2017 a story not yet written.

The easy way out is to sit and complain, feel sorry for yourself or constantly wonder why? I have never liked the phrase “It is what it is” and yet for some strange reason it seems to be flowing from my mouth more than ever lately. As though my repertoire of emotion driven responses has taken a thoughtless vacation. In reality I have allowed myself to quit, therefore to find conversation worth having has lost its drive, its zest, leaving no creative or emotional yield.

Our family has started the year out with continuing troubles. It is beginning to feel as though each year meets us with a newer version of this show we call our life. A downcast tragedy written and directed by who?

Our lives are a journey, we are never guaranteed safe passage through it all and though it would be easy to complain or blame God (trust me I have done my fair share of why me? And what the fuck!!) In the end it is up to me not God to make a difference. To cry towards the sky with a shaken fist screaming at a creator or heavenly being leaves only the foolish exhausted and hoarse. God (depending on what you believe) may have created you, but you and you alone need to be able to hear the voice when it calls to you. To open your eyes and your heart, to remove the blinders and stigmas that come with the drudgery of day to day living before you can make an appropriate decision or change with your life.

The reality of it all is we (my family) are nothing special in the grand scheme of things. We (my family) and our troubles are but a spec amongst the hundreds of thousands living with troubles/struggles of their own. What makes our struggles any different from those struggling around us? What I do believe is how we handle our situation in particular may lead to another feeling hope while they wallow in the despair of their own personal pool of troubles. Sharing, compassion, and the ability to constantly learn, change and grow is what makes us unique as human beings.

I often find myself thankful for the social media platforms we all enjoy. I believe it helps us all to find, create, share and understand much more than we ever could prior to living within our own social boxes or narrow geographical boundaries.

On one hand I believe much of our perceived troubles come from looking at others who consistently post online what appears to be a perfect life. If we don’t feel our lives are up to snuff we tend to live through others and that can lead to feelings of resentment or envy that we may not have the ability to recognize. And yet we also see others who are struggling with every aspect of life so we tend to either selfishly feel a little better about ourselves, or we become distraught with those troubles igniting our inner compassionate drive thus feeling an overwhelming need to help. Another amazing human trait that could easily be lost within the alternate reality world surrounding us. Although social media often times comes across to me as the biggest reality show on the planet (and I hate reality shows for there is nothing “real” about them) it is a mind boggling creation to say the least.

Where Social media becomes a place of hope from the heavens is during days like today. One blurb, a sentence or quip and Social media becomes what it was initially intended, a place of connection for everyone you care about to come together. Words of encouragement flow like rivers to the sea. When someone is in trouble, within seconds there is another there to help. When a message needs to be heard by the masses this electronic medium becomes the town crier! It has become a community without terra firma.

 

So thanks to this wonderful world of connectivity, 2017 has not started out as bad as one would think. We are here, we are all alive! Encouragement and love flow freely through texts, blurbs, snaps, postings, phone calls and the shared written word. I say take whatever life has thrown at you and find a way! There is always a way. No person should ever feel the world or deck is stacked against them solely. It is your life, you and you alone make the decisions on how you are going to handle the curveballs life can and will throw your way. I may not like what is happening right now, I may feel frustration over how our life is going and what is happening within the confines of my little niche in the world, it may pain me to see the woman I love and our children suffering through what is essentially a not fair situation. But there is always something to be learned, a message to be shared, a heart to be touched, a moment of never ending love to be cast upon those involved.

We will get through it all, journey be damned.

Jacy is still at Stanford and will be there for an as yet undetermined period of time. She has a pretty bad case of pneumonia along with Rhinovirus (a cold). Now a cold is not so bad except Jacy has an extremely compromised immune system which can lead to very serious complications if she becomes infected.

For a few months now, Jacy’s heartrate and ability to breathe have become a huge concern for us. She can’t make it from the bed to the bathroom without a heart rate of 160, and her oxygen saturation levels dropping into the high 70’s, low 80’s even with oxygen on at 4 liters per minute. She ends up winded and exhausted by simply moving 20 feet. It has left her demoralized and feeling defeated.

The other morning as Jacy was having trouble controlling her heartrate and breathing, and the world became rapidly smaller she felt as though she was going to die. It was painful and it was scary. There was no feeling of bliss or relaxation coming over her and in that moment as the lights were growing dim she realized this was not the way she wanted to go. She was choosing for herself, fighting for her right to pick where and when!

Yesterday in the hospital still sad that she missed out on Parkers birthday she vowed to fight even harder. This thing, this GvHD will not win! There is way too much at stake and no one is going to tell her how it is going to be!

So today she sleeps, today I quit whining about how tired I feel, today we relish in the endless love shown us by friends and family through phone calls, texts and the almighty social media! Today we look forward to what tomorrow has to bring.

Tomorrow isn’t written yet and what we do with it determines how this story goes….

 

 

 

 

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12 thoughts on “2017 a story not yet written.

  1. Jacy and Betty,
    While I’m not a big facebook guy, I’m a Betty fan. Is this social media?
    I do it because I know absolutely nobody in the world like y’all.
    I wish it seemed your life was perfect, because Jacy would be well.
    Thanks again for sharing.
    I’m hoping and praying so much for Jacy, and her amazing family!
    BW

  2. James: Joe and I continues to hope and pray for your family. It is about time you guys get a break from all of the struggles life has been throwing at you! Thank you for sharing your difficult, as well as inspirational stories. I should have gotten your autograph last time I saw you as you really do have a gift for the written word 🙂

    1. Thank you for the continued prayers Alicia. Tell Joe hello! I enjoy writing, it really is an emotional release for me. As for my autograph I am humbled by the thought, but it’s just a guy writing some stuff that only a handful will ever see. 😝

  3. Beautiful words! I am so grateful for discovering your blog and once again, feel like this online community leads me, somehow, to bloggers I am enlightened by. Your words are so true and reflect a lot of my own experiences since starting my blog. I hope your pain finds solace and healing. 💖 I am so sorry for your family’s suffering.

    1. Thank you so very much for the kind words. It is nice to find comfort in others stories and that was the exact reason why I have chronicled this entire journey. To share, experience and grow. There is always strength in numbers. 😀

      1. I am currently reading your PTSD post and I am so touched and crying as I try to get through it. THANK YOU FOR THE SHIT YOU HAVE ENDURED! You are so important in our communities and I am so grateful and indented to you for your service! I am so glad I have never asked the question…I know it stems from my dad dying. I wanted to tell you, I realized through your honesty, that I never considered the paramedics who had gone to the scene of the accident my dad dyed in. I also want you to know, the sudden death is traumatic and life changing to those left behind, but I am very grateful for the empathy and compassion I have gained from my dad dying. Death is so extremely hard but time DOES heal and it gave me a perception that I think has made me a better person, especially wife and mother! I DON’T take life for granted and I cherish the moments. I just take life slower and realize how precious it is. Thank you for your strength and for sharing! It has touched me forever ❤

      2. It’s ok to be “indented” really! Ha ha!!! I love my job more than anything but at times between my job, the past, and struggling with my wife’s continued illness it all can be a bit much. I read through a few of your postings and plan to read many more. You are honoring your father in an amazing way! We (parents) should all hope to have done such a good job that an impression is left of such wondrous emotional magnitude. God Bless You. 😀

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