It’s the Little Things

I’ve been down for the count since the end of February.  I was tested once for Covid-19 on March 25th and it came up negative but the ER doctor and my primary are positive that I did have it.  Both encouraged me to retest in a few days but I declined.  The treatment plan wouldn’t have changed so what would be the point really?  So I hunkered down and quarantined at home like so many others.

As you know I live with my son who is 12 and so in an effort to not contaminate him with my germs I in essence turned my bedroom into a studio with the exception of a bathroom because we only have one in our house.  So we got a mini fridge and a second microwave as I was going to be living the dorm life.  (Joey was super excited about this because he called dibs on them after I was all better for his room so he’d have a real “man” cave – it’s the little things I tell you.)  He’d be living the bachelor lifestyle of his dreams.  He could leave his dirty clothes on the floor and I wouldn’t care.  He could eat all the snacks in the world and I wasn’t gonna care.  Jokes on him as there were only healthy snacks to be had.

We communicated through our bedroom doors.  Sharing laughs when we could and tears when we couldn’t.  There were scary days where I couldn’t breathe.  Going down the stairs to use the restroom was difficult because I had to do a breathing treatment just to be able to get enough oxygen into my lungs to make the accent back up.  But I managed it and we’d count it a win.  Some days he’d have to don his mask and help me.  It’s the little things.

My sister Crystal, who herself was recovering from shoulder surgery, and her hubby Jeff filled in for me.  Grocery shopping and getting my meds and helping to parent my son became their norm.  More importantly to me was them having Joey over for dinner several times a week or just to watch a movie on TV with them.  Sometimes Jeff would create a project at their house that he needed “help” with just so Joey could get out and have something productive to do and for a time be away from having to worry about his momma.  Making his life seem somewhat normal.  Thank goodness for family.  It’s the little things.  The little blessings disguised in the ordinary, everyday things.

Some days Joey and I would put on the same movie in each of our rooms so we could watch it “together”.  Getting our joy wherever we could in small measures each day.  We’d often choose movies we’d already seen that are some of our favorites because we both needed a guaranteed happy ending.  Some this was even beyond me and all I could do was sleep, do breathing treatments and then sleep some more.

Eating was difficult because I literally had no appetite and no energy to eat even if I did.  But I have a child.  A child I love more than anything and that I want to be here for to enjoy the simple pleasures life has to offer with.  So I’d eat.  Usually a can of soup or cottage cheese with pineapple, something simple and quick.  Joey on the other hand got creative.  He loves to cook and so he was busting out his phone and googling all kinds of new fish recipes – his favorite and cooking with combinations of spices I never would have thought to put together.  He’d text me photos of his creations and make me smile with his creative plating stylings.  I’m telling you it’s the little things life offers you that keep you going when you don’t think you have one more breath in you.

The hardest part for me was trying to comfort my son when I couldn’t hold him close to reassure him.  When I didn’t know how to answer his hard questions like, “Mom if you stop breathing do I call Aunty Crystal first or the squad?” or “If you die do you want to be buried or cremated?”.  We had really hard discussions about what was on the nightly news and that it wasn’t fair that they weren’t always trying to resucitate patients in the hospitals who coded because it could do more harm than good without a good chance of recovery any way.  I have several underlying health conditions.  Fibromyalgia is only one of them.  I have several other more serious ones.  I knew I didn’t want to be put on a ventilator and most hospitals weren’t offering Cpsp or Bipap options prior to being put on ventilators which are so hard on the lungs.  I also knew I didn’t want to be exposed to anyone elses germs increasing my risks just that much more.  I also didn’t want medical staff making life and death decisions for me.  I have a child.  A child I love more than anything.  If I code I damn well want CPR.  I want to be shocked.  In the hospital they may choose not to do that because it’s to high a risk to the medical staff if they feel my odds of making it are below average.  Or if the administration has given the directive that if you have “x” underlying conditions and are over the age of “x” then you don’t try to resuscitate.  At home I’m fortunate to have the Chief of our local Fire Department who is a I first responder living right across the street.  I’m guaranteed to get the response I want if I stop breathing.  I’m guaranteed to get a quick response as the fire house is right around the corner from my home.  Again it’s the little things.

It’s been a little over four months and I’m finally starting to feel better.  I’m down to one breathing treatment on most days plus the use of an inhaler.  I’m no longer bedridden and Joey and I now get to truly watch movies together.  I’ve gotten to grocery shop for myself though it physically wiped me out for several days.  I’m still sticking very close to home and will be wearing a mask for at least the next year according to my doctor’s but I’ll take that as a win because I’m breathing and I get to hug my kid.  Feel the sun on my face.  Walk my dog.

It’s the little things.

Golden Dreams

That’s Life

I get asked all the time why I don’t work. I don’t work because I’m unable to. I’m good for a couple of hours but can’t even guarantee that day to day. I can participate in life and have a good day or two and then be down for a week trying to build my reserves back up.

I had an active life. A year before Fibro took my “normal” life away I did my first and only 1/2 marathon. I had reached management level in my career. I was able to camp and hike to my heart’s content. Then I wasn’t. My life as I knew it was over. I still grapple with that. At being disabled when I only want to be able.

I keep waiting for that remission phase to take effect. I’ve been waiting for over 15 years. I keep waiting for my normal life to return. Well guess what, that old normal doesn’t exist. I just have today. I just have to accept the fact that this is to be my new normal.

One of my doctors once told me that yes I can’t sleep on the ground any longer so get an air mattress. No you can’t hike for 5 hours straight putting in 10 to 12 miles so drive into the forest a ways and then begin walking until I start to feel a little worn down. Pause, take a breath, journal, have a snack and after a little while start back towards the car.

I’m realizing now that new adjustments need to be made. Maybe it’s time to buy a small pop-up camper, get some trekking poles, begin pacing myself better, eating healthier, spend more time with friends even if that means staying in and watching a movie together or playing a board game.

Time evolves and things change. This isn’t the result of having Fibro, it’s the result of living. Of growing not only in years but in wisdom too. Life can be hard but beautiful too.

Love

I read an article today about a lady that loans herself out to folks in the LGBT (Lesbian, Gay, Bi-Sexual and Transgender) community to stand in for their parents or loved ones who have not accepted them for who they truly are in their hearts when celebrating special moments in their lives such as marriage.  I thought how amazing, and how sad, in the same breath.  Amazing that she could love and accept a stranger in this way (after overcoming her own bias when her own son came out to her) and how sad that we can’t just accept one another for who we truly are.

I know many say it goes against God and that it’s a choice.  I’m not a big believer in a God who can’t love all his so called children the same regardless of their sexual orientation.  Also if we are all created in His image as they say, how can we then say that a homosexual is wrong in believing in who they truly are?  I just don’t get that.

I also don’t believe it is a choice because who would knowingly choose to be a lesbian or homosexual when so much of society looks down on them and are unable to accept them?  Who actually treat them as less than, or perverted, or compare them to pedophiles. I think no one would choose to be perceived that way and that is why I’ve always believed it is not a choice but rather an acceptance of who they were born to be.

Yes there are those who are experimenting with their sexuality and that is a conscious decision on their parts but for those who truly love same sex partners I don’t believe it is a choice.  Just like my attractions to the male sex is not a choice for me.  It’s just who I’m drawn to, who I want to share my life with.  Why should it be any different for those that are LGBT?  It shouldn’t be.

So for anyone out there that needs someone who accepts them for who they are 100% of the time, I’m your girl.  I’ll support you and would love to celebrate your special moments with you.

Heaven Awaits

Today is sad day for my family as my Uncle Jake passed away last night after suffering a massive stroke.  He was the last of my mom’s siblings to depart and so my heart is happy knowing he’s reunited with his parents and siblings but it is also heavy because my time with him has been cut short.

Uncle Jake was the jovial one in our family.  Always with a ready smile, and big hug, and a witty joke.  He made the world a little brighter and so I’m sure he’ll do the same in Heaven.

He wasn’t perfect, had his trials but succeeded to overcome most of the challenges in his life.  He’d give his shirt of his back to help someone be it family, friend, or stranger.

I have many memories of him.  Holidays at his house hanging out in the backyard in November playing games with my cousins while he barbecued the turkey.  It always turned out perfect, crispy skin and moist tender meat on the inside.  He’d always make a toast and flirt with all the girls, me at age 9 or 10, my friends too, the Grandma’s in the group and especially those ladies that were in his age category.  He was charming all the time just being himself.

He always held our Easter gathering.  He’d delight in being responsible for hiding the eggs with little treats in them and the giant gold ones that held anywhere from a dollar to one year a $100 if I’m recalling correctly.  He’d hide them in tall grass and high in trees.  The gold ones were super special and he’d always make us work hard to find them, hiding them inside logs and under cow patties or horse dung.  My cousin Adam always found those ones because he wanted to find the money the most out of all us cousins.  The adults would sit around watching us, laughing at our attempts, and especially at Adam who would lift cow patties to get a little cash.

I’m fortunate that I have good memories with 4 out of my 5 uncles and aunt on my Mom’s side of the family.  Each was unique.  My Aunt Lee with her vivacious personality and bright clothing.  You never knew what was going to come out of her mouth much like myself.  My Uncle Ron who also had a ready smile and would do anything for you.  He filled in for the dad I never had and walked me down the aisle and followed my 1st hubby and I all the way home after our reception honking all the way.  He was crazy in that way and adorable.  My Uncle Armas who helped raise us practically all our lives, driving down from Reno and spending every holiday with my mom, sister, grandma and I.  He taught me how to change a tire and check my oil.  He drove me and my friends to school one day in his limousine making us feel like movie stars.  Every Thanksgiving he would bring a load of Christmas presents down for my sister and I and hide them.  We’d search for them the whole month of December without success and always had a grand time opening them on Christmas day because you never knew what you’d get – dolls, antique jewelry, silver dollars.  He had a penchant for a bargain hunting and would hit yard sales and estate sales searching out perfect little gifts for us all year-long.  My Uncle Ken and I never formed a bond – can’t really explain why but there  you have it.  And my loveable Uncle Jake who brightened every occasion, had the gift of making everyone feel special, sharing his holidays and his love with us.  They will all live on in my heart.

Party on Uncle Jake, enjoy your family and know that you will be in our hearts, guiding us to live up to being special, witty, and fun.  I love you.

Trick or Treat

We’ve been under the weather at our house – Joey missed school Friday and barely moved from the couch.  He just wanted to cuddle up with me and of course being his momma I wrapped him in my arms and laid on the couch with him.  Day two I woke up feeling stiff and sore from lying around the house with him the day before and on top of that I awoke with a tickle in my throat and pain when I swallowed.  I notice as each year passes my immunity level seems to sink lower and lower as my reserves are all being utilized to battle my pain on a daily basis.  Doesn’t leave much to fight off a common cold or flu bug.

We waffled all day on Saturday as to whether or not we should even attempt trick-or-treating.  I tried to bribe him with the drive-in since he’s been wanting to see Goosebumps and he went along with the idea for about an hour but as dusk began rolling in he said he’d rather go trick-or-treating even if it was only to five or six houses.  So we threw on his Freddy Krueger costume and began our trek out into the spooky delights that Halloween always brings in our neighborhood.  We saw friends along the way and stopped long enough to say hello but Joey wasn’t up for chit-chat this year.  He didn’t even really care to go with friends.  He was on a mission to hit as many houses as he could before he wore himself out.

All along our journey we kept running into people who had been by our home, shrouded in darkness, no decorations up, and they were all very disappointed.  Our house is one of those destination houses.  You know what I’m talking about, the ones that they come to each year to see what the theme is.  Last year was arachnophobia with animated spiders sliding up and down the house, jumping out at the kids as they braved the walkway of webs to secure their candy sneaking by the gardener who had been consumed by them and his body cavity used to breed more of the little creatures.  Another year it was a haunted maze with the neighbors pitching in to staff it.  However this year my hubby had to work the holiday and he was beyond depressed.  He started to get out decorations and then decided screw it he wasn’t doing it if he didn’t get to be present to scare the kids and adults alike.  His favorite holiday and he was boycotting it.  I kept throwing ideas out but he just wasn’t into it and so I let it go.

When we’d hit about 10 houses we were done in so we headed home to pass out candy.  We had hordes of people this year.  Not just the groups of two to three kids at a time but groups that were ten or more.  It was crazy.  I kept having to run back into the house to get candy to replenish our cauldron.  I’d leave Joey in charge but each time I came back out he’d be surrounded by the masses and they’d just be helping themselves while he shouted, “Just one piece so everyone can get one”.  It was too cute.  I think he actually had more fun passing out treats then going out for them himself.  He and I both missed having our house decorated and getting to play a role.  I can tell you that after all the comments we received and bummed out expressions we will definitely be doing something next year and it’s going to have to be something extra special to make up for the fact that we bombed this year.  I told Larry to put in now for next Halloween off so that he could participate in his favorite holiday.

The neighbors up and down the block outdid themselves.  We had graveyards galore and a man getting the electric chair.  Cute ones with Casper the ghost and smiling jack-o-lanterns.  The kids ranging in age from those in strollers to 16 or so all outdid themselves in the costume category – everything from bumble bees to zombies.  I didn’t have one kid that came to my door who was not in a costume of some kind.  That’s a first since usually the teens barely put any effort into it.  I can’t wait to see what they all come up with next year.

So we didn’t trick anyone this year but we handed out lots of treats and in the end were treated to a parade of characters and some fabulously spooky decorations along the way.  Not bad for a Saturday night.

Terrors in the Night

I don’t think there is much worse than watching your young son suffer through night terrors.  They are unpredictable and at first unclear to diagnose as such.  One moment sleeping dreamily and the next in a semi-wakeful state only not really awake talking about the boogeyman that haunts his soul.  It’s heartbreaking and not something you can just kiss goodbye like a boo-boo.  In fact sometimes just the touch of another human being can make his anguish 100 times worse while at other times it soothes his soul.  It’s like walking on a tightrope and doing your best to stay balanced only without all the tools that an expert tightrope walker has in their arsenal.

For a while he had them several times a week, then several times a month, then a day or two a month, then down to just occasionally.  I can always tell when he’s really worried or afraid of something because they come more frequently.  Some are easier to sooth than others.  Some hold so deeply onto his mind that it’s hard to get it to reset to a normal setting.  The one thing that seems to settle him is a little six line lullaby that I created and have sung to him since he was a just few weeks old because I couldn’t seem to retain with any regularity the verses to all the old standard lullaby’s of my youth.  Who knew that something that emerged as a result of my Fibromyalgia symptoms would become so handy down the line.  But it is, handy, to help keep the boogeyman at bay.

Tonight has been one of the worst for night terrors, perhaps because he isn’t feeling well and has been running a fever on and off all day.  It could be because he’s afraid the boogeyman is moving back into our neck of the woods – yes people there are real boogeymen out in the world and they can do irreparable harm to whole families, heck whole communities if they are evil enough in their intentions.  For this momma it is one thing to know how to fight them one-on-one and a whole different thing to fight them in your child’s subconscious.  How do you fight something that is invisible to you but clearly in vivid colors in your child’s mind?  If anyone has an answer I’d sure like to hear it.

We do all that we can in the waking hours – installing confidence and open communication, working with great doctor’s and therapists trained to work with children and families alike and yet on nights like these it’s hard to feel like we’re really helping at all.  It’s hard to explain away why your child who is normally on top of things, interactive, and smart is zombielike on certain days.  Especially when he wouldn’t be able to explain why since he himself has no recollection of experiencing night terrors.  That at least is the silver lining.  He doesn’t have to live through it in his subconscious dreaming state only to recollect and rethink the whole thing again in his waking state.

As a mom I wish I had some magic fairy wand that I could simply wave with a flourish in the air and remove every scary thought that tries to take hold in his mind.  I’d replace them with adventurous journey’s that would appeal to a crazy little boys soul and happy, laugh out loud moments.  I’d give him restful nights of slumber and only pleasant dreams if only I had a magic wand.  But alas, I do not have one of those tools either so for now I’ll just have to sing my lullaby while gently rubbing his back and hope it is enough to soothe his troubled little heart.

Trick or Treat

Last night was such a joy.  I got to spend time with my Daisy troop doing nothing but having fun.  My awesome Asst. Leader Karen opened her very decorated home for our party and the girls all came in costume.  Each was responsible for bringing a treat to share so we had everything from decorated cupcakes to candy bracelets to my contribution of eye of newt ice cream floats.

I created my own version of bingo, Halloween style.  The girls did really well at It winning chocolate covered caramels and marshmallows.  The really great part was that without being asked they just automatically go into helpful mode assisting those next to them with covering the right spots. The cards all held exactly the same characters just in various orders.  I had my own moment of joy when even after we all did the black out round they still didn’t get that they were all destined to win, they were just excited that they had all won together.

Our second game was “Hot Pumpkin” played to the Monster Mash theme.  They did an awesome job playing at it, not getting caught with the hot pumpkin on their hands when the music stopped.  Elsa won the big prize for that one and went home with a stuffed lion.

Being the responsible leader that I am (and more empathetic mom) I then took them outside to burn off some of the many treats they’d take part in.  We played freeze tag, hide and seek, Bloody Mary says…, red light green light, etc.  It was so much fun.

The girls voted to have a party every three months even if it’s not holiday themed but just for fun.  I think it was a good idea as who doesn’t enjoy a party.  It’s a great time to sit back and get to see the lessons we’ve been working on in action from helpful and kind to respectful.  I see it when we’re learning the lessons but it’s expected at those times, the real treat comes when you get to see them putting those lessons into play without being asked.  It validates that they are getting the concepts that I’m trying to teach and that the parents reinforce with the girls once they get home.

Now to prep for Friday’s Trunk or Treat with the Cub Scouts.  That to I am sure will be fun.

 

Powered by Popcorn

Not really, more like power zapped by popcorn.  This year I had the pleasure (yes I am saying that sarcastically) of fulfilling the role of Popcorn Kernel for our Cub Scout Pack 28.  By choice?  Again, not really but no one stepped up to volunteer and since it is the main source of funds for our pack I picked up the slack.  I’ve ordered popcorn, staffed, and manned what is known in the Cub Scout world as “Show & Sells”.  You’ve all seen them at your local grocery stores – the table out front with one or two parents and a gaggle of little boys in uniform selling overpriced popcorn or as we like to say in our neck of the woods accepting donations and getting a gift of popcorn in return.  This was my first year heading it up and it required way more work than had been indicated.  It started with determining just how much popcorn to order for our two weekends of Show & Sells.  Lucky for me I have a great treasure who keeps immaculate records for our pack and so we were able to tabulate the previous couple of years and come up with an average and then ever the optimist I tacked on another 50% of the recommended amount.  I know, for you Popcorn Kernel aficionado’s you’re probably saying to yourself, BIG MISTAKE.  But as it turns out positive thinking does have its rewards.

I called every scouts family personally to get them to sign up to work a shift or two or three.  The first weekend we sold out of every package of popcorn I’d ordered.  Go Pack 28!  Then on the following Monday began a flurry of calls and visits to Council’s offices to try to secure more inventory for our second weekend that we’d scheduled.  After five days of begging and pleading I had enough, I hoped, to supply our second event.  Again we sold out of all of it except 4 boxes of microwaveable kettle corn and I think we could have sold that to if they hadn’t raised the price to $25.

Keep in mind that while all this is occurring I’m being told by more senior members that I under ordered and must have gotten my figures wrong at the onset despite Council confirming that I ordered over and above what was sold the previous two years.  What’s a girl to do… hold my head high, know I did it correctly and the to the best of my abilities and move on with Take Orders.

Take orders are really the responsibility of the scouts families but all along I was there for support, to answer questions, to provide training as needed.  I dressed up as the Popcorn Queen and carried around my popcorn wares hawking them to the boys at our Pack meeting, sharing with them why it was important for the pack and for their scout accounts to give this fundraiser our best efforts.  And it must have worked because the boys hit the pavement and outdid themselves.

For the last 3 days I’ve been tracking down their orders, collecting funds, tabulating to ensure funds equal quantities ordered, collaborating with my pack treasurer, entering all the orders into the online system, wrangling my hubby into helping me proof that I entered all the orders correctly.  One of my Tiger cubs even made scholarship level, selling in excess of $2,500 which necessitated entering every customers name, address and order so he could receive 6% of his sales in a special college scholarship fund.  It was time-consuming, mind numbing, and a major eye strain but I got it done.  The last 24 hours was tracking down parents to secure the boys prize selections so I could get them in the system in time and when my numberous calls, e-mails, texts went unanswered, guestimating what each boy would like based on what I know of them.  Then having to explain to those same parents what I ordered and why I ordered it because THEY DIDN’T RESPOND IN A TIMELY MANNER.

Did I mention this is all volunteer time on my part?  That I run the Pack?  That I’m a Den Leader for my son’s level?  Yes, yes, and yes.  I like being involved.  I like being able to contribute.  To budget my time and my physical reserves accordingly but it’s all a guessing game since so much of it is dependent on other folks who think their lives, their time, is more valuable than my time with my family.  While I’m super proud of how well our Pack did, they more than tripled previous years results, I’m also a little disappointed that some of our parents aren’t willing to take the initiative and help when help is needed.

While for most of these folks it would just cost them time for me it costs me energy – physical and mental energy that I’m already in short reserves of.  So I’m turning off my phone, not answering e-mails or texts for the next 24 hours while I try to recoup some of that energy that was lost to this process.  I wish all parents would equally volunteer, in some capacity, for the common good of all.  I wish that what would have not even been a blip on my energy radar years ago now blows up the system.  I wish that I could have went to the skate park with my son today to watch his mad skills on his board instead of having to lay down and rest, ice bag covering my eyes, while I tried to gain back some of my energy reserves.

So powered by popcorn?  I think not.  Would I do it again if my sons pack needed me to?  You betcha, because that’s how I roll, limp, walk.

Fall is in the Air

Finally it’s beginning to feel like Fall and I couldn’t find more joy in that if I tried.  The slight briskness just energizes me and even on my worst day makes me want to get out of bed and spend some time outdoors.  So it is perfect timing that it’s upon us since yesterday Joey and I headed out to the skate park to join my sister-in-law and niece at my nieces skateboard lesson.  We hadn’t been to one in ages and it was great to get out and see Joey’s enthusiasm for the sport be rekindled.  Elsa was having a little bit of an off day – to many skaters in the park which created quite a distraction which didn’t lend to staying focused.  Still it was cute to see her get up on the board with her coaches help and coast around the bottom of the bowl.  They took there leave after only about a 1/2 an hour but Joey asked to stay on so we did.

He asked Gina all kinds of questions and she was kind enough to help him learn to lean into the curves a little more.  She’s one of those people that you are just instantly relaxed around and want to know more about.  While Joey skated she and I talked.  She’s originally from Italy and only relocated to the states because her parents opened up an Italian language school here in the Sacramento area.  It was interesting to learn that her interest in skating began the same as Joey’s – playing Tony Hawk video games when she was 8 years old on her brothers gaming system.  While they both had skateboards she wasn’t really encouraged to do the sport because she was a girl but she persisted and all on her own.  She baby sat and did odd jobs until finally at age 14 she could buy her own board.  She never saw the inside of an actual skate park until she was 17, had purchased her first automobile and could drive herself to one.  Now 10 years later she’s still loving the sport, is typically the only girl actually skating at the parks, and is sharing her love and skill set with the next generation many of whom are girls like my beautiful niece Elsa.  I love to see strong female role models out there not only for little girls but for my sons benefit as well.  It’s important to me that he realize for himself that men and woman are equal and capable of doing anything that they set their minds to.  He was so impressed with her, even more so than her friend Jay who is a professional skateboarder, that he’s negotiating with me for lessons with her.

Today we headed back over their with the hubby so he could check out Joey’s new skills.  I told him I could only go for an hour since I’m in the middle of Cub Scout popcorn orders but just watching his joy held me transfixed for a little over two hours this morning.  Before we’d even made it out of the park he was asking if we can come back again tomorrow.  That kid of mine, it’s always an all or nothing mentality.

Watching him skate around the park made me want to get a board of my own so we could do it together.  A pipe dream I know as those harsh landings would do me in when my body is already in so much pain on a daily basis just doing the basics of life but still a girl can dream.