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Philippians 1, verse 3
"I thank my God upon every remembrance of you."
Holy Bible: King James Version
Kelly Swain Blades
February 18, 1992~October 1, 1993
Kelly & Michelle Blades
"On February 18, 1992, we were blessed with our youngest son, Kelly. I remember
just after he was born the first thing I asked my husband was,
"Does he have all his fingers and toes?" My husband, Kelly, looked down at me
with a big smile and tears in his eyes and said,
"He is perfect." Little did we know the journey our sweet baby boy faced.
The first few months our son did everything he was supposed to do.
Held his head, smiled, laughed out loud, and cried. When he was about 3 1/2 months
old he started crying a little more than usual. The doctor said he was fine.
Just give him Tylenol. By the time Kelly was 4 1/2 months, my mom noticed
he wasn't holding his head as well. He had also started stiffening his legs and arms.
When he cried out it sounded as if he was in pain.
The doctor was still telling us, this was "normal" and called him a "lap baby"
because we held him so much. The doctor said he was just spoiled.
But my mom insisted we bring him to a child neurologist.
Kelly was around 5 months old when he was seen by the neurologist.
He was diagnosed with celebral palsy. After a few weeks of therapy his legs
and arms stiffening seemed to have gotten worse. He also had constant irritability.
When we returned back to the neurologist, she had gotten her final report
from the therapist which confirmed what my husband and I had told her.
At this point the neurologist started asking about family background. My husband
and his parents could not think of any of the family members with any of these
type symptoms. My mother brought up the fact that my daddy's brother and
his wife had a baby girl, the youngest of 3 children. Her name was
Melissa (Missy) Renee Stafford. She was born in April, 1975 and in 1976
at the age of 15 months she passed away. Baby Kelly's symptoms were
almost the same as Missy's, as my mom recalled.
My mother said that Missy was diagnosed with Krabbe disease. Baby Kelly's
neurologist said at least she had a starting point. She left the room
and returned in about 20 minutes. She then sent for immediate testing for
Krabbe Disease. Of course I just knew that was not what was wrong
with my baby. After all, we had 3 healthy, beautiful children.
I can hardly recall the day I got the phone call. I remember answering
the phone and when Kelly's doctor identified herself, I felt my heart stop
beating as I detected something in her voice. All I can remember hearing was,
"I'm sorry, Kelly's test was positive." I felt the phone as it fell
from my hand and I must have screamed because it seemed in
slow motion as my husband ran and took me outside for air.
Kelly had a very long and hard journey as he survived the next 13 1/2
months with high fever, stiffening with pain, seizures, and having to wear
an oxygen mask all of the time. Baby Kelly had wonderful doctors
that tried very hard to help him. At that time they knew very little about
Krabbe Disease. They gave him Tylenol for fever along with seizure medication.
They even gave him Ativan for the pain.
For about a year we didn't go very many places, for he seemed
to be more comfortable at home with Mommy and Daddy holding him.
We contacted a genetic specialist starting with Tulane Hospital in New Orleans,
Louisiana, all the way to the Mayo Clinic. We found no one knew much
regarding this disease, coming to an end each time.
Kelly fought a long and hard battle with the love of his daddy,
mommy, brothers, grandparents, aunts, uncles, and cousins by his side.
On the night of September 30, 1993, as my husband and I cradled
him in the middle of us, we kissed him to sleep. His oxygen
was on his little face, I put his little hand in mine and
prayed that God would heal him, as I did every night. On that
night as my husband lay close to him asleep, I remember a mist
that filled the room and it felt as if there was someone on
each side of our bed. There was such a wonderful presence in that room,
words cannot explain! I don't remember when I fell asleep, I just knew that God's
holy presence was there and he was holding my beautiful baby boy in his arms.
There are many of us who have lost our children. They may be
gone but their memories live on in our hearts and minds. We never
forget them as each birthday passes or in every child that walks by
who's face is about the same age as their's would be.
The one thing that I have found comfort in, is knowing that
our Heavenly Father is holding his perfect body
until the day when I can hold him in my arms again."
Michelle Stafford Blades
"Kelly's Mom Forever"
March 15, 2000
Lunch with Mommy
Dinner with Daddy
"We Miss You"
"I Am Still His Mother"
In a baby castle, just beyond my eye
My baby plays with angel toys,
that money cannot buy.
Who am I to wish him back,
into this world of strife?
No, play on my baby,
you have eternal life.
At night when all is silent and
sleep forsakes my eyes,
I'll hear his tiny footsteps,
come running to my side.
His little hands caress me,
so tenderly and sweet,
I'll breathe a prayer and close my eyes
and embrace him in my sleep.
Now I have a treasure,
I rate above all other,
I have known true glory,
I am still his mother.
"Another year without you"
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copyright 2000 Kelly & Michelle Blades
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