ready for us to come pick up
Joey. We had not been planning a trip to St Louis on such a short notices so
we had no money set aside to make the trip or cover our income while we were
gone which added up to roughly $4,000. With the help of our immediate
families, church families and friends and donations that came in from our
small community, God provided all we needed.
now Joey had been in foster care for two weeks through a foster care
organization called Family Christian Services that was ran by Sue. On May
5th we left our little mountain town in northern California and drove to St.
Louis to meet with Cindy, her friend Kelly, who was the attorney to
represent us, who also agreed to work for free, and Sue, on May 9th. The
plan was to file for adoption placement and then return to California with
Joey to finish up the adoption through the interstate compact how ever long
that took. But there was confusion over which state was going to be
responsible for him medically in the interim. So when we met with these
attorneys they asked if we could stay a few more days in St Louis and they
were going to get us in to see the Judge even though we were not on the
judges docket, and push this adoption through to completion in a few days so
we would not have to deal with the whole interstate compact red tape.
We set up camp at Jellystone Park in St. Louis and prepared to stay the
week. Joey was in a wonderful Christian home and very loved and cared for.
After a few visits, we were comfortable enough with the feeding pump to take
him to his new home away from home..."the camper". Joey became very popular
at Jellystone Park and soon almost everyone new him. He would have visitors
daily. One couple we met there and had dinner with on a Saturday evening was
Matt and Cindy K. On Sunday we had visited a Pastor Friend of ours church in
Troy and when we had come back to camp, Matt and Cindy K. had already packed
up and left. Monday morning we packed up and left to stay the night in Troy.
On Monday we got the phone call to be in court at 8:00 Tuesday morning,
still not on the judges docket. We rushed into the parking lot, still
running on Georgetown time, stressing because we were late do to traffic and
fearing that if we missed our appointment it could be weeks before we could
get in again. But all of our stress melted away when we were met by Kelly
caring a large bag. In it was a lot of goodies and snacks for the road, some
stuffed animals and toys for Joey and a card with a prepaid credit card for
$250.00 for on the way home from Matt and Cindy K! Come to find out, when
Cindy K. left Jellystone park and went home, she was telling her best friend
how they met us and telling her all about Joey and how she wished she had a
way to get a hold of us. As her friend listened, she realized that the
people Cindy K. was talking about was her attorney sister, Kelly, clients!
So Cindy K. and her friend put together this care package to give to Kelly
to give to us! coincidence? I don't think so, Divine intervention? you bet!
Because we had stayed longer than anticipated in St. Louis, our funds were
running low. We never told anybody that, but God new what we were going to
need to get home.
Kelly, Cindy S., Sue , Jim and I entered into the court house where we were
greeted by a "grumpy" bailiff who informed us that the judge was doing
physical custody hearings all day and we had a long wait if we got in at all
today. Just then a court trustee walked by and heard the conversation. Cindy
S. and the trustee did a few hand signals and the trustee went into the
judges chambers and a few minutes later the furled browed Bailiff came out
and said the judge would see us now.
After about 15 minutes in the courtroom, The judge pronounced us as the new
parents of Joey as if we had given birth to him and told us we were the
sunshine in his day but actually he put the sunshine in our day.
headed home traveling route 66 camping along the way. On May 21st we brought
our new baby into our home.
Joey in now almost 5 months old and so far is doing well. He is g tube feed
do to some obstructions in his airway. He was supposed to have a swallow
study done a couple weeks ago but it got rescheduled and we are waiting for
the new date. He was born with extra pinkies on both hand but they got
removed today as they were dangling. He has an umbilical hernia and an asd.
but he is not on any oxygen at this time. He so far has had no apnea
(something that gave us A LOT of grey hairs with Tucker) and he has some
myoclonic jerks. He has some vision impairment but I think he can see pretty
good as he focuses well on objects and reaches to nudge them with his hand.
He knows how to push the button and turn on his fish aquarium as and will
wake up at night and play it of and on through out the night. We think he
holds his head up pretty good too. My biggest concerns are keeping him
healthy through the winter and wondering whether to treat the myoclonic
jerks now or wait until they become seizures. With Tucker we chose to wait
and we never could get his seizures under control.
Do we start early with Joey? Any advice would be welcomed, email:
email@example.com or phone
There you have it....adoption in a nut shell!
Jim and Lori Reite firstname.lastname@example.org
Joey Reite full T-13
(Tucker full T-13, April 5, 2001-May 3, 2003)