Monday, December 15, 2014
My youngest son has been struggling with intestinal issues for years now. We have been through dozens of tests. We have seen multiple doctors. Finally, this past September, we were fortunate enough to get into a specialist at Boston's Childrens' Hospital. He was able to successfully diagnose my son with IBS, Irritable Bowel Syndrome. At the time, we were relieved. We finally could put a name to what ails our son. What we didn't realize was the problem on our horizon that would come from the IBS rider.
Like a lot of diseases, IBS doesn't come alone. It is paired with another disorder.
The doctor causally asked my son if he was generally anxious. My son shook his head. Behind my son, I nodded affirmatively. The doctor took notice and pressed my son. After some discussion, there was enough evidence to suggest that the IBS afflicting my son came with a side dose of anxiety. This magnified the issue. Just how much, we had no idea. At least we had no idea until about a month later.
This is where I debated myself about whether or not to post this. Anxiety is not the disease you usually see in these inspirational stories. It's not a rare condition. It does not have eye catching statistics. If you mention it in conversation, you receive a lot of head nodding and feigned understanding from listeners. To the causal bystander, IBS doesn't overwhelm, as it is not immediately life threatening. Anxiety gets even less of a reaction. Mental health does not get a lot of high level attention in the media unless it's attached to a tragic circumstance. Mental health still has a lot of negative stigma associated with it. So how could my son's current circumstances compare to a more highly publicized physical ailment? I think you have to live it to understand it.
What my son has been and is enduring, I wouldn't wish on my worst enemy. My son is very smart. He loves school. He has a great set of friends. He enjoys playing and watching sports. He loves to draw. He can debate intelligently. But all of that has come to a screeching halt in the last 4-5 months.
My son hasn't been to school going on 3 months now. He missed most of his last season of youth football. Lately, he can't bring himself to leave the house. Early on, he spent hours in the bathroom. He constantly felt the urge that he had to have a bowel movement. That anxiety led him to start missing school. The doctor explained that his brain doesn't shut off pain like most people. So he really hasn't experienced a pain free day. Imagine that. Never knowing what it is like to feel good. The anxiety magnifies the pain.
The pain would wake him up at night. Lack of sleep would sap his energy. It was a vicious cycle. The sleep deprivation would make him not want to get to up. The anxiety would keep him house bound. He would hole up in the bathroom for long stretches. My wife and I would alternate working from home as much as we could to look after him.
I don't know what anxiety is like for adults. Mental health issues in general have to been vastly different for adults than for children. My son is 13, soon to be 14. He is an adolescent. His hormones are raging. Puberty is tough enough on it's own to endure. He misses school (yes, school). He misses his friends. He has missed sleepovers, Halloween parties, and pick up games. He can't even go across the street to play XBOX with best friend. He has missed his favorite new movies.
He goes through uncontrollable outbursts. For no reason he gets so angry he shakes and screams. He becomes irrational. He makes the same argument over and over. He won't listen to reason. You can't debate him. Even with my wife and I controlling our instincts to react with anger, stifling yelling and talking calmly, we can't reason with him. We can't even console him, particularly me. He is focused on my wife as his comfort zone. I tend to embody everything that is going wrong. He wants no part of me. Sure that is tough for me. But I don't have time to worry about that. I need to be there for him, for my wife and for our other son (both of whom have been amazing through the entire ordeal).
No. Maybe he is not in immediate danger. But this has immensely impacted his life. During his latest outburst he kept shouting out things like: "Why can't I just be normal?!" or "I can't do any of the things I like to do." He doesn't completely understand what is happening to him. But throughout all of this, even at his lowest, he continues on. He continues to battle. He continues to work to get better. We all take it one day at a time. Win the each small battle. Or to paraphrase Curt Schilling and the 2004 Red Sox: win each step, win each at bat, then win the inning, then the next...and so on. He did not want to go to therapy. But he did. He didn't want more medication. But he tried it. He even tried again after the first one had the opposite reaction. The first seemed to create the uncontrollable outbursts and fits of rage. He was terrified to go to group therapy. But he's done it. And. He's starting to win.
The other thing for this Rose Bowl Parade campaign is this: My son and I have a special bond that involves football. He was become a student of the game. He studies the history and traditions. He is not just a statistics guy, or a who's hot now person. He really values those that played before he was even born. He honors traditions like Texas A&M's 12 man, the Sooner Schooner, the Army/Navy game, or Harvard/Yale. We spend every New Year's Day watching bowl games. About 5 years ago I explain Bowl season to him. I talked about the big Bowls and traditions. The Rose Bowl parade happened to be on (which is a tradition for us, as we are usually taking down ornaments from the tree & watching the parade). He got really interested in how the floats were made and how long this has been going on. Since then, he watches all the Bowls, but he always asks "Who's in the Rose Bowl?" That is his must see Bowl. This year, our favorite team, FSU is in it. He knows FSU has never played in the Rose Bowl, based on the old conference tie-ins. If anyone deserves to win a trip to see the Rose Parade and Rose Bowl, it is my son. I guarantee no one would appreciate the meaning more. The irony is that if he were to win, I am not sure he could go. He is working on getting better. He seems to be getting better. But by January 1st? Who knows? One day at a time.
Friday, November 14, 2014
Tuesday, November 11, 2014
Demand & I try to make sure the boys understand what today mean, each year. It can't just be a day off to the boys. They need to understand the sacrifice & courage associated with not only those who serve, but their families too. It takes a special person to be home while someone they love is away serving. I think our boys get it much more than most. And that's not by accident.
Sunday, November 9, 2014
We spent the weekend in Jackson, NH. We hadn't been up in the area for a few years. Too long. The boys did have some good memories of our previous visits. They were able to reminisce a bit. Coco had his weekend planned out by meals. He counted the number of possible meals we would have up there. He then listed his favorite eateries up there. Of course, I told him that some of us might want to have some input into that. I think he humored me, but summarily ignored me. We did visit some of our favorite haunts, Glen Junction and the Flatbread Company. We tried for the Shannon Door but it was too crowded due to a private party.
We did a new hike. We followed the trail to Tuckerman's Ravine. We didn't summit. But we did hike a little over an hour up and then an hour back. That was huge progress for Coco. He was fine through all of it. We saw a really amazing waterfall. It was cool but not cold. The boys and I had our Camelbaks. It has snowed a bit. Just enough to make footing a bit slippery. It was a nice walk in the woods.
I chalk this up as a win. Coco was a champ. I am very proud of him. I hope it leads to better days ahead.
Thursday, November 6, 2014
We were really excited in September when we finally got a diagnosis for Coco's troubles. It seemed like we had a definitive answer. We knew it would be a long road to recovery. But we didn't anticipate this. What seemed like the lesser of the issues, has grown exponentially. The anxiety that triggers his IBS has gone off the charts. We really don't know why. The root cause eludes us. But Coco cannot handle life as it is now. He does not want to leave the house. School is a secondary concern right now. We just need Coco to function. I feel a bit lost. I certainly was not trained for this. I don't have an answer, let alone an easy answer. We are looking everywhere for help. We are not shy. We know we are over our heads. We have a counselor on retainer. Our doctors are consulting. The recommended medication will take weeks to take hold. Time seems to be creeping along. We hope to see some results. We really need a sign that things are getting better. For all of our sakes.
Wednesday, November 5, 2014
We sort of glosses over election day this year. I was a bad citizen this year. I didn't do any research in n order to cast informed votes. We did talk about the issues with the kids. Sure, we had a lot on our plates. This was not critical. But is that the example we want to set? Maybe we have done enough with this topic in years past to cover us? Hopefully.