The true story
straight from a
mother’s heart,
of her baby’s
fight for life
Once
upon a time there was a young
lady who thought God wasn’t
going to have her get married
for a long time. So she was
thrilled when God brought her
Prince Charming into her life
and asked her to become his wife
on December 22, 2004. God had
clearly brought these two
together so they committed to
stay by each other’s side until
death alone parts them.
The two had an eight month
engagement and then on August
20, 2005, they had a beautiful
wedding. She had on a long white
dress with a full skirt; he had
on a black tux with tails. The
bridesmaids had colorful wild
flowers wrapped with bows lying
across their arms. Their family
and friends were there to
witness the event. At the end of
the ceremony they shared their
first kiss. Yes, it was clumsy
and everyone laughed, but it was
a sweet moment in time that will
never be forgotten.
One month after the wedding, the
young lady asked her husband if
they could start trying to have
a baby. He agreed, and they were
pleasantly surprised when God
answered their prayers and one
month later they found out they
were indeed expecting their
first child. The pregnancy was
as wonderful as it could
possibly be. The soon-to-be mom
had enough energy and was
morning sickness-free so she was
able to stay at work during the
whole pregnancy. Her employer
knew when she went into labor,
she would be done with work for
good.
On the morning of June 16, 2006,
she went to work as usual. She
left work at two o’clock as she
normally did. But at three
o’clock that same day, she was
surprised when she started
feeling contractions and they
were only seven minutes apart.
Within an hour she called her
husband home from work because
her contractions were getting
closer together. By six o’clock
they were meeting the midwife at
the hospital with the
contractions about two minutes
apart. At 8:10 pm their little
prince was born. Dillon Josiah
Kuenzi entered the world. And
they all lived happily ever
after?
No, you see this is where
the fairytale ends and real life
starts.
We chose the name Dillon because
it means Faithful. God
was about to prove His never
failing faithfulness to us and
test our faithfulness to Him
like we never imagined. Dillon
was born at six pounds ten
ounces, but he was born gray and
not breathing! I remember
leaning back on my husband
asking, “Why isn’t he crying?”
over and over again. After a few
minutes, the nurse took Dillon
out of the room and it was an
hour and a half before we were
able to see him again. When we
did see him, he was intubated
(breathing tube down his throat)
and not moving at all.
We sat by his side talking to
him the whole night. By three in
the morning, they had him off
all oxygen and he was breathing
completely on his own. At six, I
finally decided I needed some
rest so I went back to my room
to sleep. However, about 7:30
AM, the doctor woke us up and
her (nearly) exact words were,
“Your son just had a seizure. We
are transporting him to St.
Christopher’s Hospital for
Children in Philadelphia. The
transport team will be here
within the hour. Go back to
sleep, you’re going to need your
rest.” And with that she walked
out of the room leaving my
husband and me shocked and in
tears.
Sure enough, an hour later I was
in the back of the ambulance
with Dillon. Josiah went home to
get some things and drove his
car to meet us there. I remember
walking in behind the transport
team in a daze. They told me
where to sit and wait while they
admitted Dillon into the NICU
(Neonatal Intensive Care Unit).
I must have looked like the
typical “little lost puppy” as I
was in such a state of shock and
sleep deprivation that I felt
like I was in a dream. At the
hospital, they began to run
different tests on Dillon. This
went on for several weeks. He
had a couple CAT scans, MRIs,
EEGs, etc. At first the tests
were coming back with no brain
damage, but the test a couple
days later eventually showed the
damage. They finally decided
that the brain damage was a
result of him not breathing when
he was born, but no one could
tell us the reason why this had
happened.
The timeline of everything is
hard to remember, but I want to
share some of the major events
with you. For the first two
weeks, Dillon was so drugged on
seizure medicine that he didn’t
even open his eyes. His veins
were too hard for the nurses to
get IVs into so they had to
place an IV into his chest in
the operating room. Dillon had
no sucking or swallowing reflex
when he finally did wake up. The
doctors had to place a G-tube in
his stomach in order to feed
him.
I thought something was wrong
with his eyes, but was told that
the part of the brain used for
vision was not affected (it
turns out it doesn’t have to be
for there to be problems, I will
explain more of this later.)
Another effect of the brain
damage is that Dillon has never
uttered a single cry. Although
many moms would think this to be
a blessing, it is hard to not
hear the sound that is expected
from a baby. I had never even
heard of another baby that does
not cry – ever! The doctors
can’t explain this since his
voice box does work. We know
this because Dillon does sigh on
occasion.
June 22nd was
my 21st birthday
and I received the best present
I could ask for – the
opportunity to hold Dillon for
the first time. Josiah and I
were living at the hospital
during all this. He had to drive
almost 2 hours to work everyday
and back again at night. One
rainy day Josiah hydroplaned and
totaled our car on the Turnpike.
Our families came in from out of
state to be with us throughout
this whole ordeal, our church
brought us meals and even took
up a love offering to help us
with the expenses. We were in
the NICU for five long weeks.
Even when we finally left, I
didn’t understand what Dillon’s
future was going to be.
At eleven months, Dillon still
cannot hold up his head, but is
receiving therapy weekly to help
him learn how. He has hearing
loss requiring hearing aids in
both ears. He still cannot suck
or swallow and must be fed
through the tube in his stomach.
He eats all night long with the
help of a feeding pump. Since he
cannot swallow (his own
secretions or any liquid/solid
food) we must constantly suction
him whenever he coughs. We think
we may be seeing him swallow on
occasion but it is not
consistent enough to give him
any food by mouth yet.
Dillon also has what is called
Cortical Vision Impairment.
After leaving the NICU and
demanding to see an eye
specialist, I was told he was
totally blind, and I should not
even bother wasting my time
trying to stimulate him. I
didn’t like this answer so I
found a different doctor. It
turns out that Dillon’s eyes are
healthy and work, but the
connections the information must
go through to get from the eye
to the interpreting part of the
brain are not working. (This
condition is called Cortical
Vision Impairment or CVI.)
Eventually we were able to
determine at times he has light
reaction. When Dillon was about
8 and one-half months old, his
vision therapist was able to get
him to track a black and white
object for the first time. With
CVI, his vision can be better
some days and other days he
cannot see much at all. It is
very hard to tell if he can see
or not since a lot of children
with CVI use the different
peripheral fields rather than
looking at an object straight
on. Most of the time, however, I
do not think he is seeing.
I never truly understood how
much life can change in the
blink of an eye. My life was
supposed to be different. I
thought I would have the baby,
go home 4-6 hours afterwards, be
a stay-at-home mom and
eventually homeschool our
children. I am now a mom to a
special needs little boy and am
his 24/7 nurse. All my hopes and
dreams have come crashing down
and I am still learning to deal
with it. I did not have plans
for him to be a doctor, or
lawyer or anything like that. I
did plan for him to be able to
cry, eat, crawl, walk and talk.
I also had hoped he would be
used of God when he grew up. I
believe God is going to use my
son, but not in the way I
thought.
Dillon may never walk, crawl, or
even roll over. He may never
learn to hold his own head up;
he may never talk. I may never
get to hear, “I love you,
Momma!” come from his sweet
little voice. Our life is
forever going to be dealing with
doctors, hospitals, medical
insurance, therapists, and
medical equipment.
How do I deal with this? I can
honestly say I am only making it
through day by day by resting in
God. There were times when I
allowed myself to get angry at
God for allowing this to happen
to Dillon and for not healing
him. I still look at him and
start crying several times a
week. At one point I let myself
go into such a pity-party that I
actually wanted to just run
away, but knew that the memories
would follow me. So I was
thinking of the quickest,
easiest way I could take my own
life. I just wanted to escape
the overwhelming heartache I was
experiencing. Deep down in my
heart, however, I knew I
couldn’t ever really end my
life. I know God allowed this
situation and God would carry me
through it.
I want to flash back in time to
October 15, 2003, to explain how
I can trust God with not only my
life but now the life of my dear
little boy. It was on this
evening while in a church
service I gave my life to
Christ. I repented of the sins I
knew I had committed (lying,
stealing, looking with lust –
which is called adultery in the
Bible--I had broken every one of
the Ten Commandments.) According
to God’s Word these sins were
sending me to eternity in Hell,
separated from God. Romans 3:23
– “For all have sinned and
come short of the glory of God.”
However, God sent His Son,
Jesus, to die on the cross and
take the punishment of my sins
if I would only accept His
payment. Romans 10:13 –
“For whosoever shall call upon
the name of the Lord shall be
saved.” That night, I
realized my sin against the Holy
God and did indeed turn from my
sin to making Him Lord over all
areas of my life. I had always
“believed in God” but that is
different than coming to Him in
repentance (of sins) and faith
(that He will save you.) Second
Corinthians 5:17 –
“Therefore if any man be in
Christ, he is a new creature:
old things are passed away;
behold, all things are become
new.”
At times our situation with
Dillon seems overwhelming. We
wonder why God allows us to go
through this suffering. But then
we remember how much Jesus
Christ was willing to suffer for
our sake. Matthew 26:67 tells
just a little of what Christ
went through before He was
crucified – “Then did they
spit in his face, and buffeted
him; and others smote him with
the palms of their hands.”
Yet Christ suffered it all, so
that I could be saved.
Everyday I need God’s strength
to help me care for Dillon and
not get discouraged when I see
other babies his age and know
just how far behind he is. I
still ask God for healing of my
son; I still ask if there could
possibly be another way; I still
ask God to remove these
circumstances from my life. Even
Christ asked His Father if there
was any other way other than
that of the cross. Luke 22:42 –
“Saying, Father, if thou
be willing, remove this cup from
me:” However, the rest
of the verse says,
“nevertheless not my will, but
thine, be done.”
You see, I can ask God to heal
Dillon, but ultimately I need to
be willing to say “not my
will, but thine, be done.”
This is a constant struggle for
me, but each day God is with me
and helps me. Hebrews 13:5b –
“for he hath said, I will
never leave thee, nor forsake
thee.” Second
Corinthians 12:9 – “And he
said unto me, My grace is
sufficient for thee: for my
strength is made perfect in
weakness. Most gladly therefore
will I rather glory in my
infirmities, that the power of
Christ may rest upon me.”
We don’t know what God is going
to do in Dillon’s life, but I
know that His grace is
sufficient. I know that God has
already taught me so many things
during this time and He isn’t
done with me yet.
Everybody experiences grief and
sorrow at some point in their
life. The difference in our
lives is that we have a
relationship with Jesus Christ.
He speaks to us through His
Word, the Bible, and we speak to
Him through prayer. Through this
communication, we know that He
is there to help us through the
hard times, and we can be at
peace knowing He is in control.
This is not found in having a
religion, or having a belief, or
having good works. Peace can
only be found, especially in
difficult times, when you have
this personal relationship with
the One who gives peace. John
14:27 – “Peace I leave
with you, my peace I give unto
you: not as the world giveth,
give I unto you. Let not your
heart be troubled, neither let
it be afraid.”
Do you have a personal
relationship with Christ? Was
there ever a single point in
your life when you confessed
your sins before God and turned
away from them, leaving them
behind and turning instead to
serving God with your whole
life? If you would like to know
more about how you can do this,
or would like to receive a free
Bible Study, please contact me
and let me know, either through
our family web site or my blog
(both of which are listed on the
back page in order). If you
would like to read the whole
story of how I came to Christ,
please go to our family website,
click on “Our Family” then click
on “Tiffany’s Bio”.
March 2008 Update: Dillon is now
21 months old and is finally up
to 24 pounds! His ears have
improved significantly and he no
longer needs the hearing aids.
However, his brain is not
responding to what he hears,
just as his eyes don’t respond
even though they are healthy. In
December 2007, Josiah and I
attended lectures at the
Institutes for the Achievement
of Human Potential. They have
helped parents of brain injured
kids for a half a century. We
have started Dillon on a program
where Tiffany works with him for
5 hours - one hour on, one hour
break - every day. During this
time she stimulates all five of
his
senses with great frequency,
intensity, and duration. We have
seen some improvement with his
eyes contraction and restriction
of pupils to light and beginning
to gain outline perception
(occasionally looking at black
and white silhouette pictures on
contrast cards). He has also
begun again to lift his head
with great effort and is overall
more alert. We praise the Lord
for Dillon making these
improvements as we know it is
only with His strength Dillon
can change. 
Thank you for taking time to
read about our precious little
boy. The birth of Dillon has
changed my life forever, but the
Lord changed my life in an even
more dramatic way before Dillon
was even born. Would you now
please take the time to examine
your life to see how you match
up to God’s standard?
www.WhatStandard.com
DillonsMommy.blogspot.com
