It is that time of year...anxiety is running high

Sports have been a great distraction for Kal recently. We went to a hockey game last night and as you can see from the photo-all eyes and attention are focused on the ice. Although the team we were rooting for lost by quite a few goals (or touchdowns as Finn kept calling them) Kal never gave up hope and we stayed to the bitter end. What a great way to relieve a little stress...or redirect it anyway!

We had Kal's parent teacher conference this week and I must start by saying we really hit the lottery this year-Kal's first grade teacher (Mrs.) is amazing. She really gets Kal. Sometimes things are just meant to be. This wasn't a school "pre-planned" match up, let’s call it fate.

Kal has suffered from severe anxiety for as long as I can remember. When he was younger it was more challenging to figure out the root of what was bothering him, but now that he is older HE can usually make it pretty clear to us. One of Kal's strongest traits has always been his ability to express himself verbally. He began speaking at 8 months old and has never really stopped-he is a constant chatter box...which we LOVE! Some of Kal's worries have seemed a bit far-fetched at times and some make perfect sense (or at least we can understand where he is coming from). We have sought professional advice-some has helped and some...not so much.

Kal never really liked being dropped off at day care, but we thought that was somewhat normal. In pre-school he worried about "who" would pick him up each day. He is a smart kid and had the schedule memorized before he even set foot in the school (it was the same each week) but he began perseverating over who was picking him up. He would start in the morning by asking us and it would carry over to his teachers...all day long, repeatedly asking the same questions and all around who was picking him up. We met with a psychologist who suggested Kal keep a cardboard coin in his pocket with the name of who was picking him up that day written on it so that HE could answer his own question and wouldn't have to rely on others to provide the answer. This worked like a charm-right away. We thought we were in the clear and we were for a while. Other worries cropped up, but he didn't appear to perseverate over them as he did the "pick up” issue. Things seemed good.

Fast forward to kindergarten and the bus. Kal had this fear before he ever rode the school bus that it was going to get into an accident. He stressed over this for quite awhile and it just seemed to get worse instead of better as the year went on. And then, on his birthday of all days, I received this blast from the school that, yes, you guessed it, there had been a "serious" bus accident...and I thought, "Nooo, this can't be? What are the odds that this would be his bus?" And then they said it. It was indeed-bus #12 that was in the accident. After hearing this, I realized that I hadn’t heard from Kal or the babysitter, but I quickly reassured myself that things must be ok. After all, the bus would have dropped him off hours ago and if it hadn't, surely I would have heard from the babysitter by now, right?

I took a deep breath and called home. Kal answered and began telling me that HE had just heard the blast on the answering machine and that bus #12 was in a “serious” accident after it dropped him off. I tried to down play the whole incident, but he already knew far more than me. "It said the fire trucks and ambulances all arrived on the scene," he told me. "And a few people, including Mrs. G. [the bus driver] had all been taken to the hospital."

“Really!?! This is all in the public blast?” I thought, but oddly he seemed almost calm about it. "The accident had happened after he got off the bus so maybe he won’t think too much about it," I wishfully thought. But how does this happen? What are the odds? Kal has worried and worried about this very thing happening and then it does… and on his birthday! Crazy!

He rode the bus a few more times that year just to see that it would be ok, but his bus driver didn’t return after the crash that school year which made it hard to convince Kal to keep riding it himself. He began perseverating over the bus the moment he woke up each day and this anxiety continued throughout the school day - the bus was not really seeming like a good idea any longer.

First grade started off ok, but we decided for "scheduling" reasons that the bus was probably not worth the trouble it was causing and Kal became a permanent pickup at school. This is when the severe anxiety really reared its ugly head again. Kal became fixated on who was picking him up - just like pre-school all over again. He was talking about it to anyone and everyone who would listen. The pick-up coins went back in his pocket and we began rewarding him for refraining from asking people at school who was picking him up-he knew the schedule and if we turned the question around and asked him-he would always answer correctly.

Now we are to the point where I started this blog entry - the parent teacher conference. Mrs. begins telling us how she really “gets” Kal and she can see from his face, his body language and his teary eyes that he is genuinely nervous. Riddled with fear and anxiety. Mrs. goes on to say that she can see that he feels trapped and that he really doesn't want to feel this way. I can’t believe what I am hearing…finally someone understands. I have tried to explain this to acquaintances over the years who still believe that he is trying to manipulate us by acting this way to get what he wants. "If you could just see him you would know the fear is genuine and your heart would ache for him the way mine does," I think as friends tell me all the stunts their child has ever pulled to get their own way. "You too would know by the look in his eyes that he is not acting or turning on the water works to get what he wants."

Kal shakes at times he is so nervous-it is hard to watch. He is such a "people pleaser" and those that know him, KNOW he would do anything to avoid letting anyone down. I can tell these friends aren't really buying my theory, and probably never will , but I am ok with that-I don’t expect them to. I know they don’t really know him. And that is why when Mrs. says these words I have to refrain from leaping across the desk and KISSING her, "I really get how he is feeling." Mrs. said. She gets him...did she just say that? WOW, Mrs. really GETS him! I am giddy.

Kalvin was on a bypass machine for over 8 hours undergoing major open heart surgery at 5 days old. As a result he suffers from an anxiety disorder-the professionals have told us. We signed waivers and read study after study-this is just one of the long term side effects of by-pass surgery. Mrs. went on to say that Kal’s ability to express his feelings is one of his biggest strengths and she isn’t sure that rewarding him for hiding his feelings is the right way to approach this anymore. "Ok, we can come up with another way,” I reassure myself.

Then Mrs. continues, "Kal has been asking to go to the bathroom a lot."

"Uhmmm, hmmm, ok," I am thinking. "He use to wet his pants a lot and recently began going to the bathroom frequently to avoid wet pants. The pedi informed me that this is perfectly normal for his age."

And that is when Mrs. said the words that shook me to my core..."I think he is going in the bathroom to cry and let out his emotions so no one can see him," she says. "He comes out of the bathroom with swollen red eyes and a flushed face. And...this is happening several times throughout the day."

The thought of any seven year old child feeling so alone all day long that they have to go in and out of the bathroom to cry is painful to even think about. The fact that it is MY child, my first grader going into the bathroom to cry because I told him NOT to ask anyone at school anymore questions about who is picking him up AND, and I am rewarding him for this “good” behavior, made me want to vomit right there on his desk. How does one even wrap their head around how he is feeling on a daily basis? And then I think, "thank God for this teacher...and for placing Kal in her classroom this year." Thank you.

I have read a lot about CHD kids suffering from anxiety. Kal is enrolled at a study at Children's Developmental Center that works closely with the Cardiology Department to study these kids and their learning and developmental delay issues. I have been trying to educate the school about the effects of undergoing 8 hours of bypass surgery at 5 days old. Some seem to really want a label to help treat him...does he fall on the Autism spectrum-they want to know? That we will learn in some upcoming testing, but I can tell you right now he doesn’t. He suffers from "CHD Disorder" (my own label) and I hope if you are reading this and you can relate to what we are experiencing that you will comment below or email me privately. This is why I write. I want to help Kal and I want to try and help others who are also experiencing some form of this suffering. We have come a long way-my husband and I-our family. It has been, and remains at times, a tough road to travel - this CHD highway. Kal makes it all worth it, every single day. This is who he is and I Iove all of him with every fiber of my being. I just want to be able to help him the best way possible. I want to be able to help him forget his worries for a few hours the same way a bunch of men with sticks, chasing a puck around the ice can make him forget!

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