I
was 13-years-old when Tucker was born. Often people asked me
how I felt about him "being different" or his
"uniqueness." How did I feel? I felt like
everything was going to be okay, like God made him that way
for a reason and knew what He was doing when He placed Tucker
in my family. God had an awesome plan! That precious little
boy could light up any room with his smiles, "Tucker
noises", and of course, his "Winnie-The-Pooh"
laugh. Sure, at first I wondered how our family would except
him. I questioned in my heart how I would except him. It took
me about 2 seconds after I laid eyes on him to realize that
it wouldn't even matter that he wasn't like "everyone
else." Below is a story I wrote throughout Tucker's
life. I hope you enjoy it...
For years my
mother has always said, "You never know, someday you may
have a little brother or sister like that", whenever I'd
make a comment about a special needs child. One Thursday in
April, 2001 changed the way I thought about people who have
special needs, children especially...
...At the
time my mother was seven and a half months pregnant. It was the
Monday evening before April 5th, 2001. We had Just sat down for
dinner. My mom had taken one bite off her plate , got a surprised
look on her face and quickly left the table telling us she'd be
back in a few minutes. Shortly after she left my step-dad, Jim,
followed her into their bedroom leaving my little brother to give
me a confused look. I equally returned it.
I could hear
Jim talking on the phone. After a few minutes they both returned
to the table, but not to finish eating. They told us that my
mother's water broke and that they had a call in to the doctor.
My little brother, Luke, and I hurried to finish eating so we
could get ready to leave for the hospital if that's what the
doctor thought best. We received a call back from the Doctor
about forty-five minutes later, not long after, we left.
We arrived
at Marshall Hospital in Placerville Ca. about 30 minutes later.
Shortly after we were shown to a room, my mom's doctor came. He
confirmed my mother's broken water, but said there would be no
baby that night. If my mom's contractions got stronger, they were
going to transfer her to another hospital, Sutter Memorial, in
Sacramento. Sutter is better equipped for babies under 35 week's
gestation. ( Babies less than 33 weeks gestation, run the risk of
incomplete lung development.) We had to leave my mom at Marshal
Hospital for the night, we didn't want to, but there was nowhere
for us to stay. She promised she'd call if there were any changes
or if she was being transferred to Sutter.
No sooner
had we got home and in bed, did the phone ring. Jim answered
within the first couple of rings. It was mom. She was being
transfered by ambulance down to Sutter Memorial. She wanted us to
meet her down there. By now it was 1:00 Am.
Jim got off
the phone with my mom and called his brother. Luke didn't want to
go to the hospital. We were going to drop him off a little ways
down the road at his uncle's house, halfway there he decided he
wanted to go after all.
We got to
the hospital and found mom's room. She told us that the nurses
had given her Magnesium to stop her contractions. The longer the
baby's birth was delayed, the better. We drove to and from the
hospital every day to see my mom. She was roomed with someone who
also was at Marshall hospital the same night she was and
transfered only a few hours before her!
Each day
brought my mother a new stuffed animal and some sort of balloons
or flowers. She found a place for each of them near her bed.
Wednesday we
went home with the same agreement that she would call if there
were any change. Going to bed early paid off. We were up again at
the sound of the phone at 2:00 A.m. Luke was at a friend's house
for the night helping them with goats that were supposed to be
kidding, so we didn't have to wake him up.
We got to
the hospital about 3:30 in the morning. They moved my mom from
the second story room down to the first floor. For about 2 hours
the nurses came in and out as the made their way through the
hallways. As it started to get closer to 6 o'clock, my mom opted
to have an epidural
On Thursday
April 5, 2001 at 7:07 A.m. my baby brother was born! Since he was
pr emature, the nurse had to take him right away. They had told
my mother a couple days before that this would happen and that
she shouldn't worry. It didn't mean anything was wrong. Jim
called Luke; we would pick him up later. Over the phone Luke
said, "Mom kidded instead of the goats!"
As I went
into the hall with my step-dad we saw the doctors working with my
new brother, Tucker Wesley Reite. Tucker was a grayish-blue color
when I first saw him after he was born. And still was in the
hall, 10 minutes later.
As the
doctors worked on Tucker, trying to stabilize him, we heard the
doctors talking. "There is something wrong with this
baby." "He has dismorphic hands and feet"
(Dismorphic, meaning: abnormal.) As I was watching in the crowded
hallway, I could see the doctors still trying to get Tucker
breathing. They continued to work with him for nearly 20 minutes
before they got him stable. During that time Jim was not allowed
to take any pictures of him while they worked. It distracted the
doctors. They took Tucker to the N.I.C.U. (Neonatal Intensive
Care Unit) A special Care Nursery where they gave him further
treatment. He was put on a ventilator and several other monitors
were hooked up to him. Only family could come to see him. The
doctors ran chromosome test on Tucker and said what they had
found was Very severe...
... What
they found was not good. After several more tests, they confirmed
him to have Trisomy 13. ( Also recognized as, Patau Syndrome.)
Many of you have heard of Downs Syndrome. That is Triso my 21.
Trisomy 13 is worse. It means he has 3 of the #13 chromosome. You
see, you get 23 chromosomes from each parent. They get pared up
making it so you have two of the #1 chromosome, two of the #2 and
#3 chromosomes, all the way up to #23. Tucker has three of the
#13. The lower the number, the more severe it gets. (Check the
Internet!) Children who are only partially afflicted are called:
Mosaic.
Many of the
characteristics for trisomy 13 are; Eye deformities including
blindness, often deaf, on oxygen, permanent feeding tubes
(because they can't manage sucking on a bottle or nursing.),
major heart abnormalities and brain defects ( Their brain doesn't
divide into two halves.), Severe retardation, rocker bottom feet,
constipation, Tightly clenched fist with fingers crossed over the
top, apnea episodes, and facial deformities including a cleft
pallet. They are also very susceptible to pneumonia and that
could be fatal. ( The common cold to us can cause pneumonia to
them.) Statistically, if they survive the womb, they die within
the first few weeks or months of life. (95% die before their
first birthday.) They are considered long-term survivors if the
live past a year old. There is only a handful that has survived
the first decade documented.
Tucker is a
full T- 13, ( Trisomy 13) but mildly afflicted. He has; Rocker
bottom feet, and a keyhole shaped pupil in his left eye. (Very
light sensitive. He wears sunglasses!) He was blind in his right
eye; He holds his hands with his thumbs in and his fingers
crossed on top. He was on oxygen for the first six months of his
life. He has a good heart and brain. Tucker was also brought home
on a feeding tube.
Every day
for one month we drove an hour away to spend the day with Tucker.
Having the parents there to talk and touch their premature babies
helps them to grow and become stabilized quicker.
One week
after Tucker was born, the day we found out he was a Trisomy 13
baby; the doctors took him off the ventilator. Later that same
night, he started having severe boughts of apnea. The doctors
called late that night to ask if we wanted them to "make him
comfortable", and let him die "in light of his
condition", or put him back on the ventilator and wait until
we came the next day. Jim told them to treat him as any other
preemie baby and we would be coming to see him first thing in the
morning. Tucker's health improved and he came home a month later
on the 1st of May 2001.
When we
first brought Tucker home, the doctors gave him no hope of living
more than a few weeks. He had apnea episodes his first couple
months home. ( When he would stop breathing.) He would turn gray
and stop breathing for 15 minutes at a time, only oxygen keeping
him alive. A few times we thought we lost him.
Tucker had
his first cold last winter (2002). He fought it off within a few
days after we took him off his goat milk. This showed that he has
a stronger immune system than most of these kids have.
Tucker
is doing well now. He likes to be drug around on a blanket,
thrown in the air, dance, and he also likes to swing between to
people while lying in a blanket. When you tickle his nose, he
laughs like Winnie-The-Pooh! He also enjoys smacking himself with
his toys!!! We've yet to figure this out!
Tucker
turned a year old on April 5th, 2002. He drinks from a bottle and
is also eating blended up table food! He holds his breath when he
is really upset, but nothing like it use to be. He is a little
behind on development as far as, sitting up or crawling,
(Although we think he may crawl in the future!) but he's a
miracle just the same. He outgrew his stroller so now he's got a
wheelchair. ( With his name embroidered and everything.) We enjoy
every minute with him and I have to admit, he is Spoiled Rotten!
In the
beginning of September, (2002) he started having his first
seizures. I say his "first", because it is fairly
normal for children with a Trisomy disorder to have seizures. He
was rushed to the hospital, by ambulance, code 3. The helicopter,
at the time, was already on call. He would have had to wait
approximately 20 minutes before they would have been able to
reach him. They decided to transport by ambulance instead. He has
been put on medication and that has helped pretty good so far.
We'll have to wait and see what happens with that down the road.
Tucker was
flown to UC Davis Medical Center on Wednesday, January 29, 2003.
He had been asleep shortly after drinking a bottle. My mom walked
into his bedroom to check on him and found that he had thrown up
all over himself and wasn't breathing. She had checked on him
just a few minutes before and he had been fine then. She said
that he was very limp and gray, she seriously thought that he was
gone. There is a phone in his room so she grabbed him out of the
crib and called 911 immediately. As she was on the phone she gave
him a couple rescue breaths, he gasped for air but only a little.
My brother
Bobby called me while I was at work. I immediately knew something
was wrong when the first thing out of his mouth was, "Hi,
how are you doing? "He never asks me that over the phone! I
responded with, " Well Bubba, (Bubba is what I call him.)
you either really want to borrow something or something is
wrong." He kind of laughed and asked me why I though that.
Then he asked if I had talked to mom in the last few minutes.
" Okay Bubba, what happened with Tucker?!" He then got
the idea that gee, maybe I really didn't know what was going on!
He explained what had happened with Tucker shortly after he had
left form visiting at our house. He told me I wasn't allowed to
freak out like I normally would and that he would come pick me up
and take me home so I could go to the hospital with my parents
and see him.
At the
hospital the doctors ran some reflex tests to see if the things
that Tucker ate were coming back up, allowing him to aspirate it.
The reflex tests all came back negative. Now we don't have to
worry about the doctors wanting to put in a G-tube! (Permanent
feeding tube in the stomach.) He did aspirate that day, but they
think that it was because he was lying down and maybe coughed
something up and then aspirated
it. He stayed in the hospital until the following Friday. I took
pictures of him in the hospital that first day there. For those
of you who know me, that's not very surprising that I took my
camera, it did make Tucker's nurse laugh a little though. I
couldn't help myself, we take pictures of him everywhere!
This is only
the beginning of our lives with Tucker but never the less, my
mother was right. Thirteen years later, I got a special needs
baby for my little brother! ...
...Tucker
has been doing great! He's been active, loud, and happy! His new
thing is getting up on all fours and trying to crawl!
...Of course
there is always the little odds and ends in someone's life but
these are the basics of Tucker's. Now I am going to skip ahead
here to May of 2003...
...Tucker
"stepped" (or in his case, "rolled") into the
arms of Jesus on May 3, 2003. He was just about 25-months-old. He
had been doing awesome and had even crawled the day before. Only
about 6 inches but, for him...it was a mile stone! We had a
burial service on Friday May 9, 2003. We only intended to have
family show up to this due to the fact that we were going to hold
a memorial service on 17th of May. Approximately 100 people
showed up! Later on at his memorial service, held at Cool
Community Church, over 300 hundred came and many shared during
the service how much Tucker had touched their lives. I can only
pray that the ministry of his life touched at least a few hearts.
As I've
mentioned in the above writings, he was very noisy! I never
realized I'd miss the sound of his toys in the middle of the
night or early in the morning when he'd wake up. I never knew I'd
miss my mom putting him on my bed in the morning because the fact
that he would smack the back of my head with his toys always got
me up faster than anything she ever tried! There has been a few
mornings when I still get up and go to his bedroom looking for
him. Reality hits again when I get in there and there is no crib.
We still have some of his favorite toys around and the
"Tucker" sign that used to hang above his crib is still
in his room.
I have many
friends that have been there for me through the whole thing. Some
have gone through it before me and know what it like. Some of
those friends never even got the chance to meet Tucker, but trust
me, they heard all about him!!! In fact, one of my best friends
never got that chance. He was supposed to meet him this summer.
He still came to Tucker's memorial service for me and I even
glued a picture of Tucker to the cast on his leg! There were also
people who had only met him once and still flew from back east to
be here for the service. (Some only made it to the burial)
Adjustments
around the house are hard to get used to. It seems so awkwardly
quite without that joyful little boy! We talk about him all the
time. One minute we laugh and another we cry. Of course his
pictures are still everywhere, as we still want to share his life
and hopefully use the story of his life for ministry.
Tucker
taught me so much in his short little lifetime. He taught me
patience. Patience in teaching him new abilities, and patience
when he cried and couldn't tell us what was going on. He taught
me to be thankful for the things God has blessed me with, even if
they are "different" He taught me more things than I
could list, but I think the two biggest things were to laugh and
to love. He taught me that I could still laugh when things were
not so good. That seemed to ease tension in the area. (Hospitals
in particular!) Then there is love. Tucker taught me that loving
people despite their "uniqueness" is probably the best
thing ever! After he was born it changed the way I thought about
people with special needs. All those people really want is to be
loved and respected like any other. I think that is the most
important thing he taught me.
God truly
blessed us with Tucker as our, "Bundle of Joy" for a
little over 2 years. It didn't matter that he was "
different," we all loved him for who he was. We never
thought he deserved things less than ourselves, in fact, the
little guy was way to spoiled! Everyone who met him loved him, we
loved him, I loved him, and I still do... He was my precious
little brother... my "bundle of joy."
Written by:
Connie Stigen (Sister of Tucker Wesley Reite, Trisomy 13) 2003
(My favorite bible verse!)
Phillipians
4:6
Do not
be anxious about anything, but in everything, by prayer
and petition, with thanksgiving, present your request to
God.
Well,
this is just my story and how I saw things during Tucker's life.
I'm sure everyone who knew him would be able to tell you one of
their favorite memories of this little boy. I hope by reading the
stories in the website you will see that people like Tucker are
are in reality, no different at all. They just need to be loved
and respected like anyone else.
This picture was taken at one
of my horse shows one week before Tucker passed away.
He looks a little grumpy because he was just waking
up!
Tucker enjoyed riding
in the car. Sometimes reflections from the sun
would make shadows on the ceiling and then he
would just crack up laughing!
My email address is: danorweegie@hotmail.com
