The worst advice my parents ever gave me…

Steve and I were talking about the kids the other day and we were talking about colleges and how we didn’t have anything vested in where they went to college. We’ve also repeatedly told the kids that when they grow up, they should do whatever makes them happy. They should pick a major and career that they love. Because we both believe that the key to happiness in life is doing what you love. I’ve mentioned before that I’m back in school on Fridays taking art classes. My parents never felt “Art” was a worthy major and repeatedly told me that I would never make any money doing it. Because to my parents, being happy in life is equivalent to making lots of money. And unfortunately, I listened to this advice and changed my major. This is probably my greatest regret in life. I love art. There’s something magic that happens inside me when I put a brush to canvas or sink my hands into clay on a pottery wheel. It’s soul satisfying. So every Friday, I’m back at the pottery wheel and every Friday I am reminded how much I truly love art. I’m considering going back for my master’s degree in art, although I think I need to wait until the kids are a little older and self sufficient.

Terrible piece of advice #2: There’s nothing wrong with the kids, they’ll be fine/outgrow it/ you’re making him have something wrong. My oldest child has severe sensory integration. He has an ADHD diagnosis, hypotonia (low muscle tone throughout his body) and dysgraphia. On some level, I’ve known since he was an infant that “something was wrong” but every time I voiced my fears, my parents said he’ll be fine/ you’re going to make something wrong etc, etc. He wasn’t diagnosed until he was five. And for those first two to three years after diagnosis my parents fought me tooth and nail about getting him therapy and help. They insisted nothing was wrong with him. They insisted therapy was a waste of time. At 10, he has come a long way, but is still receiving special education assistance. I can not fathom what his life would be like had I listened to that terrible piece of advice. Son #2 would even be worse off. He had significant developmental delays in speech and social areas. I didn’t wait or listen with him. He started various therapies at 16 months old. At seven, he is still receiving private therapy, but he no longer needs special education assistance in school. I am grateful every single day that I didn’t listen to their advice to ignore what I knew was something wrong.

Perhaps the absolutely BEST piece of advice my parents gave me was to dump Steve. When we met, Steve had a major heart condition, called Wofle Parkinson White Syndrome. He nearly died from it one night early in our relationship. His heart went into atrial fibrillation. After hours, I finally convinced him to go to the hospital by telling him I was calling 911 AND the police if he didn’t go. Two minutes after we walked in the door of the hospital, Steve had a blood pressure of 86/84 (no blood pressure) and a heartbeat of 320 beats per minute. Every available nurse, doctor and paramedic was in the room trying to save him. At one point, I heard two nurses saying he wasn’t going to make it. Steve was finally properly diagnosed a few weeks later. He had surgery later that year to correct it and now has normal heart function. My mother constantly told me “You should NOT be involved with anyone with a medical condition.” What was truly behind my parents motivation was that Steve did not come from a wealthy family. And the real reason was that he wasn’t rich. He was from “the other side of the tracks.” I am so grateful Every. Single. Day. that I ignored this advice.

I hope that I never give my children advice based on my own baggage or motivations. That my judgement is not clouded by my own aspirations for them, but by what is truly best for them. So how about you? What was the worst piece/pieces of advice your parents ever gave you?

 

That baby stole my dingo!

Ok, no dingo stole my baby or vice versa. But damned if son #2 didn’t run up and steal my melted chocolate chips and raisins. Then he ran with it, snarfed it down and grinned at me with brown, chocolaty teeth. When he gave it back it was empty. That’s about how the whole day has gone.

No coffee today because Steve broke up with espresso maker. The appliances and electronics get really ticked off when he leaves them for a new, shiny gadget. Now the espresso maker refuses to produce anything coffee-like. Yesterday it made brown water that tasted like ass. If the espresso maker could walk, I’d be suspicious it had been in the bathroom.

Son #1’s teacher stopped me in the halls today. I was already wanting to send him off to military boarding school after this morning and apparently, so is she. Sigh. We had to have the “you really might want to think about those ADHD drugs” conversation again for, like, the thousandth time. I want to scream “I KNOW! I KNOW! YOU TRY LIVING WITH HIM!” And yet I continue to fight against the drugs even knowing that in all likelihood, it would make my life a LOT easier. Sigh.

The school nurse called me twice and keeps insisting that son #1’s hip should be healed, since it’s been 3 months. I had to say multiple times, THE DOCTOR SAID NO RUNNING, NO STEPS, NO PE, NO SPORTS UNTIL WE SAW HIM AGAIN. And she kept saying “But for how long? It MUST be healed by now.” GAAHHH!! I just told you! SIX WEEKS! “But that’s three months.”she’d say. Like the answer is somehow different because she’s said it’s been three months. I’m not answering the phone anymore. People make me crabby.

Pain is making me crabby too and I haven’t slept in 3 days. I toss and turn all night and my ribs hurt. I went for the bone scan yesterday and got all radioactive. Then they put me on a table and into a machine. When she lowered the giant plate containing the geiger counter to within a half inch of my nose I said “Uh, they give me ativan for MRI’s! This thing is REALLY close to my face! I need AIR!” Of course, obviously I had air but still. I had to close my eyes and try not think about it. Freaking out in front of son #2 would be bad. So I tried to pretend my blood pressure hadn’t shot up and I wasn’t imagining being crushed by a giant geiger counter. And I knew it was only in my head that the air around me was all hot and I was suffocating. But still. I coulda used the ativan. No one mentioned that was going to be like an MRI.

 I don’t think I mentioned that several months ago son #2 developed a complex verbal tic. We made the rounds with speech therapists, pediatricians and the neurologist. We’re in “watch” mode. I work in his classroom and there is a child in there with Tourette’s syndrome. There is also another child in the class that has recently developed a verbal tic and it drives me crazy. Two days ago son #2 came home with that same tic. It sounds like a cross between a pig grunting and a dog growling. It makes my skin crawl. My first thought was “No. EFFIN. WAY.” We were told not to point out the other tic, but there is NO WAY I can live with this sound.  After about the tenth time he did it, I said “I know <other child> makes that sound, but I do not want you making that sound. It will become a habit.” (I worried it might already be too late.) Son #2 then pointed out that the child with Tourette’s makes a sound and then stretches his neck but the one making the pig sound just made the sound. I thought it was a very astute observation. He’s done it a few times since we talked, but I keep reminding him. This morning I was teaching art in the classroom and saw that son #2 is sitting NEXT to the child with the pig sound tic so that’s probably why he picked it up. I told the teacher he had picked it up and she said she would move him starting tomorrow. Because I need more to worry about like I need a hole in the head. So let’s hope the grunting sound will stop. Because otherwise I’m going to have to go back to the neurologist and have him evaluated. And I might start screaming and never stop.

So that’s been my day. I got my chocolate swiped, no coffee, and the kids are killing me. And the fact that other human beings are alive today annoys me. Seriously. Don’t even look at me. You’ll piss me off. I need coffee.

 

How to destroy you inner chi in 2.3 seconds…

I took myself out tonight. I got a babysitter and decided to escape for a little while. It’s always hard when Steve is gone and this week has been particularly hard because son #1 has been uncontrollably hyperactive with ZERO impulse control. I just want to start screaming and not stop. My brain feels claustrophobic inside my head when he’s like this. So anyway, I went out. I shopped a little. Had a little dinner. Then that nagging voice in my head reminded me that I haven’t been to the gym in three weeks. The other nag in my head pointed out that I LIKE breathing and any workout could jeopardize that. Crushing chest pain ALWAYS ruins my day. So the nags negotiated a deal whereby I would try riding the bike for a bit and see how that went. I lasted 15 minutes before the sharp searing hot poker through my chest and back let me know I should quit while I’m behind. I went and sat in the hot tub and that relieved some of the pain. I was feeling pretty relaxed and had found my inner chi again. I had coffee, listened to Jimmy Buffett, started reading a novel and all was right with the world.

I should preface the next part by saying that when Steve is out of town, the house stays SPOTLESS. I can not stand to have any mess. Mess makes me feel disorganized and out of control so I keep it really clean. I don’t even let a single dish hit the sink. So imagine my blood pressure when I get home and there is a sink FULL of dishes. I almost went postal. The kids had used SEVENTEEN CUPS in 3 hours. I was FURIOUS. All my good chi was immediately destroyed. I’ve been walking around with my teeth clenched and my head pounding trying to calm down. Then I went upstairs and son #1 was IN MY BED with clothes he had been wearing while playing in the sand and mud. There is a whole bunch of sand and mud all over my clean, white sheets. Seriously. I am trying so desperately not to go COMPLETELY POSTAL.

There are so many days with this kid that I truly wish I was a drinker. I could be three sheets to the wind right now and not care that my bed is sandy, the kids’ rooms are a mess and I had to ruin my chi by doing dishes. No, I couldn’t just leave the dishes until morning. I would have thought about them all night. And dreamed I was doing them over and over. Better to just do them and get it over with. So I’m just hanging out here waiting for the meds to kick in. I told the babysitter to come again tomorrow. And tomorrow night I’m not coming home until AFTER they are in bed. Even if I have to sit in the driveway with my book and Jimmy Buffett.

 

Seriously God, me?

You know the sensation where you want to start screaming and not stop? Where you’re pretty sure if you just let yourself cry or scream, you’ll come to again rocking back and forth in the fetal position in the corner? I’d almost say I’m having an anxiety attack, except I know I’m not. I know that I am merely visiting my limitations. Well, I’m not only visiting them, I’ve overstayed my welcome and my limitations are threatening to throw me off the nearest cliff. Ever felt like that? No? Ok maybe it’s just me….

I remember so clearly when my oldest son started crawling. The thing about a baby crawling when they’re only 6 months old is that they don’t have the sense yet to know that most things around them can be dangerous. They do not know if they pull themselves up onto a table and crawl across it, they will fall off when they get to the end. Edges/ gravity/ falling are all meaningless to them. They don’t know that pulling up on shaky things will result in shaky things falling on them. They do not know that eating absolutely everything they find will cause choking. It’s like they’re on a suicide mission. The only way to keep them safe is to be vigilant EVERY second of EVERY day. It was even worse when he started walking at 9 months old because then he could move even faster. And reach more things. And try to kill himself every second of every day. I remember so clearly the feeling of NEVER being able to relax. I always felt on edge because he was always trying to get into something. Always trying to climb on something. Always trying his best to not make it through the day in one piece. As a baby I thought it was because he just hadn’t learned that actions have consequences. That the world must obey the laws of gravity. That he is not invincible. That he can fall. That it was no accident I caught him before he almost killed himself. Again. And yet, he’s almost 10 years old and he’s learned none of these things.

I just locked myself in the bathroom and had a good cry. In the ensuing years since he learned to crawl and walk, he did learn the hard way that occasionally gravity stepped in. That occasionally if you teeter on the edge, you will fall in. That sometimes he could get hurt. But not usually. He’s a complete amnesiac. So he’d need to test again, just to make sure Newton wasn’t lying and gravity was still paying attention. To be fair, his sensory integration problems translate to a child that can not feel the effects of gravity, or rather his brain can’t process it properly. His sensory issues mean that he is not able to feel where his body is in space. That he does not have good balance because his nervous system can’t read signals that he’s tilting or leaning like yours and mine. In short, it means that he’s still very much like that 6 month old baby because his brain doesn’t process that he might fall. Or that he’s leaning. Or that the wheelchair has come up off the ground and he’s in danger of tipping over. He brain doesn’t tell him that he’s rolling himself so fast on the slick floor that if anything is on the floor or the wheelchair moves right or left just the slightest bit, that the wheelchair will flip over or tip. He’s totally unaware of moving up too close behind people or doors. Or that suddenly spinning himself right or left will have consequences such as objects in the way or people walking behind him. It’s not just because he’s in a wheelchair. He’s ALWAYS like this. It’s just the consequences as he’s grown older aren’t usually dire.

I’m pretty sure my head is going to explode or I’m going to throw up at any second. I’m having nightmares about him laying there bleeding. Hideous nightmares that wake me up in a sweat and then I can’t go back to sleep. I do not know how I’m going to keep this child safe. How am I going to get through the next few months without him severly injuring himself and me losing my mind? It’s exactly like when he was a baby. I tell him to stop, but he just charges away from me as fast as he can, hell bent on killing himself. His impulsivity is going to be the death of both us.

The only time I am able to relax is when he’s finally in bed for the night. Although even then, he keeps scooting to the edge of the bed and then wakes up surprised yelling “WHOA!” when he almost falls out. Sigh. So every night I drag him all the way to the wall and hope he doesn’t keep trying to test out the laws of gravity. And every day I hope that this child will make it through yet one more day with maiming or killing himself.

I believe that God is up there in heaven deciding who the parents will be of each and every child. I do not believe they are randomly assigned. I see other parents, such as my friend Shari, who has a son permanently in a wheelchair and I know in my heart that I would not have been nearly as good of a parent as she and her husband are to that child. They are the perfect parents for him. Like they were chosen. And I know in my heart, that God thought that *I* would be the perfect parent for this child. I know that most people could not handle a child like this. I see parents with other children sometimes and think I could do ten of those kids with both hands tied behind my back. But there are days, like today, where I turn my face to heaven and go “Seriously God, me?”