Saturday, December 24, 2016

Dear Santa

Dear Santa,

Thank you so much for stopping by our table yesterday at iHOP and for your willingness to spontaneously take a picture with my boys! They were really quite excited to see you! As a human services person, I really appreciate what you're working on for the Marine Toys for Tots Foundation here on the Olympic Peninsula.

We don't really go to restaurants much, because my older son is on the autism spectrum and has a lot of sensory issues: strangers, too much noise, many different smells and bright lights tend to overwhelm him. He has a hard time regulating his body and "acting normal" in public. Add the holidays and the lights and the snow we've been having and a major surprise seeing you--I'm just thankful his head didn't explode at that very moment! He's been known to get pretty loud, because he has a hard time controlling his impulses.

I know he physically looks like he's 13-years-old, but he's chronologically only 10-years-old. My son has several developmental disabilities; the myriad testing he's been through, both at school and through Seattle Children's Hospital, put him, developmentally, at about 6-years-old. His 7-1/2 year-old brother is ahead of him developmentally; my older son will likely not catch up. I know you don't know this, but I do, and that's why I'm writing you this letter.

You see, Santa, when my husband and I each stood up yesterday to let our boys out of our respective sides of our booth, all of us hoped for a "normal" encounter with you. Each time we're out in public, we take a risk. It's a reasonable risk, I mean, I want my children to know how to act in a public setting. But it never occurred to me that you, Santa, would pull my son's Bite Saber out of his mouth.

One of the things I'm trying to teach my children is about consent. You reached up to him, pulled on the string, and pulled a comforting object out of his mouth, without his consent. Not cool, Santa. Not cool at all. Would you do the same to a toddler who had a pacifier? You may not agree with the parent letting their child have such an object, but is it your place to make that decision?

Also, you invaded my child's body space. His bubble. My son has body space issues in that he isn't aware when he's standing close to someone. Is he too far away from them? Or too close to someone? It's called vestibular sense. You are probably aware of where your body is in relation to other people or objects. But my son, he doesn't get this at all; my husband, the team of teachers my son has at school, and I are constantly trying to teach this unwritten etiquette to my son.

My son also has a rare form of epilepsy, and has frequent, rapid seizures each day. Don't worry, he's medicated, but he still seizes. When you pulled that Bite Saber out of his mouth, he may have had a seizure, but you didn't know because his seizures only last about 2 seconds. He may not have known you pulled his Bite Saber out of his mouth. But I saw you, Santa. And it seemed unnecessary for you to do what you did.

Now, I know that I'm an over-protective mom. And I know that my son has a slower reaction time. But I know that you invaded his space just before I snapped the picture of the moment he was so incredibly happy to see you. Guess what, I don't care that he's chewing on a Bite Saber. I don't care if it's in the picture. His Bite Saber helps him release anxiety. Why did you pull it from his mouth? What do you care? Why did his chewing on what is essentially a way for him to stay calm bother you enough to take it from his mouth? I mean, you're Santa. Aren't you accepting of everyone?

And I mean, you have a PIPE in your mouth, for fuck's sake. So, the hypocrisy of the action you took is a little lost on me. I'm confused. Why is it ok for you to have a little something that brings you peace and comfort in your mouth, but not ok for my son? What would happen had I done the same with your pipe?

After the Bite Saber was pulled, but before the whisper occurred....


Not to mention the fact that I was the Tobacco Prevention Queen for Clallam County Health and Human Services before my kids were born and I know that, according to the Master Settlement Agreement, the use of cartoon characters promoting tobacco products is banned. AND, according to Washington State law, smoking is banned in public places. Not that you were ACTUALLY smoking. When I worked in Arizona, we said that smoking is a "tumor-causing, teeth-staining, smelling, puking, habit." That was back in the mid 1990's...and of course, today, we know using nicotine is an addiction, and needs to be treated accordingly. But, you were promoting a the use of tobacco, there, Santa, and I really think you should ditch the pipe.

But then...then, you bent down and whispered something in my son's ear that was incredibly quiet, and I just...something didn't sit quite right with me. It was the kind of thing that I thought about on and off throughout the day as my family ran errands, including buying a few presents for our faithful dog, and getting almost all the way through Costco my son had a meltdown.

I like to think you said something kind and encouraging like, "you are getting to be so big and don't need that chew toy!" Or maybe even, "what's that thing you were chewing on? Does it help you?"

And each time I thought about and wondered what you so secretly whispered into my son's ear, I got a feeling in the pit of my stomach that I just didn't like. It even came to me twice while I was reading my book in bed last night.

So today, I gently worked my way up to asking my son what you said. He replied that you said, "you don't need to chew on that thing." Now, I'm taking it with a grain of salt, I recognize that my son is a child. But, because of his autism, he doesn't lie. My hope is that you did not intend to do him any harm. I mean, you're Santa Claus. I hope that you're intent wasn't malicious. But you provided a learning opportunity for my son so that we again talked about the fact that people need to respect his body space and they need to ask permission before they touch him and that permission needs to be given by him before he is touched. Consent. You did not obtain consent before you took my child's Bite Saber from his mouth. I'm not too happy about that, Big Guy.

I have the upmost respect for you. I get to play Santa on Christmas Eve, after all, and it is kinda exciting for me! RIGHT!? Coolest part of being an adult at Christmastime! But, because my son's developmental delays are what they are, I have found myself wondering if my husband and I will play Santa every year for the remainder of our lives on behalf of our son. Will his cognitive ability advance past the age of six?

Of course you don't know. I don't expect you to, Santa. But, I do have a request, Mr. Claus, and that is that when you are working in the community, will you please be so kind as to remember how much excitement you bring to children, regardless of their physical size or developmental age?

Because, someday, my son will be man-size, but he may only developmentally still be under the age of 10. And, if he has a Bite Saber in his mouth at that point, will you be so offended by it that you remove it again? Eventually kids with developmental delays grow to be adults with developmental delays.

Please, Dear Santa, I am asking you to be kind and spread joy, and not judge books based solely upon their covers.

Thank you for considering my request.

Respectfully yours,

Rachel Anderson







Sunday, December 11, 2016

Appointments

The week of November 28 through December 4 was painfully arduous, to put it mildly. It's taken me this long just to type it all out.

Randy will officially be able to drive on December 31st, which my mother doesn't think he should do because, you know, New Year's Eve. Because it's not safe to drive ANYWHERE AT ALL on New Year's Eve, even during the daytime. Seriously? Yes, it's how she rolls. So I'm still the only driver in my house, making me responsible for getting boys to school for a 7:45 am start and a 2:00 pick up (except one day a week when they get out at 1:30). I take them to Hapkido; it provides them a constant and a security that they've known for over 5 years. I am the primary person who takes Randy to his medical appointments. And in between all of this, I've got to go to the grocery store, cook all the meals, do all the laundry (the boys have started folding and putting away; it's amazing what they'll do for a nickle or a dime. Sometimes if I'm feeling generous, or it's a bigger job, they'll get a quarter).

The last week in November was also the end of the quarter, and I gave my final exam. As my colleagues know, the last week of the quarter somehow causes some students to think miracles really do happen. This isn't 34th Street. This is reality: the work you choose to submit, or not submit, reflects your grade. It's more like Die Hard.

This isn't a plea for help. We ask for help when we need it. I'm using my blog to vent, which is what it's for. Mostly.

So, here we go. This was my week. I hope you're sitting down. My head is still spinning from trying to type it up, let alone living it. It was a week that overflowed with appointments.

Monday 11/28 7:45 am drop boys at school. Go home and get Abby to vet at 8:30 am for a blood draw to prepare for teeth cleaning on Thursday 12/1. Then at 12:45, drop Randy at the Sequim Cancer Center for a PET Scan to prepare for meeting with medical oncologist on Thursday 12/1. Thank you Zion for picking him up and bringing him home.  Pick boys up at 2:00 from school. Home, snack and a show, then into Port Angeles for Hapkido at 4:15. Home about 5:30; boys in bed about 7:30. N needs medication or his brain literally will not shut off. It's an autism thing.

Anyway....

Tuesday 11/29 7:45 am drop boys at school, go back home, and eat breakfast. Then take Randy to a 9:30 am physical therapy appointment in Port Angeles, which lasted about an hour. Home for lunch, then pick up boys at 1:30. At 3:00 and 3:30, they had dental appointments in Sequim. Then home and dinner and all that jazz.

Wednesday 11/30, final exam launches at 12:00 midnight, will be available for 72 hours (also known to some as "serious prayer time"). Take boys to school at 7:45. Randy to mental health appointment at 9:00 am in Port Angeles. Take myself to Renaissance and get some delicious food and a hot tea...and a much needed mental health break. Pick Randy up at 10 am to take him home. On Wednesdays I volunteer at the boy's school from 11:30 am till 2:00 pm. It is something I enjoy and I find refreshing; otherwise I wouldn't do it. At some point Randy for a call from the Cancer Center saying he needed to get his blood work done before his appointment tomorrow. WHAT THE FUCK?! Apparently they forgot to put in the goddamned order and so now he's got to go to the hospital lab for his labs. Fucking Christ. At least they remembered before his appointment with the oncologist tomorrow. So, after school, the boys had a snack and watched some TV at home, then we dropped Daddy at OMC, I took the boys to Hapkido, went back to the hospital about 30 minutes after I dropped him off--he was done shockingly early. Finally home, dinner, bed. Bitches. Mom's getting tired. OH! And dont' feed Abby after 10pm because she's going to have anesthesia in the morning and we don't need to deal with dog puke. 

Thursday 12/1, most important: don't let Abby have any food or water! So as the boys were getting ready for school, Isaac said he didn't feel good and then he threw up a little bit later, resulting in no school for him. I took Nathan at 7:45 and he did amazingly well on his way to school without his brother. Sometimes, you just never know which direction his autism is going to take him. Isaac threw up again while I was taking Nathan to school; fortunately he was at home with his dad, who was mentally preparing for a meeting with our medical oncologist in Sequim at 10:15. But first, I had to take Abby to the vet at 8:30 for her teeth cleaning. So I dropped Nathan at school, went home and got Abby, dropped her at Dr. Carmen's office, then home, grabbed a few gallon-size Ziploc bags, put a couple of paper towels into each bag, made sure we had plenty of towels of various sizes, loaded Isaac and Randy up for the drive to the Sequim Cancer Center, and left. When we got to the Cancer Center, Isaac put on a face mask (we prepped him and he was as ok as can be with it) and he and I sanitized our hands and went and sat on a comfy couch in the library, which was fortuitously empty. Randy met with the doc on his own, which is something I struggle with, both as a survivor and a caregiver. Because I never went to one appointment with my medical oncologist alone. Because sometimes, you need someone you trust on a gut level. But my kid needed me. So Randy went into the meeting alone. And I'm thankful that he received the awesome news that he is in remission. While we were confident going into the meeting, there's still so much fucking anxiety when you meet with an oncologist...you just never know which way shit is going to go down. We left the Cancer Center and headed home so Isaac could spend the rest of the day laying on the couch, running to the bathroom to throw up, because he'd rather puke in the toilet than in a trashcan next to the couch. Whatever. I get it. Just make sure you try your best to get there, little dude. I picked N up at 2 and took him home. Then at 4:30, he and I went to pick up Abby from the vet, where they removed four molars, two on the upper part of her jaw on each side. They showed us. It was disgusting. But, that's life. She also had an infection, so she needed antibiotics twice a day for a week, and pain meds once a day for 4-5 days, and we needed to soften her food for about a week, too. Thank you MasterCard for that one! See, Mom? I only use my credit card when I really really need to. And, Abby, Happy Birthday and Merry Christmas for the rest of your life, pup. We love you very much.

Finally Fucking Friday 12/2, Nathan makes another solo trip to school and does great. Isaac's down for the count. No fever, but still puking, which is reminiscent of the illness I had that lasted for 3 fucking weeks in November (which is the main reason I haven't blogged in a long time). So, I took him to the doctor at 10:40 am...just going into the weekend...wanted to be sure I wasn't missing something with Isaac's health...or loosing my mind...I know about Munchausen syndrome and Munchausen by proxy syndrome. Sometimes, being a Health Educator and a woman with high anxiety caused by Jewish heritage can suck and make me slip into a rapid downward spiral, resulting in extreme made up situations in my mind where I cause my own clusterfuck in my head. Remember my above comment when I said my mother said my 48-year-old, adult, capable husband shouldn't drive on  New Year's Eve, even during the day? Ok, not that she said that, exactly. But you see my point. Clusterfuck myself. And no, as a cancer survivor and a cancer caregiver, I don't automatically jump to my kid having cancer. I try not to go there. But I did convince myself that the dog had a brain tumor because when I'd pet her head before her surgery, she'd pull away. Tumor. Obviously. But, nope, it's her four cracked and infected teeth. Anyway...So at the doc's office with Sir Isaac, the new to us nurse practitioner was awesome. And pretty, and young, so Isaac instantly liked her. And he LOVED when she said, "to keep him hydrated, maybe try Popsicles" which, I forgot about because my brain is pretty full. We made a special trip to Safeway after his appointment so that he could pick out Popsicles. We stopped by the pharmacy drive-thru, but his 'script for his anti-nausea meds wasn't ready. Took him home, and I ate some lunch with Randy. Then went to pick up N and we went to Country Aire for an afternoon snack of a bowl of clam chowder for him, and a few other groceries. Then we went back to the pharmacy and got Isaac's meds. Then home, dinner, bed. Two trips into Port Angeles that day. Oh and Abby was feeling much better as evidenced by the fact that she spent quite a bit of time outside, barking at her new boyfriend who just moved in across the street. He's a big brown lab. They're totally twitterpated. Who in the goddam gets twitterpated in the fall? With snow on the ground? Whatever. But, she told him all about what horrible parents she has because she had oral surgery the day before. What an ingrate.

Saturday 12/3, this is the day after my final exam was to be completed. And all I can really say about this is, no amount of begging, pleading, whining, or crying is going to convince me that you "forgot" when the due date of the every single assignment, including exams, was given to students on the first day of class via the syllabus. And, as it turns out, it's not quite so easy to get an A in a college health class. You can email me as much as you want, but, no, late work is not accepted. My syllabus says so. And my boss supports me. So, please, feel free to contact him and plead your cases.

Sunday 12/4 and Monday 12/5, Isaac was still sick and decided to say home on Monday to rest and give himself a chance to recuperate from all the puking. Nathan made a total of 3 trips to school by himself and did great. Like most siblings, they feed off of each other and do better when they are separated in certain situations.
OK. So, anything else universe? Because I'm pretty much tapped out. Can we just be done with the shenanigans? Thank you for considering my request.

I want to sit the fuck down for more than an hour. Alone. In a quiet place. And not have to be anywhere at a particular time. Or take anyone anywhere. Or really be anything to anyone. 

But I am. And I get to. And I need to. And I'll keep going. One fucking moment at a time. 

And please don't tell me to "Just keep swimming" like you're Dory. Because stop it. Thanks, but I got it. It's not a cute thing to say to a person who is in crisis.

I'm doing the best I can do. I've been doing the best I can. Even in the many moments I've found myself curled up in a fetal position on the bathroom floor, screaming and crying hysterically because of the stress and the pressure I'm under. Because no amount of higher education can prepare a person for what my husband, my children, or I have been through. There's no textbook. There's not even a pamphlet. I mean, what the fuck do you even call something like this other than "the clusterfuck of health"? Or maybe "how to survive a dual cancer diagnosis when you're already a parent of children who behave like tornadoes"?

The best thing you can do is keep an eye on your own health. And really, if you want to do something, light a candle and send positive vibes out into the universe for all of us. Not just me and my family. All. Of. Us. 

Or meditate. Or get down on your knees before you get in bed and pray. Whatever the hell you wanna do, just be healthy. And happy. That's what I'm trying to teach my sons. 

And please be thankful that you don't have 8 medical appointments in 4 days for 3 of your family members. Because I'm thankful I made it through all of it in one piece.