"Matt
is two-and-a-half and has had a number of surgeries to correct heart
problems.
Just last week after his bath he looked in the mirror and started
rubbing
his chest with a towel. At first I didn't know what was wrong because I
hardly notice the multiple scars all over him. I saw him look at his
brother's
chest and it was clear that he noticed there was nothing there. He
continued
his search for answers by pulling up his Dad's tee shirt and looking
down
my blouse. Not until then did I realize what was wrong with him. He
looked
so sad and started rubbing again. All
of a sudden his brother took one of his toy trains and started rubbing
up and down his scar. He then told Matthew how lucky he was to have his
own set of railroad tracks to play on. This brought my husband and I to
tears. I guess we all have our own ways of looking at things."
Dawn
"Five
weeks before Bryan was born, I had my first ultrasound. They saw
something wrong with my baby. I had to travel 800 miles to a
medicalcenter
that could do testing and let us know what we needed to do. The doctors
there told us that babies like this die and that there was nothing they
could do. We actually had one doctor tell us that we were young
and
could have other kids! Even when he was born alive, they insisted
there was nothing they could do and that he would never grow or develop
and we basically we should let him die.To make a long story short, my
son
is now 6 years old. He has had 10 surgeries, spent 4 years on
dialysis
and recently I donated one of my kidneys to him. He has been fed
through a tube off and on for his entire life, but he's a happy little
boy. We still have to travel 800+miles for his care, but now the
doctors he sees have hope for him. Bryan is behind in development, but
he is learning things everyday. His life is definitely worth
living.
Sometimes doctors are wrong and sometimes there are miracles. I
only
wish that all children's stories turned out as well as Bryan's." Shelly
"The
hardest thing was to be able to be with my 5 year old son as he was
going
into the operating room for correction of a serious cardiac
defect.
I wanted so much to not cry but couldn't stop the tears. He
looked
up at me with his sweet innocence and said 'Mommy, everything will be
okay.'
When he was finally released from the hospital he was given a boxed
lunch.
As we were travelling home (4 hours away) he asked me if he could have
his lunch and I said 'sure'. He said 'Mommy what kind of
sandwich
is that?' and I said 'turkey'. He again looked at me and said
'Mommy
IT IS JUST LIKE THANKSGIVING. We sure have a lot to be thankful
for,
don't we mommy?' We CERTAINLY did!" Terry
"I have
a nine year old son diagnosed with Chronic Intestinal Pseudo
Obstruction.
Devon has had an ileostomy for the past five years which has
affectionately
been named "bum on my tum". It has provided Devon a
pain free management plan with little time commitment. Shortly after
the
placement of Devonís stoma we spent a marvelous family day at
the
beach. When swimming time was over, the moms got busy getting the
wee ones into dry clothing. I held a large towel up around Devon
which he repeatedly would drop. In frustration, I said "Devon,
you have to help mommy hold the towel", and he replied "why
mommy,
my bag covers my peter?!". Needless to say, I thought
to myself, Devon, it isn't your peter they're lookin at!
I had the wrong attitude, Devon had the right one! Devon
viewed
his ostomy as a "built-in cover up" , it was a "bonus".
As adults, we all need to take our lead from these children and see the
world through their eyes. Their lives have been filled with invasive,
painful
and all encompassing regimens. If we thought we were tired,
imagine
their feelings. If we thought we were confused, imagine what must
have gone through their little hearts and heads. We had difficult
choices to make as parents. In our case it was death or a device.
Did we really even have a choice? What we did have was a chance
to
change a chartered course!!! Devon's ostomy has given us back
our
lives. There is nothing he cannot do and I have the opportunity
to
watch my child thrive in all aspects of his life. Regardless of
what
it brings, I consider every day a true blessing." Moira
"I have
two boys, Devin, 9yrs old and Levi, 4yrs old. They both have
Hirschsprungs
Disease. Devin has had countless operations and procedures done
to
him. My heart breaks for him because he goes to school when he feels
well,
but he has very little control of his bowels. Each day is trying for
him;
through teasing or through odor secondary to the disease, he has to
cope
with so much. One of the hardest thing is trying to find the right
answer
to his questions. One time Devin looked up at me and said, "mom, please
don't let them operate on me anymore because what happens, mom, if I
don't
wake up?" And then he looked up at me and said, "but I know God is
watching
over me and he does help the doctors do what the have to do to me, so
that's
O.K. mom". Boy that just made me melt. Those little hearts and
minds
are great and glorious to have and to hold.......each day is special
with
Devin and Levi." Pam
"David
needed a tracheotomy when he was two days old, and it stayed in place
for
the next 15 months. Because he is both tall and thin, the stoma
site is quite noticeable. He has developmental delays and
speech
problems, too, so he began school when he was three years old. He was
excited
about school, even though he was very shy and usually had to be
encouraged
to play in small groups. After school, he came home, looked at me
with his big blue eyes and said "Mommy, I am the only one in my room
who
has a belly button in his neck? Am I that special?" I was so
excited
that he noticed the other children and felt special. He is now 10
years old and continues to bless us with his comments about life." Nancy
"My 8
year old, Stevie, has finished a long year of chemotherapy for
osteosarcoma,
a type of bone cancer. He has been really positive and brave and
had decided, long ago, to keep on living. Part of his treatment was an
above the knee amputation of his right leg to remove the tumor.
He
learned how to use his new prosthetic very quickly, so we let him go
visit
his friend. He came home and showed us his new "Seattle"
foot.
The life-like big toe had been worn completely flat on one side. He had
taken off his shoes to jump on his friend's trampoline, and then he
went
down their driveway on a skate board...on his belly. Unknowingly,
he had dragged his prosthetic foot down the drive!" Tom
"My son
was born with bilateral hydronephrosis, and now has chronic renal
failure.
During the last nine years we have learned that one of the most
important
things to remember is to have fun. We have learned to organize
our
lives so that when possible, we take off and do just that! We
live
our lives in a way that is normal for us, not the rest of the world.
Sometimes
that means just cutting loose and having fun wherever...at the spur of
a moment. Laughter has helped us through the roughest times.
That,
and these three words, "I LOVE YOU!" God has given us the
ablility
to take joy in small things and take nothing for granted. Life's
joys can only be appreciated when we compare them to life's
sadnesses.
It has been a roller coaster ride, for sure. But who doesn't enjoy a
rollercoaster?" Sharie
"Brianna
is missing most of her rib cage. The ribs on her back are fused
together,
and don't come all the way around on the front.They end on the
sides.The
ones on the top come all the way around, but they are malformed and
form
bumpy points. Several weeks ago I was trying to get Brianna to eat
oatmeal,
and was telling her the healthy reasons, and finally just told her that
oatmeal fills you up, and "sticks to your ribs". She put her spoon
down,
looked right at me and said, "BUT MOM, I DON'T HAVE RIBS, so where's MY
oatmeal gonna stick??????" I laughed so hard...what she said was so
true!!!". Jennie
"My nearly
5 year old son is a brain tumor surivor who was diagnosed at the age of
one and had surgery as well as two years of chemotherapy. When
his
little brother was first learning to walk, Josh was needing orthotics
and
a walker and at times a wheelchair to get around. One night he looked
up
at me and asked, "Can I be a man , and walk by myself?" I , of course ,
choking back tears said yes. Then I asked him, "Is it hard to
walk
by yourself?" Nodding, he said , "It's hard." And then, "Who can help
me?"
"I'll help you," I promised. Then we talked about how he had been ill
and
just needed some extra time and exercise to get strong. I'm happy to
say
that now, one and a half years later, Joshua is walking , running and
jumping,
sometimes a bit wobbly but getting stronger bit by bit. In fact,
of all three of my children, he's the one who empties wastepaper
baskets
for me, clears the dishes after dinner, helps unpack groceries and
tries
to shovel snow. In that sense he is like a little man. I'd like
to
add that the bedtime talk we had was the first, but I anticipate many
as
he grows in awareness of how his illness has affected his life.
We
as parents have to continue the dialogue on many levels as our children
grow. " Renee
"My
daughter recently
died as a result of complications from cystic fibrosis. Although she
was
on the lung transplant list, she didn't make it to transplant. When I
look
back at the short ten years we had her, I realize we let her live life
to the fullest for as long as she could. She competed in rodeo, loved
horses,
and rode even when she needed an oxygen tank to be thrown over the
saddle
horn with her... the last day she was home before she was hospitalized
for the last time, she rode her wonderful horse Dreamer. I will always
be glad that she got to participate in life when I could have very
easily
been overprotective and said, "No, horses are just too dangerous." A
wise
doctor told us when our kids were diagnosed with CF to let them do what
they could while they could do it...I'm glad we followed that
advice...." Connie
"Early one
morning
my three year old son and I were waiting in the lobby of our building
for
my husband to pull the car around. Once again we were on our way
to the hospital to get Sage checked out after a head bump. He has a
bleeding
disorder so any head trauma can cause a brain bleed. I was
feeling
sorry for myself, and feeling bad for my son, wondering if he would
ever
be able to just have a 'normal' childhood. Our neighbor came by and
asked
us if everything was okay. I told him what had happened. Sage was
standing
at the entrance to our building looking intently throughout the glass
doors,
out into the sunshine. Our neighbor crouched down next to him and asked
him how he was. Sage smiled, pointed out the door and said
"That's
my day out there." He knew he was going to the hospital, but his spirit
was irrepressible. I felt a surge of hope and pride. Who was I to
sell him short? Sage had enough hope for the both of us." Rebecca
"My son
Jared is 9
years old has Cerebral Palsy. He is in a wheelchair and is unable to
walk
unaided at all. Jared attends a local Primary school that facilitates
those
children with physical disabilities as well as those with none. There
were
only 6 children in wheelchairs at the time of this incident. Jared is
very
popular with his class mates and is included in the curriculum and
activities
as much as possible. A couple of years ago the school held a fancy
dress
ball at the end of the year for all students and their families. Jared
went as a clown with a striped, multicoloured clown suit,
multicoloured,
curly haired wig, his face painted and a big red nose. Everyone was
waiting
outside until we were allowed to enter. All the kids were running
around
, giggling and talking. As we were waiting I heard these children
whispering
behind us, "who's the clown?", "does anyone know who that is?", "Isnt
it
a great costume." This continued for quite some time. Jared must have
heard
too, as he started laughing and his laugh is very distinctive to him.
After
some time one of Jared's friends came flying out from behind us, "Is
that
you Jared?"! At this point Jared really lost it, and was laughling
uncontrollably
and then all his many friends came milling around. What really blew me
away was that, here was a child that they went to school with every day
who was in his wheelchair and was near his parents and sisters who most
of the kids knew. Yet all of his classmates could not work out who this
clown was. It took his laugh for them to recognise him. THEY DID NOT
SEE
HIS WHEELCHAIR WHEN THEY SAW JARED. HE IS TOTALLY ACCEPTED FOR WHO HE
IS
BY HIS FRIENDS AND NOT HIS CONDITION. It was very humbling. Just as an
extra note, over the years it is not children who can be
discriminatory,
but their parents. Children only repeat what they here their parents
say.
Otherwise children have total acceptance of those around them, this
just
showed me how much!" Marie
"Julian has
Duchenne
muscular dystrophy, and uses a wheelchair. Since the warm weather has
finally
come, he is choosing to "walk" to school on his own every day, as
opposed
to going by the bus. He left for school just a couple of minutes ahead
of me this morning, and I started driving down High Street looking
forward
to being able to slow the car down,
and give him a
final
wave good-bye for the day. I did so, he waved back, and as I continued
on I looked in my rear view mirror at him. He had a huge, beaming smile
on this face, and was kind
of rocking
himself gaily back and forth as he steered his wheelchair down High
Street,
and he was singing a song to himself, and smiling all at once. I looked
at this incredibly beautiful person through the mirror and I
transcended
to the heavens ---- If the payoff for all of our work and grief was to
just catch a glimpse of his happiness and joy enjoying a beautiful
spring
morning on his own, then it has all been worth it. He has been given to
us as a gift with a very large pricetag ---- a prophet that has come to
tell me how simple it is to celebrate a day." Julian's mom
"My
five-year-old son
Michael is always my inspiration. This year he had to have both legs
serial-casted
to stretch out the tendons on his heels. Although I was devastated at
the
reminder that his muscular dystrophy is progressing, Michael had a
great
attitude, so happy of our plans to have a cast party when we got home,
where all his buddies could sign his casts. When the therapist finished
the second cast, Michael hopped off the table and said, "Let me see if
I can still run fast." (if you have a child with Duchenne, you will
catch
the irony!) He did his little run and said, "yup, I'm still fast!" Then
he said, "Let me see if I can still jump." Although he's never been
able
to jump, he did his little one-foot hop and said, "not as high as
usual,
but it's still good." Then he headed to the therapy steps and said,
"Let's
see if I can walk steps." After trying, he said, "I can't, but I'll
just
crawl." No casts were going to change his joy for life!" Michael's mom
"My son
Kevan is seven
years old and due to a severe birth defect became a right,
below-the-knee
amputee at 11 months. This little guy has brought many tears to our
eyes
over the years, he has blamed me for letting the doctors do that to
him,
I have heard him crying in his bed and then he asks me if he will be
complete
when he is an angel, yet while these moments break my heart they are
only
a small part of Kevan. When he was born my husband and I already
had three girls so my husband was devastated that his only son would
never
be able play sports with him or run or just do guy stuff.
He
was so wrong! Kevan is a fast runner and he does everything the other
kids
at school do...in fact I have to make sure teachers don't sideline him.
I'll never forget the day the Ice Cream man drove by. Kevan had just
gotten
out of the pool and his leg was off. His sisters didn't wait for him,
and
were 3/4 of a block away with all the other neighbor kids, when I saw
the
most amazing thing. Kevan started to cry, but then got a determined,
almost
angry look on his face, and he hopped out the door and all the way up
the
street (with me trying to catch up to him). That was a real turning
point
for me. I now know that he will do whatever it takes to get what he
wants
and no one will ever leave him behind." Kevans'
mom
<>"I have
twin girls
with nephrotic syndrome. One of the girls presented with the
disorder
six months before the other. She was almost three at the
time.
The twin who was not ill had a very
hard time when her sister had to have all the bloodwork, I.V.s, poking
and prodding,and was so upset sometimes, she would hide at the end of
the
bed and cry. Over time she got used to being in hospital with her
sister, which we had to do since the only children's hospital is five
hours
from our home. The twins both got special attention, a ride in an
airplane, special toys and other nice treats. There was just one
thing missing though. When the second little girl came down with
the disorder she had to tell everyone how excited she
was.
Finally she was getting an I.V.too!!! Only the people in
the
hospital could understand; only they could say 'you are a brave person
to have that!!' She wasn't scared and was so proud of herelf...for the
first time. Finally she could be as privileged as her
sister!
They are such a brave couple of kids, they help me cope and take it
sometimes
a little on the lighter side myself".Anita
"My son
Bradley was
born with congenital heart problems. One day I told him that Jesus
lived
in his heart. He looked up at me and said, "I can feel him goofing
around
in there!"
"My
daughter Lauren
is a very strong little girl (now 9-years-old... diagnosed with
diabetes
aty age 7). She never complains about her illness. But, every now and
then,
we both have a pity party. The other night she broke down crying,
feeling
sorry for herself. She asked, "Mom, before school starts next year, can
we get me a new pancreas?" When she asked that question, I lost it!
Kids
shouldn't even have to know what a pancreas is...right? After a good
cry,
we both felt much better." Tammy
"I have a
son with
ALL (Acute Lymphocytic Luekemia) He had to have an infuseaport, (which
we simply call "port") placed in his chest to receive his chemotherapy.
He was playing duck, duck, goose one day with other children and he
said,
'pick me, pick me, I have a port.' "Dawn
"I have 6 year old
twins, Bethany
has Attention Deficit Hyperactivity Disorder
and
Breanna has cerebral palsy and is in a
wheelchair, unable to move
around on her own. After one particularly
hard day for Bethany, she
said to
me, she wished she was like her sister so she
wouldn't get in trouble
so much." Peggy
Have
you found
any silver linings lately?
