At least that is what we are being told, the shunt is inevitable, it is coming. One of our favorite nurses told us that is how we need to look at this, and we are. But she also said, short of a miracle, Sara is getting a shunt. And there you have it - short of a miracle – that’s why we pray. We follow and love a God who has revealed Himself through the living Word (Jesus Christ) and the written Word (The Bible) to be a God who transcends the physical universe. He isn’t limited by time, weather, circumstance, or the decrees of man. Jesus continually did miracles in part to reveal that He is God and he did things only God could do. Apparently only God will keep Sara from getting a shunt. And that’s why we pray and ask you to do the same.
Of course, Sara does have hydrocephalus. Look back at historical pictures of children born with “water on the brain” as it was called. It’s not pretty. Thank the Lord he has given man the creative ability to come up with a device called a shunt. Without it Sara may have no chance at normality, or even life. And so this shunt may be the best thing in the world for her – why pray that it doesn’t happen?
I was holding Sara Friday night while Jennifer was in another room pumping, and just looking into her face. Amazed at the beauty and perfection of a baby. All you parents know what I’m talking about. And I was thinking – why did God allow her life to be like this? What do we say when she is 3 or 4 and notices this strange tubing under the skin of her head? Or when she gets a little older and notices she is the only one of her friends with this strange device. What do we say when she has to go have a surgery to have it lengthened or adjusted? Or when she can’t play contact sports to protect this device, that she didn’t ask for, from getting broken. What about later in life, Lord willing, she has children and she has to explain to her children why mommy has to go in the hospital for a procedure? This is why we pray for God to do a miracle – for her sake not ours. Who as a mom or dad wouldn't pray for that?
Based on what is going on in her head, it really would be a miracle if all of that resolved itself and she didn’t need a shunt. And that is why we pray. What if God thought he could best display Himself, His glory through this situation by allowing Sara to avoid the shunt? What if? Or what if God says no? And she gets the shunt. How do you live with this tension?
Well, you recognize God is sovereign over everything. You kind of get that inherently when you create everything from nothing. He is not a genie in a bottle and if we rub the lamp, say the right words, believe enough – PRESTO! we get our wish. That is not a sovereign God, but a servant of man. The early church prayed fervently for Peter to be released from prison in Acts 12. And guess what – an angel came in the night and miraculously rescued him. But history tells us he was later arrested and martyred. Couldn’t we assume the church prayed then as well? But God’s answer was different.
And so we pray believing God can do anything. And He may just decide to do a miracle. He may just decide He could be best seen through that. Or, He may decide that He could be best seen through Sara receiving a shunt, living with it, and being a continual witness for Him living each day by his sustaining grace. We pray because the Lord has not given the final word on this matter. And believe me – it is His word that is final. And believe me – Jennifer and I are content in both answers.
I was reminded of Esther this morning. When she was going to see the king to intercede for the life of her people, the Jews. She could be killed just for showing up in the throne room unannounced. Or she could be received and help her people. Her final words to her uncle Mordecai– “if I perish, I perish” She was ok with whatever God chose as the outcome.
If the shunt is to be, then it is to be. We can live that life. But what if God is putting the pieces in place to show up in a mighty, mighty way. We’re ready for that also. Thanks for listening and praying with us.
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A great post...thank you for sharing and I pray that God will continue to do miracles in Sara's life.
ReplyDeleteYou are such an inspiration!! You really help people understand that being a Christian doesn't mean everything will go the way you want it to- the way you pray for it to go - but God is still there in every little detail. We are praying for that miracle!!
ReplyDeleteOriginally sent to your blog by Catherine Asher, I've been checking on y'all throughout your journey. Life gets busy, and I've been meaning to post about the shunt, and I've now found the time... at 2 a.m! Don't expect eloquence, but I hope I can provide encouragement.
ReplyDeleteMy son Hank had a Grade 3 IVH - born at 25wks6d (along with his twin sister, who had a Grade 1) weighing only 1-12. He had hydrocephalus that was monitored by a neurosurgeon for one year before we got a shunt. Because he was monitored so closely by drs and by us parents, his head never swelled and no one on the outside could tell what was going on inside his pretty little head. A week after turning a year old, his neurosurgeon decided that we really needed to go ahead with the shunt. The surgery went off without a hitch, and 4 years later (Hank is 5 now) you would never know it! You can't see the small bump under his hair at all, and the tube that runs under his skin simply looks like a vein in his neck. No one even notices it - and we don't either anymore! He has a scar on his belly that is now about an inch or inch and a half long, right near his belly button.
Brain surgery is a huge deal, and I certainly don't mean to minimize it. But it will be so beneficial to sweet Sara Rose - Hank's development TOOK OFF after we got the shunt. He was a new child!
I feel sure that Sara's shunt will soon be a distant memory. We don't even think about Hank's at all. In fact, the only time we think about it is when we're filling out a form that asks for 'previous surgeries' or 'medical conditions'. And in the 4 1/2 years that he's had it - he's never had to have a revision. And his neurosurgeon says that he has plenty of tubing coiled up in his abdomen to adapt to his growth. He even says that he can play any sport he wants - except for boxing - and who really wants their kid to box anyway???? He's a rough and tumble boy, constantly banging his head on something (got stitches in his forehead on his 3rd bday), and we've honestly had no issues with the shunt. It's like it isn't even there!
Please visit my blog harrisoncrew.blogspot.com and go back to January 2005 to read my posts about Hank's surgery. Also, my links on my blogspot are broken (horrible, I know), but you can see pics of Hank's shunt incision at the time of his surgery at http://harrisoncrew.shutterfly.com/399 You'll have to scroll through a bunch of other pics to get to the shunt ones (they start at #147), but I think it might help ease your fears when you see just how small the incisions and bump are. Also, you can see updated pics of Hank (and Hayden - can't leave her out!) at picasaweb.google.com/harrisoncrew or friend me on Facebook (Sally Foreman Harrison). I'm going to try to take some pictures of his belly scar and shunt bump this week and post somewhere for y'all to see.
Sorry for the rambling nature of this email. I just wanted to hopefully offer some insight and encouragement. If you have any questions about anything (or want me to leave you alone ;-) ), please feel free to email me at sallyfharrison at gmail.
Continuing to pray!