See what I mean about those dimples. She has been diagnosed with POTS syndrome. Never heard of it? That's okay, neither had we. Nor have most doctors that we have come in contact with. It stands for Postural orthostatic tachycardia syndrome. It basically is an extremely high jump in heart rate from lying to upright position that can cause fainting or even seizures. So they think it is caused by that or really deep in the brain epilepsy. It has taken almost a year and slogging through many internet forums to get ourselves to the correct doctors for this diagnosis. If you want to read more about the disease and coping with it, my wife has started a blog detailing her journey as a parent dealing with a child affected by this. http://lookingforlukah.com/ Now let me show you a picture of Lukah before the monster came after her.
That is my little girl getting a kiss from me. Lately, there has been too many times where I have had to move wires aside to kiss that same cheek.
I want with everything in me to give her life back to her. She hates it when we say this but I wish that the monster had went after me rather than her. Thanks for listening and allowing me to educate.
AFTER YOU FALL
(for my sweet daughter Lukah)
There was a time
not so long ago
where our main worry
was if you had enough sunblock on.
You were so pretty
running around chasing your brother
as the wind blew your hair
and the sun kissed your face.
I can actually hear your laughter
as you roll around in the grass
fighting with the dog
over his coveted chew rope.
Somehow, some other force took over
ending those carefree days,
making you a prisoner of your own body,
robbing you of your youth.
There were so many calls
to rush to the school
that even when you are home
a ringing phone sinks my heart.
As a parent, I live in fear from this monster.
But I can’t imagine what you feel
when you drop and shake
and lose hours of your day.
Just know we won’t leave you.
We won’t give up on an answer.
As John Paul Jones exclaimed,
“I have not yet begun to fight!”
After you fall, we will be there
hopefully to catch you.
But sometimes its too late
and we have to just pick you back up.
Your strength gives me strength
and I’m amazed that you can still smile.
Remember, I will always be your dad
to help you after you fall.