(I fully realize that I’m typing in all caps. It’s because I’m appalled and excited and whatever, you know. ALL CAPS! SQWEEEEE!!!!!)

Thursday we were up at OHSU doing his cardiac MRI. Everything seems to be normal, as far as having your aorta on the wrong side of your body can be, don’t you know. He did very well in the big machine, and actually went to sleep. I have no idea how he could have fallen asleep in there; it’s like a washing machine with 3 tennis shoes and a Mazda car alarm going off for two hours right next to your ear.

Afterwards he seemed kind of stressed out. I knew this because he kept saying “I love you Mommy” about every three seconds, and wouldn’t let go of my hand. He says this a lot anyway, but when he says it that often it’s a sign that his stress levels are reaching critical level. I just kept telling him I loved him back and made sure I kept touching him and rubbing his back.

Friday we went to the doctor for his rash, and after four days of being there it was all very anti-climatic. We ended up getting out of there in a record two hours instead of 14, and we all went home and took a nap. WHICH WAS WELL DESERVED.

This week, we’ve got a genetics check-up and a cardiac check-up, and then I think we’re done for a while. At least we’d better be >>>shakes her fist at the medical profession<<<.

Once again, we’re going through something with Henry. This time we’re not sure what, quite yet. Yesterday I was at the doctor’s for nearly four hours, today, a measly three. Blood work, hushed consultations with other medical professionals, puzzled looks. That’s what we’re getting this time.

This is something that we all do with him pretty much at least a couple times  a year, so I’m  not wringing my hands in panic quite yet. We’ll know more on Friday when we go back for more tests. Oh! And we get to do a stool sample at home. Wanna come over?

Funny story: when they were draining him of massive blood yesterday (six vials!!!!), I, um. I kind of got a little woozy and well. I basically semi-passed out. It was very embarrassing. And that is the last time we shall talk of THAT.

I must say it is incredibly tricky to be at the doctor’s all day and get any kind of meaningful work done, let alone the all-important perusing of gossip sites and staring into space and watchin’ mah stories. TRICKY. But I manage to get it done.

I shall update more on this latest malady soon, whatever it is.

Image via Wikipedia

So last night, we’re getting ready for the weekly engorging on Chinese and pizza for the kinder with a movie (Harry Potter and the Deathly Hallows Part 1…..sqweeee!!!), and Henry comes out of the bathroom and says those words that moms all over the world just love to hear when they’re sitting their butts down on the cozy couch with a plateful of Chinese food nom nom nom:

“Mom! I have red spots all over my legs!”

I get up and casually walk in to the bathroom, emphasis on CASUAL, since we are not going to panic, oh, no, we are NOT. He takes down his pants and pulls up his shirt:

Well.

Hmm.

CRAP.

The child has red bumps all over his legs, and as I watch, there are more blithely making their way up his back, stomach, arms, even one on his forehead. OUTSTANDING.

So, just like other moms in this situation, I simultaneously text The Hubs and call the doctor, aka Google, for various maladies that he could have. You know, because Google is so reliable and trustworthy. Personally, I believe they should put an extra search filter on there called “Panicky Mothers Who Should Really Know Better” and automatically exclude images that cause hyperventilating, low moaning, or, you know, sobbing. NOT THAT I WAS DOING ANY OF THOSE THINGS.

I called the advice nurse after watching his rash/plague climb up his leg like a frapp-fueled anaconda, and she informed me that a)no, he didn’t have chicken pox, b)no, he didn’t have measles, and c)it was probably just a viral rash and I should dope him up with Benadryl and call it a day.

Yes, surprisingly anti-climatic for Mr. Henry, whose health issues usually result in some kind of fist-clenching excitement.

Then again, I did have an interesting dream last night where he was literally covered, head to toe, in oozing blisters. DAMN YOU GOOGLE!

Today is your 13th birthday. I know this because you have reminded me approximately 900 times in the last week.

13 years ago, I was in the hospital watching Star Trek and “Howards End”. You took a long time to get here. Did you know that Daddy sang to you in the NICU? That’s just one of the many things that I love about your dad. That, and he has some fantastic (though completely off-rhythm) dance moves.

We’ve been through a lot with you this year. Lots of kinda scary stuff, but also some really exciting stuff. Like you’re in sixth grade now, and you go to middle school, and you love your friends, and you are so happy, all the time. You have an incredibly funny sense of humor. You’re also so easily pleased…for example, one of the biggest highlights of your day today is that you get hot lunch instead of cold lunch. You were over the MOON about that! You talked to Emma last night while you were taking your bath for almost 30 minutes about everything you were going to do today, and that hot lunch was right up there at the top of the list, along with ravioli for dinner and presents.

One of my favorite things about you is that you need a lot of Mommy time. You demand “lovins time” every day after school. Every morning, you climb up into our bed after breakfast and holler “I need some HUGS!” until I get back there. I love hugging you and kissing you, and I love that you need this, you really NEED this.  I need it too. I hope you never stop needing lovins time.

I also love that your birthday is around Christmas time, because you get to see Daddy put up all the Christmas lights outside:

And you also get to see one of your favorite people in the whole world….Santa Claus.

You still believe in Santa. The other day, you got a personalized video letter from Santa Claus that had you shaking your head and asking “how did he KNOW I wanted that for Christmas?” I love that you still believe in Santa, and that you write him a letter every Christmas, and that you leave cookies and milk out for him on Christmas Eve with the unshakable conviction that Santa will be there, and soon. Your siblings don’t dare tease you about this; in fact, they have a kindly conspiracy in place to make sure that your  beliefs are left intact as long as humanly possible.

Others might look in on you, believing in Santa, playing with Elmo, or watching Blues Clues and think to themselves “what’s wrong with that kid?” Personally, I believe it’s about the best thing in the world. I love, love, LOVE that you are so innocent, so childlike, so pure. It’s probably one of the things that I’m most thankful for in the whole wide world, Henry, and even though you’re growing and changing all the time, I hope that this part of you stays true.

I love you, Bear.

I had been looking forward to this concert all week. There are some seriously talented folks in this organization, and I knew we were in for a good show.

As soon as we sat down, an hour early (both to get Emma there on time and to get front row seats), Henry started in.

“Can I play with your phone?”

“Can I have a snack?”

“Can I have a piece of gum?”

Repeat those three questions 4782 times, and you’ll pretty much get the gist of what was happening. I was trying (vainly) to talk to my godmother (my second mom) at the same time, and every few seconds I was interrupted by “Mom. Mom. Mom.” AGGRAVATION.

I gave Henry The Look, you know, the patented terrifying Mom Look, but I can only do it on half-dial with him since he is VERY sensitive to my displeasure with him and has been known to do a full-on meltdown fueled entirely by his guilt in making Mom upset. And I didn’t really feel like dealing with that.

So the Can I’s and the Can I have’s continued, right on up to the moment the concert began, right on through the concert, and segueing gracefully into the intermission. At one point I caught myself thinking “Why can’t he just stop, already? Why does he have to constantly bug me about this stuff? Why can’t he take my No for a NO? Why can’t I talk to people without him grabbing my hand or asking me for something for the millionth time that day?”

It was at that point that the concert conductor invited the audience up on stage to join the choir in singing Handel’s “Hallelujah Chorus”. I sat there, caught between stewing in frustration and enjoyment of the concert, a disproportionate mix if there ever was one.

All of a sudden I felt a hand grab mine.

“Mom”, Henry whispered into my ear. “Mom, I want to go up and sing.”

I did a double-take. Henry? Go up on stage? This just did not happen. First of all, the child had no interest in any kind of performance. Second, did he know this song? He’d listened to it many times at home, but singing it was a whole ‘nother ball of wax. And third, what if he got up there and did something, well, inappropriate?

“No, honey,” I said. “Let’s not.”

“But, Mommy! I really want to go up and sing! Please!” His voice had a pleading note, an urgency that surprised me.

I made a quick decision and grabbed his hand. “Come on, then. We’ll go together.”

We held hands and walked past the rows of people, right up to the stage. His hand was tightly clasped in mine. I could tell he was nervous; he kept looking at me every few seconds to reassure himself that I was there.

“Just follow the conductor’s lead, sweetheart,” I whispered into his ear.

“I’m a good singer, Mommy, aren’t I?” Henry asked.”I’ll do a good job, won’t I?” His big brown eyes searched mine for reassurance. I took his hand in mine and smiled into his eyes.

And as the music started, and we started to sing this classic homage, I watched as Henry, my child, my mentally disabled, physically disabled, complicated, darling, sweetest, lovingest boy, sang the ancient words loudly and clearly for all to hear. Somehow, he knew almost every note by heart. He kept my face in his sights the entire time, glancing at me, squeezing my hand, and singing. Singing! On stage!

Suddenly all the frustration and aggravation that I’d been stewing in for the last several hours melted away in a stunning realization of what was  being offered to me in this one, most holy moment. All the questions, all the minor irritations…weren’t those the same questions that I asked of God on a daily basis? And wasn’t it so incredibly amazing, no – beyond reason, that He just didn’t give me The Look and think to Himself “why doesn’t she stop already?”

“For unto us a child is born….” the words resonated in my mind as I stared, awestruck, at this child, this imperfect, flawed child, who with a big goofy smile on his face and a shirt that proclaimed that he was “Proud To Be Awesome” for all to see sung out ancient words that spoke to the world about another Child who had been born in a stable thousands of years ago. A child announcing a Child. It seemed right, somehow, to listen to the ancient Scriptures spoken in a lisp, the music sung with a bit of hesitation, the lyrics whispered in parts that he wasn’t sure of.

“Did I do it right, Mommy? Are you proud of me?” he asked as we walked off the stage.

I hugged him, hard (“Mommy, you’re squishing me!”) and whispered into his ear: “You did perfect, baby.”

Except when it comes to Henry.

Even before Henry’s visit to Seizureland back in August, I had been battling with full-on anxiety and just outright terror as far he was concerned. He has so many different health and mental issues going on. SO MANY. And every time he gets sick, or starts fluttering a little, or just….I don’t know, anything, I lose it.

Am I paranoid? Probably. However, in most cases, the paranoia is justified.

Fearfulness seems like an inadequate word to apply to this ongoing situation. It’s like the pit of my stomach drops out from under me every time he’s in the bathtub and doesn’t answer me immediately, or blinks too fast, or gets pneumonia and doesn’t get better no matter what the doctors do.

To be honest, and I hope that this doesn’t freak anybody out, I’ve tried to imagine what I would do if one of these times, one of these times that Henry had something happen, that he didn’t come back. That he wasn’t there anymore.

I don’t think I could bear it. I know I couldn’t. Just writing it down, I’m overcome with ugly tears and snot running down my face.

But is it something that I as a mom need to have in the back of my mind? Yes. This mom does. Because I don’t know how long we’re going to have Henry with us.

I hope for a very long time. I hope that I’m gone before he’s gone, and that he’s well taken care of by his brother and sister who have both volunteered to watch over him when we’re gone.

That’s the reality of it. I know that Henry will most likely have many more “episodes”, many more times in the ER and the hospital and weeks home from school. This is a normal part of life for us, one that nobody else we know understands or can even come close to. And every time we go through this stuff with him, that horrible fear that every mother carries somewhere deep within her fights to overpower me. And sometimes, every once in a while, that fear wins. And crushes me.

So what do I do? Well, I watch him sleep, and I reassure myself that he’s FINE, that I should just go to bed already and KNOCK IT OFF. I give him hugs when he asks for them and when he doesn’t ask for them. I hold his chin when I’m sitting next to him (sounds weird, I know). I race him in the morning to get dressed and purposefully dawdle so he can have the satisfaction of yelling “I win!”

I can’t live in fear, I know that. I KNOW THAT. And I refuse to let it have a hold on my life.

Screw you, Fear.

I’ve got stuff to do.

IT ‘S LIKE A PARTY IN YOUR LUNGS! EXCEPT WITH FLUID AND HIGH FEVERS AND HORRIBLE RACKING COUGHS THAT SOUND LIKE YOU’RE BUSTING RIBS!

Le sigh. Yeah, it’s like a non-stop visit to the Crap Carnival here at Chez Redheadmama. We were at the doctor’s office for 4 hours (!!!enraged punctuation!!!!) yesterday, took us an hour just to get into the doctor’s waiting room where we then waited in a freezing cold room with a child shivering from a 103.4 fever, then we had to get blood drawn, then chest x-rays, then prescription, then madness-inducing little details that made me get somewhat Hulk Smash-y. And yes, I’m thankful for good health insurance and doctors and medicine and PLEASE JUST LET ME WHINE FOR A SECOND.

Emma is not happy about all of this, mostly because she’s got a super awesome sleepover party scheduled for Friday, which basically is going to go like this:

1) Enter Five Tween Girls.

2) Hours of nonstop screaming/giggling/screeching.

3) Makeovers of The Dog, The Cats, or Big Brother.

4) Repeat.

(Should also mention that somewhere smuggled in there will be Mommy vainly clinging to Facebook like a FRIGGING LIFEBOAT in the storms of pre-pubescent girl glee. Oh, also, Black Cherry Wine Cooler(s).)

Henry seems to be responding to antibiotics, but the last time he had pneumonia, he “seemed” to respond and then landed in the hospital with vague talk about “needles” and “fluid” and “needles sucking the fluid out”. Hopefully that won’t happen again, mostly because hello? MAH BABY IS FULL OF THE SICKNESS, but also, Emma really needs to get this party ON. If for nothing else to show off her room, which looks like a thousand baby unicorns vomited up gallons of blindingly pink Pepto-Bismol over every flat surface.

“It’s Lovins Time, Mama.”

“Okay, just let me finish what I’m doing here and I’ll be right the-”

“NO, MAMA.  You come back to your room RIGHT NOW for some lovins time.”

Bossy, I told you.

So! Basically, “Lovins Time” is when Henry and I snuggle together face to face on my bed. We talk, giggle, tickle, and generally just love on each other. He must have this every day, usually after school, and if we have time in the morning, we have Lovins Time then as well.

I asked him the other day the same question that my Grandpa asked me when I was 14, and he had just learned that he had Lou Gehrig’s disease, the same disease that would eventually take his speech, his movement, and his life. Except my Grandpa asked me if I would hold hands with him. I can still remember the feel of his big hands: cool and smoothly callused. I loved holding hands with him.

“Henry, will you still want to do Lovins Time when you’re a big boy of 16?”

“Yep.”

“How about when you’re 25?”

“Yep.”

In about an hour from now, Henry will walk through the door, strong, confident, happy, and secure in the knowledge that Mom will give him some Lovins Time.  And I’m so grateful for the privilege of this trust, this childlike assurance of the same thing yesterday, today, and tomorrow.  One day, when Henry meets his great-grandfather face to face in Heaven, I’m quite sure that Papa will know exactly what Henry means when he says that it’s “Lovins Time”, and will join hands with Henry in joyful understanding.

Mostly because his special ed. coordinator was incompetent and couldn’t be bothered to do the most basic of things for Henry.  I won’t go into it right now, but bottom line, she should NEVER have been in contact with kids. Much better suited to a cushy secretarial job for the state or something.

Anyway.

This year has been phenomenal. Henry comes home every day smiling. Friday, we picked him up from school, and as we drove by, we heard this little voice in the back seat singing half to himself:

“Goodbye wonderful middle school….I love you…..see you on Monday…..I Love You!”

Pretty amazing, if you ask me.

It was the Dreaded Cleansing Ritual last night in our house for Henry, aka “take a shower because seriously there is some kind of fungus growing on you”, and of course, we had the requisite screaming and crying and carrying on. All ignored by yours truly. He came out and sat down on the couch, feet up on the coffee table, and proceeded to clip his toenails and fingernails, which, I guess is part of the Dreaded Cleansing Ritual. At least for Henry.

ANYWAY, after he gets all done, he gathers up all the clippings, very carefully, and walks gingerly over to Dean and I.

“I want you to meet my new friends,” says Henry.

Me: “…….”

Dean: “Uhhhh….”

Henry: (picks one clipping up) “This one is Gary, and this one is Steve, and this one is Leonard. Say hi! Say hi, little friends!”

Both of Us: “…………..”

Soon after this, Gary, Steve and Leonard met an unfortunate end right next to the coffee grounds and banana peels, but they lived a full life, people. A FULL AND FULFILLING LIFE. For toenails, anyway.