The Lauren Langin Story

The Lauren Langin Story
This article was featured in the Fall 2002 VIBRATIONS Newsletter of the Colorado Services for Children
with Combined Vision and Hearing Loss.
By Lynda Langin
With still six weeks remaining before my due date,
my OB/GYN gave me her blessing to fly to
Charleston, South Carolina. It was to be my last
business trip before I delivered our baby girl and in
a week I was going to stop working. There I was in
my hotel room. This was my second pregnancy, so
I knew what to do, drink lots of water to keep
myself hydrated, take it easy and go to bed early.
But by midweek on Wednesday night at 11 p.m., I
started to feel contractions. Having gone through
this once, I thought, “Hey this will go away soon.”
Several hours later when it hadn’t I thought about
calling a friend in the hotel. I couldn’t decide if it
was “really necessary,” but what are friends for? I
called my co-worker, Karen sometime after
midnight.
Karen, another co-worker, Donna, and I arrived at the Medical University of South
Carolina (MUSC) in the middle of the night. I could tell the nurse needed reassuring, so I
proceeded to explain that all was okay and I just needed to get “checked out.” I was calm
and as though someone in the triage room was reading to me through my mind came a
verse from the Bible, Proverbs 3:5-6 “Trust in the Lord with all they heart, lean not on
your own understanding, acknowledge Him in all ways and He will direct your path.” A
friend read that verse to me two months earlier and I hadn’t read it again since, let alone
remembered it. I felt a peace and knew that if I trusted God he was going to get me
through this little hiccup in my life. Little did I know that he meant for me to trust and
lean on Him from then on.
Wednesday night turned into Thursday morning and the doctors were trying to stop my
contractions. My husband arrived by 11 am and I just fell apart when I saw him. I
couldn’t believe the mess I got myself into. I was more than 750 miles from my home
and I was missing my 16-month-old son, David.
Thursday turned into Friday and I was told that they could not stop my contractions and
they were going to have me deliver the baby. Lauren was born that Friday night on
August 15, 1997. Lauren was born at five lbs and ten ounces; she was able to breathe on
her own but had complications from being born prematurely.
I was discharged after four days from the MUSC without Lauren who remained in the
NICU. I needed to get some exercise so we went shopping. I kept seeing the Proverbs
verse in frames, posters, etc. that I heard when I was being admitted to the hospital. At
that point I was secure in trusting God, but little did I know that this wasn’t going to be
the hardest part of Lauren’s life. After six days, we left MUSC with a heart monitor,
oxygen for the flight home and a caffeine prescription to stimulate Lauren’s nervous
system. My company provided their private jet with a nurse on board to take us back to
my car in Philadelphia.
The first few months were difficult because she wore a heart monitor, which was nerve
racking for me. She was also on a caffeine prescription to help develop her nervous
system, which was nerve racking for her. The doctors forgot to tell me to discontinue the
caffeine dosage after two months.
When Lauren was a year old we moved to Colorado. David and Lauren started to
become the best of friends. At about this time Lauren began having, and still has,
numerous ear infections - too many to count. She has had four sets of PE tubes. But it
was not until nineteen months of age that Lauren was diagnosed with the rare genetic
lysosomal storage disorder called Mucopolysaccharidoses (MPS).
Mucopolysaccharides are long chains of sugar-amino-sugar polymers that are used in the
building of bones, cartilage, skin, tendons and many other tissues in the body. As we
grow there is a continuous process of building new mucopolysaccharides and breaking
down old ones - a recycling process. This ongoing process is required to keep your body
healthy. Lauren is missing an enzyme used in the recycling process resulting in the
storage of these deposits in virtually every cell of the body. As a result of the storage,
cells do not perform properly and cause progressive damage throughout the body,
including the heart, bones, joints, respiratory system, and central nervous system. A
deceleration of grow occurs sometime between 6 and 18 months of age. Motor skills are
usually limited, and language development is severely affected. Learning peaks in the
second or third year of life, and afterwards development regression occurs with the loss
of previously learned skills. Progressive mental retardation results. The ability to walk is
gradually lost, as is the language facility. Maximum functional age is usually between 2
and 4 years of age. Death usually occurs by age 10 and is typically due to cardiovascular
disorder, respiratory problems or complications of neurological damage.
We found out Lauren had the most severe of these disorders called Hurler syndrome.
Children appear normal at birth. Wow was this diagnosis overwhelming. We cried and
we mourned the loss of having a “normal” family. We mourned the loss of Lauren
growing up and having a family of her own. We mourned the loss of so many things that
she would never be able to do. As Charles Dickens wrote, “...the things that never
happen, are often as much realities to us, in their effects, as those that re accomplished.”
We were then and have been since intimate with the feelings of hopelessness, grief and
anger.
By two years old she had a T&A and a hernia operation to correct three hernias. At 21
months Lauren had her first sleep study. As she came home from the hospital an
employee from Apria Healthcare was simultaneously on route to my home with an
oxygen concentrator and tubing.
Four months later in January 2000 we had the opportunity to move to Australia for one
year. Since this was going to be the best part of Lauren’s life we made the decision to go.
We got involved with the Australian MPS Society and met many wonderful people who
were dealing with all forms of MPS. In March 2000, we went to our first MPS
conference where Lauren was the healthiest and happiest she has ever been. She was
getting and enjoying much attention.
In June we said good-bye to the first other child with MPS I we had ever met. His name
was Jamison. He contracted RSV and his body could not fight it off. MPS children have
a compromised immune system so it is difficult for them to fight diseases. There was
more grief. At the same time, Lauren was sick a lot with flu like symptoms. Her activity
level decreased significantly and she gained 10 pounds. By the end of July, Lauren lost
her eyesight. Unfortunately, Lauren could not tell us the pain she was having or that her
eyesight was deteriorating. I remember that it was a huge effort for her to climb up five
stairs or even walk more than a few steps. I thought that it was part of the disorder taking
its toll on Lauren.
In August 2000, we started CPAP therapy for Lauren’s obstructive sleep apnea, which at
the time we thought was the reason for her decease in activity. A week after we left the
hospital for CPAP training, we were back for an operation to insert a shunt to release the
pressure of hydrocephalus, which was the cause of her blindness.
Now, two years later, Lauren has just turned five years old. She is still in diapers and
may never be toilet trained. Lauren has moderate hearing loss and we are working with
her to accept the use of hearing aids. Lauren doesn’t like stuffed animals other than the
ones she bonded with when she was sighted. She needs to warm up to objects including
new and exciting toys over time. It may take her three months to get used to a new toy
but then she loves to play with it and there is no stopping her. Lauren enjoys coloring,
playing with her dollhouse, shape sorters and listening to “Blues Clues”, “Winnie the
Pooh”, “Bear in the Big Blue House” and an Australian children’s program, “Hi-5”.
Unfortunately her communication is limited to nouns but we are very thankful for what
she is able to communicate. When Lauren was 2 years old, she pronounced words better
than her 3 year old brother. It has been hard to see her deteriorate. Until the last few
months, I have been emotionally unable to do “Creative Memories” or look at past videos
where she was sighted and more understandable.
One of the most healing activities that I have done is to create a poster that documents her
“MPS Story.” This year at the annual National MPS Society family conference the
society encouraged members to document their children’s story and the positive effects
that they have had on other people. I sent the email to all that had interactions with
Lauren including friends, family and therapists. Every response was a reason to celebrate
with tears and thankfulness. It was a challenge to go through the process but my poster is
now finished, framed and a source of encouragement.
Lauren is going to Preschool at Wildcat Mountain Elementary two days a week. Lauren
has the benefit of being around “normal” children and learning to interact with them. She
also goes to Anchor Center for Blind Children the other days of the week where she has
the opportunity to be around other blind children. I feel Lauren has the best of both
worlds being able to go to school with “normal” and then special needs children. We
have been blessed by teachers who work together for Lauren’s benefit.
There was a story written by Emily Perl Kingsley and published in the Anchor News
Notes called Welcome to Holland that has helped me better understand how I feel. She
was often asked what it was like to raise a child with a disability. In story form she
explained that it was like getting on an airplane, anticipating your arrival in Italy, being
excited about all the fabulous plans that you’ve made and the things you will do there.
But then there is a change of flight plan. You have landed in Holland. It isn’t what you
signed up for or wanted. It is just a different place. You have to learn a new language
and get new guidebooks. You get to meet a new group of people that you would have
never met otherwise. One of the hardest parts is that everyone you know has gone to
Italy and is bragging about the wonderful time that they had there. For the rest of your
life, you remember that Italy was where you were supposed to go. The pain never goes
away because the loss of that dream is a very significant one. In order to be happy, you
have to stop mourning Italy and start learning to enjoy the special things about Holland.
We have experienced the resentment of learning that Lauren will die at a very young ae.
There has also been a gifr in knowing all this information. We love laruen and tell her on
a daily basis. We try not to wait to do things tomorrow. We have learned to value the
moment and the prcious time we have with her.
We try to remember that:
God hath not promised skies always blue,
Flower-strewn pahtways allour lives through;
God hath not promised sun without rain.
Joy without sorrow, peace without pain.
But God hath promised strenght for he day,
Rest for the labor, light for the way,
Grace for the trials, help from above,
Unfailing sympahty, undying love.
The Colorado Services for Children with Combined Vision and Hearing
Loss is funded through the U.S. Office of Special Education Programs.
Copies of this material may be reproduced with the consideration that
there is appropriate credit to the author and source.