A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, January 11, 2011


Because some days Spina Bifida just sucks, I decided that it is time to share a poem that my friend Joanna wrote last year.
Get the kleenex ready...

For Jet

Most every day I feel so thankful for the life we live,

The many blessings we enjoy - the chance we have to give,

The sweetest little miracle with mischief in his eyes,

The lessons he has taught us have come as a surprise.

And yet this source of endless love - our sunshine in the rain!

This precious gift of joy - can also bring me the most pain.

It's a whirlwind of emotions when I look at his sweet face,

The beauty of his life - a perfect portrait of God's grace.

But paired with that - the struggles of the future we've been shown,

The worries and the fear that come with so much still unknown.

It's easy to stay positive when hard times pass him by...

But I know that there will be a day when he asks"Mommy, why?"

"Why?" to certain things that let him know he's not the same,

The medicines he hates or why he cannot join the game.

And then sometimes I think "if I could only know for sure..."

Or "maybe that won't happen..." Or "maybe they'll find a cure..."

But Maybe is a dangerous game that goes two ways when played...

And inevitably you find yourself in the "maybe-worst-case" game.

And that game makes things dark enough for doubt to creep inside,

And even in an empty room you'll feel the need to hide,

The sunshine is long gone and it has now begun to rain,

And a growing sense of helplessness brings out forgotten pain,

There's nothing left in your control

or if there is it's slipping,

There is fear of losing everything

you've been so tightly gripping,

Like waves crashing over you

you fight the urge to fall

You gasp for air that isn't there -

You feel no strength at all.

Lost, confused, angry, desperate

Reaching for a hand,

Something to hold on to as you fight to try and stand.

Then suddenly you feel you're being lifted from the deep,

You're standing at the top of what at one point seemed too steep.

What seemed to last forever, in a moment now has passed,

What came on unexpectedly, is over just as fast.

A peace grows into hope as you embrace the help you've found,

Then hope gives way to joy as Love and light shine all around.

Instead of drowning in the waves, you're standing on the shore,

The doubts that once had pulled you down aren't with you anymore.

What happened to the overwhelming loneliness and fear?

Were they never real? Could they just simply disappear?

No - they're just as real...and just as strong as they were then,

They can return at any moment should I choose to let them in.

Never - I may say - I'll never let in fear and doubt.

But everyone has days where they're just too hard to keep out.

So if you find yourself in waters just too deep to swim,

Nights too dark to find your path,

Fights too tough to win,

Instead of holding on so tight and sinking 'neath the weight,

Give up control you think you have

and trade your fear for faith.

Written by Joanna Penny ~ For Jet ~

Don't say I didn't warn you!
If you can still see, take at look at this little guy! Yup my Nickolas is back!


  1. Okay - it's been a while since I'd read that, and paired with that sweet picture of Nick - now I'm crying! :) Thank you for reminding me of why I wrote it. Hug your little sweetie for me today. I'm so, so glad he's feeling smiley again. :)

  2. Love love love!!
    So good to see Nickolas all smiley again! King has that same sweater. :)