The Good, The Bad, The "I REALLY Shouldn't Laugh at That:" Adventures in Relapses

This site is dedicated to the good, the bad, and the "I really shouldn't laugh at that."

Today we're going to discuss all three, because why not?

So, in December 2015, Kyle had a bilateral derotational osteotomy. This is fancy talk for "the surgeon broke both his legs, turned the bones around, pinned them together, slapped some casts on him, and went on his merry way."

It turns out there's a very small chance that kids with cerebral palsy (Kyle has ataxic CP) will relapse following this surgery.

I took this picture just a couple nights ago. I had noticed, when Kyle was digging for a toy, that his right leg looked a little...funny. But not the good kind of funny. The bad kind of funny that makes you go "Oh dear God, here we go again. Second verse, same as the first." So I had him stand up straight, feet together, legs together, and took a photo.

I sent that photo to my mom, who showed it to my grandparents, and all 3 confirmed they saw the same thing I did: Kyle's leg did indeed, look bowed. Again.

The next morning, I emailed the picture to his orthopedist and called to see if I could get him in. We're working on getting him in ASAP, but right now he's not able to be seen until August.

The doctor agrees, it appears Kyle has relapsed.

Now, a relapse isn't necessarily the end of the world. It feels like it is, but it isn't. We have a visual confirmation that he's likely relapsed, but we need x-rays to see how bad it is and what we need to do about it. In the extreme, Kyle will need ANOTHER surgery.

Because Kyle has, like his mother, terrible anxiety, we discuss the worst case scenarios together so we're prepared. So I sat Kyle down and explained to him what was going on and what might happen.

He cried. He was angry. Because of course he was. Wouldn't you be? I am, and it's not even my leg.

ANYWAYS. Finally, Kyle, being the amazing kid he is, told me that no matter how much he DOES NOT WANT another surgery, if the doctor says he has to do it, he will.

But he has conditions.

One of these conditions is that I am not allowed, now or ever, to recommend that he dress up as Frankenstein for Halloween.

I mean really, how unfair.

Mom's Tools for Staying Sane...ish

Whether you're like me- a work at home single parent-or not, we all need a break. But how, HOW do we get a break when our kids have issues typical kids don't? Having special needs kids can often make it hard to leave them with a sitter, so what do you do?

Some of us have family members our kids are comfortable with who can take them for short periods of time to give us a few hours' break (or maybe a night). Others don't- maybe they live too far away, maybe their family cannot handle their child's needs, maybe there's no family left. And even for those who have family to help out can't always turn to them for help- if you're in meltdown mode at noon and your family members are out of town, at work, or otherwise unable to help, what do you do???

Keeping in mind that my kids are higher functioning, so what works for us may not work for you, here's some ideas from Mom's Tools for Staying Sane...ish:

1. Pop in a movie the kids will watch, hand them a snack, and lock yourself in your room for the duration. Or until someone screams. Screaming should probably be dealt with by an adult. Probably.
2. Stay up an hour or two after the kids go to bed. Watch a movie. Drink some wine. Read a book. Take a hot shower.
3. If you're not a night owl, get up an hour or so before your kids (unless your kids are like mine and get up at 3 a.m. Then, by all means...sleep as long as you can!), and drink yourself some coffee or tea, watch the morning news, whatever.
4. Speaking of time to yourself, actually use that time for YOU. No, put down the laundry. Step AWAY from the sink. Don't you DARE lay out that kid's clothes yet! Bad, Mom, bad! Sit. No, really, SIT DOWN. Good Mom. Now, drink your coffee. Yes, it's hot. It's SUPPOSED to be hot.
5. Can't trust the kids in the living room alone? Okay, guys- quiet time! Everyone to your room! Yes, your OWN room. Because I don't trust you to let your brother live in one piece in the same room, that's why! Set a timer and no one is allowed out until that timer goes off. 
6. Separate. Bedtimes. Yes, really. The King goes to bed at 6:30. Taryn goes to bed at 7:30. Kyle goes to bed at 8:30. I get individual time with each kid so they are less likely to hang on me throughout the day, AND their bedtimes are early enough that staying up for a bit after they go to bed for myself won't kill me when they inevitably get up before the sun. 

Will those ideas work for everyone? Naturally not, but it's a starting point, at least. Every parent needs time to themselves. We didn't stop being ourselves just because we became parents. I have always needed time to myself- I get way more than just a bit cranky without it. What do you do to get time to yourself? 

I Saw You

I saw you today. I saw how flustered you were, how embarrassed you were.

Your precious little girl was screaming at the top of her lungs because she didn't understand that you had to pay for her toy before she could have it. She grabbed hold of the older woman behind her and tried to drag the woman towards the exit. Your eyes widened and you gave a horrified gasp as you raced after your daughter, apologizing to the woman as you gathered your child in your arms.

Another woman started in on that horrible rant. "Oh, give her to me! A day at my house and she'll never act like that again!"

"She's speech delayed," I heard you say. "She doesn't understand. She's in therapy. She's trying."

But the comments kept coming.

And I saw your exhaustion. I saw how tired you were, how worn down by this life. You needed a friend, a hug, and how I wish I could have provided that for you! But I was weighed down with my three children, our purchases, and their hyperactivity, because my son's birthday was today and they were hyper and excited. And I didn't say anything, and how I wish I had.

If I could go back half an hour to that store, I wouldn't let you leave without telling you. My oldest didn't talk until he was three. I still have days like the one you're having. My kids don't always get it either. And you're doing just fine. It's okay. Kids aren't meant to be perfect, anyways. No one is.

But mostly, I would like you to know I saw you.