We are not alone

I have had too much to say and not enough words. So first, let me encourage you to click on any of the pics I loaded in the last update so you can get a larger image. The one of Ahn is representative of her nature. Exuberant and joyful. Peace embodied. And let me say, that her joyousness is infectious.

I had a friend say that after a medically fragile child, the typical child can heal your heart. I was foolish and too contrarian to agree at first. I guess I expected a choir of angels to burst from the heavens with a "You're Healed" certificate the day I gave birth, and when that didn't happen, I doubted. But, even with my imperfect faith, I did believe that the clouds would part, eventually. Today, after almost as much time as it takes to earn a bachelor's degree, I am proud, stunned and grateful to say that my brain has resumed functioning.

I want to point out, at the risk of sounding overly self-conscious, that these essays of self-reflection serve a purpose beyond narcissistic navel-gazing. I want to communicate that living with, surviving and thriving with a medically fragile child has its pitfalls beyond the physical threat it represents. It is a threat to every marriage, friendship and family of origin. It should not be understated the tremendous impact a medically fragile and chronically ill baby often has on families, individuals, and the parents' families of origin (ie my family and Jose's). I have had friends and family commend us for beating the odds, but most often it is those individuals who have witnessed our fight, who have also buttressed us in our greatest need. We did not walk this path alone.

For me, I came to realize that there were relationships and people I needed, I craved, I longed for, that had never been and would not now materialize. That the perfect words from the perfect people would never be realized in this life. But that the imperfect world, the one I did not find enough comfort from, was the only one I looked to. And like the rain, it comes slowly and seemingly from an unimaginable height. And even though it does not come from where you hope, or seek or expect, you do get exactly what you need to fight another day.

I cried all the way home, listening to the radio, where the author of a book talked about this thing he invented and wrote about as a response to his cancer in the face of his recent parenthood to twins. He formed a Council of Dads as a safety net, in case he wasn't there to raise his twins. And I thought, what about me? Where is my council of children, in case my son isn't there anymore for me to parent? I prayed and coveted more and more babies during that first year of Bo's life. But the reality I came to understand was that even if I converted to become a Quiverfull mother, there would be no council great enough to absorb the tsunami of grief that threatened to drown my essential being.

And even though my parents will never be the parents I hoped they would be, and I will never be the child they imagined I would be, I am satisfied that my love for them is great enough to supplement my shortcomings, as I know that the roar of their love is more than enough to drown out theirs.

God is with us, in the form of our family, our friends, our steadfast hearts. Burning the midnight oil for far longer than eight nights. The reality of this magic outlasts our own doubt, our own fear, our own terror.