Tuesday, September 13, 2011

When God says, "No"

I (Brandon) am writing the post tonight while Mandy sleeps :)

Many of you read Mandy's previous post sent this afternoon.  We were in the middle of moving from UNM to Presbyterian when she posted it.  Mandy asked for you to pray for Jude's transition to go well, for his incision not to begin leaking CSF again, for heart surgery to be scheduled soon and for a few other things.

We were excited and apprehensive about the move. It was a step forward in Jude's overall progress and care.  Being back at Presbyterian meant that Jude's first heart surgery could be just around the corner.  We were also apprehensive about the move back to Pres.  Jude began leaking CSF for the first time ten days after his craniectomy.  It had only been three days with no leaks at UNM this time and we were making the trip.

While the newborn transport team was taking Mandy and Jude from UNM to Pres, I was hurrying Jude's toys, some food, and a few other things from our room at UNM to our van.  During that time by myself, I was asking the Lord over and over again for Jude's incision to not leak.  Our cute little man is pretty fragile now and I knew that the trip could be hard for him even though it's less than a two mile drive from one hospital to the other.

I made it to Jude's new room at Pres before the transport team.  In a few moments Mandy, the transport team and Jude rolled in.  Our nurse asked us to go to the family waiting room while they transitioned Jude.

Within ten minutes a nurse came into the room to give us a quick update.  Curious about whether the CSF had leaked, we asked how his incision was doing.  It was hard to hear from her that, yes, his incision had leaked a significant amount of CSF.  The nurse continued to talk about other things related to Jude.  I eventually told her that we were having trouble hearing her because we were stuck on the fact that his CSF had leaked again.  We were stunned and just sat there praying off and on until another nurse came 20 minutes later to bring us to his room.

The rest of our evening consisted of:

1.  Finding out that his head was wrapped tightly again with Coban to stop leaking.
2.  Realizing that Jude looked puffier than when we left UNM.  He had actually gained another 1/5 pound of water weight during the transition.
3.  Meeting with a doctor to find out what our next options were.
4.  Jude getting another echocardiagram and an ultrasound for his abdomen.

During the rest of the evening I wrestled with the things we had asked of God that He did not give us, particularly the request of Jude's incision to not leak in the transition.  That was difficult.  It's always difficult when we ask for something specific and we do not get what we asked for.  What do we do when God says "No" to what we ask of Him?  And how do I respond this time?

What continued to come to mind for me was Jesus' prayer on the last night before he was killed.  Jesus pleaded with his Father to "take this cup (of judgment) from me".  He asked his Father three separate times to let it pass.  The request on Jesus' part of being allowed to escape his imminent suffering and death was followed by Jesus saying, "Yet not my will, but Your will be done."

Jesus wanted the will of his Father, which would lead to the salvation of many, more than release from his suffering and subsequent death.  Do I want the will of the Father, however heart-breaking and confusing it may be, more than anything else?  Do I want His plans more than my plans?  Can I say, "I will continue to ask You, Lord, for what I want but, more important than what I want, I will trust that You will choose to bring about what is best even if it doesn't make sense to me right now."  Even as I write this I am torn between my desires for Jude and submitting to my God who knows the end from the beginning.  I am realizing that when God says, "No", just as was true of Jesus, His "No" is never the end of the story.  He doesn't walk away but keeps saying, "Just wait on Me a little longer."

Father, help me trust You.  Help us all trust You.  Help us to plead with you for Jude's healing and at the same time plead for Your will to be done.  Teach us, Oh Lord.  We need You so desperately!

When we met with the doctor earlier this evening, we found that our journey may take an unexpected turn.  The challenge of Jude's neurological surgeons being at UNM and his cardiothoracic surgeon being at Pres have led the doctors to believe that having all the surgeons in the same building will be best for his future care.  The trips back and forth between hospitals have been hard on Jude's body as well.  Therefore, it's possible that Jude will be transferred to Denver Children's Hospital (or another hospital) in the near future.

We will most likely find out tomorrow if our insurance will allow for and pay for this transfer along with whether the neurosurgeons and cardiothoracic surgeons in Denver are willing to take Jude.

We'd love for you to pray for the following things...

1.  That we would be able to go to Denver.
2.  That Jude's swelling would decrease significantly.
3.  That our other little guy, Caleb, would have an incredible 5th birthday on Wednesday even though his mommy and daddy won't be there.
4.  That Mandy would feel deeply refreshed tomorrow.  I think she was asleep by 10pm!
5.  That, more than anything else, we would ask God for His will to be done.

Thank you so much for your incredible love shown to us.  We are amazed everyday that so many people are loving Jude and us through prayer.


Kellie said...

Brandon and Sleepy Mandy,
You're still in my prayers every day and night. Jude's picture is on my nightstand to remind me. If, Lord willing, the three of you come to Denver, there are people here to help meet your needs. My parents and grandparents read your blog daily (as do some non-Christian friends - thank you for being a light to them). And an hour away is definitely close enough for us to help you and bring some home-cooked meals. There's a Ronald McDonald House by the hospital too.

Laini said...

You guys are welcome to stay with us if you need to at any time, with any small amount of notice...as are any of your family, if you come to Denver. Praying for you all right now.

Holly said...

Yes, Lord, let your will be done... a powerful and transformational prayer for a parent's heart. I hope today brings rest to you both- not the rest of understanding, but of trust. We love you guys.

jojo1979 said...

We are praying along with tons of people around the world for you both and this little guy. May you continue to find your strength and comfort from the Lord during all the uncertanity that lies ahead. Also, my husband is pediactric pharmacist for Denver Children's hospital that works closely between the families and the doctors in the NICU. His wife and him have an amazing heart for God and are very plugged in to the hospital and area. If you need anything let me know and I get them contacted.

Steve Morgan said...

Hey Brandon. Thanks for the post. for sharing so vulnerably. I'll be praying for you two, your little man and Caleb. Much love to you all.

Jen said...

I have learned that "His will be done" is the only way to go but I can't say that is an easy thing to do. I just know when I force my way it usually has consequences I did not count on. I wish life wasn't so hard for all of you but you have such a great amount of faith I know you will come out of it stronger than most people could ever hope for.

Rachel said...

All we can say is that we love you guys so much. Praying for a day of sweet rest, moments of joy with each other and your little man, and hope.

-brian & rachel

Amanda Kerkhof said...

Brandon & Mandy,
We're continuing to pray for all of you! It looks like you have several Denver connections, but wanted you to know we still have a lot of family and friends there we could connect you with if you need anything. Much love, friends!

Ian Ray said...

Hi Brandon:

I know I don't respond regularly but want you to know I read your updates daily and pray for Jude, Mandy, and you. I sense a tremendous burden to pray for all of you (a good thing), especially as I see the pictures your have provided. I imagine Jude as my own son going through this. It brings tears to my eyes and a powerful groaning in my spirit that cries out go God for his help and strength for all of you- whatever that may entail. I am so grateful that we serve a God who is sovereign, omniscient, and loving. Even when life is hard, with HIM in control, how can we lose? With love from the Ray family to you. Ian Ray

Bethany said...

Praying for you! We will continue to ask for Jude's health and a trip to Denver as well as God's will for your little guy.

Megan said...

"Remember the former things long past, for I am God, and there is no other; I am God, and there is no one like Me, declaring the end from the beginning, and from ancient times things which have not been done, saying, "My purpose will be established, and I will accomplish all My good pleasure"; calling a bird of prey from the east, the man of My purpose from a far country. Truly I have spoken; truly I will bring it to pass. I have planned it, surely I will do it. " (Isaiah 46:9-11).... Praying for you all! Megan

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