Monday, March 24, 2014

Four Minutes.

Saturday was rough.  The morning started with thirty minutes of whining because breakfast wasn't right.  This was followed by whining about underwear not fitting well, the loss of "the head" at least 10 times, not wanting to take a much-needed nap.  The lawn mower didn't work correctly in the yard.  He couldn't find his boots. His boots hurt his feet. He wouldn't wear any other shoes despite the boots-hurting-the-feet.  He wanted what Mimi had. He wanted her to play with him. He wanted her to leave him alone. He wanted Haddie to play outside with him. It was so rough of a day that I repeatedly asked him if he felt bad, felt his little forehead to see if he had a fever. He hasn't had a rough day like that in a long time, and it would've made sense for him to be coming down with something. It was the kind of day that made Marty and I look at each other and shake our heads, trade back and forth with handling each consecutive meltdown. By that evening, we were both worn down, parenting with the give-in style that I hate but always resort to because sometimes it's just easier not to fight it. His final alarm in his bedtime routine had been set and gone off, and yet there he was, tearful, standing at our bedroom door, asking to snuggle with me.  I gave in. I turned off the lights, made room for him on the other side of the bed. I made promises that this was the ABSOLUTE LAST thing he was doing that night, or else Tofu and Elsa would be sleeping in my room.

And then it happened.

Instead of staying on his side, like usual, avoiding any kind of physical contact, he scooted his little warm body next to me, putting his head on my pillow. His sweet face inches from mine. His little chubby feet burrowing in between my knees for warmth. I kissed his cheeks because it was impossible not to, and whispered, "I love you so much..."

He replied, uncharacteristically, "I love you too!" with a smile.

I said, "You are my favorite boy..."

He whispered, "And you're my girl. Will you always be my girl?"

"Forever and ever."

We giggled and tickled and loved, and for those four minutes (on the nose; I set the timer), there was no rough day. There were no tantrums or arguments or lost toys. It was just me and my favorite boy.  Four of the absolute most valuable minutes of my entire life. Four minutes to remind me of what is real and important in life.

I love him so.

Monday, March 10, 2014

Complicated Conversations

Obviously, as the kids get older, our conversations become more complex.  They're curious about lots of things, including why we have day and night, what makes the trees lose their leaves, and most recently, death.  Anderson has made great strides with both his expressive and receptive speech, which is great. However, there's still a significant delay there, and the more complicated our conversations, the more evident it becomes. This generally leads to a) laughter on our part because the things that come out of his mouth are sometimes quite funny, especially if you have the inappropriate, 12-year-old boy-sense-of-humor that we have, or b) extreme frustration because ZOMG explaining things for the gazillionth time gets to be annoying, you know?

Last week, I was showing Anderson a video of himself...
 (Notice my thick accent? Also of interest, look for my comment about Anderson waving bye-bye to Daddy; he was hand-flapping and I was in denial. My how things change...)

He immediately noticed two things, neither of which matched my purpose for playing the video (shock!!). He noticed our former dogs, Rex and Darla, and he noticed how I said their names accidentally when I was trying to get Amelia's attention (what good mother doesn't call her children by the dogs' names at some point?). This has sparked many, many conversations about Rex and Darla, whom he clearly doesn't remember at all.  We explained awhile ago that Rex and Darla were in heaven, and that pacified him at that time. No longer does that answer work. He knows more now; he has the context of Haddie to understand what dogs are like. Combine two dogs that he doesn't remember but were obviously with him at some point, as evidenced by the video, with what he understands about Haddie, and you get a very confused little dude.  Some of his comments this past week include:

* "When we were finished with Rex and Darla, we got Haddie. When we finish with Haddie, we will get another dog!"  Ummm, we don't...'finish'...dogs.
* "Rex and Darla are in heaven. I'm going to get in the car and drive to heaven."
* "When we go to Nana and Papaw's, I'm going to go to heaven."
* Me: "Man! I can't find that pencil! It's gone!"
   A: "Just like Rex and Darla..."
* "When you're dead, you never see me again."

He doesn't mean to be morbid; he just doesn't understand. And no amount of explaining, comparing, or discussing is helping at this point. We're just going to have to wait this one out and continue to do the best we can with the explanations. All while trying not to pull out our hair because of the monotony of the repeated, endless conversation.

In other Anderson news, he continues to struggle with settling in at night. He's still totally obsessed with the idea that the power could go out in the middle of the night, unfortunately. As a result, he's not getting to bed at a decent hour. He's starting to get dark circles under his little eyes. I think when he goes for his check-up next month, I'm going to talk to his doctor about what we might be able to do in terms of helping him settle at night and get some good rest.  He's a grouchy bear and he's got to work on giving up his afternoon naps before Kindergarten next year. Sigh.

Leaving you with a fun, never-before-seen video of him. As I've mentioned before, he LOVES music like me. Loves it. It's kind of funny; his new favorite genre of music is alt-indie (so is mine...coincidence?). When he hears something that sounds like this kind of music, he says, "Is that a dark doors song?"  He knows that alt-indie is what they play in Hollister 24/7, so that's what he calls this type of music. Anyway, he is also musical himself. He walks around, banging two objects together as percussion, and he..."sings". Except he doesn't say words. He says approximations of words. You know, kind of like you do when you're listening to Pearl Jam.  You never know the actual words, so you just say whatever nonsense words sound fitting and match the music. He does that, and it's both fascinating and hilarious.  Hilarious because he doesn't care at all if anyone sees or hears him and he's often loud, and fascinating because the boy completely, 100% understands rhythm. The rhythm (or off-beat rhythm) that he keeps with his "drum" and the way he coordinates his "words" in time with his beat is pretty impressive.  Anyway, I videoed the other day. Enjoy.
And also because I am RIGHT about Pearl Jam...

Wednesday, March 5, 2014

Health Update

We are the house of health issues--surely we see more doctors per capita than most households! Marty has seen several of his specialists for the first time since he busted out of the hossy this last week, so I thought I'd just do a little update on all of us, to keep everyone in the loop.

Marty:  He's been going for outpatient IV antibiotics since he was released from the hospital the first time. He has chest x-rays and blood work weekly to make sure that the rampant strep infection that they discovered in his chest cavity is continuing to dissipate. At his appointment this past Monday, they found that his white blood cell count is ALLLLLMOST back to normal, and his chest x-ray looked significantly better. So, he will continue to get IVs through Friday, and then will switch to oral antibiotics for a bit. He will be followed by infectious disease for awhile, just to make sure the infection stays away.  He also saw his sleep doctor, who follows his newly-discovered apnea. Apparently the C-PAP, although he felt it was really helping, is actually not really preventing apnea episodes. In the hospital he had 20 episodes in 2 hours; now he's down to a 17. Obviously, not good. He will go for a more thorough sleep study next week and will probably be put on a different C-PAP machine. They believe his issue isn't related to an obstructed airway, but more of a "Central Sleep Apnea" related to his brain tumor and surgery/treatment. Short version: when he sleeps, his brain fails to send the breathe signal to his lungs. Yeah, so that's not a great thing. Glad he's having the sleep study next week so we can fix the problem. It can't be helping his already crappy immune system to be getting that kind of sleep.  He followed up with our regular doctor this week as well, who did more blood work. When he was in the hospital, one of his immunoglobulin levels was low, so we were kind of thinking that may be the underlying issue causing his severe infections. However, his most recent blood work was normal, so...that's not it. Back to the drawing board. He will see the pulmonologists next week. Whew.  Enough to make your head hurt.

Amelia:  I'm a terrible mother. She's late on all of her yearly check-ups. She needs to see neurology and nephrology, as well as genetics.  I know, I know...I'll call this week. We've just had a lot going on around here. You know, with the deathly ill Daddy situation.  She's doing very well. I think she's had a growth spurt--her pants are shorter. At her last weigh-in, she was a tad over 22 pounds. She's also getting some more teeth, which is...well...not great actually. Her little mouth is getting mighty crowded. Our dentist thinks she will eventually need teeth removed and not one but TWO rounds of orthodontics. Yippee. She seems to have gotten over our last round of funk, just in time for her seasonal allergies to kick in. Good stuff right there.

Anderson:  He's good. Got over this last sickness. His physical health is unremarkable. We are taking a speech therapy break until he goes to K next year; he has been meeting most of his speech goals and quite frankly, our health insurance changed and it was going to cost an arm and a leg. The boy has been in therapy of some sort since he turned 18 months old, without any breaks in service; I'm not feeling too guilty about taking these last few months off. We are deciding if we want him to participate in some kind of social skills group or activity this summer. However, with our excessive snow days, summer is gonna be mighty short around here.

Me:  Still crazy. Also, having a little trouble regulating my stupid thyroid. It can't decide if it wants to run low (which is hyperthyroid) or high (which is hypothyroid).  That's a lot of fun...if you have thyroid issues, you know what I'm talking about. Other than gaining a whopping eight pounds since Marty went into the hospital about six weeks ago (that's a LOT on a short girl like me!), I'm all good.  Need to get in a diet and exercise routine, but that's pretty much a constant.

Haddie:  Still adorable. Best dog in the world.

Elsa:  Still headless/body-less. Anderson just carries the head around everywhere. It freaks people out. Pretty sure I saw a small child start crying the other day.

Anna:  Still Amelia's favorite.

Monday, March 3, 2014

Fighting the Demons--A Letter To My Son

Oh, my little blonde love...

You've come so far.  You've learned to talk, to express your wants and needs. You've learned to navigate the world successfully, even though not everyone shares your passions or communication style. You are always yourself, with no regard for what others think. You make everyone around you smile every single day. You light up any room that you're in. Everyone loves you wholeheartedly and unconditionally.

But I see it. I see it every single time.  The anxiety that lurks behind your gorgeous blue eyes.  The worries, the fixations about things that are out of your control.  The fears that may seem absurd to other people, the ones that you cannot let go of, no matter how much comforting that I give. The ones that haunt you every single day. I see them, and they hurt me so much, like an unexpected blow to the stomach.

Scraped knees and elbows, busted lips, ear infections and stuffy noses. I can make all of those things better with a hug and a kiss, medicine and band-aids and love. But there's no mom super-power, nothing in my bag of tricks that can help you with overcoming your fears and anxieties. They render me helpless and leave me feeling wrecked and tired and so incredibly sorry for what you go through each day.

Last night, as you lay in bed, crying hundreds of hot tears, worrying about whether the power was going to go out, I did what I could. I kissed each and every tear, and each kiss was a wish. A wish that things would get easier for you. A wish that you would become strong enough to overcome the worry. A wish that my love, as immeasurable as it is, would be enough to make it better.  I covered your little face, head with kisses and pretended that each one was like a band-aid on an open wound that would protect and heal. I wiped tears with my fingers and tried to imagine that my hands were creating an invincible bubble around you, so that nothing could hurt you or scare you again. As you started to calm and the sniffles became fewer and fewer, I squeezed your hand and made promises that I knew I couldn't necessarily keep--that the power would most definitely not go out. That the lights wouldn't blink. You settled in, and I felt guilty but satisfied, knowing that just for that moment, you were comforted and that the anxieties had abated for the night.

I walked back to my bed and said a silent prayer for the electricity to stay on, so that you could get a good night's sleep.

I love you, baby boy. And I will continue to do everything I can to help you learn to manage the fears and anxieties that plague your every day living. I will never stop fighting for your happiness.