This is the Day

There is finally an answer to the ultimate question we’ve all asked for years: today.

Today is the day Cyrus’s button, that fucking port in his stomach where the feeding tube has been hooked up thousands of times, is coming out. Fuck. I’ll even do some math. The tube was inserted about 6 times a day for nearly 8 years…2,735 times is a conservative estimate. For more than two years, the first two of his life, he had to be hooked up to a pump for a better part of the day. Then came the bolus feeds. Then came those times when he’d be out of the house for more than a couple of hours and someone would’ve forgotten the tube. There would be a trip back to the house to retrieve it.

His life revolved around that goddamn tube. If the button broke, which it did many times, he couldn’t eat until it was reinserted, either at home or at a hospital. There were times it fell out and the hole closed and had to be re stretched. There were times when the tube that connected to the button would break. There were so many fucking times that he’d cough in the middle of a feeding and milky liquid would fly everywhere. My house smelled like the sweet rottenness of dairy, soaked into the carpets, the couches, the beds, the sheets, his clothes. There were times when I forgot to feed him.

It was hard to find a babysitter; the tube is a scary thing. He had to go to a particular preschool because they were willing to tube him while others didn’t have the insurance coverage for it. My dad has never tubed him. Very few of you have ever done it. He had to have a doctor’s note in order for the nurse at his school to give him water. Tap water. A doctor’s note. He needed a doctor’s note when he required more tube food in the day. In order for the school to feed him, a doctor had to say so. A doctor has controlled most of his food intake: how much, when, what, how. Until Gaby came, made a nutritious, real smoothie. Of course, I had the instinct to ask the doctor, anyone in a white coat, if it was okay. I had to ask if it was okay to feed my kid. I had to relearn that part of myself.

As I wrote a bit earlier, he has gone without a full day’s feeding since October 1st. It was that time that he was given a tube, secretly, while he was sleeping. When his button broke on November 27th, that seemed a sign that it was time. He hasn’t used the button since.

His eighth birthday is in 15 days. He got the tube in July of 2010. That’s a lot of years for everyone to have to deal with that thing.

He is really excited.

It feels impossible to tell you how ecstatic I am about this. Today is the shedding of the last layer of weighted sadness I still wear from the NICU. The final symbol of all that pain, all of those muddy days of mere existence.

Since he was born, people have said eventually he’d outgrow all of his preemie problems. I was naive to think that they meant “soon.” I suppose in the span of his life, 8 years isn’t a long time to deal with all that’s been thrown at him. For me, though, that’s been the first 8 years of my parenting experience. Doctors, therapists, surgeries. That’s all I’ve known. That’s all he’s known. That’s all you’ve known of him, too.

That’s not even 1/100th of who he his.

If you see me this week and I’m staring into space, I promise I am not sad. If you see me crying, I’m not sad. If you see me drinking too much, I am not sad. I’m light and airy. I am made of sunshine.

The grass is turning green. The buds are forming. The birds are singing. Cyrus’s long winter is over.

The long days of sunshine that pull life from under the dark soil are finally here.

 

 

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