sensory — Blog — Rowan Jetté Knox


I hope my complexion looks decent under all those lights...

June 21st.

This is the day I'm going in for surgery. The call came in Friday afternoon, and I had barely had a chance to process it all until tonight because I've been so busy doing awesome things like crashing street parties. (Okay, so it was a block away and we were invited by one of the organizers, but "crashing" sounds so much more bad ass, and befitting of someone who calls herself "The Maven of Mayhem.")

I had a c-section with Gutsy, and at some point in the months that followed, I developed a hernia at the incision site. This type of hernia has the unoriginal name of "incisional hernia." A Pulitzer prize to whoever came up with that one. I've had the darn thing for about eight years and have even carried another baby and had a second cesarean in that time without any complications. I pretty much ignored it for a long time because it didn't hurt and my layers of rotundness covered it up nicely. I've been sitting in that blissful place of denial about the lump in my stomach for a long time now, and I've been very okay with that.

The problem is that I've been losing weight since going gluten-free (okay, that's not much of a "problem" at my size, but let's not start getting all resentful and doing the eye-roll thing, ok?). The more weight I lose, the more noticeable and somewhat uncomfortable the hernia is becoming. It's no longer the quiet roommate who pays its rent on time and does the dishes, but rather the one who stumbles in drunk at 3 a.m. and doesn't clean up its own puke in the morning.

In the spirit of taking better care of my body, it is time for the darn thing to go.

I've been waiting for a surgical date for a few weeks. Not knowing was aggravating, but also kind of nice at the same time because it meant that the surgery wasn't quite real yet. It's not really happening until you put a circle on the calendar. Well, now I have the stupid circle, and the reality of it all is hitting me - hard. In just over two weeks, I will be put under general anesthesia for the first time in my life. I will be cut open from belly button to pubic bone, and I will become the bionic woman with the help of a mesh placed over my abdomen. Then, I'll be sewed back up.

I'll be in the hospital at least three days.

I will be in a significant amount of pain.

I will be at greater risk of infection than other types of hernia repairs because of the large incisional area and mesh.

I will be at greater risk of hernia recurrence (AKA epic surgical failure) because the area is already weakened due to two prior surgeries.

I am not terribly thrilled by any of this and stopping just short of drowning my stress in a bag of chocolate-covered almonds. (Putting on weight right now isn't going to help anything - or so I tell myself.)

On one hand, I'm glad to be having this done. I really should have done it a long time ago and I want to get it over with. On the other hand, I'm not terribly happy to have had a conversation with Dr. Google about the aforementioned statistics and risks. Ignorance probably would have been better on my part. But I'm a research junkie, and sometimes I just can't help myself. (Case in point: instead of simply reading breastfeeding books, I spent a year taking post-graduate-level lactation courses. True story.)

Overall, this is a low-risk procedure with a decent chance of success. The benefits far outweigh the risks, and I'm not questioning having the surgery done. I get that it could be worse, it could be scarier, it could be more life-threatening. I get that I'm probably going to be just fine.

BUT.

(Oh, you knew there was a "but" coming, didn't you? Don't look so surprised. If I wasn't so inwardly conflicted I wouldn't have a blog about my crappy parenting and such to begin with.)

If I only had to worry about myself I don't think I'd be terribly concerned. The odds are strongly stacked in my favour. But I have three little gremlins scuttling around the house who need their mom - and one in particular who has a host of sensory and processing issues. For Gutsy, stress is bad, change is bad, derailed routines and schedules are bad. And by bad I mean cataclysmically bad. My surgery is going to wreak havoc on Gutsy's emotional state, and I worry way more about him - and his reaction to everything being thrown up in the air - than I do about me and how I'll fare.

We have put a great deal of time and effort into Gutsy's routines. Without them, his world falls apart. It has taken months to find a morning schedule that works for him at this point in his life, and even longer to find a bedtime schedule that does the same. If done just right in just the right circumstances, we get through the day with no major meltdowns. All of this relies heavily on my participation in things. So by taking me out of the game, the game itself has to change. All balls will be thrown into the air, and my child who struggles to keep things together on the best of days is going to have to figure out how to catch them all - without my help.

Add to this that two days after surgery Gutsy finishes school for the year, and you have a perfect storm for adjustment problems. The spring-to-summer transition is already hard for him without further complications. It's going to be a difficult couple of weeks.

I have not shed a single tear about this surgery until tonight. It wasn't until I had to start thinking about how we're going to help Gutsy manage the stress of all this change that they started to flow. I cried for a good hour. Now my eyes hurt and I'm hungry (I think crying must eat up a lot of calories), but I am feeling a little better.

You might think I'm overreacting. And if you are, then you don't have a kid with special needs. And you are fortunate, and you should count your blessings that you have no idea why I'm going all emo about this.

Having surgery as a mom to a child with special needs amplifies the normal range of stress by piling on a whole bunch of added concerns. Those concerns are often so, well, concerning, that they make any worries about the surgery itself pale in comparison. Potholes in the road of life become sinkholes. There is so much more to plan, to arrange, to manage. It's a juggling act - and I'm a terrible juggler.

The next two weeks will be spent getting the house in order, stocking the cupboards with food, accepting and arranging offers for help post-surgery (there have been several because I have amazing friends and family on account of being an amazing human being who attracts these sorts) and making all the last-minute arrangements before I'm out of commission for awhile.

But the biggest challenge - my largest project - will be slowly trying to prepare my middle child for what's about to happen. It might seem like a few waves in the sea for most people, but this is likely going to be nothing short of stormy waters for Gutsy; a Bermuda Triangle of sorts. I'm hoping we can find a way of making this easier on him - and, in turn, on the rest of us.

And did I mention I'm going to have a big ugly scar on my belly? Fucking hell.

On Monday night, Gutsy shrieked, begged and protested for a full 75 minutes over having his hair washed. After a long weekend of chocolates, day trips, rich meals and late bedtimes, he was completely out of sorts. He absolutely lost it at the thought of his hair being wet.

This came on the heels of a 20 minute freakout in the van on the way home from the in-laws' on Saturday night because he spilled apple juice on his pyjamas. We had to pull over, take his brothers out of the van, and get him calm enough to change his clothes and switch seats.

Yesterday, the power was knocked out at Gutsy's school during a wind storm. The stress of the hallways being dark was so heavy that he came home and burst into tears because our power was out as well and he couldn't watch t.v. Schedule off, things not as they should: panic.

Welcome to life with a child who likely has a full-blown sensory processing disorder.

You may recall that a few months ago, Gutsy, my mom and I braved one hell of a storm to go see a Montreal psychologist who specializes in hearing impaired kids. Not too long ago, we received her final report. It was simultaneously a huge relief and a rusty knife to the heart.

The Reader's Digest version of her findings:

1. Gutsy is quite bright, with many academic testing scores in the above-average range.

2. He is very typical - or average - in many respects, which is fantastic.

3. When processing new information, the middle gremlin scored "borderline clinical" at 7% of the average, which likely indicates a learning disability. Coupled with an extreme sense of perfectionism, this is a perfect storm for anxiety surrounding school (which, if you've been following my blog like a good little sheep, you'll know is a recurrent theme.)

4. Gutsy's more difficult behaviours are almost exclusively reserved for home, which is great for the teacher and bad for us. It either means he has more triggers at home, or that he feels more comfortable "sharing" them here.

5. Gutsy's rigidity, defiance, emotional explosions and panic attacks at home scored in the "clinical" range, meaning they are quite serious and atypical for his age.

6. As it stands, he could be mildly on the autism spectrum, he could have generalized anxiety, or he could have sensory issues - or a combination of any of these. We all feel that a sensory processing disorder is most likely, so we will have him seen by an occupational therapist as a first measure. Sensory problems are more common in children who deaf or hard-of-hearing, so this would fit.

7. The psychologist felt that there are far more questions than answers right now. She recommends further testing in a multitude of areas.

8. I'm whiny and emotional. so I felt I should add in an extra number on the list to complain about it.

The big brown envelope with all these details sat on my desk untouched for far too long. We had already spoken at length to the psychologist over the phone and had asked a great many questions, but for some reason I couldn't open the report when it came in the mail. It was a crafty little game I played with myself; I felt that if I opened the report, it would become real all of a sudden, And that nice little bubble of "if we don't name it, it doesn't exist, so let's all skip through the field and pick some fucking flowers" could stay intact. I would pick up the stupid envelope every so often. Then, losing my resolve, I'd place it back on my desk, unopened. It took me about three days to finally get up enough nerve to read it.

Then, the past few days happened, with so much sensory stuff going on that it just tore up his dad and I. This is affecting our entire family. Not only is Gutsy having a challenging time as of late, but his brothers are having to deal with less attention, more chaos and a life of walking on egg shells around their brother. It takes an emotional toll on all of us. Geekster and I get so stressed out that we can't even say a word to each other for a good while after one of Gutsy's meltdowns for risk of snapping at each other. At other times, we glance at each other just long enough to see the sadness in each others' eyes, then look away. What is there to say? Nothing we tell each other seems to make it any better.

Needless to say, it hasn't been a great week.

And yet we all love each other so much. We all love Gutsy so much. We're trying hard to make this a peaceful, happy and safe place for our boys to grow up. Some days are better than others. I hope to see far more better days in the future.

Watching Gutsy in that kind of overwhelmed, panicked state is one of the most helpless, gut-wrenching things I have ever had to do - and if you know me and you know my life story, then you also know that this statement speaks volumes. It's tortuous to see him locked in his own head, unable to escape the place where things are too bright, too loud, too wet, too dry, too itchy, too tight. What happened to that sweet little boy that got us to this heartbreaking place? Why can't I help him? What am I doing wrong? It tugs on a mother's heartstrings like little else can.

I'm sad. Sad and worried and angry. I'm having one of those "this isn't what I signed up for" kind of weeks. And I know that's ridiculous, because as parents we sign up for whatever gets thrown at us. Nobody is guaranteed a smooth ride. Parenting is always bumpy - there are just some bumps that are bigger than others, that's all. It's my job to deal with that. I'm trying, believe me. It's just been more of a challenge to keep my emotions in check lately.

If one good thing has come out of the last few days, it's the reminder that my husband can be absolutely incredible. When Gutsy was in his bad place for those 75 minutes on Monday, Geekster took the helm and worked him through it. He sat in that loud, echo-filled bathroom, being repeatedly screamed at not two feet away by a distraught and overwhelmed child with quite possibly the loudest, most ear-piercing yell ever - and miraculously got him through that hair wash. He is an amazing father. I don't know many human beings who could have done that, and it made me fall in love with him more deeply than I already was. He is a hero to me, and Gutsy and his brothers are so lucky to have him. I am extremely fortunate to have had a family with someone who is so dedicated to his kids. I was reminded of that this week.

What will parents do in the name of their children? Absolutely anything. Anything and everything, and all the rest in between. We will never stop trying, helping, supporting, learning, empathizing, loving. We will never stop, Gutsy, because you mean the world to us. And you are perfectly you, just as you are.

I guess I'm done for now. This isn't one of my usual cheery posts, and I apologize for that. But sometimes I need this space to vent, to cry, to just be. It helps me to write, being a writer and all. I hope that it helps somebody else who stumbles upon it, too. If that happens, then that will be another good thing to come out of this otherwise sad week.