Navigating the Storm

Recently I was approached by a co-worker after starting this blog, that she wanted to share our story on the nightly news.

I thought it sounded like an amazing opportunity to share what I was doing, to honor my Dad, and to help raise awareness for the work that I’m trying to do in helping others out there navigate this disease.

Reporter, Anna Carrera, and Dave, her photographer, came over on a Thursday morning and we talked about my Dad, why I was doing this, we looked through pictures, and then they wanted to go upstairs to get video of where I do my blogging.  Dave says, “Just type something. Act like you’re blogging.”

That’s a lot easier said than done.

I can’t just sit and start typing about my Dad.  I think about these posts for days, sometimes weeks, about what I want to say.

The pressure!

But I did start typing and this is what I came up with, just on a whim…

There’s no doubt in my mind that my Dad loved me more than life itself.

From being there for me from the very first day of my life, to me being with him on the very last day of his… our bond was strong.

Alzheimer’s is a nasty, nasty disease and I refuse to let it win and steal the joy of the life that we shared as father and daughter.

If I learned anything from my Dad, it is that hard work always pays off, to show kindness at every available opportunity, it’s okay to complain a little when the Illini are losing (okay, maybe a lot!), and to always love others.

My Dad may no longer be here to watch my kids grow up, cheer on the Illini as he loved to do, or to give me sometimes unwanted advice, but the lessons he taught me are forever instilled in my heart and mind.

 
*That picture of my Dad just happened to be the first one in my media files, so I grabbed it, but it’s definitely not the BEST one of this handsome man.  Again the PRESSURE!

So, here’s just one of my favorites instead…

Anna and Dave were here for a little over an hour, and a lot obviously had to get cut to fit the package time, but the one thing she references at the beginning of the segment, about comparing navigating life with Alzheimer’s to being on the open water, is one of the things I talked about…

When you think about your life, you can compare it to a boat ride.  Most days of your life, you’re smooth sailing.  Life is calm.  Peaceful.  So many opportunities all around you.  You look out, and the ocean is so open and vast, it seems like the possibilities are quite endless to what you can do with your life and where you can go.

Some days, life is like a vacation on a Carnival cruise.  Everything is right with the world.  Don’t worry, be happy is your mantra.

Other days life is coming at you fast and furious.  It’s an adventure!  Just like a ride on a ski boat, you have your highs, you’re catching every wave, the adrenaline is pumping.  And then you have your lows, when you wipe out, crash and burn, but yet you get back up again and keep going!

And then one day, you look out into that vast open space, and you see dark clouds looming.  And all of a sudden you’re no longer smooth sailing in that sailboat, the Carnival cruise ship has moved on to a different port, and the ski boat has been put away for winter.  You’re running out of time before the dark clouds approach and you become fully engulfed in the storm.  But then you look down and see you are about to tackle this monster of a storm stranded in a life boat.  This vessel is definitely not equipped for those dark clouds and rough waters on the horizon.  Welcome to life with Alzheimer’s.  The waves of forgetfulness are crashing all around you.  And let’s not forget the caregiver sitting right behind you, paddling just as hard as you are, being stung by the same sprays of ocean water hitting your face.  The battle with the ocean seems never ending.  There is no rainbow in sight.  You want so badly for Jesus to calm the storm.  You know He can do it, and yet He whispers, “Hold on!”

But you don’t want to hold on.

You’re ready to call it quits.

You’re done.

And that’s when I come in, where this blog comes in.

I throw you that life preserver.

After Dad died two different friends sent me this poem by Rev. Luther F. Beecher…

“Gone From My Sight”

I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.

Then, someone at my side says, “There, she is gone.”

Gone where?

Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.

Her diminished size is in me — not in her.
And, just at the moment when someone says, “There, she is gone,”
there are other eyes watching her coming, and other voices
ready to take up the glad shout, “Here she comes!”

And that is dying…

I want this blog to be that life preserver, to help you feel like you are not alone.  We are in this together, as I have already weathered this storm, and came out standing.  I may be battered and a bit broken, but I’m still clinging to hope for my family and yours that one day we will no longer have to even utter the word Alzheimer’s on our lips.  But until that day comes…. I’m here.  Until I hear my own glad shouts of “Here she comes!” I’ll keep praying and working.

“Lord God All-Powerful, there is no one like you. You are strong, Lord, and always faithful. You rule the stormy sea. You can calm its angry waves.” Psalm 89:8-9