Saturday, March 21, 2015

Make a Wish

Well, it's 4:44 in the morning. I've been awake for two hours. You see, when I'm stressed out, I tend to wake up around three. Since starting my latest job, the anxiety that I worked so hard to kill is starting to form a hard, skittery lump in my chest again. So, these dreams I have are always fearful: a tornado is threatening to blow my house off its foundation. I'm naked and late for some presentation. My car is careening down a steep embankment. I can't find Cyrus. I wake up with my heart pounding. To soothe myself, I count all the things I've done wrong in my life. Chastise myself for bad decisions. Count all the money I don't have. You know how it goes.

Luckily, I know exactly where Cyrus is; he's asleep in my bed. And I'm covered in a Ninja Turtle bed set because it was the most remote place to come where the light wouldn't bother him.

Besides all of the above mentioned things that have all the gears cranking in my head, today is Cyrus' birthday. He's 5. Five fucking years old.

In those five years, I know both he and I have aged incredibly. He's already the wisest person I know. And I'm very serious when I tell you that I go to him for honest, unfiltered advice. He is my spiritual guide.

You all know the things he's endured: living in a plastic cube while being kept alive by machines, surgeries, and seizures. The one year of house arrest when you wanted to meet him but were told you couldn't because of his immune system. (It took us another year to realize that the three of us could all leave the house at the same time.) His average of 5 appointments a week with doctors and therapists. The feeding pump that we once wheeled around the house. The little button still in his stomach. That fucking seizure just last week. And the newest addition, besides the eye-patch he wears for four hours a day (maybe you didn't know about that) is the brace we'll have to put his leg in at night to stretch his muscles. For at least six months.

Of all of those things, what he hates most is a blood pressure cuff.

I strive to be like him.

This is parenthood as I know it. It's a mix of medical knowledge, love, and whiskey.

Just last week when we were in the hospital, the ER doctor, who had some deep, booming voice and an east coast accent, told Mindy and me that he and his wife had a 27 weeker, so he understood. It was all I could to do to keep from throwing myself into his arms. Here was a doctor and a preemie parent. Here was someone who understood everything. And the way he treated us, like we were people. Like intelligent people. It was so new and wonderful. And he said to us, "I know what you've been through, and I know you're more sophisticated than other parents, that you know your child better than I, so I'm going to tell you something I wouldn't tell other parents..."  It's a fucked up little club I never knew existed or wanted wanted to be a part of, but to be recognized like that--well, it's like winning a goddamn award.

A social worker visited Cyrus and me last week to update the "home study."  Mindy and I started this part of the adoption when we were still together. She was nice, but asked a lot of personal questions. Like why we are no longer together. If Cyrus saw us fight (no. never. because we never fought). How our relationship is now. You probably wonder that, too. It's good. We're friends. We're amazing co-parents. From the outside, I hear, it seems very intimate still. Well, look at all we've shared. Such joys. Such sadness. How many other separated parents have to make a couple of medical decisions nearly every week?

We have to do one more home study on March 30th. The social worker said it was to see if Mindy and I really did get along. Then, in six months, I can apply to adopt him. I mean. I can start the process in six months. Who know when it will end.


Mindy, Cyrus, and I are going to have a birthday breakfast together. We're going out, but right now I'm worried. All of the thoughts of five years ago today will come back. We'll lose it right in the middle of the restaurant. We'll just weep for all that we've been through. All that the three of us are still recovering from.

Wednesday, March 11, 2015

Five Years. What a Surprise.

We're preparing for Cyrus' 5th birthday. Yes. It's been five years since we all started this journey.
So far, he's gotten a Ninja Turtle bike, a knight costume (with gauntlets, which he asked for specifically), super awesome knight books, and a trailer he can sit in while I pull him with my bike. He's really obsessed with knights. "Mom, do knights ice skate?" "Do knights wear armor?" "Is armor heavy?" "Can knights not ice skate because of the metal armor?"  "Mom, am I being curious?"

Some updates for you:

He still gets most calories through his feeding tube. No. We don't know how long he'll need it.

He still has at least three appointments a week: Speech Therapy (to help with eating), Physical Therapy, and Occupational Therapy. He also does adapted gymnastics once a week. And pretty soon, he'll have horse therapy again. That's five a week. Five a appointments to help him develop. To be normal. Since he can walk, talk, and take himself to the bathroom, these things have gotten a lot easier for us to handle. We still forget, though, that most parents and kids don't go through this routine every week.

Today Mindy took him to another one of his many dates. He went to see the...well, I'm not sure of her title, but she's the one who fit the helmet he wore, the leg braces he wore, and the insoles he currently has.  Well, basically she said she can't help us anymore. Cyrus needs to have Botox shots in his legs to help him loosen up. OR he can wear splints at night that stretch his legs. OR he can wear a cast for five days, have it removed for two, then put back on again for another five.

The truth is, he walks and runs funny. We forget so easily because we're still amazed that he can walk (after being told he probably never would). Every day we're in awe of how much our son has grown. And then every so often we're reminded he doesn't look like other kids.

I kiss you, you're beautiful, I want you to walk. 

Tomorrow he has to get some vaccines so he can start kindergarten. Tomorrow night he registers for kindergarten. Kindergarten. We weren't sure if he'd be ready. When I got the call a month ago that he no longer needed Special Education, I cried. And cried. And told all of my co-workers who barely know me. I mean, don't know anything about Cyrus' struggle.

Friday night, Cyrus and I have a home study. That means a social worker will come into my house and decide if I'm a good parent to the child. You know, so that I can adopt him.

Because of all of you, I can now afford to do this. Thank you.

I never thought I'd need so many people.

Cyrus is growing up, and nothing makes me happier. I've heard parents say they wish their kids were babies again. That time flies. Well, I'm grateful Cyrus is now a child. I know the days when he won't want to cuddle ("Mom, will you cuddle me on the couch?") will too soon be over. But I want nothing more than for my kid to become an asshole teenager who can drive (did I mention he's almost legally blind?). I love our conversations and look forward to our fights, too. Gone are the days of waking up in the middle of the night to switch with Mindy (the bed for the couch) and hook him up to a feeding machine where the tube would come undone, spray him with milk, make him freeze all night, and then beep so fucking loud when it was done.

Gone, too, are those doctor's appointments when we're told he won't walk. Or talk. Or be able to go to a regular school. I don't miss anything from that time except my ignorance of things to come.

My brain hurt like a warehouse. It had no room to spare. I had to cram so many things to get everything in there. 

I know I usually tell you all the sad things. I'm not sorry about that that. The truth is, Cyrus is very happy. So am I. My son is funny and smart. He loves music "Mom, is that a stand-up bass?" In fact, yesterday we were on our way home from daycare when Montel Jordan's 1994 classic "This is How We Do It" came on the radio. I heard him, from his car seat, singing, so quietly, "this is how we do it."  Later last night he took a bath. Out of nowhere, "Mom, am I washing myself?"  And then he sang, "This is how I wash it."  I laughed. I cried. I held him all night long.

He is the kind of kid who laughs in his sleep and then wakes up to tell me, "Mom, I love you because you're an athletic football player."

I say to him, "I love you because you are Cyrus."