Many of my friends and family have
contacted me recently for an update on Keeg. To be quite honest, I
didn't have anything good to say, so said nothing at all.
Keeg is getting a bit worse day by day.
His chest pains are daily now. He wants so much to get up and play,
but can not have any physical activity until his echo-cardiogram is
completed. Every now and then he slips away from me and does
something physically active. Afterwards his chest pains begin in
earnest and he's so very fatigued he can only stand with help. We're
counting down the days till he gets in with the pediatric
cardiologist and his geneticist.
Emotionally he's regressed
so very much. I can't tell you how many times in a day his sister and
I have to try to keep him from having an emotional melt down. He
completely loses it over minor things. For example, the other day his
sister asked him to put the frozen biscuits in the toaster oven. It
was a minor task. One she thought would be one step and simple, as
those are often the only task he can perform now. He laid the frozen
biscuits directly on the wire rack, with no pan under them. When they
melted down between the slots, and started to burn, we tried to hurry
up and clean the mess up before he saw. Yet, he did see. He was so
upset that it was all we could do to calm him. Once he forgot to cut
off the screen saver when we were watching a movie, another time he
forgot to put his bowl in the dishwasher when done eating, another
time he forgot where he'd put his shoes......Little things like this
severely upset him. You'd think the world was coming to an end, and
it's all we can do to convince him that it doesn't matter, and it's
all OK.
Keeg can no longer do even basic math
without struggling. He attempted to play an elementary math computer
game, and came to me crying, “I can't even figure out what 8 times
6 is”. This from the child who was doing Trigonometry 6 months ago.
At church, he attempted to take notes.
For those of you that know Keeg well, you know that he is an ardent
note taker. He'll take notes during sermons, Bible courses, etc and
then delve into them with research after. Due to his potential heart
condition, he sat beside me during the service. He spent the first 15
minutes struggling to write down the first thought that had been
spoken. I watched from the corner of my eye, unsure of what to do. Do
I let him continue to struggle and try? Or do I tell him not to worry
about it? Which of those things would upset him more? I didn't know
what to do, so I waited. About 30 minutes into the service he looked
at me with tears in his eyes and said, “Momma, I'm sorry I'm not
taking notes”. My heart broke, but I smiled, looked him in the eyes
and told him it was OK, just to listen.
At times his speech is so slurred you
can't understand what he is saying. Any other child would get
frustrated, but Keeg just repeats it over and over each time we ask.
Often we figure it out, other times he'll motion for us to just
forget it. It pains me to see that my child at times has no voice.
There are other times that he tries to
read aloud. Keeg has always been the one to read the scriptures aloud
in our daily devotion. Yet, now he struggles to read even a few lines
form the devotion itself. He stumbles over words and can't figure out
what they are. While playing hangman at the neurology office, he had
to ask a nurse how to spell “taste”. It was a nurse that has
worked with him for 7 years and knows him well. When he asked her how
to spell it, she looked at me in shock. There was nothing I could say
as it was all I could do to hold back tears.
Although Keeg has noticed these things,
the worst for him has been his looking up Scriptures. Keeg was very
young when he begin to learn the Bible. It was something that he just
had a personal knack with. Keeg learned the Scriptures at a young
age, and his understanding was well beyond his years. I remember at
not even 4 years old, he stood on a stage at The Straight Gate in
Lexington, and gave his personal testimony. When he was done,
everyone was wide eyed and had tears all at the same time. As he
walked to the back where I sat nursing his teacher, people reached
out to touch his shoulder as he walked by. I've seen him sit down
with pastors for hours, having conversations that far surpassed my
own Bible knowledge. Keeg loves reading his Bible. He loves sharing
the Scriptures with people more then anything. He's always told me
that there is a Scripture for everything you need in the Bible, and
more often then not he could tell you what that Scripture was.
Now however, he struggles to remember
where the books of the Bible are located. You can see his frustration
when he's looking for a book, and it doesn't come easily to him. I've
fallen into the habit of, when searching for a scripture, asking him
what scripture I'm looking for. Now however, he can't tell me. He
looks at me with this mixture of confusion, despair and heartache
across his face.
It's not just hard for him. His
youngest brother doesn't understand why he can no longer play with
him every day. He pleads and begs and cries.....not understanding
that it's not just a matter of choice.
Keeg's sister is struggling as well.
Keeg has always been her hero. She's always looked up to him, and
wanted to be like him. Now, suddenly, she's become his caretaker. She
looked at me with tears in her eyes while we were preparing dinner
and asked me, “Mom, is Bubba gonna be OK?”
I did what all Mom's do. I smiled,
looked her in the eyes and said, “He's going to be OK.” I then
went on, “I don't know what's going to happen. He may get better,
he may stay the same, or he may get worse. But what I do know is that
God is taking care of him and us, and that no matter what happens our
family is going to be OK.”
Keeg has so much on him and I can not
imagine what he is going through. I don't know what I would be like
in his situation. Yet, I honestly don't think I'd be as unselfish as
he is. He prays more often now then I've ever seen. He carries his
prayer journal with him everywhere. I occasionally catch a glimpse,
and am always amazed to find him praying for someone else! He prays
for every one we come in contact with and hear of. He prays for
people he's never even met! If anyone ever says to him or he
overhears a prayer request, he'll pray wholeheartedly. I see people
in our lives that are blessed by God, and I can't help but think of
the scripture in James that says, “The effectual fervent prayer of
a righteous man availeth much.” I see my son's prayers being
answered, and am moved by his faith. Even as he asks God why God has
made his life so hard, he still believes in God with his whole heart,
soul and mind.
Keeg's prayers are unselfish. Each
night, as he's regressed more and more, he's cried for the loss of
someone in his life he loves greatly. Yet, his prayers are always for
that person to return to God and to have a relationship with God. Not
only has he not asked God for that person to return into his own
life, he even went so far as to ask God to restore that persons
relationship with Himself, “even if they never see me again”. How
does a child at the age of 14 learn to pray so completely
unselfishly?
My children and myself don't know what
is going to happen. Right now, we are standing on a path that appears
to have tall, dangerous, craggy mountains ahead of us. Yet, we know
that often God will divert our path before we have to go over those
mountains. We also know that should we have to go over those
mountains, that God will stand by us and carry us when needed. He
will not forsake us. This path isn't an easy one, but the one thing I
am sure of is that my family will serve the Lord regardless of what
path we are led down. We will praise Him even in the midst of the
storm. We will continue to love Him with out whole hearts, minds, and
souls.
If ever our family should lose sight of
that, then I ask you my dear friends to remind me. There is no way we
can ever get through this without our God holding our hands, and even
carrying us in His. He's here with us, and I am forever indebted to
Him. I do not deserve the love He has shown us, yet I am so thankful
for that love.
Please continue to keep my wonderful
son in your prayers. Please pray for his siblings as they struggle to
handle Keeg's rapidly changing health.
No matter what happens, Keeg is my son
and my love for him will grow each and every day. I'm so very proud
of him. He is a daily example of how we should love. He's had some
issues, and at times I didn't know what to do with him. Yet, at the
end of the day, his love for others is unconditional and his
forgiveness reaches out even in the midst of his own pain.
I am blessed to be called his mother.
Please, keep praying for him.
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