And so it goes

We had a good, nay, a GREAT day, yesterday.

Today, not so much.

But that’s the roller coaster of this mess. Up and down, down and up. It’s difficult to access how each day affects his overall prognosis. Especially when you have a day that seems to set you back 2.

At 4am his hemoglobin, platelets, and blood pressure were stable. At 10am, they weren’t. In the short period of 6 hours, the world turned upside down. He needs blood, he needs platelets. After several interventions (i.e. albumin boluses) his blood pressures are still low. Initially they thought his blood pressure was low because they pushed too much trying to get his kidney’s to flush out all the excess fluid. Maybe now he is too ‘dry’.

Or not.

Maybe he’s just getting sicker.

Maybe today is the day he tips over the edge of the black hole and can’t be brought back, maybe in those 6 hours the universe shifts.


It’s the emotional roller coaster that take’s it toll. Well-meaning folks ask how I’m doing. They express disbelief at my mental fortitude. They offer up suggestions, that well, I’m uncertain about. Sedatives? Anti-depressants? Sleeping-pills? *gasp* A therapist? Alright, alright, settle down – I am not opposed to any of these things. But right now, in this moment, I don’t want drugs – I don’t want to not feel what’s going on here. Someday, the time will come when I won’t want to feel anything.

I’m pretty sure at that point, a good bottle of wine will do the trick.

As for the therapist, I was not really given the option to say no to that one.  She appeared at my door a few weeks ago, sent from the team as a resource and a way, I’m sure, to confirm that I wasn’t headed to the padded room reserved for 1. We talked. She asked questions, I answered truthfully. She acknowledged that I didn’t need her. I was coping well with it all, the highs, the lows, the very lows. It is my strength, she says. The ability to be focused and in the moment and not fall to pieces. Yippy Skippy. Maybe if I didn’t have to use the skill so damn much – I wouldn’t be so damn good at it.

So here I sit, the air knocked out of me, watching David sleep. Every now and then we rouses and opens his eyes. Today more than any other in recent memory, he has spent a great deal of time with his eyes open. But his eyes are unfocused. They no longer move together as eyes should. Nor, do they track, either to my voice or to an object in front of him. In fact, the doctor stood and flicked her fingers directly at him, almost touching his eyes.

He. Never. Once. Blinked.

Now comes the realization that he may not be able to see. It may be swelling, it may be weakness, it may be permanent.

Life and death, darkness and light.


As of right now, his blood-work is stable. He appears to be comfortable. I’ll know what tomorrow brings when it comes. As for now, I’ll recite my mantra:

Every. Damn. Day. Just. Do. IT.

Categories: Life | Tags: , , , , , , , | 14 Comments

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14 thoughts on “And so it goes

  1. i am so sad to see the downturn but yes its a rollercoaster. and you have front row seats while we are all in the back. I pray for you and David and have tears in my eye picturing what happened today.



  2. Thoughts, positive energy, hugs, strength, all being sent your way. I’m with you, hun. You are not alone.


  3. I’ve been following your blog daily and pray for you and captain snuggles and the rest of your family. I’m not even sure when I began following, or exactly how I heard about you, but I think it was from the Ronald McDonald House, but then again, maybe from someone else who we know in common.

    Take care and I know you know that so many are praying for you guys and, in some way, are there with you – sort of an invisible, but all encompassing presence in your room. I wish I could send you that bottle of wine. Heck, maybe I just will and pop the cork and put your feet up and hang out with that cute little boy of yours. Wonder if there’s a hospital rule against that? If so, who cares – the nurses sure would not worry about it given the circumstances.

    Blessings to you and David and the rest of your family and know that prayers are coming your way from New Mexico.


  4. Lennon's daddy

    I understand that their is nothing me or anyone else can say to really make things better, but you and your family are in our prayers and we wish you the best and the strength to carry on with whatever comes your way

  5. Take care as only you can!! So glad I found you on Feed Me Friday your family are in my prayers I can hardly stop reading. I can’t even begin to understand or comprehend what you go through day to day. Maybe Feed My Friday should be changed to adapt your situation to Feed My Prayers….Much love from Kentucky…~Shari

  6. sharon

    Maybe not a good day but it was another day…. You are right to take these days as they come and hold tight to the presence of that precious little boy. I’m still hoping it comes good.


  7. I’m here, reading along with you (still praying).

  8. stopping by to say hello! I said a prayer.

  9. In my thoughts and prayers, Amy. And still wishing this mother and grandmother could just hug you tight. You are a fighter, and it sounds like Capt. Snuggles is, too.

  10. Big hugs, stay strong. Jen xx

  11. My thoughts and prayers are with you 🙂

  12. Amy. wow. I came over here after your comment on my Feelgood Friday post. You sound like an amazing woman, and I am feeling truly humbled in my grumpiness! Sometimes life needs some perspective and your blog has provided some. I’m not a mother but the story of you and your sons… well. All I can say is I’m sending love to you all, and especially David at this time xxx

  13. I’ve been reading you and just wanted you to know I am another person “listening”….. Have you ever read The Secret or The Power? It might help in some way…. it gets me through the rough patches… Take Care! (PS -You seem VERY sane and blogging is the right kind of therapy for you!)

  14. Oh crap.
    I don’t even know what to say except that at least you are strong. So many aren’t. And I wish you didn’t have to be strong.

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