Surgery Time

So we survived 6 hours of  testing today.  We are exhausted from the rigor of institutional hospital.  There is no doubt they are REALLY good at what they do and we are very thankful, but it's still a hard road to work through each step.   Jadelyn's surgery is scheduled to start between 7:30 and 8 am.  This means we have to be at the hospital by 6.  That's a really early morning, but we are also thankful because that means much less of a wait without being able to eat or drink.  
Thank you all for your prayers.  It feels a bit like going through an emotional rock crusher.  The "this is everything that could possibly go wrong" talk was awful.  And then one minute later my beautiful little girl is singing "I've got the joy, joy, joy, joy down in my heart....and I'm so happy, so really happy, I've got the love of Jesus in my heart."  His grace is enough.....

Hospital Visitation

We are so very grateful for the love and support we have received and please know that we will carry it in our hearts as we head to CHOP.  

CHOP has a limited visitation policy due to flu season.  I'll post a link to their policy here:
http://www.chop.edu/patients-and-visitors/limited-visitor-policy

While hospital visits aren't going to be a good option, you CAN visit us through text, phone, facebook, & email......and this blog.  =)

Thanks again!
Aaron and Danae

Overwhelmed....

How do you ever begin to prepare for your daughter's heart surgery?  We begin with prayer.  Prayer for her healing, prayer for her doctors and surgeons, and prayer for our peace in the journey.  Then we asked our church and families to pray along with us.  Now we are just 48 hours away and are praying time slows down and passes quickly.  

Yesterday our church blessed us with a huge care package.  We can never begin to say thank you enough for all the cards, snacks, books, stufties, games, and STICKERS!  Yes, Jadelyn loves stickers! =)  It is an overwhelming encouragement as we prepare for the days where time passes slowly to know that there are so many people praying and standing in the gap for us.  We admit we are physically and emotionally stretched already, but we are doing ok.  God is faithful and He has brought us this far and will carry us through to the completion of His plan for His honor and glory.  It has always been His story. 

Thank you all again for your prayers and gifts of encouragement.  We carry all of you in our hearts.  

We don't know Jadelyn's exact surgery time yet.  We will find out tomorrow (Tuesday the 31st) before 5pm.  We will attempt to post around then and let you know a more exact schedule.  

We have heard many songs and stories of encouragement.  Today, we are trying to let go of our desire for control and let the God of the universe hold our hearts.

https://www.youtube.com/watch?v=tIZitK6_IMQ

The Weight

People keep asking how we are doing.  I keep telling them for the most part ok.  I'm not worried but there is a weight to knowing your daughter is scheduled for open heart surgery.  The following I wrote today to try to express a little bit what that is like.

The Weight

It’s never very far away…always lingering, loitering, lurking.  The smiles and laughter make a stoic attempt at framing a lighter, airier canvas but in the end, the jocular is replaced by the mundane and the weight returns.  This masquerade is just that, a melted plastic façade required by a world that flaunts faux normalcy.  The hardest part of carrying the weight is that I would actually trade the realness of it for that falseness, just to be rid of its omnipresence.  But I can’t.  I can lay it down, I can forcibly move my mind into other orbits and even allow myself to be pulled into other gravitational domains, but like a fettered ball and chain, the weight follows and will eventually dominate again with its unending heaviness.  I am tethered to it. Leashed.  Tied.  Sometimes I feel it will crush me, at others, I think I might be able to stand. 

I am simply trying to survive.

It comes at the worst times, when I am least prepared and people see it in my distant eyes and they ask “are you ok?”  I realize I dropped my mask.  “I’m fine” restores the comfortable expected for them, but I’m left with the weight.  In a private moment, I will let you see the weight.  It comes in tears.  It’s not pretty.  It isn’t what should be, but it is what is. 

How does a finite mind with an infinite soul cope with a forced contact with the eternal hope at the cost of immortality?

That is the weight.  What if the mortal must be replaced by the eternal?  What if the finite must be replaced by eternity?  That is the weight.  It is not worry, it is not fear.  It is the reality that what we hope for may come before we hoped for it.

It is knowing that hope is only necessary because of pain.

There is a comfort; a time where the weight is not forgotten but is allowed to be set aside, a place for the weary to find rest.  And when I rise from the place, the yoke fits well, it is balanced.  His burden does not add to the weight.  And when closeness allows you to see the weight don’t despair.  No, you can’t make it less and you can’t carry even the smallest fraction for me, but you can add to my strength, you can help me stand and walk forward.  You can hold my hand, whisper in my ear and remind me of hope.  Don’t try to explain the weight away.  I will see your falseness.  Don’t try to minimize the weight’s significance.  I will know it’s a lie. 

The weight is real regardless of your denial or lack of understanding.

Accept it with me, help me endure.  Bring me back to the place of rest, if only for a moment. 

Written by Aaron on Jan. 4, 2017

I'll close with the chorus to a Bebo Norman song:

Dream a little, dream for me, in hopes that I'll remain.

Cry a little, cry for me, so I can bear the pain.

Hurt a little, Hurt for me, my future is untold.

But my dreams are not the issue here, for they, the hammer holds.

The path before me seems unclear, but it, my Maker holds.