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Monday, August 4, 2014

Osoko Yemna

Last week, Alex had hip surgery. He had a tear in part of his hip that they had to repair, and extra bone that they had to shave off. The surgery took longer than expected because once the doctor got in to look at Alex's hip, he realized there is more damage than they thought based on the MRI. No one came to tell me that Alex was fine, things were just taking longer, so that was a little harrowing. When the doctor says the surgery will take 1-2 hours and it takes 3 1/2, that's pretty significant, if you're the one in the waiting room. But he made it through. 

We didn't realize the extent to which Alex would need help after his surgery. Thank the sweet Lord in Heaven my parents were here for a couple days to help out. Nana and Papu cleaned, cooked, shopped, played with the kids, fixed my curtains, did endless loads of laundry, took the dog for about 300 walks…they were completely exhausted by the time they left. Every time I passed a room, I was shocked that it was still clean. Because Nana and Papu were cleaning machines. At one point they said they can't believe how much work there is to do here, and how few people there are to do it. Namely, me. I said Yep. Welcome to my world. 

The first few days after his surgery, Alex couldn't move his leg by himself. He couldn't go into the bathroom by himself. He wasn't supposed to shower or get his wounds wet. He was pretty helpless, poor guy. While Mom and Dad were here, I was able to focus mostly on what Alex needed, so that was good. Despite my generous offer of a permanent air mattress in the basement, my parents had to go home after a couple days here. So then the real challenge began. 

Alex has an exercise machine for his leg that he has to use three times a day for an hour and a half each time. I help him get his leg into the device and then he's on his own, to lay there and have his leg exercised by the machine. When he's not doing that machine, he has PT exercises he has to do twice a day. When he's not doing that, he has to be hooked up to this fancy ice machine (which I'm constantly buying bags of ice for, carting the bags upstairs, and emptying them into this crazy machine, then getting Alex's hip placed just right into the big ol' ice pack) to ice his poor, bruised hip. When he's not doing that he has to wear his hip brace. And whenever he is laying down, he needs to have calf compressors squishing his legs so he doesn't get a blood clot. And he can't get any of this done on his own. So Nurse Carrie is on duty. The machines are all very heavy and full of velcro. I'm so tired of fighting velcro. It sticks to everything it's not supposed to stick to. 

Then there are the meds. Alex can't ever remember when he takes his medicine (his brain is still foggy)-- either the pain meds or the regular vitamins he's on-- so I have to keep on top of that too. He's a good patient though. He does what I tell him to. He knows I'm his source of food. He texts me when he needs something. I call him from my cell phone when I need to ask him something and I'm downstairs. I say "Hello, this is Downstairs calling…" and he says "Hello, is this the Newsom Rehabilitation Facility?" when he calls me. We crack ourselves up.

Days before Alex's surgery, we were downtown Chicago with my brother and his family, having a fabulous day. We did so many fun things together, made really special memories. And then I realized my wallet had been stolen. Perfect. Because I need more stress. Perfect. 

Our darling children have been giving me a run for my money while Alex is out of commission. They sense weakness. They sense I'm at my wit's end. They sense I'm so exhausted that I don't have much fight left in me to make them do what they're supposed to do. I can't leave Alex for more than an hour because of his rigorous hip-py schedule, so we can't go anywhere or do anything. Our gracious friends have been helping, bringing us groceries and taking care of the kids when I have appointments. I don't often ask for help (stupid, I know) but I have been wracking my brain since Alex's surgery, trying to figure out who and when and where I can get help from for the kids. I'm calling in all my favors. Otherwise we may not all make it out alive from this post-surgery-end-of-summer-craziness.

We've also made some important discoveries about our boys during this time of fewer meds. We've discovered they legitimately need those meds. Without them, they can't calm down to sleep and they are very, explosively, irrationally impulsive. All the time. A few weeks ago when I started seeing that the boys were really struggling and all my "voodoo" (as Alex calls it) (I prefer the term 'alternative' or 'natural') wasn't really making a dent in their struggles, I began to feel like a failure. Like somehow the fact that we can't make it in life without our kids being on meds is a reflection on me and my obviously poor parenting skills. If I was a better mom, my kids wouldn't need meds, I kept thinking. But I talked to my support team (my parents, Alex, our therapist) and they all helped me realize that this does not have anything to do with poor parenting. This has to do with the fact that the kids have a chemical imbalance in their brains. This summer experiment shows us that the boys really do have ADHD. It gives us reassurance that they do need these meds in order to get the most out of life. At least right now. Hopefully someday we'll be able to go off of meds and stay off. 

I think the culmination of Alex's surgery and the insane amount of stress and busy-ness all on my shoulders has let me see more clearly that the boys need more help. The boys'  inability to calm down at night has been difficult for Alex and I to handle this summer. Their impulsivity and intense, angry, overreactive outbursts have been quite a challenge. And the outbursts have gotten more frequent as the weeks have gone on. The boys overreact to all kinds of little things, and while the tiny rages aren't as long and violent as they used to be, something has changed. The boys no longer demonstrate anxiety about having these mini-rages out in public. Being out in public is no longer a deterrent to difficult behavior. This scares me. No matter what we do, someone is always having some sort of total meltdown about something. If I take the kids to get ice cream. Or we go on a vacation. Or to the zoo. Or someone doesn't get the flavor of bagel he wants. Total meltdowns. I'm hoping that by being back on ADHD meds, the boys' impulsivity will be contained a little better. I'm hoping we can go on family outings again and not expect that there will be huge problems each and every time. I'm hoping the meds will help the boys regulate a little bit better. 

As long as I feel like I know for certain that the boys do actually have a challenge that will be helped by medication, then I'm ok putting them back on meds. I just don't like second guessing whether or not they have an actual diagnosis, like "do they actually have ADHD or is their impulsivity a byproduct of something else?" I just want to make sure I'm doing the best thing for each of the kids, not just lumping them all together onto bunches of meds. So this summer experiment has validated the fact that the boys do need some of these meds to help them function better.

All the boys are back on their sleepy med. Aidan is at a half dose. Tomorrow Ben and Jonah will start their ADHD meds again. I'm waiting on Aidan. I want to see what happens when school starts. He hasn't had the kind of impulsive outbursts that his brothers have been having all summer. And his appetite is better. And he has tried eating NEW THINGS!!! Things he NEVER would have tasted in the past. Cucumbers and poppy seed muffins and red grapes!! This is just incredible. Remember he was the one who needed feeding therapy a couple years ago to address his SPD surrounding eating? He was the one who ate ONLY Yoplait vanilla yogurt and Cheerios for an entire year? Now he is eating all kinds of things! Incredible. I'm not quite willing to give that up yet. I'm not ready to say he needs ADHD meds back on his plate. 

One funny thing-- funny in hindsight. Last night I finally had time to make a nice family dinner. I had a roast in the oven all afternoon, mashed potatoes, veggies. I laid everyone's plates out on the table, proud of my non-cooker self for making such a healthy dinner for my family. Alex is the chef in this family, not me. So meals have been less-than-exciting since Alex can't move. Anyway. I was proud of my hard work.

I went across the street to gather my children and greet our new neighbors who had just moved in. As I was chatting, Aidan came out of our house and yelled across the street that Ollie the Dog had eaten all our dinner.


I was torn between screaming bloody murder and just falling on the sidewalk laughing. I decided screaming might prematurely scare off my sweet new neighbor and her little children. She should at least have the opportunity to get to know me before she's scared out of my life. So I just laughed. Seriously. Only at our house. The dumb dog ate the whole darn pot roast, going to everyone's plate on the table and gobbling the meat up as if I never feed him. 

I went home. I gave the dog a very large time out. I made everyone else grilled cheese for dinner, thanks to a neighbor who had bought us bread earlier that day. Seriously. What else can happen at our house?

I feel like I have the Newborn Numbness. You know when you have a brand new baby and you're up every two hours to feed the little thing? Or maybe that's just when you have preemies. But since I don't know any different, we'll just assume every new mama feels that way. I have that level of brain-dead-ness because of exhaustion. One or two kids wet the bed every single night. Yes, I've called the pediatrician. And our holistic doctor. And we're doing everything they say, with one exception. My biggest bed wetter will not wear the tiny device used to train kids to wake before they pee. His anxiety and sensory issues make it impossible for him to agree to try this thing that will set off a super loud alarm every night as he is laying in slumber. At least one kid has a nightmare most nights. And there is always a shrieking human next to my ear at the buttcrack of dawn, yelling about how there is nothing for breakfast. 

Trying to remember everything for everyone, trying to keep everyone fed and clean, trying to keep the house running, trying to make sure my hubby remembers all his exercises and meds, trying to deal with the never-ending litany of mini-rages that fire up all through the day…

Brain dead. That's all I have to say.

My dad said today that he has a new diet for anyone who is interested. It's called the Newsom Diet. All you have to do is come and live at my house for a couple days, he said. He lost three pounds in 2 1/2 days living at my house and taking care of everything that needed to be taken care of. This doesn't explain why I am not a size 2, but whatever. Glad it worked for him!

I always try to look on the bright side, glass half full, all that jazz. But sometimes things just suck. Life is overwhelming. Having your wallet stolen is overwhelming. Having your husband go through surgery is overwhelming. Having kids with special needs is overwhelming. I get worried that this is as good as it gets. I tell myself it'll get better, easier, happier, blah blah blah. And I do know it will. But being stuck in the house with 4 warring children and an invalid husband and a roast-snarfing dog is not my idea of a picnic. Tomorrow's a new day. Hopefully with an hour of peace, as I go to my chiropractor appointment, knowing that Alex is tucked into whatever machine he is scheduled to be in during that hour, knowing that my dear, dear friends are making sure my 4 little monkeys are taken care of while I take a breath.

As I was expressing my eternal gratitude to my parents for everything they have done for our family this past week, they told me that in the native language of the African tribe we used to live with, Gbaya, there is a saying: "Osoko yemna." It means many thanks. And also that 'thank you' is not enough. 

Osoko yemna to my friends and family and therapists and doctors. "Thank you" is not enough, no matter how many times I express it. Thank you. Osoko.

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