Tuesday, August 10, 2010

A Glimpse...

Now don't worry - our California trip posts are not over yet. :) There are still many fun, fabulous adventures to share -
but today I was in a different frame of mind and wanted to share something as well as ask for prayers. 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 ~


krousehouse said...

Lovely, perfect, beautiful. Many prayers to Jet tomorrow for an easy recovery back to his precious happy self.

Micki said...

Praying all goes well tomorrow. Hugs and kisses to Jet!!!

The Dugan's said...

Thank you for sharing that....such a perfect way to end my day :)

Stephanie said...

First of all, that last bit about the control we THINK we have is SO true! I struggle with that all the time. I have to constantly remind myself it's a false sense of control, because God is the only one who knows the plan for Nathan and our family. And so although it may rain, and even pour, we try to enjoy every little moment and dance in it! For brief moments I think about what it would be like for Nate to be running around like a typical 2 year old, but it doesn't go very far. The truth is, I simply can't imagine it because that just isn't who he is. He would be a different boy altogether. It's what he's been through and continues to persevere through that makes him who he is. Big hugs to you and Jet and I definitely be lifting you up in prayer!

Meinhardt Family said...

Joanna! Beautiful!! I got a little teary. It is easy to forget about the life we are living, but we get reminded, like you said, when others are dealing with the "side effects" of SB. It is a reminder that we are part of that life. All we can do is have faith. Faith in God, faith in ourselves and most importantly, faith in our little ones and what they will one day accomplish.
I hope all goes well tomorrow with Jet. I'm thinking about you guys and sending good thoughts, prayers and hugs.
Thank you for sharing your feelings.

Selina said...

Good Lord, that was beautiful!!
I know Jet will do fine...Sending prayers for peace and a speedy recovery for sweet Jet!

Summers Family said...

Sending you lots of love and strength tomorrow. I'm confident that all will go well.

I hope your heart starts to feel lighter again soon. You are a good friend and we all thank you dearly for the continual love and prayers that you give us. Please know that it matters and it's so appreciated.

Hoping that Jet will be back to his adorable happy self soon.

Lots of love my friend!

I just got caught up on all of your adorable Cali pictures - SO MUCH fun!!

Scasmflops said...

This is beautiful friend!! I am praying for you guys, and will keep lifting you up tomorrow. Lots of love from Cali. :)

Stefanie said...

A perfect poem :)
Praying that all goes well with Jet and he is back in your arms soon.

Guess Family said...

Best of luck tomorrow, Penny's!!!!! We love you all and youll be in our prayers!

Leigh and Andy said...

So beautiful. Thanks so much for writing down EXACTLY how all of us SB parents feel. Lots of prayers for the three of you tomorrow! Jet is going to breeze through it and be back to his sweet self before you know it! lots of love from Michigan! give Jet a big hug from me and a little growl from Grey. :)

Heather Weir said...

Thats beautiful. Thanks for sharing your thoughts as you go through this trial. I'm with Leigh and Andy you put down in writing how we all feel. I'm just so glad I've found such strong women and moms that area few steps ahead of me in this SB game to see there are victories and not just trials. That our little angels are just that little angels that need our love and care. Prayers for you and Jet. I hope all goes well!

Amanda said...

Thank you Joanna, That was beautiful.
I am so glad Jet is doing great. Bouncing back and ready to play - and be the star in your wonderful photographs! All the doubt and worry and researching and you guys made the right decision for Jet.

JourneyWithTheCrosiers said...

So well put, as always, Joanna! You have been such an inspiration and provided so many encouraging words to me since Beckett's diagnosis and now that he is here. Documenting those emotions is an amazing gift to so many.
Hoping Jet's procedure went well and he is recovering quickly.
Love and a big hug your way!

Jill said...

Beautiful! I wish I had seen this sooner, but I'm happy to read that he has recovered well and is back to himself so quickly. Big hugs to all you guys!

truly blessed said...

okay, joanna, you've got me cryin' over here. i'm sorry i missed this post. i'll still pray for you and your little man though. you just can't get enough prayer. ;)
your words touch me so deeply. i need to copy that poem and tuck it somewhere safe.
i'm so glad things went well yesterday. my thoughts and love are with you, sweet girl. always. xo

Amanda said...

I love reading all your posts Joanna. What a beautiful poem, exactly how I feel about Grant. The line about when he asks "Mommy, why?" really got me crying. I know he will ask that one day and I hope by then I have an answer. I wish I would have seen this sooner but I will be praying for all of you. Grant is still shunt free and we would appreciate your prayers at his next check up the neuro says we still don't need one. Lots of love and prayers to you all!

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