In the past year (or two) I’ve learned a lot of new information, information that I never really knew that I’d ever know or need to know. Funny how life works that way. But one of the things I learned was that September is National Hydrocephalus Awareness month, so as I’ve grown in my knowledge of hydrocephalus with my Harper, I’ve given it a lot of consideration this month.
You see, I never knew anything about hydrocephalus before because it didn’t mean anything to me. It didn’t impact my life or the lives of those in my life, so I really didn’t even know what it meant. I remember being in the hospital at 37 weeks pregnant and the doctor telling us with tears in her eyes that our baby had fluid on her brain, and someone saying the word “hydrocephalus”… and I remember feeling dumb because I had no idea what that was or what that meant. However, the word quickly became a part of our vocabulary as we prepared to give birth to a little girl who would teach us so much about that word and about miracles and about faith and about strength… but even as we watched her being airlifted away from us, as we waited through one brain surgery after another and another, as we spent weeks upon weeks on the roller coaster ride of having an infant in intensive care, we still didn’t know the full impact of that original diagnosis. We didn’t realize that one issue could erupt into a barrage of other medical emergencies, that one condition would result in a long list of conditions. We also didn’t realize that a diagnosis of hydrocephalus carried a lifetime sentence.
Unfortunately, we had a lot to learn, and we are still learning. There is no cure for hydrocephalus. It is something our family will live with all of Harper’s life. Harper is one of the lucky ones (although we know luck has nothing to do with it- it’s all God!)… She does not yet have a permanent shunt, and her development is progressing beautifully. Her therapies have been decreased and she’s happy and active. Every day with her is a blessing. But, every so often, we are reminded that we are never really in the clear. Every time she bumps her head, those fears rush in. When she doesn’t eat as well, seems to fall more than usual, is unusually irritable, doesn’t sleep well, sleeps too much, acts strange in any way… alarms go off in our minds and we start watching her every move, looking for signs of increased pressure on her brain, looking for signals that we need to hit the road for a trip to Duke. Things that could easily be teething or normal childhood sickness cause us to worry and pace and pray, because they could also be signs of more serious issues in a child with Harper’s intense medical history.
It can be a scary way to live as a parent- always watching, knowing that brain issues are so tricky and you really just have to wait and see what the future holds. Embracing every victory and praising God for the blessings, and praying constantly that the good will continue, that you won’t have to visit those dark and scary places that the doctors warn you could come. Some days it can feel overwhelming… but God is good, His plans are for our good, and we find peace in knowing that we don’t have to know all the details or understand the why’s. This day we have, this moment we’re in, these blessings all around us right now- it’s all a gift. If nothing else, that’s what I’ve learned through this journey… to embrace this moment, to live it for Him, and to trust Him to handle the details of what may (or may not) come. My life is His, and Harper’s life is His, and that’s all I need to know.