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“wow! look at how big he is getting! so, it looks like he’s out of the woods now!”

this is how a great majority of conversations about life with zion start these days. but once in awhile I hear via email/text/conversations in passing just how many people have been praying for zion’s ongoing health, people of whom I am to that point completely unaware. all I can say when I think about it is “oh, thank you, God!” because although life with zion is completely blessed and beautiful because of who he is, life is an ongoing, uphill climb with no end in sight. let me put it another way:

we are not out of the woods, zion is not out of the woods.

and it’s hard to say that, and it’s hard to try to explain to people who see him in person because he truly is the most beautiful creature I’ve ever laid eyes on and such a beautiful creature could not possibly be sick, brain damaged, constantly at risk of being in danger. but in so many ways, he is.

for those of you who may not know or remember the full story of what happened to him, and what is currently happening inside our lovely sons little body, let me do a brief recap:

* may 26, 2011, zion was born to a woman who did not know she was pregnant, started bleeding, called 911 and delivered him in the emergency room. he was almost 3 months premature, weighing 2 pounds, 6 ounces.

* a few days later, due to his small size and the trauma of life outside the womb, zion’s brain began to bleed in 2 different places – one was a grade 3 bleed, one was a grade 4. grade 4 is the most severe brain bleed possible, almost always causing serious long term damage, including a very high risk of cerebral palsy. we were told there was a possibility he may not survive the nicu, much less life in the next months or years.

* the hemorrhaging in his brain caused a condition called hydrocephalus to develop. this meant that there was excess spinal fluid in the ventricles in his brain, and no way for the excess fluid to escape, meaning that his ventricles grew to abnormally large sizes, pushing the brain out against the skull, and the skull out. in other words – water inside brain, not escaping, making brain stressed and under pressure, decreased normal functions, and head abnormally large.

hydrocephalus is easier to see than to explain, so let me show you what it looks like inside of our little sweeties head.

* there is no cure for hydrocephalus.

* the doctors temporarily treated his hydrocephalus by surgically implanting a reservoir that they would tap with a needle and draw out as much fluid as they could safely remove on a weekly basis. but this is only good for a short time, and not a long term solution, since there is a risk of infection each time the spinal fluid is tampered with from outside sources.

* the long term treatment for hydrocephalus is a shunt, a device that is surgically implanted into the head, and drains the fluid in the brain slowly and regularly over time, through a tube that is under the skin, running from the ventricles to the abdomen area, draining fluid into the belly, where it gets absorbed and digested out.

* when we got the call about him, he was almost one month old, a little over 3 pounds, and still too small for the shunt surgery. This is where our journey with him on this blog began, with frequent updates from our life with our little nicu angel, and weeks of bonding and caring for him as he grew. Upon release from the hospital, the surgeon was ready to do the surgery to put in a shunt, and looking back at it, we really should have listened and complied. But, we were still fairly uneducated about how hydrocephalus works, and zion seemed to be improving and functioning normally. We now know that even though it appeared that way, his brain was actually under a lot of stress and just trying to cope and work extra hard to make connections for ground lost due to his growing ventricles.

* a trip to Colorado last August pushed it all over the edge. we drove into colorado springs, and within an hour, something had happened, and the altitude mixed with the pressure of the ventricles on his sensitive brain tissue made his body shut down, and all of a sudden, he was not breathing. it’s all a horrible blur now, but there are some images from that next few hours that I cannot forget, images I see in my nightmares. like his lifeless limp, 6 pound body in my hands in the back seat of the car, as jeremy sped to the emergency room running every light and I tried what I had learned in my infant cpr class the day of his discharge from the hospital. we ran in, they took his body from me at the door, and for minutes that turned into hours, they resuscitated him, ran tests, did a spinal tap, and poked him with every needle they had. I’ve never seen so many people swarming in one medical room, and I’ve never heard a more hopeful and simultaneously more painful sound than his cries that night.

* a few days later, when he was strong enough to have the shunt surgery. the surgery went well, but it took him a lot longer than expected to be able to come off of the ventilator and breathe on his own. even that part was painful for us, because after him finally waking up from anesthesia and breathing his own, there was no respiratory therapist available to take him off of the ventilator, so he would cry, but there would be no sound, just tears. he finally came of the vent., and a couple of days later we were in a car driving home, thankful to have our little son and older two in the back seat.

* that brings us 8 months in the future to today. zion is a lively, insanely beautiful, growing, happy, perfect gift from God. and although he may look 1000% healthy, we have several doctors appointments each and every week, all with health professionals reminding us that our perfect gift from God carries scars, has a major physical setback, and that he has a shunt that 1. is guaranteed to fail at some point in the future and 2. will change the course of his life. There are babies his age that have gone through 8 shunt surgeries already, because shunts are just mechanisms that are guaranteed to fail at some point. There are also teenagers who are just now getting their second shunt. So, the reality is that at any moment, zion’s shunt could stop working and he could be in crisis. This also means that our little tank of a man is not going to be a linebacker someday, because he is not ever going to be able to play contact sports. I have to say that because perfect strangers seem to look at him, a well built, strong little black baby, and they latch onto this idea in their heads and proudly proclaim to us in random stores, “Oh man, look at him! he’s gonna be a linebacker someday!!!” Bless his heart. because even if he wanted to, it wouldn’t be a possibility. Stepping onto a football field would be a willing step to end up in surgery. As we watch him roll and get himself into sticky positions in the living room of our home, I am aware of just how much work we will do to be attempting to protect him from damaging his shunt as a toddler and rascally little boy. And those are the best case scenarios. We have no guarantees about his life or his mental capacities, no clear picture yet of the damage that was done when he had those two brain bleeds. And we continue to fight against sickness on a weekly basis, as his prematurity left his immune system weak, so he is perpetually sick with any and every respiratory virus.

I say this all not to perpetuate the hardship he has been through and the sadness we have felt as we watched him struggle, but to remember and honor it. I think we have been recognizing lately just how much we went through this past year with zion, and although we have been quick to celebrate the many joys and miracles we have witnessed, we have been quick to dismiss the hardship. and I think we are currently in a season of growing. A season of acknowledging all we have been through, all zion has been through, and learning that it’s really tough stuff. And as we acknowledge that tough stuff, we are able to release our fears to God, relax our grip on our hopes to control zion’s life and future, and to accept that through joy and through pain, we have a God who has promised us we will never be alone. And I’m currently learning how to make peace with that. It’s not easy, and each new day I learn that this God I follow holds all of the power to sustain or end the life of our youngest son. He is the king on the throne, the one in control, the lion who isn’t tame, but he’s good.

and so, we are living life here. zion is not “out of the woods” and will never be on this earth. so for now, we journey here, waiting expectantly for the day the pains we have endured become a distant memory with no sting, the day our little baby runs without fear of falling, and hydrocephalus no longer exists.

for now, this is our life in the woods.