Pursuit of Happiness..

Happy. A word I have not used very often in the last several months.  I have been stressed, worried, sleep deprived, lonely and isolated at times and also spread very thin like so much butter on toast. My life became working, doing what I had to in order to keep the household going and my self care became secondary. I said “fuck it” to my diet and medication towards it and I know I have gained some of the weight I lost back in comfort eating (OM NOM NOM KRUSTY BREAD AND BROWNIES). I have not knit in weeks having finished my last project and buckled down to finish a committed embroidery project for the kingdom (SCA, FYI) which I did enjoy and looked great in my opinion. Most everything I did was what I HAD to do. Obligations I needed to fulfill. Happiness was fleeting and yes, I had brief moments of it, like when my son went a day or so without stomach illness from his chemo or that he ate solid food voluntarily, asking for it.  When my youngest would do his chores the first time I asked instead of repeated requests to take out the trash, pick up his Nerf darts before the dog ate them, do his laundry, etc.

These last two weeks, other than keeping a committed watch on my oldest to see if he spiked a fever, I can honestly say I have been happy.  It has come to my realization that my happiness is hinging on the wellness of my oldest of late. I worry about him so much with these treatments and how to keep him up both in weight and health. I’m constantly scrubbing his bathroom down. Diligent about his regimen of medications and shots and constantly trying to get him to eat food. I’m a bear about people using hand sanitizer that come to the house and making sure they are well before they come to begin with. If he is doing well, it allows my brain (as well as the rest of me) to relax and enjoy my surroundings.  This last week has been the best I felt in a while emotionally. Physically a little run down, as I managed to catch a sinus cold that lasted a day or two but has caused poor sleep patterns the whole week.

Last night, the neighbor called to let me know that today was the towns Apple Festival and its also the day that people do their last yard sale. This got me very excited! I love my town!   You’re probably asking…why?! Alright..side story. Everyone has seen E.T., right? Who hasn’t, right?! Remember the scene with all the kids walking around on Halloween? Glowing jack o lanterns everywhere, hundreds of kids walking around in glorious and creative costumes? That wonderful small town community you always read about? That’s what I have where I live. I love it here. The only thing I mildly dislike is the fact that we have to get our mail from a post office instead of having it delivered. Want to know why? The people of the community voted it to be that way so they could all socialize at the post office. And they do! Every one waves to you when you’re driving around or walking.  They stop to have a conversation..even in their car in the middle of the street. Its small but it has a lot. Dental office, fitness studio, gas station convenience mart combo, chiropractor, acupuncture, tiny pharmacy, bank, dance studio, barber, Dollar General, adorable library, a tiny town hall with some of the most friendliest people you’ve met. There is a great park a block away from my house. There is the fire house where they hold the cute carnival every year and the streets half shut down for it.  A Boy Scout troop at the local church. Local town sports association for the younger kids. The typical pizzeria, Chinese food, cutely named deli and a diner up the street. All within two miles of where I live. Down the road a few more miles is the just most wonderful little market called the Apple Bin that makes the best apple cider donuts and chocolate chip scones I’ve ever eaten. The store itself looks like something from Little House on the Prairie. Minus the spiders ALL THE PLACES, its my little bit of heaven and we found a wonderful house on a dead end street surrounded by trees in the middle of it. We even have great neighbors!

So, my youngest and his friend took a shift selling apple crisp at the festival for their Boy Scout Troop.  My husband and I, both lovers of a good yard sale, put the leash on Rolo, grabbed a couple bags (cause we actually are courteous and pick up the poo when he goes) and went out for a walk on the town to peruse the sales. Lots out there, but we settled on a replacement curling iron for myself (identical to the one I had but damn near new!!), and under the desk exercise bike for office jobs and a nice fur coat that I can rip apart for the viking garb. Its a lovely blond color and its rabbit fur. Hey, for five bucks, you cant go wrong with that. We ran into friends several times on our walk.   Rolo got to finally  meet a few dogs but he was a bit afraid around them even though they were all very friendly to him.  ALL the people stopped to pet him, say how cute he was, gush all over him and one couple even asked for the breeders name so they could contact her.  When we got back home, I ran a load of laundry and hung it on the line. We sat on the sun porch with cold drinks enjoying the glorious weather we were having. 70 degrees, low humidity and a nice breeze.  It was just a beautiful day and as I was sitting here waiting for LFR to pop in WoW, I realized I was happy and not just that but I had been happy for pretty much most of this past week.  Last night I started a pair of socks to put on the etsy store.  It feels good to be knitting again. I am doing that and working on an embroidery project.  I feel good. I feel happy. Im still a little tired, but it doesn’t damper the happiness I am feeling right now.

Kyle is at the halfway point in his treatments. Being over the proverbial hump and going down towards the second half feels good. The “road map” as they call it has a little over half a dozen more inpatient stays and that makes me feel good that the number is dwindling down.  We still have not made any plans till this is done in regards to weekend activities or vacations or the like. Just taking things day by day, week by week.  Make a Wish foundation came by to visit with him and ask what he wanted. We are unsure if they will grant it or not but, he asked for “a pool and a deck like at Aunt Colleen’s old house”.  They really couldn’t get anything else out of him that he wanted. Let’s face it, he’s a kid that knows what he wants.  We shall see if that is feasible to grant it. Its not like they can do anything with it now anyway being nearing the end of September.

The air has a crisp chill and fresh smell to it. Its suppose to be pretty chilly tonight. We have the windows open and even though my allergies are acting up from it, I love it. Perhaps we’ll light the fire-pit tonight and cook smores.  Right now, life feels pretty good. I hope this feeling lasts for a while. I know this whole thing has ups and downs but i am hoping for more ups than downs here on out.

Oh, and friends? There are so many of you that asked what you can do for us. The best thing you can do is keep in touch. Reach out to us..me. Call. IM. Email. Communication is what we need. Knowing you are still out there. Sometimes it feels like when the diagnosis was spoken, many said “let me know how I can help” and faded back from us. I need your company even if its just virtual.  With having to put our life on hold to give him all that he needs, it feels very isolating and a little lonely.  I miss my friends. I miss the SCA. I miss taking pictures. I miss wearing garb! I miss pageantry! The banners flying in the wind! The clash of weapons in the lists! The smell of glorious foods cooking and wafting from the kitchens. I miss life and the socializing.  Please, Stay in touch.

I am in pursuit of happiness everyday now. Im trying to find it in even the smallest things in each day.  I will not let this beat me and it certainly wont beat him. He is my ARMS warrior and he will beat this. I love my boy!

Frustrations & Complaints (move along if you don’t want to read further)

The night didn’t go so well. The lack of sleep has caused me to be in a foul disposition thus is going to reflect in this post.  The IV machine kept beeping and of course the nurses didn’t hear it so it would wake me up and I would have to go out and let them know that there was an issue with his fluids. This happened at least three times.  Then he had to use the restroom so he needs a hand with that..mainly rolling the IV cart and maneuvering it for him since he is half asleep.  All that started at like 12:30. I started to drift back off and then some weird ass dream woke me up and had my heart pounding. I can’t even recall what it was now. Then, the hunger set in. It was damn near overpowering too. I kept craving sushi in the worse possible way. I seriously debated going down to the cafe that is open 24 hours but all the food is starting to taste the same there and from what the nurses said, they aren’t that well stocked in the wee hours of the morning. So, after a cursory search of the floor to see if there were snacks of any type other than saltines or graham crackers, I went back to bed. The hunger pangs kept me up though and I decided to surf Facebook. Why oh why do all the amazing and scrumptious looking recipe videos come up at that time, when I am soooo hungry?!  It was torture, I tell you. I finally fell back asleep sometime around three is my guess.  But, the damn beeping IV machine woke me at 5:45.

On the complaint front, while the nurses are wonderful as well as the other staff here, the facilities leave quite a bit to be desired. First, they have these vinyl pull out couches and they have to be only slightly more comfortable to sleep on than the floor. Let me tell you, osteoarthritis and this couch do not get along what so ever.  I usually take Advil PM in order to get a good nights sleep, but last night I forgot to. Just as well I suppose considering Kyle needed help.

The bathrooms. We have been in here probably at least ten times now, and in as many different rooms.  Every room (save one) is equipped with these filters over all the faucets including the shower heads.  Our guess is they are the equivalent of Brita filters so the water is clean for patients with compromised immune systems to bath or wash hands without worry of bacteria. Here’s the problem. These filters, they clog up within two showers and then the water flow is a trickle coming out. And that is if there is a descent water pressure, which a lot of times there isn’t.  Nor hot water, or a semblance there of. The current room has a puddle in the base of the tub that has rust in it. Apparently there is also a problem with how they are leveled so they dont drain properly.

This is a children’s hospital. Children of this day and age have electronic devices that rely on internet such as tablets, cell phones, laptops and gaming systems. I have seen them all in various rooms (one teen had the whole X-Box One with Connect set up).  The problem is, when the internet infrastructure was installed, they underestimated the demand on it so it is very laggy. They also linked all the nurses mobile computer stations to be wireless as well so add that to the demand of mobile devices of the patients and families and calling it mediocre would be a kindness.  A simple video chat with loved ones is just about out of the question let alone playing a game or streaming a movie or show.  Thankfully, Kyle has a bag of dvd’s he brings with him and is happy with that.

I see the hospital updating the grounds right outside our window. There use to be a mini golf course and they have chain-link fenced off the are and are dubbing it Phase 2 of the gardens.  The nurse and I both said, wouldn’t the funds have been put to better use for updating the bathrooms/plumbing/computer issues (just to name a few)?  I know i would have budgeted the money for those things other than a new garden.

One thing I do find amusing is there is a ghost in the room. The automatic feed paper towel dispenser just randomly feeds out paper towels without anyone being near it to wave a hand in front of it.  *insert twilight-zone music here*

On an up note (I did say last night I would try) Kyle is in good spirits. My mother is coming to visit with belated presents for him which he is entirely too excited about.  He is smiling a lot and eating cheese its like they are going out of style. Milk and Dr Pepper too.  He has made a request for mini powdered donuts as well.

I feel a nap coming on. I think Ill go give in before company arrives. If you’ve stayed this long dear readers, thanks for listening to my vent. It did help some. I will just be glad when these hospital stays are in our past and he is cured and recovered to his old self again.

Ciao