Grieving the loss of the Perfect Child

I'm reposting Megan's latest blog entry below. It's a good assessment of what's happening with us. Today is the first day since this all began that we haven't noticed any seizures. But, I can say that I haven't been watching very closely as constant vigilance is exhausting. We've hit the maximum dose of medicine allowed for Ella. So, we hope that it does the trick....

In the spring of 2004, I spent six weeks in maternal and newborn nursing. I did not have children of my own at the time and would not be pregnant with Jackson until that summer. In clinicals (hands-on experience in the hospital), I got to witness the miracle of birth and hold itty bitty babies in their early hours of life. It was an exciting, baby-fever-inducing season.

In addition to our hospital hours, we also spent time in the classroom. One lecture stands out to me above all the others, even five years later. During one tearful morning, our instructor guided us through a discussion about providing care and support to families in perinatal loss and the birth of special needs children. We talked about the grieving process in miscarriage and stillbirth, but then she said something that floored me; it was something along the lines of: "Additionally, when a child is born alive but with birth defects or chronic health problems, the family often needs to grieve the loss of the Perfect Child."

Whoa.

Being healthy myself, I assumed, as many women do, that I would have uneventful pregnancies and healthy babies. It never occurred to me to think otherwise. Intellectually, I knew that these things happen and that no one is immune, but no sense in being all doom and gloom, right? And besides, pregnant women have a tendency to be a bit on the paranoid side anyway, so why try to prepare oneself for such eventualities that statistically do not happen all too often (thankfully).

Even when--during my very first shift as an RN, while pregnant with Jackson--three out of my four pediatric patients had significant birth defects, I did not linger too long on the what-would-I-do-if's.

And fortunately, all three of my babies were born healthy. I counted fingers and toes, watched them take breath after breath, and felt peace in knowing that they were okay. Therefore I thought (assumed is a better word) that we were out of the woods on this one.

Fast forward to now. Where I'm trying to wrap my brain around this new reality we find ourselves in. The one where our baby girl has seizures and needs medicines and all manner of tests and such. In digging into why I have been tearful the last few days about all this, I am realizing that it is because I am indeed in this process of grieving (the loss of) the perfect child.

Now, please don't misunderstand me. I am not saying this perfect-child-ness is lost forever. I do not know what the future holds for Ella. I have no idea if this is a disorder that she will grow out of with no lasting effects or on the opposite side of the spectrum if she will be profoundly handicapped by it. I DO know that the latter is certainly possible. And that makes me sad.

Regardless of the outcome, however, I know that God has not forsaken my daughter. I know that I love her as much as I ever did, and that He loves her more than I ever could. By His grace, we will walk this road for as long as it is necessary, and we will continue to praise Him in the journey.