Friday, March 21, 2014

A Birthday

It's been four years since you've all been blessed with the wonder that is Cyrus.
For me, it feels like a hundred years or just yesterday that this man was born. (If you'd like to revisit that blog, it's on this site)

This is still a hard day. I try not to think back to all the things that happened to Mindy and me before and after March 21st, 2010. But. I can't help it. Missed phone calls. Open cervix. A quick education. The death of two pets. Blood everywhere. Mindy's shaking body. A tiny baby in a cube. All those cords and machines making him work. Wondering every day if he'd live another.

The isolation we both felt from all of you. From the world. We were told to stay inside for a year because of his immune system. We did. In some ways, I'm still trying to come out.

But here he is, friends. Have you ever met a more compassionate person? The other day I was overcome with joy, with pure love for him, watching him kick a soccer ball in the yard. I scooped him up and told him I loved him, my voice cracked a little. And even though I was wearing sunglasses, he knew, "Mom, are you sad? Are you crying?"  I tried to explain that people cry when they're happy, too. He just screwed up his face in a frown and cried with me. Then he kissed, and kissed me.

That's how he wakes me up, too. He's still sleeping with us (judge all you want), so he rolls over in the morning, kisses my cheek (he does it with Mindy, too, of course) and says, "I love you, Mom."  When he's going to sleep at night he asks for kisses, "Mom, can I kiss you?" Sometimes he asks to hold my hand or says, "Mom, I wanna hug you."  If kids are crying in the grocery store, he stops what he's doing and turns to me, "Is she sad?" This is followed by minutes of talking it out with him. He likes to talk things out. He wants to understand everything there is. I try my best to facilitate.

He loves music, especially bluegrass. Banjos really do it for him. He also loves to sing and seems to know nearly every song, or at least parts of them.

This kid also loves to kick and throw balls. He's curious about things and learns new words quickly.

He is fucking amazing.

I know everyone says that about their kids. But, I don't feel like he's mine so much as I'm his. He is Cyrus the Great, Wonderful, and Powerful. I am just the person who shreds his cheese and drives him around. I don't mind, though. Because. Well. You've met him. Everyone who meets him falls in love.

But living in his shadow is hard, too. We're still slaves to the feeding tube, and he's wearing pull-ups; we're working hard on these two.  He has an appointment with a SLP and PT every week. He's also enrolled in adaptive gymnastics and horse riding. So, 4 appointments a week. Mindy and I try to divide them evenly, or at least divide all tasks evenly. Since she is the only legal parent, she has to do all the paperwork and fight with the insurance. Just recently they decided to stop paying for his food-that's 600$ a month-so she's been on the phone a lot lately.

Finally, though, it feels like I'm close to being just a regular parent. The first years I felt like a doctor, nurse, and all sorts of therapists. His life was appointments and schedules of feedings and beeping machines and hand sanitizer.

Today, don't just celebrate the birth of such a remarkable boy.  Celebrate all of the  love and support and hope and joy from family, friends, and strangers it took to keep him with us and raise him up.

Let's keep holding him up. I can think of nothing in this world more beautiful than that.

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