April 10, 2012

What more will there be?

There is nothing fun about chronic illness.

Dialysis source

You adapt and manage, make the best of the situation, live life the best you can under the circumstances.

source
Have always loved this quote.

Illness causes more stress, worry and upheaval than nearly anything else. It's kind of true what they say, that if you don't have your health...

Nothing else matters as much as how the person is doing on any given day. Because if anything is off, everything can go off.

As someone who loves a chronically ill man, I am scared and worried. All. The. Time. I accept that the problems are there. Accepted that a long time ago. But I need the status quo. The everyday norm that is just dealing with Diabetes and dialysis. When more comes into play, I want to bury my head in the sand or crawl under a rock or run around screaming like Chicken Little, "The sky is falling, the sky is falling!"

Do I kinda look like him?

But I don't. I did go through a phase after Mark's bypass when I felt like many things were piling up and feeling really heavy. I wasn't able to separate things that came along after the experience of the bypass and what transpired after, and I would easily lose my cool over every new deviance from my norm. It snowed right before Thanksgiving so the kids had the entire week off rather than just the 4 days, and I wanted to scream. Not because they were home, but because they weren't supposed to be home. I hurt my back three and a half months after Mark's bypass, but I felt like it was just one more thing to add to the pile. And I was pissed! But enough time eventually passed that I no longer lumped it all together.

I may be doing it again, however, since Mark's arrhythmia and ICU stay last month. I feel myself keeping a running tally of the crap.

In my head: So first it was the arrhythmia and 13 day hospital stay, complete with near death experience. Then Camryn brought us a cold which gave Mark bronchitis, and then his blood sugars got difficult. Then I have to go have a physical of my own and think about stupid birth control...

Even though one thing did happen on the heels of another, they aren't related. They're separate issues.

I tell myself this, but what I really want to do is stomp my feet and curse. But that's not socially acceptable. That's what I always tell my children, isn't it? But I'm just so floored by the fact that Mark now has another issue with his heart on top of coronary artery disease! Why is this necessary?

Oh right, because he's Diabetic and on dialysis.

I really don't know if I'm coming or going, don't know which end is up, down or sideways. I've been jerked around quite a bit lately. I'm dazed and confused, and it wasn't even any fun getting that way!

And I ask myself: how much more is there still to go through? How many more crisis, hospital stays, scary phone calls in the middle of the night....fears and tears. How much does Mark have left in him? How much do I?

I wish I could know. Mark does too. He told me he thinks it would be easier to know exactly when he will die so he could say and do all the things he feels he needs to, knowing how much time he has to do it in. This is not something people normally think about.

And what about my children, my babies? Camryn is 11 1/2 and suddenly afraid of the dark again, needing to leave the bathroom or stairwell light on when going to bed. AJ is 6. Lately whenever Mark isn't home he asks, with this little worried tone, where he is. I just know he's thinking about Daddy having to go back to the hospital. These are subtle things that maybe only we as their parents would notice. But just the fact that there's something to notice...

One thing I know for sure is I'm actually pretty strong, and I'm not alone. Yet I wonder just how far that strength can carry me. Will I weather the storm with grace, or will I crack under the pressure?

source

49 comments:

  1. "Will I weather the storm with grace, or will I crack under the pressure?"

    A bit of both, I'm pretty sure, along with the rest of us trying to help, but feeling helpless. I like it even less than you, but I will walk with you through it. I won't be the perfect partner either, but I promise I will stand by you.

    Love,
    Dad

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  2. This sounds like a really really hard place to be. I hope blogging your way through it offers some relief. Sending positive thoughts your way...

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  3. Your dad is pretty awesome! Your strength is admirable, as is your ability to admit that you're scared sometimes.

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  4. I think you are strong and you'll handle the pressure and any shit that's thrown at you. You've shown that so far!

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  5. I feel so badly for your kiddos...I can't even imagine mine having to deal with this....
    and of course I don't know how you're doing it...but I guess you just do, what other choice is there?

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    1. Yeah, this is my journey. And I guess it's my kids' journey too. All we can do is the best we can.

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  6. Just say all the things you need to to each other now. Like all of us should, every day.
    The Buddhist monks have a saying, "Every time you say good bye - think of it as your last, so you will always have closure because none of us knows what will happen in our lives, ever."
    The truth is that my husband - who is healthy (but ok, fat! don't tell him I said this! ha!) - could be hit by a bus tomorrow. Or I could. The truth is I need to let him know how much I appreciate and love him today. That's all any of us really has.
    You two are so brave.

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    1. I love what you said! Perfect!

      Love,
      Randy (Dad)

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  7. I can't even imagine how hard this must be - how it must add weight and meaning (for good or bad) to every moment. Hopefully writing this out (and knowing others are listening and empathizing) helps a bit to ease your burden. Sending you a virtual hug from a virtual stranger. : )

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  8. Your Dad's comments made me cry! It's so damn hard being so far away from my little girl. But I am so very thankful your Dad is there to hold you. Virtual hugs from your Mommy!

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  9. Ok, I was going to comment and then I read your dad's comment so pardon me while I go cry for a second.

    ...

    Okay, I'm back. Ugh, Jen. I HATE that you have to go through all this. I know we're not supposed to question why, but I can't help but shout, "HOW! How much crap does one person have to deal with?!" I, of course, don't know the answer, but I will tell you this: you - your strength, your courage, your love, your humor, your words - are an inspiration. To me, to lots of women, to people, who sometimes think they cannot face one more day. Love you, friend.

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  10. I agree with Ado, any day could be your last. About a month ago I was hit by a motor bike while holding my 5 year old's hand as we crossed the street. I thank God she was to my right, and not to my left, or she would have been seriously physically traumatized. I got up off the floor with minor injuries. I opted out of going to the ER because I didn't want to scare my children anymore than they had been frightened that evening. I figured, hey, if I need to be a statistic, thank goodness I am ok. But, it made me realize that I could lose my children, or my loved ones at any second of the day. I feel for you Jen. Don't know how you do it. There is a cheesy saying, "I cried because I had no shoes until I saw the man who had no feet" which always makes me feel guilty when I whine. So enjoy as much of today with your babies and your hubby. There is always someone without feet somewhere. Two weeks ago my friend burried her 18 year old daughter after she struggeled with an extremely rare cancer for well over a year. Hugs and best wishes to you Jen. Sending positive thoughts your way :)

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    1. I regularly tell myself things could always be worse.

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  11. I'm so sorry you are having to carry this burden. But you are a very strong woman. You can carry anything that's thrown at you. You may find that you are more powerful than you realize.

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    1. Ooph, I'm already surprised by what strength I've managed to muster!

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  12. And in the midst of it all, you inspire, share, and keep putting one foot in front of the other. Great piece, Erin

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  13. I had to pause a few times while reading this but the tears came anyway. My heart truly goes out to you and your family. Please remember to be patient, loving and kind to yourself during this time. Give yourself the space and time to break down when the load just gets too heavy and the grace to forgive yourself for anything and everything. I'm sure in the midst of dealing with constant uncertainty, I would cling to the normal and routine as well. Anything throwing things off would feel like carrying heavy bricks on your back. I really think you are amazing and have been incredible with your family, just be sure to be incredible to yourself as well. So many people have you in their hearts.

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  14. Randy Fan Club forming.

    You have a great dad.

    Just want you to know that I'm thinking of you & sending you strength. You have definitely had more than your share of hard times. Enough is enough! I hope that you can find some moments of peace.

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    1. Oh no, don't encourage my dad's ego!

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    2. She meant, "Oh no, don't discourage my dad's ego!" There, fixed it for you, dear. Just a typo, I'm sure.

      Actually, they (crap, them again, their everywhere aren't they) say that you have to love yourself before others can. I like me a lot.

      Randy

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  15. I do know somehow how you feel....everytime my husband walks out the door to work, he may not come home. And his end will more than likely be in a violent situation. sudden and probably cruel. And it doesn't make me feel like a wonderful person to be so, so thankful I am not the cop widow - like the one made last year when her cop spouse had his throat slit on the job. These are the things I must face everytime I say good-bye. And utter "God go With him: under my breath as he leaves.
    How do I do it every day? I don't know. I guess I just trust that no matter what does happen, God will be with him. And with those of us left behind. That none of us will ever be truly alone.
    So much more than just dancing in the rain.....I just gotta keep looking for that rainbow called hope. And I have a feeling you totally understand that too. *hugs*

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    1. Ohmigosh, I think you do have a clue about worry!

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  16. Ugh, my heart goes out to you and your husband - what a tough situation.

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  17. This was a great piece and really captured something that many people don't understand until it happens to them: the difficulty in understanding how the events in our lives interact (or don't interact). Your strength is inspiring.

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    1. And what is small stuff and what isn't...

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  18. Like Ado said, say it every day. Even without someone being sick you just never know what can happen or when tragedy might strike. I feel deeply for you and your situation - I can't imagine what you must go through each day, as well as what your kids are feeling. And don't be afraid to break once in awhile - it seems you have a great support group.

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    1. I am unable to let my kids walk out the door without saying I love you. They could just be going down to the playground!

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  19. your remark about your 11 year old being afraid of the dark again went through me like a spear. i'm so glad to hear that you've got people around lending you their strength so that you can be strong for everyone else. you'll weather each storm and then when it's calm, you'll go into a room and stamp and scream and yell and weep. Then emerge, calm again...

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    1. Yes, I suppose that's what I will do. :-)

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  20. Sending you many hugs. I can't begin to know what you're going through - but that is a lot of worry and managing and doing and all that to handle on a day to day. I hope you have easier days soon and that you all have the best health possible.

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  21. Ohh girl. Sending you many hugs your way. I feel so badly for you and your family. I have to tell you that I admire you in so many ways. The strenght you show is amazing. Your family is lucky to have a special person like you.

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  22. OH MY.... This is when I wish we could reach in and hug the authors of such beautiful pieces. I do not even know what to say. I have no life experience to share or helpful advice. I do feel your strength oooozzzing out of this piece. I also know that I can relate to feeling the same when when life gets overwhelming. Hang in there momma and use those around you for what ever you might need!! -LA

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    1. Thank you for calling it a beautiful piece. That means a lot to me.

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  23. I'm sorry that so much is thrown at you. It does seem that things pile up all at once, doesn't it? Thinking of you often!

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  24. You're amazingly strong. Truly. Sending you loads of hugs.

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  25. I can't imagine how scary it is, or how much you must long for "normal." Even on the off days, you are a remarkably strong woman. My thoughts and prayers are with you guys.

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    1. At this point, after all these years, I don't even think I know what true normal is. Just OUR normal, I guess.

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  26. This is gut-wrenching. I'm sending nothing but love and warm thoughts to you and your family. You're a strong woman!

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  27. Somehow I think your crack under pressure would be very different from another's. This post exhibits your strength. I admire it, and therefore, you and wonder how I would handle similar circumstances. Beautiful post. I wish our thoughts had the capacity to heal. Wishing you the best. I think you can handle anything that you need to.

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    1. Yeah, I don't think I would ever be the screaming, crying and flailing about type. But I could be the stay in my bed quietly sobbing type. Neither one sounds appealing.

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