Sunday, July 23, 2017

July 14, 2017

Wake up on a beautiful Pacific Northwest Summer morning with a mission: Get the warts on Randy's vocal cords removed. We set the alarm for 6 am in order to check in at First Hill Surgery Center at 7:15am. According to Google Maps, the hotel is a four minute walk; it's literally around the corner and less than a block to the Surgery Center (which is not the same place as First Hill Medical Center, where he had his tonsillectomy and neck dissection last summer). We had plenty of time to get dressed, get me a coffee, and get there.

Randy wasn't able to have anything after midnight. No food. No water. No gum or mints. They really don't even like you to brush your teeth, just in case you swallow a little bit of your own saliva and/or toothpaste. They aren't fucking around.

On Thursday afternoon, the day before surgery, we headed over to the Emerald City, after our Kid Sitter, Ms. G., arrived to take care of the two-legged children and the four-legged child. She's awesome and incredibly brave because she agreed to spend the night at our house. She's been with us for a while; she volunteered a lot of her time for us last summer when Randy was going through his cancer treatment. The boys worship her. We are so thankful for her. We can't leave our trolls with just anybody. As a mom of a child who has seizure disorder who is medicated twice daily with three different pharmacological drugs, two of which are given to control seizures, and one of which is given to induce sleep, we're pretty particular about who we let provide care for our boys. And this was the first time we'd left them for an overnight with a sitter in our home. Last summer, when my husband was going through tonsil cancer, and the summer before when I was going through breast cancer, the boys stayed with our close friends, Momma Christine and/or Momma Bonnie and their families. So, leaving the boys at home with a sitter for us to go to the city for an overnight with a surgical procedure the next morning, given Randy's health history and the fear that he was going to seize in the operating room, and if he did that meant he was spending the night in the hospital, so it could be that she was going to be with them for two nights...this was a big fuckin' deal.

The drive east from Port Angeles was perhaps the longest drive I've ever had going towards Seattle, and not simply because it was summer and surgery was looming. Living on the Peninsula means having to drive. But this was different. We caught the Hood Canal Bridge open for marine traffic, and there was an accident at the intersection just before the bridge on the Jefferson County side. Seriously?! So it was a double whammy, at the same spot, before even leaving the Peninsula. Through all of it, Randy did a great job driving.

Ferry ride to downtown Seattle
The ferry ride across the Sound was beautiful, and perhaps even a bit chilly with the wind. After the boat pulled into the dock in downtown Seattle and we disembarked, I drove Randy and me to the hotel fairly quickly, considering city traffic always sucks. After checking in to our room and letting the kids know we had arrived at our destination, (we called them on the phone, no, really) our dear friend Jeff picked us up and we went out for Mexican food. Then we went to Full Tilt for ice cream (I recommend the flavor Ube (proun. ohh-beh). Because if you can't eat anything after midnight, you may as well stuff as much in as you possibly can! Also, you only live once, so you may as well try the freaky ice cream that's made out of a purple yam which is popular in Fillipino dishes. No shit. It was delicious. It was way better than the Vegan Myan Chocolate bullshit that Jeff and Randy each got. Whatthefuckever, you guys. That shit was nasty. Goddamned hippies. Eatin' vegan ice cream.

Almost there....
We left the hotel early Friday morning, well before 7 am, because when you're stopping for a coffee in at Starbuck's, you you know it's gonna take a goddamned year...even at that ungodly hour....and headed up to the Surgery Center to check in.

After checking in, my husband and I walked through the vast waiting area that had semi-comfortable looking couches and chairs. I chose a pair of large, high-backed blue chairs with a narrow, but plain wooden table in between them, set down my 16 ounce white chocolate Americano, sat down, and pulled out the lap top. Because I'm not gonna just sit there for 90 minutes, and it's rude to leave and go shopping or some bullshit when your husband is in surgery. Right? Besides, the only thing open, besides Starbucks, is McDonald's (never!) and Bartell Drugs (later, when he's through surgery and in recovery. Because: chocolate.).

Anyway, so he goes back and they prepped him and then the nurse came to get me in the waiting room so I could keep him company. We met the anesthesiologist who was very kind and very thorough in reviewing Randy's health history. Based upon our conversation with him, he wasn't entirely sure Randy had a seizure last summer...but we all agreed there's no point in speculating about something that happened over a year ago. We both felt comfortable with the anesthesiologist putting Randy to sleep for this surgery.

Then the Lady ENT came in. I've only ever met her via FaceTime when Randy goes over to see her, so this is really the first time we've been in the same room and met formally. And she is lovely. And she's smart. And she's just gonna laser some warts off of my husband's vocal cords. She does this kinda thing a lot.

I head back out to the waiting room. And wait. And write. And dork around with my phone. And get up to pee like 12 times because my anxiety is so high. And they have free Starbucks in the surgery area waiting room, but I'll drink my water thanks.

And about 90 minutes later, the Lady ENT comes out. She's sad. Disappointed. She had to stop the surgery.

Wait. What? You didn't laser any warts off? I mean....

No, I'm sorry I didn't. Your husband has a very narrow passageway, and I need a smaller scope in order to access his vocal cords.  

I thought....

I know, I thought so too. I tried several times, with several different scopes, but was unsuccessful.

I know the real estate in his throat is limited because of the breathing tube the anesthesiologist has to use. Was that a factor?

Partly. However, but most of it is because of you husband's anatomy. It's narrow, and so I need a scope that is basically a smaller gauge so that I can get to the papilloma on his vocal cords.

Ok. So...?

So I had to stop the surgery because had I continued, I would have done harm.

Thank you for following the Hippocratic Oath. Is he ok?

He's ok. He's in recovery and you can see him soon. I'm so sorry. In my twenty years of practicing medicine, this is the second time this has happened. I feel badly that I wasn't able to help him in the way I anticipated.

Wow. So, it's a pretty rare thing?


But of course it happens to my family.

I know you guys have a lot of medical issues. And I'm sorry for everything you have on your plate. Please know I am as disappointed and frustrated as you are.

And as he will be.

I'll need to see him on Wednesday for the post-op.

Why? You didn't really operate.... I mean, not to be disrespectful.

No, you're right.

I mean...for us to get to the city and be here today took a lot of coordination for our kids. I know you know we have a child who has epilepsy and autism, but our 8-year-old has a full arm cast because he fell off the monkey bars and broke both his radius and ulna the week before school was out for the summer.

Oh no!

Yeah. And he's in arts camp next week, and he's really looking forward to going. So for us to be here on Wednesday for a post-op when there was no op.... Do you really need to see him? Or can we take a step back from this and perhaps have a conference call instead?

Yes. There's, you're right, there's no need for you guys to make all of the arrangements you have to and travel when really it's going to be such a quick visit. We can talk on the phone on Tuesday. I'll have my office call you this afternoon to set up a time.

Thank you so much. For everything. Really.

You're welcome. He'll be in recovery for about an hour and then you can go back and see him. I'll stop by and talk with both of you before releasing him, but he probably won't remember a lot of what we discuss, because of the anesthesia.

Ok. Thank you, Doctor. I very much appreciate your compassion and dedication to my husband and my family. Thank you for your support.

It was everything I could do to not hug her.

So instead, I went pee for the 100th time, and then left the Surgery Center. I made a quick stop at Bartell's for some smoked almonds for me to eat on the way home, and some chocolate (for the kids! And me. Because I needed to do something nice for myself, so I chose chocolate. Duh!). I grabbed most of our stuff from the hotel room, walked it down the street to the parking garage and left it in the Highlander, then back to the hotel, grabbed the rest of our shit, checked out, had a wonderful interaction with a blind woman on the street, and went back to the Surgery Center, who was calling me to let me know that Randy was waking up. Dammit, sometimes I have awesome timing!

Anyway, when I went back to see Randy, he was pretty loopy from the you are...and he wasn't particularly happy. Which is totally understandable.

Once he was feeling like he could get going, I asked for a medical pass for the ferry so we could be assured that we would get on the next boat home, we got our shit together, which included lots of packets of saltine crackers and a couple of vomit bags, I got the Highlander, drove back to the Surgery Center and met him and the nurse in front of the building, because they wheeled him out in a chair, which is standard. I asked what they do with people who don't own a car, the nurse said they usually call a taxi or take a bus. Jesus. Can you imagine getting out of surgery and getting on a bus? I'm thankful we have a reliable and comfortable vehicle to drive home in.

We caught the ferry in the nick of time, and were both starving, but ferry food wasn't happening, and so we stopped for something at Central Market in Poulsbo. The soup bar was a welcome sight. So were the fresh flour tortillas for tacos the next night. Nothing like meal planning on the fly. We'd talked, and Randy felt like homemade re-fried beans was something he could swallow without a lot of pain.

The ride home was largely uneventful. It was a beautiful day. Traffic was pretty light, considering it was a Friday afternoon in the middle of summer, and we were heading out to the Peninsula. The boys and the dog were happy to see us, and we were happy to see them! Ms. G. said they did great. The boys and Ms. G. all loved their chocolates!

So we're on for this week. But I'm not telling you when, exactly, because I suffer superstition. And I'm  hoping that since this is the third time we've scheduled this surgery, and they say things come in threes....

Also, I have no details worked out yet. I have things brewing, but nothing is for sure. Child care. Dog care. Overnight in the city. Again. The A Team is on high alert, and for them, I have eternal gratitude.

I'm trying to see the good...but this post has gone on entirely too long. And I'm Jabbed Out!

Bus ad; when's WA DOH & AG going after Big Sugar?

You can always tell the tourists, because they look up.


No idea what these buildings are, just a cool shot.

Friday, July 14, 2017

My Biggest Fear

"Momma, what's your biggest fear?" my son asked me one morning as I was cleaning up the kitchen after a breakfast of waffles, topped with whipped cream and fresh strawberries.

I stopped, heart pounding in my ears, he must be reading my mind. In some cultures, people with epilepsy were thought to have psychic abilities and became shaman. My son is incredibly intuitive so this is not a concept I've easily dismissed.

Of course, some cultures believe that epileptic seizures are caused by which craft and malevolent spirits, and this is also something I've not taken lightly. Sometimes I have to conjure up amazing spells to get him to not have a meltdown. And I reckon that all parents wonder if their child is possessed at least once in a while.

"Well," I said, swallowing hard and stalling for time, trying to fight the urge to cry, since I've been so preoccupied this past week with my husband's vocal cord surgery. "I have a lot of worries. But really I only a couple of big fears."

He continued to look me in the eye, and because of his autism, eye contact doesn't come easy for him. I knew he was serious. 

I went back to rinsing the dishes, water running, buying time, fighting back tears. Because what do I tell him?

That my biggest fear is that my breast cancer will return?

That his Dad's tonsil cancer will return?

That something will happen during his Dad's upcoming surgery that will negatively impact our lives forever?

That he'll have another seizure on the operating table?

Will the highly trained, very skilled, and wonderfully caring Lady ENT slip and whoops Daddy doesn't have the ability to talk again? Ever.

That we'll be in a fatal accident going to or coming home from the surgery in Seattle?

That my son's epilepsy will end up causing his death? In his sleep? Sudden Unexpected Death in Epilepsy is a real thing. And it really scares me. Really really fucking scares me. Easily top five in my worst fears.

And then there are the state of the world fears.

The fears that some people see my son as a burden on the system. Because he has intellectual disabilities, he's seen as "less than," and somehow not deserving of love and acceptance. Will they come take him away? Lock him up in a camp with other people who are seen as "less than"? As a person of Jewish decent, the whole "camp" thing leaves a bad taste in my mouth. Maybe that's why I haven't ever registered my kids for camps during the summer. 

We've had internment camps in America before. We locked up the Japanese during World War II. What's to stop it from happening again? What's to stop them from taking the people who are autistic? Or epileptic? Or people who live with any disability? Or people who have had cancer? Or have a different skin color?

Will he be thrown away by a society who now thinks that a college education, and having an intellect, is bad for America? What does that mean for my career? For my husband's career? What does it mean for our health insurance? And didn't the Senate vote take place today? My entire family is a pre-existing condition. Did it pass? I heard they didn't have enough yea votes going in...but I don't know the outcome. And it's important. Because eventually, my kid will probably end up on Medicaid. Right now, under the Affordable Care Act, we can keep him on my husband's insurance until he's 26. Thank you, Mr. Obama, for that one. Thank you for not permitting insurance companies to charge us more because we have so many pre-existing conditions and putting life-time limits on how much money my family will have to spend on all of what we deal with. Thank you.

The fear that all of that could be gone is truly terrifying for me.

Dishes in the dishwasher. Counters and table wiped down.

"What are your worries, Momma?" he asked.

"I don't know, honey. What are your fears?" I asked him.

"I'm not afraid of anything Mom," he said with confidence.

"Well, that's great, Nathan!" I said in a supportive tone.

"But, Mom, what do you worry about?" he asked again. I know he's persistent. His brain gets stuck in a loop and he will continue to ask the question unless I answer him.

"I'm worried that...the garden needs to be watered. Would you like to come outside with me and help me water the veggies?"

"YEEEESSSSS!" He yelled. "MOM! WE NEED TO CHECK MY BROCCOLI!" he continued to yell, in a very excited way. He loves broccoli. Being outside, connecting with the food he chose to grow in his raised garden bed, the water, the sound of the birds, the sun shining. All of this helped calm both of us down.

Monday, July 10, 2017

Reasonable Risk

We all take reasonable risks that we don't even think about. When we get in the car to drive to work or school, running the countless errands we all have...those are reasonable risks. There's a risk we could get in a car accident. There's a risk our child could get hurt at school. We could stop at any number of businesses and wind up being the victim of a shooting. Right? I'm not advocating for this, but this is a reality we live in. But I'm not going to stop driving, or taking my kids to school, or running errands. None of us can stop living. Or driving to and from school, work, going to exercise, the bank, getting our hair cut, running kids around, going to the doctor or the dentist or running kids to the doctor and the dentist etc. etc. etc.... We don't stop living life. We don't even think about these things as reasonable risks, but that's what they are.... Reasonable. Risks.

Anderson Park
We let our kids take reasonable risks. Not the "go juggle machetes" types of risks. That's not reasonable. They're not trained in Guazabara. Yet. When my older son was diagnosed with epilepsy four years ago, and only 6 months after we spent a ton of money designing and building Anderson Park in our backyard, we had to make a decision about reasonable risk. Even though the pediatric neurologist said to not let Nathan do anything unless he had a helmet on and was harnessed, because he could seize and fall and then break his neck, we decided it was more important to let him climb, explore, and engage in gross motor activities. Exercising and getting to know how his body works, especially when there's four to five inches of rubber mulch beneath him...reasonable risk. He'll most likely bounce. And he has, many times, fallen off of our swing set and gotten right back up.
Watering his garden with a cast? Sure.

Four weeks ago, when my 8-year-old broke both bones in his right forearm on the monkey bars at school...with only 7 days to go before school was out for the summer...I had to make decisions about reasonable risk. He is not permitted to be around water...but the garden needs to be watered...and he planted his beans, peas, and lettuces before he broke his arm. So I gave him the hose. Reasonable risk. What could go wrong? I mean, his brother isn't even outside.

This is a child who is incredibly independent. In my conversations with other moms of children with special needs, of those who have a younger child who is neruotypical, the neurotypical child is incredibly independent, too. So, I know we're not unique in that.

But what is amazing about this kid, who was taking a reasonable risk when he was at school swinging on the monkey bars during recess, is that when he was ready to stop using his training wheels, he told me so. But I wasn't ready for no training wheels. I mean, at the time he was 4, so, no, your training wheels are staying on, little dude.

However, Sir Isaac isn't one who backs down easily, (I have no idea where he gets this from....) and went into the toolbox, got a pair of pliers, and started taking off his training wheels. Ok. Fine. Let's do this.

Also, when he wanted shoes with shoelaces, I told him he was going to need to learn to tie his shoes, and sure as shit, without more than me and his dad showing him a couple of times, he was tying his shoes proficiently within 24 hours. He's brilliant. Obviously.

So, here's the hose. Go water your garden. Thanks for helping. Be careful. Have fun. You are taking a reasonable risk, my child, by holding the hose with your left hand and keeping care to not spray the water in the direction of your right arm.

No, you may not spray your brother. I want to, too. Believe me. When your cast is off, you can spray him all you want. We both will. And thanks for helping me grow some deliciousness in our garden.