Random Spring Things

  • I have a sinus infection and so does Jeff. His voice sounds fine. Mine sounds like I’ve been smoking for the past 32 years. We are both on the same antibiotic. We are both lethargic. The good news is, Jack has his day program today and Sunday, which means we were able to spend some quality time at the InstaCare and the pharmacy this afternoon. It all evens out—both caregivers got sick, but we have some help in the wings and thus we are managing.

 

  • Jack’s hair has grown out into wild red curls. It’s a very shaggy haircut that makes him looks endearingly like a teen with big hair. Jeff thinks he looks like an orphan. I think he looks charming.

 

  • I am on a young adult fiction kick at this point in time. I can’t stop devouring it. Stargirl, Seraphina (and it’s sequel Shadow Scale), The Storyspinner, Pax (one of the most beautifully designed books I have ever read), with The Thing About Jellyfish, Death Coming Up the Hill, and The Skylighter next in line. Why is it that when you are sometimes tired of all the books, a new genre makes everything new and perfect? If you have other delightful YA finds to recommend, please send them my way in the form of a comment. I will love you for it.

 

  • I took my littlest boys to Beauty and the Beast this weekend, which turned into an exercise in How to Keep Truman Quiet and (Relatively) Still. He took off his shoes. He dropped his Skittles. He moved to the empty row in front of us and rocked the seats back and forth. He sat on the lighted steps. He moved to the empty row behind us and leaned over the seats, stage whispering to me. He told me he wished I had brought him a blanket. He sat on my lap and WIGGLED. At the very, very end of the movie, he somehow decided to sit quietly and watch, not moving, entranced. Charlie, on the other hand, did a frantic potty dance at this moment and dragged us both from the theater in the happily-ever-after moments before the movie ended. What I mean to say by all this is, I will need to see it again.

 

  • Spring is rather brown here, but it has the loveliest, earthiest smell. It’s the smell, I think, that makes the end of winter the very best. And no coats, even when it’s cold. That part is refreshing, too.

 

 

 

Enough

Last night before bed, Jack found my keys, unlocked the storage room, and smashed a fair number of light bulbs.

This morning, he poured out a new bottle of hand soap, shredded some Nerf darts, and irrevocably made off with my deep conditioner and my dry erase markers for teaching.

Our day to day life may as well feature Jack lighting twenty-dollar bills on fire. It’s death by a thousand cuts, as Jeff likes to say.

This is why our house and our car and the things in them are merely tools to shepherding our children through life. They mean nothing, except in a purely practical sense.

“Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal AND WHERE JACK SHREDS AND ANNIHILATES: But lay up for yourselves treasures in heaven, where neither moth nor rust NOR JACK doth corrupt, and where thieves do not break through nor steal: For where your treasure is, there will your heart be also” Matthew 6:19-21.

Where is my treasure? It’s certainly not in a well-appointed home with fine finishes. It’s not in a luxury car. Frankly, this is a gift that Jack has given me, though it sounds counterintuitive. I think the natural woman version of Megan would easily get caught up in that worldly business.

I’ve always thought that Jack blesses me this way. Even while he is a wrecking ball on the material world, he’s taught me to care about people, relationships, humility, giving—eternal things.

If that sounds smug, I assure you, I do not feel smug. I live in a house that has good bones, but which is falling apart—the sinks, toilets, cabinetry, walls, flooring, banisters. It’s been beaten, raked, clogged, warped, and dismantled. It’s still standing, but it’s a wreck.

Walking through the mess doesn’t make me feel holy or enlightened. It makes me feel annoyed and tired. It makes me wonder how we will ever fix it all.

I keep reminding Jeff, to whom the house is an albatross hanging from his neck, that WE AREN’T REFUGEES. WE HAVE A HOUSE. IT WORKS. It keeps us warm, dry, and sheltered. It isn’t pretty, but it’s enough.

We have what we need, and we have learned not to cling to material things.

Charlie’s Birthday, Winter is Finished

When things start to look up after hard times, do you ever look around and think, “Is this going to last? It’s so good. Too good, maybe.”

This is how I feel today—like a nightgown on a clothesline in a breeze. But will the breeze turn into a downpour, and will a wind gust blow the nightgown into a muddy ditch? Who’s to say.

It’s Charlie’s ninth birthday, it’s sunny and warm, and I’m alight. I had the following thoughts today:

  1. I’m really glad I didn’t just give birth (apologies to all moms in labor or postpartum. I’ve been there. Four times).
  2. Charlie is the happiest, most thoughtful and genuine kid. My life would be a smaller, duller place without my third son.
  3. Because of Charlie, I know more about Abraham Lincoln, John Wilkes Booth, Mary Todd Lincoln, Martin Luther King Jr., and the Reichstag building being stormed by the Soviets than I ever would’ve otherwise known. I’m nurturing a secret hope that one day he will become a tour guide at a national monument, fulfilling his dreams and enriching the lives of his fellow citizens through his deft handling of dates and facts.
  4. My children are like me—they like to choose their own birthday presents. Perhaps I have trained them this way. Maybe it’s an innate preference. Whatever. Who cares. The fact remains that they love to go shopping with me and see everything and make their own choices. It’s better than unwrapping surprises. It’s the hunt and the anticipation that reward them the most. This is how we do birthdays. We go out together and we SHOP. It’s so much fun.
  5. Pizza is so good. I’ve dropped soda and many carbs and sweets. I’ve been eating more fruits and vegetables. I haven’t been eating a whole lot of pizza, especially really good pizza. But tonight I did, for Charlie’s birthday. Oh gosh. Pizza. Wow and yes.
  6. I am so very tired every night. This is because I’m doing an hour at the gym plus the 200 exercises prescribed by the physical therapist. But it’s a good tired. I’m trashed and I feel great.
  7. Peanut butter is like manna to me, of late. Years of kids and kid-lunches turned me off from PBJ’s some time ago. But peanut butter on a spoon? Oh my.
  8. Jack’s ear is clearly healed, because he is the happiest person in the world, currently. They said at school he was dancing and singing this afternoon. I love him. I love it when he enjoys life.
  9. When we get to Charlie’s birthday, I always celebrate that we have made it through another winter. We actually did it. I can’t even think about next winter. But this one, dunzo.
  10. There are so many happy and exciting things to look forward to in the coming months. This is when the disbelief creeps in and I wonder what trauma will derail it. Yet I’m still holding on to hope and the vision that sometimes seasons of wonder follow the most strenuous seasons. I’m hopeful.

Extremely Shallow Shoe-Buying Post

Because I am, apparently, getting old, I require shoes that don’t kill my feet.

I’m not ready for Dr. Scholl’s brand footwear yet, but I know myself well enough that when shopping online for shoes, I need comfortable flats. The end.

Online shopping fits the quagmire of my life with my particular children so much better than the traditional have-free-time-and-drive-to-actual-stores model of shopping. And I’m getting better at knowing, just from a website, what will feel like clouds on my feet, and what I will have to return because PAINFUL, all while balancing the fine line of fashionable/cute and orthopedic/hideous.

But sometimes the choices in the sweet spot feel like sixes. As I do not have an unlimited shoe budget, I recently ordered two pairs of nice, comfortable-looking sandals, with the intention of trying them on and keeping just one pair. I’ve rarely invested in good shoes for summer. I’ve worn flip flops and cheap, trendy sandals, which you can totes get away with between the ages of *fifteen and thirty-five (*not based on actual research).

This breaks one of Engineer Husband’s cardinal rules, which is: Never buy cheap shoes or cheap tires. If you ask why, as Henry did once, Jeff will reply that going cheap on these things is a false economy. It’s cheaper in the short term, but you will assuredly pay in the long run.

The two pairs of shoes were delivered to my porch and I tried them on: a Birkenstock and a strappy Olukai leather sandal. Weirdly, the Birkenstock was less comfortable, which doesn’t make any sense to me. But I asked Jeff’s opinion on the two before I made my decision and returned one pair.

He looked at them at length. He said he liked them both. When pressed for more input, he stared at my feet and said, “The strappy one. It hides the veins in your feet better.”

Thus ensued one of perhaps a half dozen times in my life when I’ve been struck dumb in confusion and disbelief.

What was he talking about? Veins in my feet? Everyone has veins in their feet but ….. Oh. My. Stars.

At this point I looked at my feet at length, as well. To my dismay, my perfectly regular feet WERE INDEED SPORTING PRONOUNCED VEINS ON TOP.

I had an internal conversation that went like this:

Me: Your feet don’t look all that young anymore.

Also Me: Wait, now I need to feel self-conscious about the tops of my feet? It’s one area I’ve never thought needed fixing. Why is being a woman so complex???

I had a real life conversation with Jeff that went like this:

Me: You think my feet are veiny?

Jeff: Everyone has veins in their feet.

Me: That’s not what I’m asking.

Jeff: I like them both. Pick either one, you can’t go wrong.

In her book about aging, Nora Ephron talks about how she feels bad about what happened to her neck as she got older, so much so, that she titled the book I Feel Bad About My Neck. It is insightful and hilarious. What sticks with me long after reading it is that she hadn’t realized until middle age that she should have been admiring her neck daily all along, appreciating it’s smooth, taut skin, gazing at it in rearview mirrors when sitting behind the driver in a car. She didn’t know she should have been enjoying her young neck until it was an old neck.

My feet aren’t yet quantitatively old. They just aren’t twenty-two. And when shod in NOT CHEAP shoes, they feel pretty good. But they do have some ropey veins, so shield your eyes.

I’m keeping the strappy shoe, reader. Because it feels like a leathern cloud.

That’s the only reason.

 

Balm

On Monday, Jack bit Hannah, his ABA therapist, on the face.

It was horrific. He has a jaw like a vice, and can clamp down on innocent, unsuspecting flesh like a lightning strike. Poor Hannah was brave and forgiving, but tears poured from her eyes. I know how she feels. Jack can hurt you so quickly and painfully that you’re crying before you can think a thought. I disinfected her face and applied triple antibiotic balm to the bite marks, before sending her home early.

I spent Monday night shaking with rage. I was so angry at Jack for abusing the people closest to him—the people who are trying to help him.

His ear is infected again, in case you were wondering. When Jack is sick, he is a monster. This winter, he has been sick every other week. I give him every possible med and consideration. But our already fragile daily existence washes away in a deluge with every illness. He breaks the house and hurts people.

When I stopped shaking in anger, I wept with fear. I was afraid that if Jack keeps up this abuse, no one will help or care for him in the future. I don’t know how I will care for him if he lashes out like this. I felt afraid of our waning options.

I lay on my bed, tears streaming, praying for peace amid my desolation. I was wracked with sorrow.

I breathed slowly and deeply, visualizing the beach at Turtle Bay on the north shore of Oahu. I remembered our first morning there, three years ago—just Jeff and me. We woke early and walked to the beach in the hours when only jet-lagged tourists are awake. This morning it was just us. The beach was vacant. We had come from years of disability-related hardship where small people screamed in our faces about everything, night and day, a life of literal poo, stench, and weariness.

And now we stepped onto this empty, magic beach.

The waves rolled in with a force greater than the vicissitudes of autism and developmental delay. They pounded the beach. Jeff stood, his feet on the wet sand beside the breaking surf, and said, “I can’t believe we are here.”

That morning when the beach belonged to just us—it’s where I go when I am the saddest. I return there in my mind, looking for the lightness of being I felt there. When Jeff and I explored the shore that early morning, I was alive and saturated with gratitude. There was an entire big world outside of the repetitive, painful life of care-giving that I lived. I got to taste it, dip my feet in it. It was a balm.

This week, though, when I envisioned myself on the beach, it haunted me. The waves rolled in relentlessly. The sound of the surf infused me with longing. Instead of feeling peace, I was wounded by my distance from the beauty of that place. I was not on that beach. I was solidly stuck here, run through with sorrow.

Some hurt is inescapable.

I walked on the beach in my mind, but Jack was still with me.

I had this thought: Get a tube in Jack’s right ear. It’s something we have considered, but were putting off until we could schedule his dental work at the same time. The sticking point has been the dental clinic at the children’s hospital, because they are a nightmare when it comes to scheduling OR time. And so the whole winter has been peppered with entire weeks of illness-related behavioral issues.

Last weekend, I saw an article in my news feed, written by a young widow, a mother of two small boys. Something pricked me as I scrolled past it, and I felt I should read it. This woman wrote about the grief and upheaval in her life after her husband’s death in an accident when they were both in their twenties.

Two things remained with me after reading her words.

  1. She said at times she would pray for comfort, and all her pain would leave. For about 24 hours, she would feel absolutely no pain, when before it had been consuming. With time, it would slowly creep back, but there were those periods of respite when she felt Jesus was shouldering her sorrow.
  2. On one occasion, she visited her husband’s grave and prayed, asking God why it had to happen. Why did he have to die? The answer she got was that her husband had completed his work on the earth. His part was done. She had to accept it. That was the answer, even if it felt incomplete.

I feel that God put this essay in my path, and underlined it with a giant heavenly highlighter so I would read it during this awful time when Jack has been suspended from school and coping with pain and biting his therapist. I am certain that God wanted to tell me that the way our family’s life is unfolding isn’t up to us. It isn’t a reflection of our failures. It isn’t a punishment. It is part of a bigger design, a greater plan.

Like the waves beating the North Shore, there is a stronger force at play behind life on earth than humans making choices and doing our best to live life, imperfectly. God knows how messed up my week has been. He is Jack’s Heavenly Father. He is mine.

I went to campus to teach my classes Tuesday morning, and I prayed, “I need thee every hour, for real. I need you completely. Please help me keep going today.” I walked into school feeling fragile. I stopped in a quiet hallway and called the ENT to schedule ear surgery. Dentistry will have to wait.

I taught my classes, and when I left the university to go to Charlie’s IEP meeting, I realized that the desolation was gone. I felt no sadness. I felt happy that the sun was shining, the sky was blue, and the mountains had snowy tops. I felt light and hopeful.

Charlie’s IEP was the best, easiest IEP I’ve ever attended. His teacher is phenomenal. The support and progress that he is experiencing at school are unmatched.

And then Truman pooped in the potty, an event a mere five and a half years in the making. I couldn’t believe it. It’s surreal to me that we may have finally done it. The tragic messy bowel movement years may finally be over. For fifteen and a half years we have never NOT had major toileting traumas with multiple kids.

But it’s practically springtime and a new day, and I think we have at long last turned a corner.

This, too, is part of God’s big plan for us.

Activewear

The strangest thing has happened to me.

I am really excited about working out. I go to the gym almost every day, and I do it without any sense of dread. It’s enjoyable. I look forward to it. I think my body is thanking me for moving it more. I feel better than I have felt in a long time, despite being old and lumpy.

This is why you should never say things like, “I hate exercise.” Because one day you will go to physical therapy for a back and hip problem, and you will figure out that being strong feels better than being weak, even though it requires a good deal of effort to be that way. Now I see why people go to the gym or run or play sports.

Once you have pushed through the initial sluggishness of inertia and the subsequent pain of working your dormant muscles again, you will feel so. much. better. This has been my experience.

And I am eating my prior words. I hated exercise. I loathed the culture of extreme fitness. I judged people who wore their activewear everywhere.

But now I see it. They’re moving because it feels better. There’s no more judgement. I understand.

This is possibly a life lesson I should’ve generalized a long time ago—not judging things I don’t have much experience with.

Also, I really need to stop saying never.

I once said I would never have a blog. I declared it. I stood by it. Until I started a blog. And five plus years later…

I also said I would never get married before age 25. I got married at 20.

Adamant declarations clearly don’t work out for me.

Things That Happened This Week

  1. It snowed, a bunch.
  2. I ate Cafe Rio with Jeff. We do lunch dates now.
  3. The physical therapist went from fixing my back to fixing my neck and now my knee, which is caused by my hip. Srsly tho.
  4. Jeff and I joined a gym, a previously impossible thing, now possible thanks to miracles.
  5. A person from the school warned me that Jack would likely be suspended from school because of behaviors.
  6. Jack was suspended from school because of behaviors.
  7. I lost a bunch of sleep over this development.
  8. I wrote a frustrated essay about why my nonverbal, disabled son being sent home from his special-needs school for being a person with special needs and related challenges is ridiculous.
  9. I showed it only to my writing group, who gasped, groaned, and laughed in all the right places.
  10. I had 700 conversations with the psychiatrist’s office, the university’s neuro-psychiatric hospital, the school, myself (in my head), Jeff, and God about the developments of the week.
  11. Jack went back to school the next day and was, according to his teacher, basically a peach.
  12. Henry made dinner one night, under duress. It was pancakes and sausage. He’s learning to do things, because I am teaching him to fish instead of giving him fish.
  13. Truman wore a pull-up that stayed dry, two consecutive days. Today, he’s in undies, and they are dry. And when he does a number two in the potty, he gets to buy a kid’s tool bench. This is big. Very big.
  14. It’s not a three-day weekend. This is good news for all the special-needs moms and dads out there.

Low Days

I seem to be averaging one day a week when I struggle to do basically anything. I feel as though I can plow through all my caregiver responsibilities all through the other days and the weekends (still not restful for us, yet), but it all catches up with me about one day in seven. Today has been that day.

I move at the speed of a sloth. I am as motivated and energized as a tranquilized bear. I have the aesthetic of a hermit. The thought of human interaction exhausts me. I can wade through laundry and cleaning the kitchen. I can slog through calls to doctor’s offices and the school nurse. But beyond that, I’m somewhat vegetative.

It doesn’t help that it’s a wet, grey day and I am putting off all the grading I have to do.

I wonder if this is part of the cyclical nature of enduring care-giving. It is an ongoing responsibility. Even with helps and supports, it is ongoing. And when the helps and supports get sick or have car trouble or take time off, the entire weight falls right back on us. When I sit and ponder on the endlessness of this, I get weary, and a little hopeless.

But if I acknowledge the sadness and the weariness, keeping my focus on just today, I can keep the spiraling thoughts away, for the most part. If I give myself permission to have a low-energy, blue kind of a day, I seem to recover. After approximately 24 hours.

Then I wake up the next day and get back at it.

Perhaps this seems like an odd thing to write about. Who talks about their lounge-wear/stormy/blah days? Well, I guess I do. I felt for a long time that these days were a sign of weakness. Now I see them as necessary. Perhaps not one in seven, but at least periodically.

Days like today make me glad I’m not a TV or radio personality whose job includes perpetual cheeriness. I can’t fake bubbly.

A New Day

I have calmed down considerably. The guys and I had a good night’s sleep, and I woke up refreshed enough to clean up the ten thousand diapers, five thousand hangers, and all the clothing from the entire closet that Jack and Truman shoved under the bed, behind the bed, on top of the bed, and next to the bed last night before bedtime.

Children shredding a room does offer the silver lining of allowing you to clean the shiz out of it, rather than simply tidying. I stripped the room to its bare bones, tossing a good amount, donating a bunch, laundering a lot, and simplifying the room even more.

I have the boys quilts drying outside which means they will smell like heaven. I have my window open a little, meaning I’m inhaling whiffs of heaven. Spring feels close, though it’s going to snow this week.

Jack is feeling better, because this is day four of his antibiotic. And Junior took them all to the park, so I am going to get on my knees now and give thanks.

Excessively Worn Out

Tonight, I return to this not-funny blog to write things. It’s been an emotional weekend for a bunch of reasons, none of which I will discuss here. Some were happy/thankful emotions, and some were the opposite. It was spectrum-y, you could say (as my cousin Melissa DOES say). Tonight the not happy/not thankful emotions seem to be winning.

Jack’s ear is infected and he has strep. He may have had it for several days before we got it diagnosed and treated. This is a recurring issue—my stupidity in figuring out when my nonverbal child is sick. He can be sick for the better part of a week because it’s really tough to distinguish between bad behavior and sick behavior. I seem to be especially dense in this area. I need a pediatrician to board in the basement so we can borrow his or her diagnostic and prescribing skills at all hours, including holidays.

And I’m assuming my brain is fried at this point, because a) I don’t care about anything and b) all the usual helps aren’t doing it for me. I did watch the complete 2011 version of Jane Eyre, which helped a little. I love it so. But otherwise, I’m an automaton. I’m basically dead inside.

By dead inside, I mean I have a list of about twenty-five points about special-needs parenting which I am ready to start shouting about. If I were Jack, I’d be looking for lamps to throw off the deck. I wouldn’t mind smashing something, but it sounds like a lot of work. And a big mess, and I don’t have me waiting in the wings to clean it up while I decompress elsewhere. I mean I do have me, but me doesn’t want to clean up any rage-messes that I make.

I’m not going to list the bullet points which are making me furious. It’s counter-productive. I will, however, close with a list of random observations.

  • Charlie is being so good. Since his last med bump, he seems to be less rigid, more flexible. He will pray at home and at Primary again. There were years where he refused to do it.
  • February is getting me down. It’s just blah, you know.
  • I am excessively worn out by the sensory demands and behavioral idiosyncrasies of three separate SN children. It’s like an insane joke—how can we make this woman’s life so bizarre and difficult that it’s laughable? Hahahahahahaha. Joke’s on me.
  • I have a stronger core and, because the exercises make me want to throw up, I’m eating less. It’s a good diet.
  • If anyone asks me to do anything at this point in time, anything besides stay alive and tend to my needy brood, I am going to close my eyes for a good ten seconds, exhale loudly, and try calling down lightning bolts and gale force winds.