Sooner or later, anyone with a special needs child is going to hear or see that short essay called Welcome to Holland. I’m not going to share it here, you can google it and find it easily enough. I suggest you read it, if you haven’t already, before you continue reading this entry.
I am certain that the original writer of the essay intended to create a few paragraphs of encouragement, a little validation that Yes, this is different, but Yes, this can be good, even great. And I appreciate that. I recognize the positive intent, of both the writer and fans of the essay, even if I think it’s all wrong.
Here’s the thing. Having a baby with surprising and severe differences is not like planning a vacation to one place and ending up in another. Because, people? I still live with all of you. I see you and your fully-limbed babies. I see you looking at my limb-different one. I don’t get to remain in a bubble of differences.
When Ulysses was very new, within his first week, I remember wishing desperately that I could spirit my whole family away to a remote location. I wanted to remove ourselves from everyone and everything and just love my baby so much nothing else would matter. I wanted to protect that tiny boy from ever being sedated and scalpeled. I wanted to be where I could keep him safe. It was hard to imagine, that newly postpartum, what life would look like with a special needs child. It’s getting easier. Ulysses has become a quick-to-smile crinkley-eyed sprite of a boy. He is such a wonderful baby, such a good sleeper, such an easy nurser, just so dear, that I wish I could have ten more after him. Ok, maybe not ten. But a few, yes! I wish. It’s hard not to be in love with everything when that baby is on my hip. He is that sweet.
And I feel such overwhelming love, so big and complete, when we’re home, when we’re isolated and I can be in control of my world. And it’s here, in this house, where that Holland analogy makes sense. When I change his diaper and I struggle, every time, to clean him adequately because his crooked feet twist into the way, I don’t even care, because he’s blowing raspberries and laughing at my singing and I am in Holland and everything is fine.
But when we leave these safe walls, that overshared essay falls apart, makes no sense anymore. Because when we leave, I have to take this boy, who isn’t any less wonderful to me, out among people who don’t understand. I have to be his ambassador to the world. And it’s not our safe world, the remote island I’ve made of our home. It’s the world where people say ignorant things, where people stare and whisper. So it’s not at all like planning a vacation to one destination and arriving unexpectedly in another. It’s like living in two different places, and hoping desperately when you go from one to the other, someone there will be able to speak your language, fluently or not.
Ulysses is very nearly six months old now! (wow!) It’s been the hardest six months of my life, in the discovery and the anticipation and the near-breakdown in the hospital after his birth, his open heart surgery, and in learning so much. Soon I will write a proper baby update post, full of proud mama bragging and pictures and such, but right now, I just want you know to how glad I am to be past this first half year.