Wednesday, April 14, 2010

The One With the Perfect Day

This is Daniel. He was probably four or five years old when this photo was taken... about the time he was diagnosed with Batten Disease. He passed away night before last, in the arms of his family, at the age of ten. I have been thinking a lot about their family for the last couple of days. It makes so many of our day-to-day worries and stresses seem trivial and unimportant. I have been wishing... praying... that there was something that I could do. Today my prayer was answered, when Daniel’s sister asked if they could play this song that I wrote a few years back, for his funeral. This one is for you, Daniel.

Perfect Day

Daddy, fly me to Africa
Buy me a Jeep
And we’ll drive through the Kalahari.
We’ll tame a young lion and teach him to sit
And he’ll sleep at our feet in the grass
Yes, he’ll sleep at our feet in the grass.

Then we’re off to the ballpark
To play in the game.
We will wave to our hollering fans.
Dad, you’ll be on second and I’ll bring ya’ home
When I hit it right out of the park,
Yes, I’ll hit it right out of the park.

We’ll go to our island to lie on the sand.
We’ll have mangoes and coconut milk.
Then I’ll teach you to surf and catch fish with our hands
And we’ll build a huge fort in the trees
Yes, we’ll build a huge fort in the trees.

Then we’ll board a big ship and we’ll sail out to sea.
I’ll be captain and you my first mate.
We will fight off the pirates and swim with a shark
And discover a brand-new country,
Yes, discover a brand-new country.

And when the sun sets we’ll be sailing for home.
Mom will see our ship at the front door.
She’ll say “Shake out that sand before you come in,”
And “That lion stays in the backyard.”
“Yes, that lion stays in the backyard.”

Then you’ll read me a story and tuck me in bed.
You’ll kiss me and turn out the light.
Then you better sleep too, ‘cause you’ll need all your strength
When tomorrow we do it again.
Dad, tomorrow we’ll do it again.
Yes, tomorrow we’ll do it again.


JustJules said...

Beautiful! Perfect!

Carolyn said...

This was the only post I read today. I am so glad I did.

Thank you.

Gr8Life said...

Victoria, You have such an amazing gift! That song made me cry. Our oldest son died just after the age of 3 of an equally horrible illness called Metachromatic Leukodystrophy. Our 4th child Tabitha was born with the same illness and had a stem cell transplant at 6 months old. She is in a wheelchair & has some disabilities do to the progression of the illness. On April 1st this year, our 20 month old son was diagnosed with Metachromatic Leukodystrophy. Although we had him tested at birth and it showed he did not have this illness. The Dr's think the gene mutated and that is why he has it now. (they are now doing a mutation analysis) We are still in shock as were the Dr's when they saw the test results. And now that he is considered symptomatic he is not likely a candidate for a transplant. We are still waiting to hear from the Dr. if he can be transplanted. We still have not told our 2 older children. We don't want to burden them and I know they will be devastated. Anyway sorry to unload on you, but your music & the words always have so much meaning and they affect me deeply. What a blessing your gift is to us.
Thank You

Victoria said...

Oh my goodness! You know that I follow your blog, and I knew about your older son, and Tabitha... but GUMMY? That just breaks my heart. You are so amazingly brave, and such a good family. Thank you for your kind comment about the song, and for your great example of what it really means to be a parent. Love love love...

Jennilyn said...

Beautful song, good reminders. Cherish our days, find joy, share joy. Prayers for this family.

Garden of Egan said...

Wow! Beautiful post and comments.

The song is amazing. What a gift you have.
I'm humbled.

Joe Wisniewski said...

You know Vic, I can't help but think that somehow, and I know that it doesn't make sense .. yet .. but learning how to struggle with patience, in one struggle, results in good things happening like this. I know it makes no sense ... but again, we get a lesson on how acting on promptings WILL have an impact .. maybe not now .. but eventually. This event in your life and recent ones in mine that we have talked about are real what I call 'faith burners'.