Thursday, November 8, 2012

Down Syndrome Awareness month wrap up 2012

Forgive me for being a little late with my Down Syndrome Awareness month wrap up, but alas, I am a procrastinator extraordinaire. Another year, and another hospital cribside wrap-up. This time at Boston Children's Hospital waiting to get some specialized motility and hematologic testing done. Tomas goes under anesthesia this afternoon. His team of doctors is incredibly knowledgeable and have some ideas on what is going on with his blood and guts (sorry couldn't resist). None of the ideas are particularly good, but even having a thought about what could be happening is a step forward at this point. Because you can't fight monsters you can't see.

Many of you - most of you - know I am expecting. I am 7 months along. I have been to a gazillion appts already and get an ultrasound every month. I have had buckets of blood drawn, and so far so good. Everything is dead on normal. All labs and all measurements are coming back just perfect. When people ask me about the pregnancy and I tell them this, the inevitable response is something along the lines of, "Oh, good." or "What a relief!" But it feels so awkward to me, like a betrayal. Like even saying yes it is a good thing the baby is normal somehow belies that I think it is a bad thing that Tomas is not. My husband (or anyone else for that matter) doesn't agree with me. They think the last thing we need is another medically complex child. But all I keep thinking is no one would have EVER said I needed Tomas.

But I did. I needed his absolute helplessness so I could learn the value of living a sacrificial life. I needed the absolute lack of control that comes with never knowing how even the next hour will turn out, so I could learn to let go and savor this moment. I needed the maze and labyrinth that constitute the American medical system so I could learn patience. And dear sweet Jesus, I needed that smile. The one I watch him use, despite his sometimes very painful life, to set the people around him afire. I think about how I viewed the world before, and what has changed for me, and I think, "I needed him." There is a mercy and compassion and grace in me that did not come from the things we call normal. These gifts were opened to me because I needed them to be able to care for Tomas.

You want to know what real feminism is? Walk into your closest children's hospital and watch those mothers. Watch for a long time. You have never, ever, seen anything like it. Those women are forged of a strength built from the ashes of dreams and the agony of reality, and they are more powerful then I could ever have imagined one single person could be. And the truth is that strength is only a shadow of what lies in need next to that mom. That tiny sick person contains all the honor and power and glory that the God of all things could contain in a non divine vessel.

And my tiny sick person guided me to a place where struggle is a constant and heartache is a given. To this land of laying my mommy heart open, of choosing between fear and courage; to fight God or to trust God. So I know that this new daughter will be exactly what I need, what our family needs, no matter what wrapping she is sheathed in. Because that is what Down syndrome has taught me - to "Be not afraid."

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