Revenge of the Helmet

I want an easy button, like in the commercial. Where’s my easy button?

I feel like I do pretty well. Sometimes I get down, but mostly I am cheerful, and grateful, and I have a good sense of humor. We are a happy band of mutants, us Hills. We are doing alright.

Friday some doctors told me my son, who has a bleeding disorder, and has to be oh so careful, and can’t skateboard, and can’t ice skate, and can’t wrestle with his friends, now he has a condition that makes it dangerous for him to be exposed to cold temperatures. He could quit breathing. He needs an eppy pen with him. He can’t go swimming in cold water.

Great.

When I say he can’t do these things, like skateboarding, I guess he could, but is it worth it, you know? Falling once means the hospital and meds and pain. So he reads instead.

Which is okay. Reading is good. A person wants options, though. Opportunities others take for granted.

Sage always had to wear this big helmet to protect his head, and he hated it. This year we let him quit wearing it, because he is older, and calmer. He has enjoyed the normalcy of running on the playground with his friends.

Last night, after a day of doctors telling us yet more ways he could die from normal activities, speaking casually as if they were talking about the weather, my son, my sweet son came in my room and snuggled close, like he did when he was little, and I asked him how he felt.

“It’s the revenge of the helmet,” he sighs.

I laid there with my son and told God silently that I really didn’t appreciate this. I wish I got some sort of credit for being cheerful during all the crap we put up with and that I could get a break, just once.

And I look around the room, and there is my husband who loves us and never, ever complains, and we are safe and warm and fed and loved and those are breaks, I forget but they are, and I’m sorry, God. And we have something in common, right? We both love those who must walk through pain, and stand back and let them deal, and hope they remember we love them. Only you see the big picture, what’s up around the bend, and what matters, and I am railing and pouting again.

I wonder if God wants to fix it, but knows better, like when Jude is struggling to put his socks on. Real love watches and waits, and loves and believes. It makes me feel better to help, but it doesn’t do Jude much good.

So I guess we’ll hang in there a little longer, and watch and wait and love and believe, and try to recognize those breaks when they come along, and I know in my heart there are more than we ever knew, blessings as far as the eye can see. Forget the easy button, the mutant family is doing just fine. We might just be okay after all.

Winter

Sometimes we head out to the yard, Jude and I, just the two of us on a cold gray depressing January day. Jude is dressed like that kid in A Christmas Story who can't put his arms down. I am armed with a giant bubble wand thing we got for Christmas and my travel cup full of hot coffee and we are good to go. The snow is crunchy and hard and we go scrunching around on it until that bores us and we look around for squirrels. They are smarter than we are, apparently. No squirrels.

Jude climbs the playground equipment and stands on the top, yelling for me to catch him from six feet up. This is bad enough in the summer but now big snow boots are hurtling towards my face at an alarming speed. I catch him and somehow manage to stay standing. Who says women aren't strong?

"Want bubbles? Want big one?" "I want bubbles," I remind Jude, "you want bubbles,” he repeats, no, I say, and we both laugh. I know he knows and he knows I know he knows, what? how to speak in first person. He is supposed to, but who cares, we just want to play, and so we do, I start blowing these giant monster bubbles that seem so out of place on this barren day. They float up past the warm happy windows of my friends and family who are stacked high watching sports and relaxing. I remember slow Sunday afternoons and being bored. I think. That's okay. I don't miss it much. A big, colored bubble sails slowly past Jude's head.

Are you a good witch, or a bad witch? I ask him. No response.

I bend over to refill the bubble thing and whap! I am stung by a wad of snow , right on my forehead, it hurts tremendously and I look up and Jude has this impish look on his face and he runs away laughing, my son hit me with a snowball, well isn't that normal and I am pleased.
Not in the face, Jude, I call, but he is off eating snow in the corner of the garden. This is something I cannot prevent so I look away to prevent having a panic attack about germs and pigeon poo.

It is cold, and depressing, and Christmas is over and my house is dirty but it is hard enough to muster the will to live let alone clean for Pete’s sake, so I drink my coffee and watch my son putter around in the snow. He could stay out for hours; I will probably end up promising him fast food to get him in. Sigh. Maybe I will have some too.

Soon it will be spring and the yard will be full of friends who seem so much nicer and interesting when there is fresh air between us, playing guitars and happy half dressed kids running around in the sprinkler. Until then we will crunch around this arctic tundra, Jude and I, sharing moments only we can know, and that is okay for now, enough for me on a frozen winter's day.

Things that bug a classy gal like me

I write this list as a means to calm myself.

Kiddo
Veggies
Blouse
Slacks
Drizzle (as in, drizzle some olive oil on your veggies)
Fresh, especially when people say, fresh fruit. and veggies.
B. M. please, for my sake, just say poop.
Pert
Classy
Crisp, crisply
Glass of wine. Of course it's in a glass. God.
Moist.
Broth.
gal
neat
girly
hunk
lady, as in "That's my lady, or "Classy lady."
tot
tweens
handicapped
Stuff
cleanse.
Beauty routine. Who has a beauty routine.? Who has an expression to describe that?

Mandy Patinkin. I realize that he is not a word, nor an expression, but he bothers me. Good Lord, he bothers me. Why is his name Mandy? I have to take deep, yes cleansing breaths when he is on television. I wish Jimmy Smits was on that FBI show instead. Jimmy Smits is neat.

Packed Fresh Daily

Mercy is the only thing you can ask for, really, in life. Unmerited favor. Grace. Beauty and sweetness in the midst of grief and pain. Every day mercy is brand new, if you believe the Bible, and I do. I really, really do.

After our son Sage was born my husband was ready to be done. We had a beautiful child, and still some freedom, and we were hanging in there. Sage came with us in the front pack wherever we went. He slept in and woke up singing. He had been healthy except for this mysterious bruise that covered his left side. I pointed it out to the pediatrician, mindful of my own clotting issues, but she didn't seem too worried so I took her referral for the hematologist and put it in my pocket. I think it went through the wash.

I wanted more children. That is all I wanted, and I was going to have them. Don wanted to pursue his music, and play gigs, and he had not forgotten the vomiting, the hospital stays, and the day Sage was born when he stood between his hemorrhaging wife and residents frantically doing CPR on his limp, blue child. He had no wish to repeat that experience.

But I wanted more children. All I ever wanted was three boys. I was going to have them. I told Don as much. I would have more children, or we would not be married.

The selfishness of it staggers me now. It literally takes my breath away.

I watch my husband play with the child I insisted we have, a beautiful boy who has changed us, torn us apart and put us together again, broken our hearts and blessed us beyond words. There are no music projects now, no dates downtown, no sleeping in. Yet the joy in my husband's face is impossible to deny.

Jude had horrible jaundice as a newborn, and a high fever. One night I sat up all night long after the power was down in our city high rise, holding him and wondering if I should take him to the hospital. Every day I look at Jude and wonder if I ruined him, and that is the truth. Every hour we spend trying to teach him to button and color and his hands won't work, every time we meet with yet another therapist, I remember that night. I know God knows I would die rather than hurt my child. I know He knows that. But late at night when I can't sleep, that matters less than it should. Sage got Von Willebrands from me and from a lurking recessive gene from Don.
It is not a mild disorder for Sage, and never will be.

Then I got pregnant with Eden. I was terrified, of autism and jaundice and bleeds and dying and leaving Jude behind. Terrified my long suffering husband would finally have had enough.

Long ago I had wished for three boys, and a red headed son to remind me of my Grandmother.
Eden was born on her birthday, with bright red hair. A special gift from my secret pal, who hadn't forgotten the desires of my twisted and broken little heart.

And Eden does bleed. But he is not autistic. And we are happy, broken and struggling but happy. Because mercy is new, brand new, every single morning. Mercy, mysterious and wonderful and completely, absolutely undeserved. My children are beautiful, and we are wonderfully blessed with joy and sweetness and pain and love.

And mercy, sweet mercy.
Brand new. Every day.

Mercy lives here, and it's free.

Come and get it.