No, this isn't about every muscle in my body (although it could be after this last week with my successful attempts to finish a running scavenger hunt). It's about the fact that Teddy's arm has what appears to be a burn mark.
I say appears because we don't know exactly when it happened, but we have a pretty good guess. He's extremely interested in just about everything, including the grill, and is mighty fast in transitioning from happily playing somewhere to being somewhere else without warning. As we were grilling lunch, we thought he only touched the handle of the grill before we redirected him. (That's my polite way of saying that we ran toward the grill and pulled him away while shouting "No!")
Apparently his arm also touched where the grill was hot, hot enough to leave a burn mark on his arm. We didn't put cool water on it right away or burn cream because we didn't know he was hurt until several hours later. He spent the afternoon playing at the Children's Museum with his babysitter and brother, and we noticed the mark when we were doing bathes tonight.
These are the moments that I feel like a horrible parent who failed her child. It's not just because I couldn't keep him safe but because I couldn't make him feel better and fix the wound. I hate that I don't know he's hurt until after the fact.
This is one of those situations where his lack of communication skills and incredibly high pain threshold work against him. I'm not sure whether the pain registered enough, but we didn't see some form of communication from him because we were distracted by trying to ensure his safety. Or, it's possible the pain didn't register for him because of how his brain processes.
Regardless, it makes me feel like a cruddy parent and serves as a reminder that:
1. He needs even closer supervision (as in he's probably only safe if we're carrying him and then he's likely to hurt both of us).
2. We really need to get in the habit of checking his body routinely for marks, skin breakdown or other signs of injury or illness.
Showing posts with label guilt. Show all posts
Showing posts with label guilt. Show all posts
Sunday, October 1, 2017
Sunday, April 24, 2016
Siblings
One of the first discussion points for us after Teddy's diagnosis was centered on AJ and what Teddy's diagnosis meant for him. It was easy to immediately jump to thoughts of guilt and worry that AJ wouldn't have a typical brother and that meant he would miss out on so much and shoulder responsibility that he shouldn't have to. Even during those first conversations, I tried to look for the positives of how Teddy's diagnosis would affect AJ.
This past week I had the opportunity to attend the Circles of Life conference and spent two days listening to speakers on a variety of topics from financial planning to advocacy for children with different needs. Overall, it was a really good conference, although I'll admit it was a bit difficult to be there and fully embrace the fact that I have a child with special needs. (That was actually one of the reasons why I wanted to attend.) I would have been much more comfortable attending to represent the non-profit service organization that is my employer, but my job was to be there as Teddy's mom.
I met some wonderful people, saw some amazingly cute kiddos and heard some pretty awesome stories. The final session included a guest panel of typical siblings who attended the conference with their families. These teenagers shared their thoughts on a few topics, including the hardest part of having a sibling with special needs:
This past week I had the opportunity to attend the Circles of Life conference and spent two days listening to speakers on a variety of topics from financial planning to advocacy for children with different needs. Overall, it was a really good conference, although I'll admit it was a bit difficult to be there and fully embrace the fact that I have a child with special needs. (That was actually one of the reasons why I wanted to attend.) I would have been much more comfortable attending to represent the non-profit service organization that is my employer, but my job was to be there as Teddy's mom.
I met some wonderful people, saw some amazingly cute kiddos and heard some pretty awesome stories. The final session included a guest panel of typical siblings who attended the conference with their families. These teenagers shared their thoughts on a few topics, including the hardest part of having a sibling with special needs:
- The stares. It's don't like it when other people make fun of my brother for who he is.
- It's hard not to have a sibling who understands you and who relates to you.
- I understand it's not favoritism, but it's hard when my sister needs all my parents' attention.
- It makes me more understanding of others. I've learned not to judge other people because of how they look or act. I have more patience with people. I'm more accepting of other people. I'm a better person.
Tuesday, November 24, 2015
Guilt
All parents feel guilty at some point, I think. Sometimes, it's probably warranted. And sometimes it's over things that are far beyond our control.
As it became clearer that Teddy wasn't a typical child, the guilt and worry kept creeping into my mind.
Was this because of my Crohns and medications I took during my pregnancy? I had followed my doctor's orders, which were even more conservative than with my first child. (I had even participated in a multi-year study following my first son's birth to check the possible effects of the medication.)
Maybe it was the fact that his umbilical cord was wrapped around his neck when he was born. Maybe we should have been more concerned that he was blue at birth and advocated or did something differently.
Or perhaps it was that moment when he tumbled out of a chair, and I learned he could indeed move his body that way instead of being a motionless baby. Or perhaps the time his big brother "helped" him out of the chair by pulling him down into the over-sized stuff animal that served as a landing pad that was never intended to actually be used.
Was there something we did wrong? Something we could have changed?
After getting a diagnosis, it alleviated pretty much all the guilt associated with how and why Teddy was Teddy. (Don't get me wrong - there's enough guilt for other things because I'm still human.) In many ways, it was freeing to know this was how God made Teddy. It wasn't my fault. I hadn't caused this. It wasn't my Remicaid infusions. It wasn't me failing as a mother by having his cord wrapped around his neck (although I realistically had no control over that). And it wasn't those few times he tumbled.
It was Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. It was a genetic mutation of the PIGN gene. It was how God made Teddy.
There's been so much that's been difficult to accept (process is the word I use most often), but this relief was almost instantaneous with the diagnosis. For that, I am grateful. I had been making progress on accepting that even if Teddy's symptoms were caused by something in the past, there was nothing that could be changed aside from doing what was best for him in the present. Still, the diagnosis brought full closure for me on that aspect and made it easier to accept the "What's next? What's the best we can do for him now and in the future?"
As it became clearer that Teddy wasn't a typical child, the guilt and worry kept creeping into my mind.
Was this because of my Crohns and medications I took during my pregnancy? I had followed my doctor's orders, which were even more conservative than with my first child. (I had even participated in a multi-year study following my first son's birth to check the possible effects of the medication.)
Maybe it was the fact that his umbilical cord was wrapped around his neck when he was born. Maybe we should have been more concerned that he was blue at birth and advocated or did something differently.
Or perhaps it was that moment when he tumbled out of a chair, and I learned he could indeed move his body that way instead of being a motionless baby. Or perhaps the time his big brother "helped" him out of the chair by pulling him down into the over-sized stuff animal that served as a landing pad that was never intended to actually be used.
Was there something we did wrong? Something we could have changed?
After getting a diagnosis, it alleviated pretty much all the guilt associated with how and why Teddy was Teddy. (Don't get me wrong - there's enough guilt for other things because I'm still human.) In many ways, it was freeing to know this was how God made Teddy. It wasn't my fault. I hadn't caused this. It wasn't my Remicaid infusions. It wasn't me failing as a mother by having his cord wrapped around his neck (although I realistically had no control over that). And it wasn't those few times he tumbled.
It was Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. It was a genetic mutation of the PIGN gene. It was how God made Teddy.
There's been so much that's been difficult to accept (process is the word I use most often), but this relief was almost instantaneous with the diagnosis. For that, I am grateful. I had been making progress on accepting that even if Teddy's symptoms were caused by something in the past, there was nothing that could be changed aside from doing what was best for him in the present. Still, the diagnosis brought full closure for me on that aspect and made it easier to accept the "What's next? What's the best we can do for him now and in the future?"
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