This is long. Just something I felt led to write. It's kind of me rambling into the computer trying to process all my thoughts. It's a reflection. I'm not the best blogger, but there are times when I'm just compelled to write down my internal thoughts, to document something that happened, or to share a personal story. Sometimes, I write them for you. But most of the time, I write them for me. This one is for both of us.
I made Jonah go to the grocery store with me. (That right there should alert you to how this is going to go. Do kids and grocery stores ever get along well together?)
He was none too happy at the mere thought. He's started wanting to stay home by himself. And he thought today would be the day I'd let him, but there was no way. I'm not ready. "But Noah."
"But Noah's older."
"But not by much."
"But by enough."
The whole two minute trip, he fussed and pouted. When we got there, I told him he needed to take Noah's chair because I couldn't get his out (They are single file in the van, so his is blocked by Noah's). He told me he wasn't going to take it. He wanted his, and he was quickly losing it. When I said no, he started kicking, slapping himself, crying/screaming (although it could have been louder, and I'm thankful it wasn't). Without much warning, I took computer time, knowing it was likely to escalate the situation. But hoping on the small chance it would do the opposite. Ain't nobody got time or patience for all that. I hadn't even made it into the store, and I was no optimistic at how this was going to go.
I gave him one last chance to get in Noah's chair.
Now, let me tell you. Giving him this choice made me a tad nervous. A few weeks ago, he fell in the grocery store and hurt his wrist when he decided he'd walk. Then, I worried he'd complain halfway through our shopping that his legs were tired. And not just complain, but boycott walking by sitting in the middle of an aisle while I have a cart full of groceries. Or start screaming like he'd just done in the car and put on a show that would upstage any toddler.
But there was no way I was going to force him to ride. That could result in him operating a 450 lb vehicle and using it as a weapon. HA.
If he was already on the verge of pitching a fit like a toddler in the parking lot, I only imagined what he could do in the store.
Turning to him, I dropped down to his level, took his chubby little cheeks between my hands, and said, "Are you walking or riding." He wouldn't look at me. He was staring straight past me. "Answer now or I'm choosing for you."
"Walking." He stomped off. I muttered something, not that he could hear me, as I shut and locked the van, thankful the child is meticulous about looking fifty times from left to right as he crosses a street.
I don't know how to explain it, but I have serious grocery store anxiety when I'm alone. After everything we've been through, there's always worry and fear that someone is going to fall apart in the middle of the store or something. And it's usually Jonah. It's like walking on eggshells around your child, but knowing your steps need to be firm and leave impressions like a dinosaur stomping on the ground. Is that a good analogy?
There was no way I was backing down even if it meant I broke the eggshells. As terrifying as that idea was to me.
The Salvation Army guy was smiling, ringing his bell. I know he'd seen it all. We were in the first handicap parking space. "Good morning. Merry Christmas."
I smiled back, and for the first time since arriving, exhaled.
Jonah, I don't think he even saw the guy or cared. He. Was. Really. Angry. And marched ahead of me into the store. I watched him go the opposite direction of where I was headed without even paying attention to where I was. I wondered if he honestly thought he could just go where ever he wanted without me. Would he? It only took a second for him to figure out I wasn't following him. Nope. I knew his game, and I wasn't playing.
I think that must have made him even more angry because he pushed the cart in a passive aggressive kind of way. I did that thing with my eyebrow my mom used to do to me with a single word said in a whisper that's as cold as ice. "Stop."
None too happy, he did. Of course, that made two of us on the none too happy front.
We got to the bread section, and he wanted the opposite bread I had a coupon for. I caved and got both. Clearly, we were in a power struggle, and that was something I could give in on. He really liked the kind he wanted. The kind I had a coupon for was an unknown purchase, so I wasn't sure if he'd like it or eat it. We don't buy bakery bread often. Only on special occasions, so I hated for him to not like what we got when he wouldn't get it again for a while.
But then he wanted a different kind in addition to that, and when I said no, he went back to being grumpy—albeit civil. I huffed, thinking about how much more grocery shopping we still had to do. Thinking about how I wish I had made us all go as a family yesterday so Chad could have dealt with his antics, thus giving me a break for a bit. I'm with them 24/7. Then, for a minute, I considered what it would have been like if I'd just let him stay home by himself. Peaceful grocery shopping. Kinda. Because I would have been worried he and Noah would have killed each other while I was gone. This behavior was proof as to why there was no way I was trusting Jonah to be without adult supervision anytime in the foreseeable future.
In the produce section, he totally turned the corner. He wanted to pick the lettuce. I told him it was too high, but he could get the cabbage. I asked if he saw a scale, and he knew exactly where it was because Jonah's observant like that. He weighed it, and we spent some time there talking about how to figure how much that cabbage was going to cost. Suddenly, my worry about how long the trip was going to be vanished, and I would have been content to spend twenty minutes there in the produce section teaching my kid, with him eager to learn and being sweet. I wanted to preserve the mood he was in that exact moment forever. If I could bottle it, I'd do it. When Jonah is like that, I just want to squeeze him and never let him go.
It was like he was having fun, but then he realized he was doing math. "It's Thanksgiving break. Why are you making me do math?"
"Because it's fun, and it's necessary. I have a coupon, and I need to make sure I spend the right amount. You need to know that I'm not just picking up a cabbage. I'm rounding $0.48 to $0.50 and then I'm multiplying that by the weight on the scale, which was 2.5 pounds. The cabbage is $0.48/lb and we got 2.5 lbs. How much money is this cabbage going to cost me?"
Once Jonah got the answer he was proud.
"That's a great cabbage. A lot of cabbage. It better be good."
"Are you going to try it to see?"
"No." (He says he's allergic to vegetables. I had to try.)
I told him I needed an organic tomato. He couldn't find them, and finally, I showed him the label of one. "What does this say?"
"Organic tomato."
"Good. Pick out the best looking one."
He explained how he picks the best tomato. We reviewed the list, and he helped me pick the rest of the items I needed. When we passed the ice cream, he said, "Is that on your list?"
"I said, "No, but the temptation is always very real. We have to resist."
He laughed. "But Daddy has some in the freezer."
"I know. The temptation is very real, but I'm resisting." (Chad probably could eat two cartons of ice cream and not gain weight. I could eat a spoonful and gain ten pounds. That's not fair.)
The rest of the time in the store, he was PERFECT. Absolutely perfect. At some point, I said, "How are your legs?"
"Why are you asking me that?"
"Because I want to make sure you're okay."
"They hurt a little, but I'm good."
When we were checking out, he was putting the G2 that Noah gets through his tube on the conveyor belt. "That's a lot of Gatorade."
"Yep, sure is."
Then, he counted them, and I showed him how it was an area model, and he could use multiplication to solve it faster than counting each one. He said, "I failed my multiplication test a couple of months ago, but I think I could do better now." (He gets to make it up this week, so it was no coincidence I chose that skill in the grocery store.)
"How much do you think it's going to be?"
We made our guesses like we always do.
He helped me pay, and as we were walking out, a man had taken an empty cart with him. His wife said, "Why are you taking that?"
The guy laughed as he brought it back in, stopping us from exiting. "I don't know why I was taking this thing out there."
I smiled. "It makes a great arm rest."
He chuckled. "That must be it."
The Salvation Army guy was still smiling, ringing his bell. He laughed a little at the commotion, and when I made eye contact with him, it was like relief washed over me. "You have a great day."
"And you do the same."
It was amazing how things changed so quickly. How I'd gone into the store fearful and frustrated, but was leaving relieved, hopeful, grateful, and just plain happy.
And Jonah was too.
Of course that all could change in a split second or with the utter of one sentence. When we got inside and were sanitizing our hands, I said, "Don't forget about your ten minutes when you get home."
"I haven't forgotten that I lost the computer," his voice was calm, even, and completely reasonable. I think there may have even been a tinge of disappointment. Hopefully with himself. Hopefully, he was reflecting on how he could have made better choices.
"Good. Other than that little fit before we went inside, I really enjoyed grocery shopping with you, Jonah. Thank you for your help."
He smiled.
There's probably only one person who has a stronger will than him.
Me.
Jonah can be a perfect little angel. But he also struggles with behavioral stuff. We've been told it's secondary to mitochondrial disease.
There was a time when I wouldn't have dared step foot in a grocery store with Jonah alone. For more than a year, we couldn't ride alone in the car with him (thank goodness Chad had a work at home job that he could do from the car when needed). Our doctor told us we had to have two adults at all times. One to drive. The other to keep the driver and Jonah safe. Jonah would unbuckle his seat belt, hit, bite, kick, try to open the doors (thank God for child locks). Noah went through a similar phase, but not as bad.
There's a fine line to understanding it, to handling it. As a parent, to go through it over and over is traumatizing too. And so much is talked about with this disease, like gut dysfunction, dysautonomia, muscle weakness, sleep apnea, fatigue. But no one ever talks about the psychological stuff—how all this affects someone dealing with a chronic, life-threatening disease every single day of their life.
Imagine having zero control over your body, being hooked to machines to sustain your life, taking over 20 doses of medications/pills a day, to being hyper aware of every cough in Target—walking a different direction to avoid it—and then leaving early because you're afraid you're going to get sick. Sometimes, I think the temper tantrums and acting out are unavoidable, secondary to fatigue, but other times I think it's a power struggle—a battle of the wills. Sometimes, our attitude and behavior is the only thing in our lives we can control. Determining which one, making the right choice on how to handle it, is sometimes impossible.
Out of all the things that someone could judge, this is the scariest one. No doubt I screw up. Exposing how I parent what seems like normal kid behavior, but is so much more, takes courage. These are some thoughts that constantly run through my mind: Is someone thinking I am a terrible parent for letting him have the bread he wanted? Do they think I'm a terrible parent for sharing this? Are they saying right now what they would have done if they'd been me even though they have no idea what it's like to be me because this is just a moment in time? Should I have given him more punishment? Was it too much? Is the bag boy who goes to school with him (his school is grades 4-12) wondering why and how he can walk in the grocery store today, but uses a wheelchair at school?
It's hard to open up as a parent of a special needs child about the medical stuff that most people can see and understand. It's especially difficult to share something like this because so many people think they have the answers. We've tried pretty much everything, so I'm not asking for suggestions, criticism, or even praise.
I guess the reason my fingers immediately started typing this post when I sat at my computer (originally was going to be a Facebook status, but it's hella long), is when we can come out of a fit like that, it makes me feel like maybe, just maybe, I'm doing right by him. And documenting it allows me to capture the good and the bad, gives me hope during the next bad time that may not end quite so nicely, and also hopefully gives me a reflection point in a few years where I think, "Wow, we've come so far."
And who knew the solution to a battle of wills would be math? I'm not sure what the final score was for us, but I know we both won this one.
This week, as we reflect on things we're grateful for, I'm thankful for my boys and how far they've come—for this reflection point. And I want to let other people who are dealing with similar difficult children you are not alone—there's hope.
Now...book stuff...
Speaking of math, if you've read all this, you should know the Instafreebie giveaway for Heartfall is going on through the 23rd. $2.99-$2.99 = 0.00 ;)
I made Jonah go to the grocery store with me. (That right there should alert you to how this is going to go. Do kids and grocery stores ever get along well together?)
He was none too happy at the mere thought. He's started wanting to stay home by himself. And he thought today would be the day I'd let him, but there was no way. I'm not ready. "But Noah."
"But Noah's older."
"But not by much."
"But by enough."
The whole two minute trip, he fussed and pouted. When we got there, I told him he needed to take Noah's chair because I couldn't get his out (They are single file in the van, so his is blocked by Noah's). He told me he wasn't going to take it. He wanted his, and he was quickly losing it. When I said no, he started kicking, slapping himself, crying/screaming (although it could have been louder, and I'm thankful it wasn't). Without much warning, I took computer time, knowing it was likely to escalate the situation. But hoping on the small chance it would do the opposite. Ain't nobody got time or patience for all that. I hadn't even made it into the store, and I was no optimistic at how this was going to go.
I gave him one last chance to get in Noah's chair.
Now, let me tell you. Giving him this choice made me a tad nervous. A few weeks ago, he fell in the grocery store and hurt his wrist when he decided he'd walk. Then, I worried he'd complain halfway through our shopping that his legs were tired. And not just complain, but boycott walking by sitting in the middle of an aisle while I have a cart full of groceries. Or start screaming like he'd just done in the car and put on a show that would upstage any toddler.
But there was no way I was going to force him to ride. That could result in him operating a 450 lb vehicle and using it as a weapon. HA.
If he was already on the verge of pitching a fit like a toddler in the parking lot, I only imagined what he could do in the store.
Turning to him, I dropped down to his level, took his chubby little cheeks between my hands, and said, "Are you walking or riding." He wouldn't look at me. He was staring straight past me. "Answer now or I'm choosing for you."
"Walking." He stomped off. I muttered something, not that he could hear me, as I shut and locked the van, thankful the child is meticulous about looking fifty times from left to right as he crosses a street.
I don't know how to explain it, but I have serious grocery store anxiety when I'm alone. After everything we've been through, there's always worry and fear that someone is going to fall apart in the middle of the store or something. And it's usually Jonah. It's like walking on eggshells around your child, but knowing your steps need to be firm and leave impressions like a dinosaur stomping on the ground. Is that a good analogy?
There was no way I was backing down even if it meant I broke the eggshells. As terrifying as that idea was to me.
The Salvation Army guy was smiling, ringing his bell. I know he'd seen it all. We were in the first handicap parking space. "Good morning. Merry Christmas."
I smiled back, and for the first time since arriving, exhaled.
Jonah, I don't think he even saw the guy or cared. He. Was. Really. Angry. And marched ahead of me into the store. I watched him go the opposite direction of where I was headed without even paying attention to where I was. I wondered if he honestly thought he could just go where ever he wanted without me. Would he? It only took a second for him to figure out I wasn't following him. Nope. I knew his game, and I wasn't playing.
I think that must have made him even more angry because he pushed the cart in a passive aggressive kind of way. I did that thing with my eyebrow my mom used to do to me with a single word said in a whisper that's as cold as ice. "Stop."
None too happy, he did. Of course, that made two of us on the none too happy front.
We got to the bread section, and he wanted the opposite bread I had a coupon for. I caved and got both. Clearly, we were in a power struggle, and that was something I could give in on. He really liked the kind he wanted. The kind I had a coupon for was an unknown purchase, so I wasn't sure if he'd like it or eat it. We don't buy bakery bread often. Only on special occasions, so I hated for him to not like what we got when he wouldn't get it again for a while.
But then he wanted a different kind in addition to that, and when I said no, he went back to being grumpy—albeit civil. I huffed, thinking about how much more grocery shopping we still had to do. Thinking about how I wish I had made us all go as a family yesterday so Chad could have dealt with his antics, thus giving me a break for a bit. I'm with them 24/7. Then, for a minute, I considered what it would have been like if I'd just let him stay home by himself. Peaceful grocery shopping. Kinda. Because I would have been worried he and Noah would have killed each other while I was gone. This behavior was proof as to why there was no way I was trusting Jonah to be without adult supervision anytime in the foreseeable future.
In the produce section, he totally turned the corner. He wanted to pick the lettuce. I told him it was too high, but he could get the cabbage. I asked if he saw a scale, and he knew exactly where it was because Jonah's observant like that. He weighed it, and we spent some time there talking about how to figure how much that cabbage was going to cost. Suddenly, my worry about how long the trip was going to be vanished, and I would have been content to spend twenty minutes there in the produce section teaching my kid, with him eager to learn and being sweet. I wanted to preserve the mood he was in that exact moment forever. If I could bottle it, I'd do it. When Jonah is like that, I just want to squeeze him and never let him go.
It was like he was having fun, but then he realized he was doing math. "It's Thanksgiving break. Why are you making me do math?"
"Because it's fun, and it's necessary. I have a coupon, and I need to make sure I spend the right amount. You need to know that I'm not just picking up a cabbage. I'm rounding $0.48 to $0.50 and then I'm multiplying that by the weight on the scale, which was 2.5 pounds. The cabbage is $0.48/lb and we got 2.5 lbs. How much money is this cabbage going to cost me?"
Once Jonah got the answer he was proud.
"That's a great cabbage. A lot of cabbage. It better be good."
"Are you going to try it to see?"
"No." (He says he's allergic to vegetables. I had to try.)
I told him I needed an organic tomato. He couldn't find them, and finally, I showed him the label of one. "What does this say?"
"Organic tomato."
"Good. Pick out the best looking one."
He explained how he picks the best tomato. We reviewed the list, and he helped me pick the rest of the items I needed. When we passed the ice cream, he said, "Is that on your list?"
"I said, "No, but the temptation is always very real. We have to resist."
He laughed. "But Daddy has some in the freezer."
"I know. The temptation is very real, but I'm resisting." (Chad probably could eat two cartons of ice cream and not gain weight. I could eat a spoonful and gain ten pounds. That's not fair.)
The rest of the time in the store, he was PERFECT. Absolutely perfect. At some point, I said, "How are your legs?"
"Why are you asking me that?"
"Because I want to make sure you're okay."
"They hurt a little, but I'm good."
When we were checking out, he was putting the G2 that Noah gets through his tube on the conveyor belt. "That's a lot of Gatorade."
"Yep, sure is."
Then, he counted them, and I showed him how it was an area model, and he could use multiplication to solve it faster than counting each one. He said, "I failed my multiplication test a couple of months ago, but I think I could do better now." (He gets to make it up this week, so it was no coincidence I chose that skill in the grocery store.)
"How much do you think it's going to be?"
We made our guesses like we always do.
He helped me pay, and as we were walking out, a man had taken an empty cart with him. His wife said, "Why are you taking that?"
The guy laughed as he brought it back in, stopping us from exiting. "I don't know why I was taking this thing out there."
I smiled. "It makes a great arm rest."
He chuckled. "That must be it."
The Salvation Army guy was still smiling, ringing his bell. He laughed a little at the commotion, and when I made eye contact with him, it was like relief washed over me. "You have a great day."
"And you do the same."
It was amazing how things changed so quickly. How I'd gone into the store fearful and frustrated, but was leaving relieved, hopeful, grateful, and just plain happy.
And Jonah was too.
Of course that all could change in a split second or with the utter of one sentence. When we got inside and were sanitizing our hands, I said, "Don't forget about your ten minutes when you get home."
"I haven't forgotten that I lost the computer," his voice was calm, even, and completely reasonable. I think there may have even been a tinge of disappointment. Hopefully with himself. Hopefully, he was reflecting on how he could have made better choices.
"Good. Other than that little fit before we went inside, I really enjoyed grocery shopping with you, Jonah. Thank you for your help."
He smiled.
There's probably only one person who has a stronger will than him.
Me.
Jonah can be a perfect little angel. But he also struggles with behavioral stuff. We've been told it's secondary to mitochondrial disease.
There was a time when I wouldn't have dared step foot in a grocery store with Jonah alone. For more than a year, we couldn't ride alone in the car with him (thank goodness Chad had a work at home job that he could do from the car when needed). Our doctor told us we had to have two adults at all times. One to drive. The other to keep the driver and Jonah safe. Jonah would unbuckle his seat belt, hit, bite, kick, try to open the doors (thank God for child locks). Noah went through a similar phase, but not as bad.
There's a fine line to understanding it, to handling it. As a parent, to go through it over and over is traumatizing too. And so much is talked about with this disease, like gut dysfunction, dysautonomia, muscle weakness, sleep apnea, fatigue. But no one ever talks about the psychological stuff—how all this affects someone dealing with a chronic, life-threatening disease every single day of their life.
Imagine having zero control over your body, being hooked to machines to sustain your life, taking over 20 doses of medications/pills a day, to being hyper aware of every cough in Target—walking a different direction to avoid it—and then leaving early because you're afraid you're going to get sick. Sometimes, I think the temper tantrums and acting out are unavoidable, secondary to fatigue, but other times I think it's a power struggle—a battle of the wills. Sometimes, our attitude and behavior is the only thing in our lives we can control. Determining which one, making the right choice on how to handle it, is sometimes impossible.
Out of all the things that someone could judge, this is the scariest one. No doubt I screw up. Exposing how I parent what seems like normal kid behavior, but is so much more, takes courage. These are some thoughts that constantly run through my mind: Is someone thinking I am a terrible parent for letting him have the bread he wanted? Do they think I'm a terrible parent for sharing this? Are they saying right now what they would have done if they'd been me even though they have no idea what it's like to be me because this is just a moment in time? Should I have given him more punishment? Was it too much? Is the bag boy who goes to school with him (his school is grades 4-12) wondering why and how he can walk in the grocery store today, but uses a wheelchair at school?
It's hard to open up as a parent of a special needs child about the medical stuff that most people can see and understand. It's especially difficult to share something like this because so many people think they have the answers. We've tried pretty much everything, so I'm not asking for suggestions, criticism, or even praise.
I guess the reason my fingers immediately started typing this post when I sat at my computer (originally was going to be a Facebook status, but it's hella long), is when we can come out of a fit like that, it makes me feel like maybe, just maybe, I'm doing right by him. And documenting it allows me to capture the good and the bad, gives me hope during the next bad time that may not end quite so nicely, and also hopefully gives me a reflection point in a few years where I think, "Wow, we've come so far."
And who knew the solution to a battle of wills would be math? I'm not sure what the final score was for us, but I know we both won this one.
This week, as we reflect on things we're grateful for, I'm thankful for my boys and how far they've come—for this reflection point. And I want to let other people who are dealing with similar difficult children you are not alone—there's hope.
Now...book stuff...
Speaking of math, if you've read all this, you should know the Instafreebie giveaway for Heartfall is going on through the 23rd. $2.99-$2.99 = 0.00 ;)
I hope you have lots of teachable moments this week with your kiddos minus the temper tantrums. Take time to reflect. Take time to appreciate the good things. Grow and learn from any bad stuff.
Be open to working through differences with the people you love.
It would have been easy for both Jonah and I to harp on the anger and frustration we were feeling in the early part of our outing.
But, instead, we chose to find some common ground in common core in the grocery store. ;)
Happy Thanksgiving Week!
JB
<3
Be open to working through differences with the people you love.
It would have been easy for both Jonah and I to harp on the anger and frustration we were feeling in the early part of our outing.
But, instead, we chose to find some common ground in common core in the grocery store. ;)
Happy Thanksgiving Week!
JB
<3
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