- Even though you’re not technically aged, your knees might start falling apart. Yay.
- You inwardly feel like you’re twenty, but actual twenty-year-old people think you’re an old person.
- You might have a child who is the same age as the characters in the YA novels you like to read. You know, the characters that are running around having adventures and innocent romances and complete, complex lives outside of their home life? It’s frightening to me.
- Thirty percent of your waking hours will be devoted to shopping for food to feed all the people. Or thereabouts.
- This is the age you will likely start to be grateful you have religiously worn sun screen on your pale, ginger-skinned face every day for the last twenty years.
- Time moves more quickly than you thought it would at age twenty-three, possibly because you are so busy all the time and have more people to take care of than yourself.
- At this point, you may decide that if you’re going to eat junk food, it had better be really really super high quality junk food, like the dark chocolate/almond/sea salt bark Jeff and I have hidden in my bureau. Fun size candy bars, on the other hand? No and also heck to the no.
- Your parents may begin to slow down, or get sick, or face ongoing health struggles. This is not an easy thing.
- Your body begins a slow, creeping, inevitable downhill journey to entropy, while your inner self continues an upward trajectory of deeper understanding borne of experience.
- If there is any way to get out of seeing a kid movie called Boss Baby, you will have no shame in using it.
Over the weekend, Jack took a pair of scissors to my laptop and iPhone cables. They were in bits beside my nightstand. I said a swear. Thankfully, no lamps were harmed in this scenario.
I saw an article today in my news feed with the title, “The Hidden Costs of Special Needs Parenting.” Or maybe it was “The Hidden Costs of Disabilities Parenting.” I forget. Whatever. I scrolled past it because I ALREADY KNOW THE HIDDEN BAJILLION COSTS OF BEING A SPECIAL NEEDS PARENT THANK YOU VERY MUCH THE END.
In the event that this headline piques your interest, the hidden cost of raising ye olde complex child probably looks different for each special needs family. The needs are different, hence the esoteric supplies, services, and other expenses are too.
For us, this is what it means:
It’s replacing the useful household things that Jack has intentionally wrecked. It’s buying him new clothes that he works over with a pair of scissors before the first wearing. It’s the new remote control we must periodically buy for the TV, because the old one was smashed to bits on the hardwood when Jack got mad. It’s the new vacuum I buy every 8-9 months because Jack has loved the previous vacuum to death. It’s the hand soap that I basically purchase every other day of the entire year. It’s the specialized food and the food wasting.
It’s a whole lot of other things that I don’t even want to talk about, because what I’d rather be doing is going on a tour of Scotland right now with all the money that I DIDN’T spend on hand soap and vacuums and new charging cables and beige kid food.
Okay, I just read through what I wrote to this point, and I’m honestly feeling ungrateful.
We actually DO have a lot of disabilities-related expenses. But we also have a lot of disabilities-related resources and gifts.
Jack HAS disability services. He has health insurance and therapy and respite care. His prescriptions are covered.
We have jobs and can afford to replace all the crap Jack breaks.
We can buy the food that he and the other boys *might* eat, or *might* dump out on the floor.
We have a free and appropriate education available for our boys, meeting them at their ability level.
We have Moana, which we are recently watching AS AN ENTIRE FAMILY (#miracles) on repeat.
We have peanut butter and chocolate chips and fresh produce and milk and eggs and hummus and Havarti on rice crackers (mmmmm).
We have flushable wipes for the newly-minted, potty-trained child, so he can be both independent and clean.
We have cars that let us take Jack on rides and take ourselves to work and the gym and everywhere else.
We have books and phones and desktop computers and laptop computers and Netflix and picture books. We have PBS and a DVR. We have the Jack Cam, which makes our lives better.
We have clothes to wear. We have a roof keeping out the rain. We have our church at the bottom of our street. We have friends. We have family.
Basically, please ignore my whining about the super unfair hidden expenses in the raising of our unique boys.
We have everything.
Things that irritate me:
- Flowery posts and memes about “My daughter is my best friend,” or “God loves me so he gave me a daughter.” It feels exclusionary, like you’re not a real woman unless you have a daughter to complete you, or God doesn’t actually care about you since, you know, no daughter. Am I overly sensitive that this annoys me? I have sons, and only sons. This doesn’t seem like it should be a strike against me. Like if you can’t shop for dainty, feminine baby clothes, your life is lacking? You will never know true joy? I just don’t buy it. Also, no where is it written that only girl children can fulfill one’s life purpose, though the internet seems to enjoy perpetuating this myth. To be clear, I’m happy that moms love and celebrate their daughters. Now pardon me while I go online and buy one of those #momofboys t-shirts, take a selfie while wearing it, and PASTE my image on social media. It’s my own little resistance. Contrarians have to push back somewhere, somehow.
- The parental travail that is Boy Scouts. Ugh. Make it stop. When a boy gets an Eagle, it 90% shows his parents spent WAY TOO MUCH time and energy hounding their son about completing merit badges (and driving him hither and yon to all manner of merit badge classes at 8:00 am on Saturday mornings), 10% that the boy actually cared about it and learned from it. This has been my experience and I am ready to go on a speaking tour around the nation, clarifying these points to prospective scouting parents. Just kidding, I’m going to remind my son for the 87th time that he needs to get out my recipes and create a grocery list so he can earn his cooking merit badge, which he has no interest in doing. Then I’m going to take him to the store and supervise the cooking. We may complete this requirement in three years time, pending attitude problems (his and mine).
- Terrorists. For heaven’s sake, does the world not already have enough problems with mental illness and starvation and substance abuse and natural disasters and cancer and illiteracy and dysfunctional families? Now we need to invent tragedy and heartache out of nothing but deranged hate? #NottodaySatan. I rebuke you. You will rue the day. I will love my neighbors and my family and people who voted opposite of my beliefs and people who worship differently or who don’t worship at all.
- That Jack has no regard for the sanctity of hand soap. We can’t keep it in the house. His favorite pastime is opening a new bottle and pouring it down the drain, and then repeating this throughout the house. It’s irrational how infuriating this is to me. WE JUST WANT TO WASH OUR HANDS, JACK. The end.
- When people go online with lengthy posts about how annoying something is. Oh wait…
Things that Replenish Me:
- Writing Group Thing.
- Working out. I became one of those people.
- Seeing my children grow and learn.
- Movie dates with Jeff.
- Praying in my car while watching birds fly in formation from the fields into the sky, against the backdrop of the mountains.
- Bedtime, and a clean kitchen.
- Achieving an occasional deep-seated sense of rightness, of peace, of equilibrium with myself and my outer life.
A new week is here, along with structure, routine, and a somewhat healthier me (meaning, I’m beginning to recover from my plague).
When Jack has his helpers, when I get to be active, when SPRING shows up and wrests our winter blahs away, we are a living manifestation of homeostasis.
Don’t question if will last. Don’t wonder why it never lasts. Don’t think about how long until the lovely balance tips, erodes, smashes on the pavement. Just breathe it in and savor it. This, right now.
Even as I wrote these words, I was summoned downstairs where Jack was beginning to trash the kitchen when he was told he could not eat ALL the brownies in the pan. He pulled my hair, kicked me, and tried to bite me before I wrestled him to a prone position and waited for Shandon to retrieve Jeff from his office. Because of brownies and limits and not getting what he desperately wants (It turns out he wanted cheese, not brownies. So much drama over this minor distinction).
Last week, I graduated from physical therapy. I left with a surprisingly NOT ugly t-shirt, which Henry instantly appropriated. Teens. Wow. I roll my eyes right back at them.
Anyway, the physical therapist helped me bring my back and hips and neck into a homeostatic state. Along the way, I decided I wanted to change my sedentary and sugar-consuming self, and I acknowledged that making one’s body a priority ISN’T selfish but IS vital for being a caregiver. Also, it improves one’s will to live, so there’s that.
It was one year ago this week that I began my non-ironic spiritual journey. My friend and mentor, Jana, guided and counseled me on a path that brought me to a point of spiritual equilibrium. It’s a spiritual high ground (not the HIGHEST ground, but higher than I was before), a place of centeredness and liberty from pervasive fears. All of these terms sound new age-y and clichéd, but they are the best actual words I know of to describe what really happened to me, and which has stayed with me.
I didn’t know how much I needed to reach homeostasis until I reached it. And then I wondered how I lived so long before without this symbiosis between God and me. This was the reward of true meekness, born of year after year after endless year of raising my unique children with their constellation of challenges.
My mother-in-law brought dinner to us yesterday, along with their old grill on which to cook the steaks. Our grill, may it rest in peace, did not survive many years at Jack’s hands. He threw it off the deck a dozen times, even after we first tied it with rope to the deck, and then chained it. Jack is enterprising as well as persistent. Joyce also brought a made-from-scratch chocolate cake with homemade chocolate frosting to celebrate Jeff’s birthday, which is this week. This felt like a birthday present to me—not making dinner, nor baking an amazing cake, but still getting to enjoy it and watch Jeff and the boys enjoy it.
The old me would have loved doing these things. I adored baking. I loved hosting dinner parties. Both prospects make me feel tired and irritable at this point in my life. The old me didn’t have the compounding responsibilities of a potty-training five-year-old on the autism spectrum, a nine-year-old obsessing and sobbing about various things, and Jack. Now I long for simplicity. It’s all I want.
I do not think this makes me old. I think it makes me pummeled, like sea glass.
Sea glass is pretty.
- 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.
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.
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:
- I’m really glad I didn’t just give birth (apologies to all moms in labor or postpartum. I’ve been there. Four times).
- Charlie is the happiest, most thoughtful and genuine kid. My life would be a smaller, duller place without my third son.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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.
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.
- 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.
- 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.