| |
Logan's
Story: From Mom's Perspective
Background
Music: Give Thanks
In the winter and
spring 1994, I kept a journal of my spiritual
growth. In it I had a reoccurring theme. For some
reason I felt God was preparing my heart for
something tremendous. I couldn't tell if it was
terrific or terrible. I only knew that I had a
feeling of anticipation, or was is dread?!.
My husband, Jody,
and I had three wonderful children: two boys and
a girl. We felt our lives were complete. All were
in school and my husband and I both had jobs we
loved. I was a preschool teacher and my husband a
pork producer and farmer. We thought our future
was set. Then, I became pregnant
(unexpectantly!!.) Fearing a more dreadful
reaction than my own, I didn't tell Jody for more
than three weeks. He was very loving and
reassuring when the news was finally broken.
An abundance of joy
was expressed by our children when they heard the
news. A new life added to the family was an
exciting prospect for all three of them. But, it
wasn't meant to be. We had a miscarriage in April
of 1994. We all grieved for what would never be.
The kids often spoke of wanting another sibling.
I didn't want to risk the sorrow again.
Especially, when I really did enjoy my job.
Staying home with my babies was important to me.
Doing both would have been too difficult.
Soon after this I
lost my grandmother, whom I loved dearly. Surely,
these two huge experiences were what God had
planned for me all along. Little did I know this
was not the tremendous event I felt God
was preparing me for. God used this event to lay
the foundation for the job He had in store for
our family further down the road.
A change in my
teaching position happened in August 1997. I was
so thrilled to move to the 5th grade. I often
told people, I had done such a good job is
preschool, I was promoted straight to the fifth
grade. Beginning any new job requires a lot of
time, effort and concentration. This was
definitely true for me. So much so that it was
the end of October before I realized that two
months had gone by without the normal biological
occurrences.
I was bewildered.
What was I going to do with four children and a
job that required a remarkable amount of work? A
lot of praying and that's what I did!
It wasn't an easy
pregnancy by any means. Between the gestational
diabetes, kidney stone attacks, and sore, stiff
joints, I didn't know if I was going to survive.
I remember telling Dr. Ryan, my OB/GYN, that this
pregnancy was different than any I had ever
experienced.
Somehow, everyone
must have sensed the difference. Three baby
showers, two of which were surprise, were given.
This is uncanny for the fourth child. But, we
were very appreciative since we'd dispensed all
baby items several years earlier.
Dr. Ryan and I
discussed the Alpha-fetoprotein Testing and
genetic counseling. Jody and I felt there was no
need. We wouldn't be able to change the outcome
and didn't want the risks of an amniocentesis in
advance. Dr. Ryan respected our wishes. In
retrospect, we'd have done the same again.
Finally, the
blessed day came. The very evening of the second
surprise shower, I went into labor. They scared
him right out of the womb. That was their plan
all along. That's what they reported to me at the
shower anyway.
Labor went
smoothly, but delivery was hard. We joked that it
was because of my old age. He was born a short,
chubby 7 pounds 14 ounces, and 19 3/4 inches
long.
Soon after birth,
Logan began having trouble maintaining his body
temperature. I wasn't able to hold him for very
long. His temperature would drop and he'd have to
go back into the warmer. He had a tremendous
amount of trouble nursing. I had breastfed the
other three with no trouble. The problem was
quite confusing to myself the nurses and the
lactation consultant.
Logan's blood test
results were unusual. Dr. Hermann, his doctor,
decided to call the Neonatalogist in Columbia,
for advice. After several hours Logan's breathing
was becoming extremely labored. Dr. Hermann felt
he should be transferred to a major medical
hospital just in case his condition worsened.
An ambulance
transferred Logan, less than 12 hours old, to
Columbia, with his mom and dad following close
behind. I was lucky enough to have recovered well
enough to be dismissed. Dr. Ryan was concerned;
but she knew there'd be no stopping me. So with
strict orders to follow, she allowed me to go
with Logan to NICU.
The doctor and
staff were efficient, and caring, at the NICU.
After less than a half hour. Dr. O'Conner, the
neonatalogist, sat Jody and I down in and
explained that Logan had a heart defect. He
wasn't sure the extent of it yet; but he felt it
may require surgery. The breathing and nursing
difficulties were due to his heart and lungs
having to work so hard. He was put on IV's,
oxygen, and a feeding tube. He went on to explain
that he felt the reason for these conditions were
due to Down syndrome.
I remember going
numb and looking over at Jody who appeared to be
numb as well. A plethora of emotions flooded me.
For a fleeting moment, I felt that this wasn't
really happening. I was terrified Logan might not
survive. I was fearful someone would try to take
him away from us and put him in an institution.
My heart cried at the thought that people would
make fun of him. I wondered what my dad would
think about his namesake having Down syndrome. I
worried about our three children at home: how
they would react, what they would do if we had a
lengthy hospital stay. I decided to focus on the
heart condition and do like Scarlett O'Hara and
worry about the rest tomorrow.
Our whole family
convinced ourselves that the doctors were wrong.
The chromosome tests would prove Logan didn't
have Down syndrome. After all, he looked so
normal. The nurses allowed me to hold Logan at
bedtime during his tube feeding. These sessions
kept me sane. The second night I held him; I was
hit with the realization that the doctors were
right. I looked up at Jody and I could tell by
the look on his face that he experienced the same
knowledge the exact same moment I had. Neither
one of us said a word.
The next morning
was Sunday. We decided to find a church to
attend. There was one within walking distance. I
asked Jody if it would be selfish to pray that
the test would report he didn't have Down
syndrome. He replied, "of course not."
I knew I should be praying, "thy will be
done," but, I could only think of myself and
Logan. During that service, God revealed to me
that Logan did have Down syndrome and that
everything would be all right. He had a plan; and
that we needed trust Him. After the service, I
shared my experience with Jody. He said he knew
as well and that things would be fine.
When the test
results confirmed what we already knew. That
night, while our whole family gathered around
Logan's bed, Clinton, our 10 year old, made a
profound statement. I had just entered the room
and Clinton looked up at me and said, "You
know what? Logan has Down syndrome." He said
it such a nonchalant way that he could have
easily have said, "You know what, he has
black hair." I thought to myself, I can
learn a lesson from him. It's no big deal. It's
just a matter of fact. I felt instantly better.
Although, I grieved
for the baby I had anticipated; it didn't take me
long to rejoice for what we had. The duct closed
off and the hole in Logan's heart healed. We
returned home after 11 days in the hospital.
Something
tremendous did happen in my life! I'm not sure of
God's complete plan, but I do know that Logan was
sent to us to strengthen our faith and love. In
return, we are to strengthen the faith of those
around us by sharing what God has done for us.
Update: July 1999
It's been nearly a year
since I wrote the above. It's been quite a roller
coaster ride, but what a thrill! Logan has
touched so many lives and has been such a
blessing. He will soon be 14 months old and is
truly loved by everyone he meets. He is so
"in tune" to people. He looks right in
their eyes with his big, beautiful, blue eyes and
smiles with all his heart and soul. People feel
the love he conveys immediately. Even complete
strangers comment about his wonderful disposition
and want to pick him up and hug him.
One of my very best friends
made a comment right before Logan's first
birthday that was so true. She said, "too
bad we didn't have a little window, back when he
was in the NICU, to see how Logan is right now at
this moment. We wouldn't have been nearly as
scared or worried!!" I told her she was
exactly right. But, just maybe God didn't want us
to know right away. Maybe he wanted us to grow in
faith. His plan worked. We grew in faith. We got
closer to God, family, church, community, and
have embraced our wonderful gift He gave us.
Logan took some time
catching onto nursing. Pumping every three hours
around the clock and spending at least 45 minutes
trying to get it down through a tube, bottle or
nursing was wearing me out. I had wonderful help
at home, but I just couldn't kick a horrible
headache. I even went through several tests to
see if there was something seriously wrong with
me. It finally went away when I began to get the
nursing under control and get some much needed
sleep.
We had quite a time getting
therapies for Logan as well. He automatically
qualified for First Steps. But, in Missouri a
child has to be 50% delayed before receiving any
services. Also, we live in a small, remote area.
We were having difficulty finding anyone who had
less than an hour and a half drive. By about four
months, we began to receive regular physical
therapy. He now gets physical, occupational and
speech therapies once a week.
Logan rolled over
exceptionally early, at three weeks, to our
amazement. He didn't do it just once. Once he
began, he just continued. We were all thrilled.
He was going to be the exception to the rule. It
took longer to hold up his head, but when he did,
the whole family was in front of him cheering and
shouting. It was quite an exciting moment!! You'd
have thought he had won the Olympic gold medal. I
heard my kids tell people at church and at school
what Logan had done. It made me so proud.
Logan began to sit up at 7
months. He sat with his back so straight and
tall, you could tell he thought he was something.
He began to occassionally say, "mama"
when he was upset, and, "dada" and,
"bubba" to all of the siblings. Camille
would say, "sissy" and Logan would come
back with, "bubba." We all had to
laugh.
About this time Clinton came
into the kitchen where I was cooking supper. He
said, "mom, I'm glad Logan has Down
syndrome, because if he didn't, he wouldn't be
Logan and he wouldn't be nearly as fun. I love
him the way he is."
Logan was not sick once
until he was 7 months old. Between 7 and 12
months, he had pneumonia, sinus infections, ear
infections, sleep apnea, and the croup. I had to
take a family medical leave from school. I feel
it was mostly for my emotional well being and for
my kids. I was having a hard time adjusting to
all I had to cope with. The school administration
was wonderful and I came back ready to go and
finished the year successfully.
He's learned to eat solid
foods very well. We've found he is allergic to
milk products. It was causing constant
congestion, fluid behind the ears (we had to have
tubes), sleep apnea, and terrible eczema up his
arms onto his shoulders. We've been off milk
products about a month and all symptoms listed
above have disappeared. Please keep us in your
prayers. If they return, the next step is to have
his adenoids removed.
Logan has now learned to get
to sitting from the prone position. He can
occassionally get to a standing from there as
well. He can pull to a stand and stand alone for
a minute or so. He's taken up to four steps on
his own. He's doing quite extraordinarily!
On his first birthday, we
hosted a wiener roast in our yard. Approximately
80 people from our family, neighborhood, church,
community and school attended. We were so touched
by all the love and support shown. People
commented on how they felt special to be
considered a part of the celebration. It is such
an affirmation when we work together for a common
cause so important, and that is to help Logan be
all that he can be, and to allow him to help us
to learn from his hard work and determination.
And, he is SO determined!
When he is working on a new skill, he practices,
and practices, and practices. He also wants to do
it himself! I can tell already he's going to be a
determined little guy!
I thought I'd add a list of
things Logan likes and dislikes so you could get
to know him a little better.
Logan loves:
all types
of foods, feeding himself graham
crackers and Cheerios, giving sloppy
kisses, especially with the tongue, laughing at siblings: Josh,
Clinton and Camille, running in his Johnny Jump
Up, pulling up to a
stand,
pulling
clothes out of his drawer, pulling hair, holding up one
finger to show he's now one, running over people's toes
with his walker, swinging outside, taking
a bath and splashing, giving hugs, sticking his finger
up peoples noses and in their ears, to be tickled, playing pat-a-cake
and the eensy weensy spider, to be read to, eating toys, to be
rocked while being sung "Amazing
Grace", waving bye-bye
Logan
doesn't like:
lying on
his stomach, physical therapy, having his face
washed,
having
his nose wiped, doctors looking down his
throat,
taking
his vitamins, cleaning gunk out of the
corners of his eyes, being
on his hands and knees
I am now
in the progress of getting my master's in early
childhood special education. There is no one in
our area that does this and we're not sending him
anywhere further that our local school district.
I've moved to the early childhood classroom for
the next school year. I helped the superintendent
write a child care grant which we received. Logan
is able to come to school in the same building as
I am and have one of my best friends as his child
care provider. She took care of him three days a
week last year and did a wonderful job with him.
She did his therapies, read and sang to him, but
most of all loved him. We are very fortunate to
have things work out so well for us. We have
Jesus and the prayers of all our friends to
thank.
We'll keep
you updated from time to time and keep adding
pictures. I'm hoping to add some educational tips
sometime in the near future. Thank you for
reading our story. God bless you all!
Reflections
October 2001
I've have several "mini
stories" I'd like to share with you. So,
I've decided to call them Reflections. They are a
collection of thoughts, or momentous occasions I
thought would be interesting to reading.
Amazing Grace
from June 2000
I was
working in the kitchen, and listening to music, as I
often do, to help the time go by faster. I
chose Carmen's Greatest
Hits (I think it is.) Anyway, Logan, 20
months at the time, came up to me and started pulling
on my pants leg. I looked down, said,
"hi bud!" and continued to work.
He was persistent though and kept pulling on me. So, I stopped cleaning and
looked down at his face. I could tell he wanted
to communicate something really important to me
because he looked so intense. It was then I
heard the song that was playing. It was "Amazing
Grace." Tears welled up in my
eyes. The reason is because that song has a
lot of sentimental value for me. It was the
song we sang when our next door neighbor, a
Baptist minister, led me to accept Christ.
It was one of my grandmothers favorite songs and
it was played at her funeral. But, the most unusual thing
about it is that when Logan was just a newborn, he would fuss and cry
through every lullaby or childhood song I knew. And believe me I know a lot
since I'm a preschool teacher. As soon as I'd sing Amazing Grace, he'd
quiet down and would often go immediately to
sleep. One night when the
kids were staying at their grandparents, grandma couldn't get Logan to settle
down and go to sleep. Camille, who was 8 at
the time, told her that all she needed to do was to sing
"Amazing Grace" and he'd go to
sleep. They did, and he did. My
mother-in-law was amazed. It's so sweet to
hear Logan's siblings
singing the hymn in the van, when he's fussing
about the car seat or the long
drive.
When
Logan came up to me to make sure that I had heard
the song, I picked him up and he pressed his cheek to
my cheek and we danced and sang until the song was
through. Isn't God amazing that He can make an innocent child with Down
syndrome understand, appreciate, and enjoy the importance of
one song. How could anyone say that such
sweet gifts from God are inferior?
The Universal
Language February 2001
BASKETBALL!! You thought I
was going to say "Love" didn't you?
Sorry, but the universal language for this story
is basketball. Logan, like so many other toddlers
love playing ball. It was and is one of the very
few words he uses consistently. Logan had sat
through Clinton's 6th grade basketball season,
and Josh's junior high basketball season cheering
them on. He would watch them run up and down the
floor ever since he could hold up his head, and
this season was no different. Logan just couldn't
wait for each game to be over so he could run out
onto the gym floor and run where the BIG boys
had. One night after watching our high school
boys finish playing a game in our tournament,
Logan ran out onto the court like he usually
does. One of the players, an exchange student
from the Czech Republic, was just coming out of
the locker room. He looked exhausted, but he came
over to Logan. They stood looking at each other
for a second, checking each other out. Without a
word, Logan rolled the ball to Peter. Peter bent
over and picked up the ball. Logan turned his
head and pointed his chubby little finger towards
the goal. Peter walked over under the goal, Logan
followed. Peter handed Logan the ball. Logan took
the ball, raised both his arms straight towards
the goal. Without missing a beat, Peter raised
Logan over his six foot head towards the goal.
Logan neatly placed the ball in the net. Logan
let out a loud cheer for himself. Peter lowered
Logan to the floor again. They gave each other a
"five" and Peter left the gymnasium.
Even though not a word was spoken, and no one
witnessed it but myself, a wonderful mutual
understanding was exchanged. Peter is back in the
Czech Republic, but I'll never forget that moment
of happiness he gave Logan.
Church Tales
Summer 2001
One Sunday morning just as
church services were over, I turned to speak with
the lady sitting behind us in church. She was
looking at Logan. She turned to me with tears in
her eyes and said, "He is so
endearing!" I was so touched, I could only
say, "Thank you!"
I was visiting with another
"Baseball Mom" at a summer ball game.
She said that she just wanted me to know that
last Sunday, she and her mother enjoyed watching
Logan in church. Logan loves to move (sometimes
energetically, sometimes gently) to the rhythm of
the music. He also purses his lips and tries to
sing,. It comes out as an "OOO." His
brothers and sister are always trying to stifle a
laugh at his antics. She went on to say that she
and her mother both agreed that the church was
very lucky to have such a special little guy in
their congregation. I had always felt that our
family was blessed to have such a wonderful,
supportive church family during our good and bad
times, but at that moment I realized they felt
honored to have him as well.
Duck, Duck,
Goose August 2001
Logan (turned 3 in May) went
to Bible School for the first time. I wasn't
sure how well he would do. He'd not been in any
structured educational environment before. But,
the Bible School teacher was willing to let him
come. At the end of the evening I was told
he did great! I was so relieved to hear that. He
made a flower pot, glued macaroni on a cross and
scribbled in his book. The next
day, Clinton and Camille were sitting on the
floor in the family room. Logan started walking
around them in a circle, touching the tops of
their heads saying, "duh, duh, duh" as
he touched their heads. Then he touched a
head and shouted, "DUH!"
at the top of his voice and started running and
laughing hysterically. He then sat down in the
circle for one of his sibs to go around the circle. He
was obviously playing "Duck, Duck,
Goose" in which he had never played before.
We decided he must have learned it at Bible
School and we were thrilled. When we got to
Bible School that night, I relayed my story to one of
the workers. I was told that the class did play
"Duck, Duck, Goose", but Logan only
observed and didn't participate. I was
nearly speechless. I couldn't hardly
believed he learned the game just by
observing it the evening before. Who ever
said that children with Down syndrome can't
generalize (take what they've learned in one
environment and transfer it into another on?) I
am so thankful to God for
letting us experience and appreciate the little
things in life!
First Time at
School Stories Fall
2001
I was really apprehensive
about Logan beginning school. He is the youngest
in the class, and has Down syndrome, a known
condition that usually causes developmental
delays. With two strikes possibly against him, I
didn't want to make any mistakes causing a third
one. I knew he would need some extra help,
possibly from a paraprofessional, but I didn't
want him to be overly reliant on someone when he
could do things for himself, and I didn't want
the others to resent him for the "special
attention" he would get. I did a lot of
praying and began to prepare the class the spring
before Logan would enter school. We talked about
differences in people, children with special
needs, and began using sign language. The
children were very receptive, and the parents
were enthusiastic about what they were learning.
Logan and some of the other students that would
be coming in the fall, made a few short visits
during play time, and we scheduled a Play Day the
week before school started.
We were fortunate that the
school hired a lady I had worked with before, and
had known since I was a child. I know from
working with her in the past that she encourages
children to be independent when they are able,
but is willing to do whatever is needed when it's
necessary. I also know that she can be just as
stubborn as Logan can, and that's a good thing.
We are very lucky to have Miss Carol as Logan's
paraprofessional. The other students have been
very accepting as well. If they have a question,
we explain things honestly. That's okay with them
and life goes on.
Every morning the
preschoolers say the Pledge of Allegiance. Each
day a different student has the "job"
of leading the pledge. They stand with one hand
holding up the flag and the other on their heart.
It was a couple of weeks into the school year,
and Logan hadn't had the job as the "pledge
leader" yet. So, after school he walked over
to the flag, put his left hand on the flag, and
the right arm over his heart. He stood there
looking towards where the students would be
standing and said, "da, da, da" as he
nodded his head to the rhythm. He understood the
pledge even though he didn't have the ability to
recite it yet.
As I stated before, we've
been teaching sign language to the students, so
they are able to communicate with Logan. We've
been upfront with the children that Logan doesn't
say a whole lot yet, and that we need to learn
how to talk in his language. The children are
soaking it up likes sponges. Not long after we
began learning sign language, Logan was sitting
at the opposite end of the lunch table than from
where I was sitting. The little girl from the
other side of the the table shouted,
"Teacher, Logan says he wants some
more!" Sure enough, when I went over to
check out the situation, he was signing,
"more drink." She interpreted what he
wanted and let us know. It brought tears to my
eyes!
Back
to Logan's Link
|