Through a Father's Eyes - By Greg Levad
Keslie Rose came to us on April 11, 1996, very quickly. She arrived just
thirty weeks old, and the words the delivering doctor spoke made my heart
slowly begin to rise out of the pit of my stomach.
She said that our little girl looked great for a preemie; she was breathing on
her own, nice and pink, and her vital signs were strong. She was doing well.
Keslie would need to stay in the hospital only until she gained some weight. My
little girl would be fine. I rejoiced.
Then the news came that Keslie Rose was not doing well, and the team at St.
Anthony's had some concerns. She would need round-the-clock care.
Her health began to erode. Oxygen, feeding tubes, life monitors, infections
and possible life-threatening scenarios quickly became my reality. I prayed.
The eight weeks Keslie spent at St. Anthony's and Children's Hospitals, I
spent splitting my time between a full-time job and remodeling the fixer-upper
we had just bought. From 6 a.m. until 10 p.m., I was working. My wife spent her
time at the hospital with our daughter. My son spent his time shuffling between
grandparents, mom and me. I felt disconnected.
For six months I listened to doctors try to explain what they thought was
wrong with Keslie, and for six months nobody knew for sure how to label her.
Eating problems, mobility problems, visual problems, sensory problems and motor
problems.
I accepted the here and now about Keslie, but refused to accept any long-term
outlooks. She was my daughter and nobody was going to convince me that "she
would not.," or "she may never.," or "she won't be able to.."
When the doctors finally took pictures of her brain, my worst fears were
realized. She had a condition known as Perivetricular Leukomalacia or a
softening of the white matter of the brain. The brain was damaged globally and
it was irreversible. I cried.
Day-to-day life with my daughter is, well, normal. She has good days and bad.
She has a wonderful personality, a great disposition, and is a happy
well-adjusted child.
She is learning to communicate. She is learning to see with her eyes, ears and
hands. Learning to sit up, roll over and be mobile. Keslie has taught me so
many things about herself and myself that sometimes I wonder who has the
disability, her or me.
I am so proud of her. I don't have problem with the denial issue; but I am
living in denial in certain areas of her life. She will walk one day. She will
speak words and communicate with people.
She will not be legally blind all of her life. She will lead a normal life and
be able to take care of herself. She will work at a job one day. Keslie will
even make me a grandfather one day, if she chooses. Many miracles will take
place in her life, and I feel fortunate to be a part of that. Keslie is
"Heaven's Child."
My wife is awesome. She ferreted out information that for all practical
purposes was not available to the public. She found services, information and
help for Keslie as well as the rest of the family that somehow does not get
publicized.
I still can't figure that out. Billions of government dollars set aside for
people like Keslie and nobody to spread the word. If not for my wife and all
the people who surround her, Keslie would not have become the wonderful person
that she is.
I have trouble sometimes dealing with the "she can't," "she won't," and "how
sad it must be for you" people. I don't feel like a victim, nor do I feel
Keslie is a victim. She is who she is for a greater purpose in life. I could
not love her any deeper if she were born at full term with no complications.
My daughter has more than a label, a condition or a disability. Keslie has
hope, and love, and compassion and lots of determination. She also has my heart
and admiration.
- Keslie is now a second grader and her dad is studying to be a
chef.
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