New Project….TUG BOAT!

So, a year ago I put myself on a list to paint a tug boat for my town’s tug boat trail.  Seems as if every town has some icon that represents them. When I lived in Allentown, I recall horses or mules. I believe Kingston has Peacocks.  In our case, a tug boat as we have several ports….plus..Port Ewen is the name of my town.  Last week I got a call from the township asking if I still wanted to paint one and I of course said yes. I pick it up today.  Here is a Facebook link for the Tug Boat Trail:

www.facebook.com/pg/tugboattrail/about/?ref=page_internal 

They request that you paint it in acrylic paints and they will clear coat it. They will be posted around the town and then towards the fall, they are auctioned off.  I am going to go to Joann’s and get a supply of fresh acrylic paints (lucky me I was just texted a 20% off entire order digital coupon) and brushes to do the job.  My dilemma is what do I want to paint it like?  I have had a suggestion of a Childhood Cancer theme as a tribute to my personal experiences with it. I have also had the idea of making it look similar to a viking ship, but am trying to figure out how to make that work. Since the viking ship landed here earlier this year, I thought that would be a nice tribute and idea. Ryan is going to help me brainstorm. Since his drawing skills surpass mine, he will draw/sketch and I will paint.  When I pick it up this afternoon, I will post a picture of the blank canvas.

I am very excited about this. Its been years since I have painted anything other than a couple of ceramics at a local class. I will be happy when I settle on a design and set to it.

 

Edit: Here is the blank canvas…so to speak.

17474701_1695060350793046_1938103210_n

What a Long Strange Year It’s Been…

I am a jumble of emotions today. I am so happy for Kyle as it’s his last day of radiation and so sad I cant be there so see him ring the bell of completion. Tonight, i get to hold him in my arms again and have him home and in a couple more weeks…permanently. I have also never been more grateful for the speed at which a year can fly by. Also, I will never take another day for granted. I am making a list of things to do when he is completely done with all this: Travel, day trips, new experiences, etc. I will enjoy every second I have on this earth with my family from now on as much as I can. I’m sorry it took this type of situation to be such a wake up call, but I have heard it and will make the most of the rest of my days here.
I am also so thankful for the people in my life. My friends, my family and even the strangers that have heard of what we’ve been going through and have offered prayers or sent written support. There are so many to list that have been supportive, kind, generous and loving.
Thank you Doug for being a great father and taking such wonderful care of him. Thank you Kerry, Sherri, Jessica, Elizabeth, Cherie, Christin, TammyLynn, Beckey, Susan, Susan, Sue, Sarah, Maria, Maria(and so many more I haven’t listed) for being there when I was a sobbing mess and needed to be held up or bitch-slapped virtually (guess who that was) and told to stay positive and that he would beat this.
Thank you Mary for talking to me that day and giving me that hope I needed to grasp onto. That assurance I needed to hear. That has kept me grounded this whole time.
Thank you Leo for being so understanding in all this and the loving son and little brother. You always have a hug for me when I was sad and always had a way to make me smile. Thank you for being so encouraging to your brother and helping him when he needed it.
Thank you Sandra for coming up and helping with hospital stays and phone calls. Thank you Roger and Colleen for all you have done too. I love you all.
Thank you to my Ryan for being my best friend and loving husband and always holding me when i collapsed and broke down through all this, all the while reassuring me he would be fine and he was strong and would get through this. Giving me strength when I needed it so desperately. Making me laugh and smile when i felt like i couldn’t. I love you dearly!
Most of all, Thank you Kyle. You have been so strong through all this and so brave. Somehow you always seemed to have a smile even when you felt like utter crap. I will make this all up to you, all that you missed this past year, I promise. Thank you for being so strong and wonderful..even you told me “i’m fine..Ill be fine!” when i was sad and scared.
It’s not all done yet but we only have a few weeks till it’s all done. Thank you God, thank you so much.

Just Shoot Me

Days like this just are so draining. It’s never just one bad thing that happens, it turns into a number of bad things.  They always feel like the pile up on my shoulders and by the end of the day im mentally drained, physically exhausted and most certainly at some point ive cried, which adds to said exhaustion.

Did the taxes this morning. Waited for weeks for some 1095B form to come so I could finish the taxes only to find out, you don’t actually need it for the tax return. Then, apparently the rate obamacare gave us for our health insurance per month wasn’t enough and we owed money back for that. That decreased our return. Getting married halved what we’re getting back from last year. And apparently buying a house didn’t do a pinch of shit in the return. So this year getting back about 5K less than last year.

That was the first thing and set the tone.

Then I printed the insurance cards for my new dental insurance and went to chose the dentist (who i had an appointment with on Tuesday for my tooth that is abscessed, and they said they take my dental insurance) only to find out they don’t take the plan type i have.  So i had to cancel my appointment and now had to find a dentist that is A- accepting new patients and B- had an appointment available for a new patient with a semi urgent problem.

At this point the headache starts.

Then there is the boss that goes on vacation and seriously micromanages when he is gone. And more of the covering his ass for the lies he tells (“oh but you should never lie cause it bites you in the ass later”). “Get that bank check for the furniture refund for that woman. I told her i mailed it already, LOL! Oh and you should priority mail it to her”.  So now its off to two banks for the, as he calls it, creative moving of money from one bank to another to cover his personal bills and his company bills. Cash from one bank deposited into his own bank (probably for fun money in florida).  He waits till he leaves to do any of this so he doesn’t have to do any of this. “Make sure the check to clear the cargo container coming in from china is FEDEX’d to the company in California to clear it.”  The fedex pick up, which we scheduled yesterday to come no later than 430 didnt come till 530.  We close at 5. Guess who stayed late for that?!?!

Go to post office to get an priority envelope (cause, oh yea he threw them out cause he never uses them) and ask for some tape to attach the label. “we don’t give out tape. You have to buy it. Didnt the boss give you money for when he is away?”  I just gave her this are you fucking kidding me look. Stormed out in a huff..ran back to the office (cause said boss doesnt leave money for us to run his business while he is gallivanting on the beach in florida cause he needs the money for said gallivanting) to tape the fucking label onto the envelope and went back to the stingy tape hoarding post office and slammed the envelope on the counter in front of her and walked out without a word. Cause if I’d said a word to her…it probably would have resulted in Ryan need to get bail money for me.

At this point I still havent eaten lunch because all the crap going on in the office, I didnt get lunch and really didnt have the money or inclination to spend the minimum 20 bucks for delivery w/o a fee on take out. The pawn shop guy went to one place and didnt ask if I wanted anything. See if buy him fucking coffee again any time soon.  So yes, Im hangry on top of all this.

At 445 while i was at the post office (yes i know these are all over and not in chronological order to how the day went) the boss calls and ryan answers and the boss wants me to run a credit card for 3k of a client that gave the ok. Mind you, he can log in from his laptop and do it himself but again….gallivanting on beach. I ended up doing this from home because there were internet issues at work towards the end of the day.

When i got home and i was walking the dog around the yard (after i cleaned up a greeting card he found somewhere and chewed up) i moved a piece of split firewood (stuff not stacked yet) and got a half inch splinter in my palm.  Took Rollo back in, got tweezers and pulled it out and then got work gloves and went outside and stacked all the unstacked wood. Burned off some of the anger inside me but not enough.

One good thing: my favorite customer and also now friend, came in to put more cash on her furniture that she has on layaway and she brought me Easter chocolate. I love this woman. That was about the only sustenance that I got today along with the coffee I had gotten at 745 am. (oh and yea that cash i was made to deposit into his personal account. i asked to keep some for while he is gone for any expenses but he said no).

Tomorrow i have a job interview. I check on one today I went to two weeks ago and they have not made a decision yet. I am actively looking for work so i don’t have to have this stress anymore. I am trying to do something about it, not just staying here and complaining.

#teamdoingit

(WARNING-CORNBALL POST INCOMING): I woke at 3am and couldn’t go back to sleep. Tossed and turned some, then, picked up my phone and started going through facebook. I saw Stacey‘s post from last night wearing her tiara and that stunning triumphant smile she has, and even though she was exhausted, she did the thing. My brain started listing off the friends that do it every day despite shit days, sore bodies, hideous weather and screaming kids: Stacey, Meredith, Craig, Christin, Jennifer, Elizabeth, Fergus, Adam, Hugh…and many others. These people inspire me…you my friends. So, I said to myself… “Get up and do the thing even though its 4:30 in the morning. What the hell else are you going to do this second…and the only magic that will make you healthier and slimmer is willpower”. So I said, fuck it, got up, put on sneakers (yes still in my nightgown) and got on the treadmill for half an hour. This is the ugly picture..rats nest hair, sweaty, no bra and very thirsty (forgot the water bottle on counter), but, I did the thing. I know it wasnt for an hour, I know I havent done it every day but I did it today. I have to take it a day at a time. Like going through this past year..one day at a time because looking too far ahead was crushing and made me want to just go to crawl into a hole and pull a rock over the top. Each day I make an effort to eat a little better, move a little more. I didnt gain it all in a day, I’m sure as hell not going to lose it all in a day.
 
Well, anyway, I did the thing. #teamdoingit #healthybody20170131_050147

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!

Faith in humanity, restored!

In a world where everyone keeps their heads down and minds their own business, the kindness of strangers still leaves me in awe and can make me cry with such happiness and gratitude, it makes me feel better and have hope for this world we live in.

We were out of milk and a few other things. Made a stop to Shoprite to pick things up for home (OMG how could I have spent that much for so few groceries!?!) and as i was loading my sacks of groceries into the trunk, another car pulled up two spaces away. I walked around front of the car with my empty cart and offered it to the two ladies saying it rolled well. “Rolls well, huh? Sure we’ll take it!” they said laughing.  The one woman then complimented me on my hair coloring and asked where I’d gotten it done and what was the inspiration for it?  I told her about Kyle and what he was going through and how he’d chosen a blue wig to wear and that if he wanted me to do the same I’d shave my head and wear a wig too, but he declined it and said he just wanted me to dye my hair and thus is the reason for my colorful do.

The two ladies looked at me with their hands over their mouths. One of them comes to me and gives me a hug and says “We never come to Shoprite. We usually shop other places but decided to come here today and now we know why. We were meant to come here and meet you. We will say prayers for your son and put him on our prayer chain.”  I was so moved by the kindness of these women, I called my husband and told him on the way home about what happened and it made me cry. (as it is again as I am typing this)  Thank you ladies for restoring my faith in humanity. Bless you both!

 

Exhaustion, Depression and Stress..OH MY!

I opened Facebook this morning and saw a stunning picture of friends in front of glorious scenery on their vacation abroad and while I was so happy for them that they saw such wondrous views and had these fabulous experiences and OH MY GLOB that waterfall was just breathtaking….I burst into tears.  Not really the reaction I was expecting to come from myself. Quite shocking actually. Admittedly, I was envious of them. I adore them completely, I have no ill feelings in even the slightest towards them and their various trips they take I live vicariously through their pictures grinning from ear to ear and vowing I will go there someday, but I am envious.  I am finding a lot of late, that i am envious of what everyone is doing, the lives their living. They are living…..LIVING!! I feel like I am barely surviving each day and each day it is a struggle to do that.

The old saying that goes something along the lines of three steps forward, two steps back (or however it goes) I think is going to be my new mantra. When I feel like I get a handle on things, something trips me up or shoves me back a bit. This morning started with challenges (like waking at 3 am and not getting back to sleep) and try as I might to not let it set my mood for the day, it did.  It started with something as small as my son not brushing his teeth…for several days because he never unpacked his overnight bag from a sleep over. I mean..come on!! Yea, I know..he’s 12 and I should know better. I guess I underestimate my kids in hoping they will do basic hygiene every day without me having to remind them to do it. *smacks forehead* How silly of me!  Lesson learned: 12 year old boys don’t care nor think about these things. (Note to self: Start taping reminder notes to their mirrors and computer screens) I became very angry over this situation. Probably more so than I should have. I yelled. He cringed. The puppy cowered. I stormed out to go to work feeling like worse Mom in the world.

Now, today was to be the first therapy appointments for he and I. Being majorly stressed at all that has happened and is happening in our lives of late, I was very much looking forward to it. I should have known that it wouldn’t be that easy, it never seems to be in my life.  Mind you, i worked for a couple weeks with a case worker through my insurance company to find the right therapist that would fit for both my son and I. They took my insurance as well.  This morning at 8:30, the therapy office called to tell me my son’s insurance was canceled at the end of January and they couldn’t find me in the system. I felt my heart skip and start to beat faster and I think my eye even started to twitch a little.  After a call to the insurance company to verify we were still there and active, which we were, I called the office back. It was then they said they did find us, but, as it turns out, they don’t take the plan type that we have with said insurance company. However, they could set up a private pay price so that I could keep the appointment.  At this point I can now feel my pulse in my neck and temples and the angry tears started brimming in my eyes and I believe the next words I said were “Are you fucking kidding me!?” came out of my mouth and the lady uttered an oh my seemingly shocked to her foundations that I had the audacity to swear. Can someone please tell me why these offices can not check out the insurance eligibility prior to the few hours before the appointment?!  I promptly told her to cancel the appointments as I would not be keeping them since they didn’t take our policy and I certainly don’t have the funds to pay for their “private pay” fee.   Weeks communicating with a case worker named Johanna at our insurance company via email and phone calls and she couldn’t even tell that this place didn’t take my plan type?! Isn’t that this case worker’s job? To confirm these little details before saying Go ahead and make an appointment?  I called the insurance company back yet again and well, she couldn’t answer my call right now and would get back to me.  Right after that, the hospital calls to say I have to come back down (after I just left there yesterday afternoon from being there this whole weekend) so that they can train me on how to run a pump for an NG tube for feedings.  I was there..for four days, and not once could they have shown me this while I was there and they were doing them? After being told earlier that a visiting nurse would come teach me at my home, I am now told I HAVE to come back down and do a 3 hour drive because they do not trust outside visiting nurses. There is now a red haze on the edges of my vision.

I feel utterly beaten down, deflated and broken. Thankfully I am at work alone right now because I sat at my desk here and bawled in complete frustration and anger for quite some time. When that happens, the mind wanders through the strangest things and you reflect on a hundred things that have nothing to do with the insurance company but only further you’re growing depression over the situation and what life has thrown at you. My brain decided to reflect on my missed vacations due to health reasons with my husband last year..then this year with my oldest son’s..not to mention caused us to post pone our wedding and cancel a honeymoon all together. It reminds me of how poorly I feel i am handling my life right now which consists of work, trying to maintain the house and the rotating hospital stays for treatment or pop up fevers and try to raise another child who is also dealing with the stresses of a sibling with a major illness and acting out accordingly. Oh yea..and a puppy who seems to be have an endless amount of poop and always has accidents no matter how many times we take him outside to do his business. He reminds me of one of those play-doh extrusion toys!   In one end and out the other almost immediately! My brain decided to remind me of just how much life I was missing and all the fun I was not having. All the life we are not living.  I feel like the most selfish person in the world right now. I feel like I should be able to push all this aside and be that good strong person and focus entirely on his treatment and be that positive, uplifting supermom i should be. I am not. I feel like a failure on top of the extreme selfishness.

I know..this isn’t forever. I have had multiple people state that to me to try to help me to see the light at the end of the tunnel. FYI: It doesn’t help.  I know that when he is cured and back to his old self this will be something to reflect on as a struggle we got through and move in with our life.  But that time is not here yet. There are still months ahead of us in going through his treatment to reach that end goal. Hard, tough, stressful, painful months. We are barely half way in all this and I pray I can make it all the way through mentally and hell..even physically. I am trying to take it one day at a time so as not to feel overwhelmed, which is a monstrous feet in of itself. I have a feeling I will end up on some type of anxiety/stress medication and almost definitely something for blood pressure before the end of all this. I am fried.

I did warn you at the creation of this blog it wasn’t going to be all rainbows and unicorns and sunflowers, right? Right?!