“The measure of who we are is what we do with what we have.”
-Vince Lombardi
Anyone with chronic health conditions knows how much it sucks. It sucks for the patient both physically and mentally; yeah, that mental mind fuck of a rollercoaster is a bitch! No matter how many times you beg to get off, Joker is in the background with that horrid mischievous grin and his hands on the controls. But let’s be honest, it’s no walk in the park for those who love and support the individual suffering, either. And I say suffering because that’s exactly what it is. There may be good days but [life] is about -survival-. Hell, it is for everyone, not just those who are ill! Maybe Buddhists have it right by believing human life is about suffering! ::NodsHeadThinkinginAgreement:: As one who is chronically ill, I can assure you that the guilt you feel knowing that at any moment you could let someone down, is enough to not allow yourself the opportunity to do so. It’s easier to fold inwards and isolate. And yes, I do speak from experience. I also speak from experience from the other side as well, being a child with an ill mother.
Back in my initial blog about my mother [03.Mom] I made the comment that as a kid, I saw her either sick on the couch while at home with my brother and I, or out every weekend having fun with her best friend at the time. Obviously as I got older I understood and saw things drastically different, especially after becoming a mother to my own neurodivergent children [Twice Exceptional]. Girl needed a break!!! However, I never wanted this for my children! I never wanted to be the [“sick” mom on the couch] where my 6 year old has to ask every day at pick-up if Mom is sleeping or not. I never wanted for them to attend school events with mostly only their father because I wasn’t up for it. I never wanted to have to let my children down because of my health. But guess what? Chronic illness, being the bitch that she is, doesn’t give me a choice… ::blowssteam::
Yesterday I was reminded with a smack in the face about how unstable my life can be when it comes to my health. I had put my name in the hat and won the draw for being able to help out at the elementary school, helping the kinders tie dye shirts. I was SO excited when I saw the initial inquiry and almost cried when notified that I had been selected! Igor had also put his name in for chaperoning their one and only field trip taking place just two days before the last day of school. He, too, won! To say that Kb was beyond excited is an understatement! Seeing him happy knowing that we both wanted to be there and were both selected, was everything. <3
And then came the innocent question the night before… “But, what if you pass out before or aren’t feeling well?” with a quivering pouty lip. The heartache I saw behind his eyes shattered me at the thought of it! It took everything in me to smile and reassure him that I -would- be there!! He was nothing but smiles afterwards. The next morning I got up extra early so that I could shower and rest beforehand so that I wasn’t rushing and could conserve my energy. It was a damn good thing I did or else I don’t know if I could have pushed though; it was a rough morning. I had to have been flying high with adrenaline, it’s the only explanation. Kind of like when you have a big event or vacation – your body doesn’t [always] let you down until the hard crash at the end or upon return.
After getting ready I crawled into bed with my not-so-little baby boy and just snuggled him until he woke up. The first words out of his mouth, barely a whisper? “Are you ok today? Are you going?” ::breathes:: “Yes, baby boy, Mommy will be there! I promised you, you know I don’t make a promise I can’t keep!” <- Even if I had to be wheeled up there in a wheelchair, disheveled and grotesk, it didn’t matter what other parent volunteers may have thought of me, I was only there for my son. He would know that I [showed] up and >kept my promise< and that is more {important} than any opinion that isn’t even my business!! Fortunately for me, I was able to get ready, I was able to show up and even drive myself home in the rain after. (Igor had driven me up there and walked home so I could have the car, not knowing when I’d be done.) It was chaotic, very energetically draining but also incredibly rewarding. Not only was he happy, but he was -so- proud that I was there! When he got home from school he yelled that, “today was the BEST day everrrrr, because I got to see you!!!” ::fightsbacktears::
Yeah, having chronic health issues sucks. Letting anyone down sucks. Letting your children down? Probably the worst guilt ever! However, sometimes, having chronic health issues doesn’t show you the ugly truth that you believe it to be. No, sometimes it allows you to see and -feel- the gratitude for being able to follow through. Sometimes it reminds you how brittle time is and that embracing the good in the moment is truly the gift of life. So (at least for) today, I see it for what it really is; everything. <3
