Posts Tagged With: motherhood

Some days

Some days are So. Damn. Hard.

There I said it. My husband’s right – I can sit for hours at the kitchen table, laptop on or not, just staring at the screen or out the window. You’d think I was daydreaming.

If daydreams included images of chest compressions and blood and babies in caskets, then you’d be right.

If daydreams included physical pain in the pit of your stomach, an unending longing and devastating emptiness, then you’d be right.

I know I’m on auto-pilot, but that’s part of being ‘strong’ and taking it day to day, isn’t it? To be able to function, albeit minimally. I mean, the minions haven’t missed a meal, they’ve made it to school dressed in clean clothes, I took at least 1 shower this week, hell, that’s sounds like a typical week for a stay home mom.

It’s just the time in between. I do things in short bursts. Washing the dishes will take 20 minutes. Staring out the window may take 90. Sweeping the kitchen floor may take 5, while the anxiety builds for the 3 hours Zachary is away at Preschool. Standing in the pick-up line with a dozen other parents and younger siblings is the stuff panic attacks are made of.

I realized that it’s been 2 weeks. 14 days since the universe created a rift in my heart. I keep thinking that each day will get a little bit easier, but they don’t seem to. Some days just seem harder.

I ventured onto Twitter Saturday night and came across a conversation that just crushed me. Another blogger had posted about her daughter being 3 years cancer free. A privileged member of the Survivor Club. One of her readers congratulated her for ‘praying her daughter back to health’. Really? That’s all if took? A few words whispered on the wind and Voila! your child gets to live?

Said blogger actually deleted the comment and went on to tell this reader that it wasn’t all about prayer and what of the all the lost children? Didn’t their parents not pray enough for God to chose to save them? Reader responded by saying she should be ‘proud’ that God listened to her and healed her child.

Proud? Not that the doctors had anything to do with it, not that years of treatment had anything to do with it – but just the mere fact that she prayed well enough so God affected a shift in her favor.

Dear reader – should I blame you that David died? Because clearly you did not pray well enough for us, at least according to this commenter. The thousands of you that offered up prayers and told friends of friends and called prayer chains and had entire churches praying for us – clearly none of us have it In with the Man Upstairs.

I’m sorry, but just the thought that some how I was just not good enough to convince God to let David live, terminates any desire to want to believe in said Omnipotent Being. And it brings me to my knees, paralyzed with doubt.

Thoughts like that start to creep into your mind anyway. I’m a rational person, but grief does funny things to your thinking process. I believe we did everything, EVERYTHING  that could be done, but what if, what if I hadn’t gone to take a shower that Saturday morning? Should I have stayed to help turn him and change his diaper? If I had stayed, maybe I could have prevented the aspiration. If he hadn’t aspirated the blood, would he still be here?

So many doubts cloud your mind. It becomes difficult to embrace that some how you weren’t responsible for the outcome, that one of your decisions wasn’t the fatal decision. I know, I know, I KNOW that’s not the case, but those awful little whispers of doubt wiggle their way into your conscious and before you know it they firmly take root.

Your rational mind is overtaken by the irrational and pretty soon all I see is failure. Failure in my responsibility as a mother to protect her child. Failure in my ability as a mother. Period.

So while this comment wasn’t even directed at me, it didn’t have to be. Some hack doesn’t have to tell me that God punishes those that aren’t faithful enough. That maybe I didn’t do enough for David.

My irrational mind is doing a bang-up job at telling me that I failed.

And that, my friends, can be worse than any hack.

Categories: Life | Tags: , , , , , , , , | 23 Comments

Of mice and rabbits

I dreamed of mice and rabbits, ducks and foxes. I watched as 2 rats rolled David up in a bit of dough, ready to make a kitten-dumpling.  I suppose that’s what happens when you doze off while reading Peter Rabbit and Friends.  Before dozing off, David’s blood pressures had just started rising and his heart-rate had just started falling. Not a good combination, especially in light of all the bleeding.

I woke from my Beatrix Potter dream to the need of an emergency CT-scan of David’s head. Brachycardia coupled with elevated blood pressures can indicate problems with the brain, so at 7:30am we were traveling down to CT. Fortunately, it didn’t show any bleeding or masses. The fluid that was noted back in November is relatively unchanged. There was noted atrophy of his brain, which is indicative of his extended illness and lengthy drug consumption.

So far they have not intervened with his blood pressures or his heart-rate. We’ll wait him out and see what the day brings. While there’s still some bleeding, it’s no where near as copious as it was yesterday.  As the day goes by quietly, the decrease in blood is a positive. A good indication that the octreotide did it’s job. If he could go 24 hours with no blood whatsoever, they could stop the octreotide and see what happens.


Yesterday was a touch and go kind of catastrophe with just one thing after another happening all day. A high adrenaline day that leaves you feeling drained. I knew he was teetering on the edge all damn day and it’s just the worse feeling in the world to stand by and do nothing. When our GI doctor comes in at the end of the day and says “All I can do is offer a hug.” All you want to do is cry.

But today was a new day, one that we’ve gotten through with very little fanfare. After his joy ride around the hospital this morning, things have settled and we’re enjoying the quiet. He’s stable and that’s all I can really hope for at this point.

So on to another night with Beatrix Potter. Mice and rabbits, ducks and foxes. Jemima Puddle-Duck is waiting for us.

Categories: Life | Tags: , , , , , , | 13 Comments

And so it begins.

First, let me just say, I am in awe. In awe of the outpouring of love and support from the blogosphere.  Consider yourselves hugged. All of you. Even you folks that just lurk and don’t comment, yes I know you’re out there. I have amazing friends, Mindy and Kirsten, and to everyone who took to FB and Twitter, thank you, thank you, thank you.

I’d like to think the crackle of energy in here over night, was just my imagination – but when the nurse commented to me how ‘different’ our room felt from the others.  I knew. I knew each and every one of you was sending us all the bright and shiny, positive energy you could muster.

Thank you Sir and May I have another?

Because Captain Snuggles is not out of the woods by any means. In fact he’s very, very far from it.  They uttered that dirty word ‘septic’ this morning in rounds and all I can ever think of  when I hear that word, is dirty, toxic sludge swirling around,  poisoning him.

ugh. It gives me the willies just thinking about it. *shivers*

His condition is tenuous. While he was relatively stable this morning, maybe a bit worse with some blood work and vitals, maybe a bit better with how his skin looks. This afternoon he’s worse. His blood pressures are running low, he’s been dropping his oxygen a bit, his kidney’s are not happy and overall he’s acting sicker today than yesterday. He’s been given blood and platelets and they’re discussing plasma. He’s getting cidofovir and IVIG and possibly adding another antibiotic, if his vitals don’t improve.

His lungs, in particular are acting up. His blood gases are pretty crappy right now. They’ve given him sodium bicarb because he’s acidotic, if that doesn’t help, they will go up on his ventilator settings.


These are the things the doctors warned me about.The beginning of all things bad.

His adeno counts just came back at 4 million, down from 5 million yesterday and 15 million the day before.

*sigh of relief*

A little bit of bright and shiny to brighten our way through of the forest.

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5.3 million. And I don’t mean the Mega-Millions

Can you imagine 5.3 million, well, anything? I can’t. It’s a number that doesn’t compute for me. So when the doctors come in and tell me that David’s count for his adenovirus is just that, 5.3 million. It’s like a kick in the gut. How can there be 5.3 million of anything in my almost 8 month old son? It’s a staggering number.

And I’ll be honest – it scares the crap out of me.

Consider this: his adenovirus counts were in the 1,500 – 2,000 range when his GVHD announced itself back in late-September. That made him sick for a solid 6 weeks. Then he got better and the adenovirus counts came down. They were consistently less than 625 for several weeks. During most of December, the adeno counts were relatively low. But the T-cells from hell wouldn’t go away and the campath was administered. Since then, the adenovirus has crept up slowly.

Until this past weekend, when we started seeing the counts go up by leaps and bounds. 5,000 turned to 300,000, turned to 1.5 million, turned to 5.3 million. All within 4 days – that’s been his running counts since Sunday.

This number is just beyond my comprehension. It explains the worsening of his lungs, it explains the fevers and the elevated heart-rates. It explains the drops in hemoglobin and platelets. It explains why after fighting the GVHD for the past 5 weeks and getting better – really and truly getting better, he’s back on the edge of a mighty big black hole.

A black hole, I’m scared he’s not strong enough to find his way out of.

He’s so weak. And in turn, it makes me feel weak. Imagine if your newborn baby weighed 20 lbs, had seven teeth and wore size 4 diapers. That describes David. An almost eight month old newborn babe. All arms and legs and wobbly head. A newborn babe that can’t be held or comforted, snuggled or consoled.

It’s been almost 8 weeks since he was up and out of bed, almost 8 weeks since the last time me or anyone else was able to hold him.

I can’t even begin to imagine what the lack of touch has done to him. It’s not that I don’t touch him – I do. I try, anyway. But for all those weeks that he didn’t have any skin – I couldn’t hold him or touch him in a comforting way. It gives you a whole new perceptive on the term sensory deprivation. He hasn’t looked at me in weeks. I talk to him and sometimes his eyes will flutter open, but he is unfocused and no longer tracks my voice.


So much, every day. Day after day. I know, I know….

Every Damn Day, Just Do IT!

It’s an excellent mantra and one I am still focused on. But.

Some days it’s just hard, so overwhelmingly hard. Damn IT!

Treatment for adenovirus is the exact opposite of treatment for the GVHD. So as soon as they lower his immunosuppression to allow his body to fight the virus – the GVHD is at risk of flaring up again. And while I say risk, you know I really mean it’s more than likely going to happen.

Because the kicker is (well, ONE of the kickers) – shortly after snapping his beauty shot yesterday, a subtle, red bumpy rash started up over his head and face. Today it’s traveled down his chest and across his belly. I started to type that the rash was faint, but after further inspection – it’s not so faint. He’s definitely developed a new rash.

AND, this is the REAL kicker – that 5.3 million I’m struggling to comprehend?

It just came back over 15 million.

*crashing……..darkness…….spinning out of control……*

Around and around and around we go. Will it stop? I don’t know.

All I can say is…..

Every Damn Day, Capt Snuggles Just Does IT.

And if he can do it, so can I.

Categories: Life | Tags: , , , , , , , , , , | 15 Comments

2011. So far, not so good.

Some days I sit in this hospital room and just space out. I can sit here for three, four, five hours or more and not even realize that much time has passed. You would think with all this time on my hands, I would be well versed in the going’s on of the world, I would have a back log of articles to post, all my photo’s would be organized and I would be caught up on all my correspondence from friends and family.

Yeah, right.

I have cards in my bag that I keep meaning to write and mail out. I have a book I carry around, just in case I have time to read. Really? I have plenty of time to read. But why I haven’t even begun to read it, is beyond me. I still haven’t used my iTunes gift card I received for Christmas – I know what I want – I just haven’t gotten around to downloading it.

I have Netflix at my fingertips and I haven’t watched anything in months. I have email and Facebook and Twitter and friends who I should be chatting with, yet I don’t or at least not as often as I want to. And I do want to, I just can’t seem to find the time to do it. Any of it. Hours of free time on my hands and I catch myself staring off into space, having lost all track of time.

Like right here – I stopped typing an hour ago. I’ve been lost in thought and couldn’t even begin to tell you what I was thinking about. I’ve been sitting here since 7am. It is now 3pm. That’s a full 8 hour work shift! Sure we had rounds and I’ve helped change  a diaper or 2, but unlike yesterday, it’s been a quiet day.

Yeah, yesterday was not a quiet day. Capt Snuggle’s got to travel around the hospital a bit yesterday. He received a full body CT scan (again), his weekly echo cardiogram, an EKG, they placed a new PICC in his arm and removed the infected one from his leg and we ended the day with yet another bronch.

CT scan shows worsening of issues within his lungs, new issues with his pancreas, inflamed lymph nodes in his liver, his intestines look the same, no better, no worse, and now his kidney’s are enlarged. The bronch confirms that there are issues with his lungs. Although visually, his lungs, while still inflamed, look better than before. They were quite bloody a few weeks ago.

Okay, maybe I have a few reasons to space out and lose track of time, but it’s still frustrating! And you know what I’m going to say next. Wait for it…..

On top of everything else, there’s more, there’s always something else going on.

His adenovirus is back.

With a vengeance.

The amount of adenovirus in his system now, is higher than it’s been the entire time we’ve been here. It’s frustrating and devastating – the adeno caused the GVHD to flair in the first place, if they can’t get it back under control, the GVHD could flair up again. And honestly, I don’t know if he can withstand another flair up.

He’s been acting sick for a few days now and this is probably why. He has adeno, he has VRE (that’s why they replaced the PICC) and he has the fat-lovin fungus. He’s been dumped with 9 kinds of immunosuppression’s  and I’m afraid that if he gets hit with anything else, he’s going to spiral downwards, fast.

Sometimes I think I might be too greedy. I mean, his skin looks amazing and for that I am immensely thankful. I know his skin healing is a BIG deal, especially when you think about the fact they didn’t even expect him to survive. But in my task oriented mind – it’s done. He’s accomplished it, now on to the next big thing. I want the next issue to be resolved and I want it now. Then on to the next and the next and.. okay well, maybe I am being too greedy.

His “To Do”  list is quite a bit longer than most. And I suppose I should lead by example and get my own “To Do” in order and stop day dreaming all day.

BTW, it’s now after 6pm. Yeah, I think I need to re-evaluate my time management skills. Too much time, not enough management.

Categories: Life | Tags: , , , , , , , , , , , , | 9 Comments

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