For those of you who don't know (which I think is none of you, but just to be safe, I'll say it again), my twins were born at 25-weeks. This, understandably, caused a host of problems and agony. My daughter remains in a care-facility, coping with a host of problems that include a tracheostomy, ventilator-dependent breathing, feeding only via a gastric tube, untold neurological disruptions, wonky vision and hearing loss, to name the problems we know of.
My little girl, though? She's a fighter. A champ at that. And thank god for it. Because, I think at the end of the day, she may be the strongest of us all.
Yesterday, as Katie went to her crib, she noticed that the baby was blue and her tongue was swelling out of her mouth. None of the various monitors were alarming. But Boo didn't look right. Katie literally ran to get the respiratory therapist and the nurse to come immediately. They worked on the baby, getting her a new trache and making sure oxygen was getting forced in. And she recovered nicely, to fuss and crank and smile at us, though I think I aged a few years.
This isn't par for the course. It's a blip.
Before any one comments, though, let me tell you what often pushes me over the edge. Today, a sort-of boss said to me, "Boo was given to you because you're a special family that can handle it." Really? I call bullshit. I call bullshit when people tell me that they admire how strong I am to be going through this. I didn't choose this. I didn't say, "I'm a strong person, give me a child who has extreme and special needs because I can handle it."
I don't go to work to prove how strong I am. I go to work because it keeps paying for the insurance for Boo and Little Man, because it keeps a roof over my head, because it lets me buy groceries and rattles and cute clothes from Gymboree. When I'm at work, I don't assist teachers because I'm strong. I do it because if I stop doing it, I'll lose my job with those benefits. So, please, for god's sake, don't ask me, "How do you do it?" because the answer is, I don't have a choice. I do it because this is what life is: getting up each day and living.
In fact, I think people with healthy children give me the "you're so strong" line, that they are hoping it's a talisman, because the implication is that thank god I have the sick baby since I'm so strong and they don't because they couldn't do it. Maybe if they say it, it won't happen to them.
I am hard pressed to believe that the whatever-godhead looked down on my family and said, "There's a family for this special baby." This is perhaps why I am not really down with the judeo-christian world. The truth of the matter is that if I could make it so Boo breathed on her own, was excited about eating and had a belly of steel, I would. If I had to bargain with that same godhead to get them to go along with it (and if I believed it would matter) I totally would.
Instead, I'm in more of a Tantric place. I think, THIS is where we are today. THIS is what Boo is doing today. And while this is not a "happy" thing, to wish for things to be different, to spend all of my time trying to live in a space of expectancy of what might be actually makes me miserable. To think that we're going through this as a punishment for transgressions or as a blessing because of our strength is equally ludicrous.
So, instead, each day is its own gift and blessing. Boo came to us not because we're strong, but because she did. In turn, her existence teaches us to attend to the beauty of each moment, difficult or not, because this moment, the one we are living right now, is all we've got, even in its imperfections.
Sorry. This is a bit rambly, but I've been thinking about it for a while and I was pinged yesterday.