I've never been so weighed down with information! Too much! And it's only a fraction of what's available to me. However, I've decided to live by the mantra "Grace in Ignorance", so to speak. I don't need to know everything, or every possibility. Let's just function at the "need to know" level. That said, on Tuesday we met with Judah's new pediatric neurosurgeon Dr. Puccioni, and then saw Dr. Bonebrake. It was good to meet with Dr. P., and actually encouraging. Technically, Judah has Hydrocephalus - dilation of the ventricles due to excess fluid - which they believe is being caused by Aqueductal Stenosis - the absence of the little hole in the brain to allow fluid to drain out of the brain. Dr. P. believes the presumed diagnosis of A.S. to be "reasonable", and also said that is the easiest cause of Hydrocephalus to treat. And speaking of treatment... he also said that a lot of kids born with this disease (A.S.) don't require immediate treatment - YAY! If Judah remains stable until birth, (which the ultrasound with Dr. B. showed is still the case) and after, Dr. P. will just monitor him on a regular basis, starting with exams every couple of weeks, and eventually working our way to once a year. Of course, that also includes an MRI on my tiny boy after birth. Sheesh. But that was the encouraging news. And that's obviously what we're praying for - that Judah's ventricles will remain stable, with no sudden increases of fluid. Should a sudden increase occur between now and my next ultrasound on the 11th, then Judah will most likely be delivered at 35 weeks and have a shunt put in right away. If he's o.k. until birth, but then has an increase after delivery, the shunt will probably be necessary then. I never knew exactly what a shunt was, just something they inserted into the brain to drain the fluid. It's much worse. It's a small tube inserted into the brain and then run all the way down to the abdomen where the fluid drains...and it's all under the skin. Then, the shunt will malfunction at some point - they always do, says Dr. P. - and you just hope that it doesn't happen until close to 1 yr. or after so Dr. P. can do a surgical procedure (an EVT) to create a hole in the brain for the fluid to drain on its own. I'm choosing not to dwell on the shunt possibility at this point because it scares me and makes me want to cry for Judah. The shunt is a necessary evil, but we know that Dr. P. will do his best to avoid it, and only insert one if absolutely necessary!!! I don't know what God's plan is here. I don't know what will happen. I'm still enjoying Judah every day - growing rounder by the minute it seems - and really just trying to keep my focus on Christ. But it's hard. It's tempting to start looking ahead to the next few weeks and start worrying about and fearing what might be. This is my precious, beautiful little boy, and he has such a long road ahead of him...and he hasn't even started living life yet! He's starting as an underdog! I guess this is the part where I cling to the truths that God loves Judah more than I do; He's writing Judah's beautiful story, not me; He is in control and will not abandon us, but will walk with us and hold us up every step of the way; His plan for Judah is perfect, whatever it includes; and God will do what He knows is best to draw Judah to Himself into a deep, intimate relationship with Him, because He loves and desires Judah passionately. Of course I can say all these things for myself, too. Still, I find myself wishing at the moment that this was someone else's journey. I would never trade Judah for anything, but my flesh wants to bypass all of this heartache and take the easy road. The one that doesn't involve doctor appts. for cleft lip, dilated ventricles, extra fingers, and possible syndromes. Now that I think about it, though, what good is the easy road? It leads to comfort, self-sufficiency, independence, and a pleasant life. I know, that sounds good. But the life that God has chosen for me is one on a road with lots of twists and turns, ditches and potholes. And why would I choose to follow Him on this road? Because it leads to discomfort, dependence, unpleasantness, and the awareness of my total need for Christ. It also just happens to lead to richer blessings, deeper intimacy with Christ, a fuller more meaningful life, and the great appeal of Heaven waiting for me. And that is good.
"A pleasant life is not water for my soul; whatever comes from God - whoever God is - this is the only true water. And it is enough." -Larry Crabb
"Oh! His grace and goodness toward us is so immeasurably great, that without great assaults and trials it cannot be understood." -Martin Luther
"The happiness He provides now is the strange happiness of longing for what we were designed to experience but must wait to fully enjoy. It's the happiness of serving a God we trust enough to let us cry today, knowing He has promised to wipe our eyes tomorrow." -Larry Crabb
"When a train goes through a tunnel and it gets dark, you don't throw away your ticket and jump off. You sit still and trust the engineer." -Corrie Ten Boom
"We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." -C.S. Lewis
"We cannot count on God to arrange what happens in our lives in ways that will make us feel good. We can count on God to patiently remove all the obstacles to our enjoyment of Him." -Larry Crabb
...beautiful!
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