So once I heard of a saying like “TGIF”???? Hhhhmm…well I saw it all over Facebook today and I just thought wow…so TGIF really doesn’t apply to those trapped inside the 4 walls of a small hospital room. It’s funny how I say it like I’m the one stuck here. Really? I’m here by free will, I could walk out this door because I’m not hooked up to IV after IV, I don’t have 15 more therapies and meds to get done before midnight tonight. No respiratory therapist will be looking for me if I left…so why in the world do I feel it at all appropriate to call this my suffering? Because it’s simply not. It is not my own.
It is my sons.
He’s the one lying on that God forsaken bed, playing video game after video game, trying in desperation to numb the pain of being here, away from his brothers and his daddy. It is him. Not me. It’s him having to endure all of those medical miracles pumping thru his veins every 6-8 hours thru that implanted PORT in his chest. Not me. It’s him having to do all of these blood tests, blood troughs, blood cultures, x-rays, sputum cultures and viral panels. Not me. It is him having to drag his oxygen cord around this room like he’s a dog tethered on a leash, just so he can breathe. Not me. It is him who has to endure all of these tube and bolus feedings thru his g-tube implanted in his stomach, because he can’t find the strength or the desire to eat anymore. Not me. It is his pain. His life. The only life he’s ever known.
Funny thing, this cf disease. It is quite sneaky and devastating. And yes, it is of course progressive. Naturally. That’s the first thing you learn about this disease yet it never really sinks in fully I think. Hey Sarah define progressive…ok sure…it means to do something slowly over time, not right away. Wow Sarah, you are right! How smart. But sheesh, you must have then somehow MISSED the lesson on how it is real. How in cf it totally applies. Each day is worse than the one before. Noticeably or not. Always for the worse. Some days you may think for the better, but that’s how cf gets you. It is indeed a very sneaky disease. You may sometimes feel like you’re making great progress, that things are finally going ok. You’ve escaped those isolating, sterile hospital walls always knowing in the back of your mind that it is truly only a matter of time till the next shoe drops. There’s always another shoe. Always. You get to a point of comfort outside of these four walls. You make plans. You go about your day to day routine. Enjoy time with friends. Family. All the while knowing in the back of your mind, that at any moment it could all end again. Just like that. You start to fear making plans. You let cf kind of take over your daily planner, your summer vacation. Not intentionally of course but pretty soon it just creeps its way into your life very subtly, progressively. Not just health wise.
It’s really not a term that I gave much thought about until recently. It’s a word I hear all the time with that dang lady name d Flo selling auto insurance on tv, but disease-wise you also hear it. You understand its meaning. But you don’t fully let yourself comprehend it. But here almost 7 years into the fight I look back and can see without a shadow of a doubt the progressiveness of this monster. It’s horrid. It’s progressively devastated our family more and more. It’s progressively closed the lines of communication between my husband and myself from fear. It’s progressively crept its way into more and more of our days, hours and minutes. It’s progressively taken my sons health, almost unknowingly. Well more unnoticed I would say. Because generally I knew with each hospitalization growing closer and closer together that it was progressively getting worse. But never fully saw the effects of it all. The progressive disaster it’s caused Conner. Stick thin. Ribs flaring. Knees poking out. Thighs so thin I can fit my hand all the way around them with ease. Dark sunken in eyes. Pale skin. Blue tinged fingernails. Toes clubbing from lack of adequate oxygen circulation. Less talking. More breathing. Heavy breathing. Labored breathing. Sunken in neck. Rapid heart rate. Less eating. Less appetite. Less energy. Less drive. More rest. Less able to make it thru a day w/o accommodations. More riding in shopping carts or being carried everywhere. Less walking. Less. Less. Less. Always less. Progressively less.
Seems like just yesterday he ate. A lot. Chunky cheeks. Healthy, happy smiles. I have many pictures of him up until I’d say age 4 where his face would be smothered in something. Pancake syrup, mashed potatoes with a heap of butter. Buttered noodles. Whipped cream. But as his breathing ability got progressively worse, so did his appetite. So did his ability to eat and breathe at the same time. Less. Much less. And now almost nonexistent. Can you imagine the arguments about that? How hard as his mom to not fight him to eat. He desperately needs calories. More than 4000 a day he needs just to break even. The business of breathing eats his calories right up. Always. Sitting together at the dinner table watching my 2 and a half year old younger son eat away. Eat anything. Always eating. And looking at Conner’s plate, hardly touched. Not even moved around in an attempt to pretend he’s eating. Nothing. No point. “go to bed!” “no more games!” you name it. What a struggle. The stress and the horrible helplessness as a mother knowing just how desperately he needs those calories but he’s unable. Unwilling. Eating progressively less and less. I had to stop the fight over food. It was too much stress. Unnecessary stress. Because I cannot imagine in any shape or form the feeling he must feel each day. Just to breathe. The pain. The constant pain. Always pain. Heaviness in his chest. “my breathings not good today mom!” uhg. I just can’t fully comprehend that.
The business of breathing.
The rise and fall of his chest. Progressively more rapid. More noticeable. More pronounced than before. Not even that long ago really it all changed. Damned mrsa and pseudomonas. Horrible cf bugs. The bugs keep getting worse. With worse implications. I’ve educated myself almost daily about cf, about the bacteria, all the colonization’s possible. The medicines, the therapies. The hope for a cure pipeline. I know it. But when it’s your son who cultures pseudomonas at 2 years old, knowing in your mind all the research that you’ve done on it says it usually leads to places where you don’t want to be. Knowing it’s your son now. No longer research, but real life. Then the new fight starts. So we fight cf. we fight pseudomonas. Then along came mrsa. Oh the lovely methicilin resistant staph. You just had to come along into the mix right? Maybe feeling a bit left out. Cf lungs are just like fly paper. Just so coated with the stickiest, most dehydrated mucus you can possible imagine. Then breathe in. breathe in fresh air. Full of bacteria. His lungs are a perfect breeding ground for them to grow. To thrive. To progressively take over his lungs. They find a section of it, they thrive in less oxygenated areas…PERFECT, because CF lungs have less oxygen in them than normal. PFT’s prove that. Conner’s lungs are 33 % of normal lung functions last checked months ago. Pointless now. Thick, sticky mucus that is just nearly impossible to clear. Cf tricks you into thinking that with antibiotics you can get rid of the mrsa, or even the pseudomonas. And you may. A little. But once you get it, it never fully leaves. You culture something else. But guess what? It’s still there. Just in harder to reach places, or crowded over in some random corner of your lungs. But it’s still there. Don’t let it fool you too. So disappointing. How utterly helpless. Pound on his back. Shake him up with a vest treatment. Have him blow PEP to loosen the mucus. Go ahead try. Stay ahead of it all. Because it just keeps getting progressively harder to get rid of it and progressively harder to stay ahead of it.
But try. Give it your all. You only get one shot to make it right. Only one. And that starts from the moment of birth. Fight with all you got. Don’t take no for an answer. You just only get one shot to take control. One life. And it just keeps getting progressively harder to control. It gets harder to fight. To have the strength to fight. The motivation. It’s a very helpless feeling being his mother. Watching him. Praying for him. Listening to friends and acquaintances say to me how he looks good or that he looks healthy. No. it’s a lie. I’ve seen his insides. I’ve seen them. I know his lungs by heart. I know the blockages. I know why he gasps for air. I know why they have to so closely monitor his oxygen to make sure he’s still able to get out all the co2 he breaths in. normal lungs just do that. Simple. Not his. Not cf’ers once they get progressively worse. They don’t. They can’t. They stop. Helpless I tell you to not get upset at it all. To see people in the stores fighting with their children over something so small. So unimportant. So worthless. The jealousy and the anger I feel. If only they knew how lucky they were. Such a simple topic to fight over really. Not at all life or death. Imagine death. A child’s death. On your brain. Every second. Every day. Imagine that. I wish I couldn’t. I wish I could fight over something trivial. But trivial is just not important. My battles are so much larger. They are life or death battles. Kids want to fight? Ok great! At least their lungs are healthy enough to yell. Kids wanna run away from you in the store and you get all upset? Gosh…what I’d give to see Conner be able to run from me. To just be free from his chains for one moment. To run and be free. To breathe free. I fight only the important battles. The rest is just so meaningless. Absolutely a waste of time.
Life is all about lessons. Every single thing happens for a reason. There are no coincidences. Not one. It’s all laid out and orchestrated to be just perfect. Each and every trial you learn from it what you can and move on. I get that. I understand that completely. But death. A child’s death. What in the heavens is there to learn from that? Not one thing I can think of. It cannot possibly stand to teach me one thing except suffering. About the unfairness of it all. Not about my strength, or my sorrow, or how I loved. It’s not about that. A child is simply too young. Hasn’t seen enough yet. Hasn’t really been able to dream the largest dreams. Take it all in this world…simply can’t do that in such a short amount of time. Especially in a time that is only filled with suffering. There is just nothing there. No lesson in it at all. So why does this happen? And not just to us. To so many. SO MANY. Miscarriages, stillbirths, infant death, SIDS, immunization deaths, car accidents, drowning, disease. Why? The absolute selfishness of it all. Such a test of true character. It is a test that I’m just not sure how one would pass. How could you? When it makes no sense, and kills you right along with it. No lesson to be learned as you move progressively to the end. Always moving that way. There’s simply always a shoe left to drop. Always. It is a test that I know that one day way too soon for me, I will fail.
What a safe place to be. I find it as a very fuzzy, soft comforter to envelope me in, just swallow me in and take with it my worries, my fears. I love it so. Numbness. A very productive coping mechanism. It’s not the same as denial, but it is an escape just the same. I go thru fazes almost daily. Sometimes hourly. Sure the doc said it was bad…but two weeks later I’m home and not in that hospital and I forget. I get back to my numb little existence. Ok well wait a second doctor told me those same horrible things….it’s real I think. This time for sure I think they mean it. Numbness again. So easy to cope with it all. I don’t deny the truth any longer. But I choose to be numb to it. It’s what gets me out of bed each day. Helps me to put one foot in front of the other. Can you imagine? Can you? Please walk in my shoes somebody. Please tell me how I can make it thru this all in one piece? I simply don’t know how. I don’t know why I’d want to. If he no longer existed. Why should I? More than because I have more family, because naturally I’d never intentionally leave them. Physically. But emotionally. It’d be so unbearable. Fighting from the moment he was conceived. Years and years. I grew up with him. He taught me how to grow up. He showed me the real meaning of life. To find a passion, a dedication, a meaning, a purpose, honesty. Nothing would matter without him. Numbness would overcome me. But I don’t think it’d be progressive. It’d be immediate. It would mean that cf won. It would mean that I wasn’t strong enough. That I had absolutely nothing to offer cf except my firstborn child. My son. It would mean that once again, that I have failed. And it’s just not like I’m losing a game of checkers. I’d be part of that elusive, very exclusive new club that nobody wants the invite to join. The one that nobody sends back their RSVP for. Yeah me. The underground society of parents who have lost a child. Where do you go from there but down? Into numbness. I just don’t ever care to find out. So please, let’s just not.
Please don’t get me wrong. The fight is horrible. It is physically, mentally, emotionally, and spiritually draining. It is constant. There are no day offs. No lunch breaks. No quitting time. I punched in my timecard the day he was conceived and I will never get to punch it out until I’ve lost. And I am not complaining of the fight. I live for the fight. I love the fight. Because as long as I’m in the fight it means I get to keep my son. To lose the fight is to lose my son. So I love this fight. I’ll do anything to stay in this tedious fight.. As mind boggling as it may sound or seem I need this fight. Like nothing else. I’m so thankful for it. For my semi-fair chance against cf. One and only chance that is. And I’m living it; I’m taking it, as far as I can as much as I can for as long as I can.
My mind just travels, it twists and turns and takes me to places I don’t want to be. Places a parent shouldn’t be. Let’s dwell on making it to second grade. Summer break. Reading full books, losing and getting all teeth. Anything but where my mind wanders to. Funerals. Blackness. Emptiness. Despair. Suffering. Emotional death. My mind it seems is trying to get me thinking, accepting, or simply just grasping the full severity of it all. How we’ve been progressing and where we’re almost to on our path that we were for some reason meant to travel down. Somebody let me make a free right hand turn please. Stop this train. I didn’t ever want to be on it. Not me. Not my son. But I guess then whose? Why not me? If it’s gotta be somebody, better it be me. Save others from it. Just wish it was me and not my son. Just me. My mind just wanders. All the time. I’m in a constant state of daydreaming. Always it seems. Guess its part of the journey. And if it saves one other person from being on this journey, then god knows I can handle it. I will learn to. Nobody should feel this. I don’t know if it’s different than actually having the disease. I just can’t tell. It’s different for sure. He suffers. He aches. He struggles. But I ache, suffer and struggle, but all for him. And there’s nothing I can do for him. I will take this burden though. But I really know there is simply no lesson at all that you can ever learn from the death of your child. I won’t pretend there is. There just can’t be. It’s the ultimate insanity. But one day he will be free. Free to breathe. And I’ll count the days till I can be there with him. Making this earthly hell so worthwhile. So yes. Cf is a horrible, devastating and progressive disease. It is lethal. It doesn’t differentiate between taking an adult or child. But I love the fight. I’ll gladly fight till my dyeing breath for him. For all of them. For all those yet to be born with it. But I simply won’t accept that it’s for a reason. There’s never a reason that could justify a child’s unending suffering and ultimately having to die for peace. There’s just not.
just my random thoughts today...
just my random thoughts today...