Guest Blogger: Joanna

There have been some recent developments with a few families in the SB community this summer that have been on my heart... a lot. Whenever friends are going through difficult changes it can touch your life - but even more so when their life is SO closely tied to yours. Whenever someone goes in for a CT scan, or has a bladder ultrasound, or receives the news that a shunt is needed, or that they have to start cathing....that is so, so real to me. I feel what they feel. I worry with them. I grow strong when they find renewed strength. It's such a bond. It's amazing...and sometimes hard. Because it makes you aware of all the things you could face...might face...will face...it's all unknown...and it's all real.


So sometimes it's hard to stay focused on the "live life day by day" motto with these possible glimpses into our future.


Tomorrow Jet is going in for a procedure. I don't really feel like going into it (it's nothing major) but it falls into that "bladder" category (one of the 3 B's of SB). The details aren't really important right now. Some of you know about it and know what a mind game making this decision has been for me. It's just one of those "extra" things we deal with sometimes and wish we didn't. But I have faith that it is all going to be okay - and we are blessed that this is only a little thing and not a major deal.
So I'm asking for prayers. Prayers for our peace of mind and an easy recovery for Jet. :)
And in the mean time I wanted to share something I wrote. I feel it's sometimes therapeutic to write out feelings (I think my fellow blogger mommies and daddies would agree) so I did...and it kind of turned into a poem...so I went with it. :)




"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 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 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."
~ For Jet ~


Joanna