Posts Tagged With: humor

Adventures in Sailor-speak

It’s quiet here. I’m alone at the RMH. I can actually hear my own thoughts clanking around my head once again. The boys have gone back home after spending almost 2 weeks here with me and my sister (in-law). I kinda, sorta miss the little rug-rats. Their loud, boisterous ramblings about trains and pizza, poop and video games and cuss words. It never ceases to amaze me the odd combination’s of thoughts that flutter through their minds and spill out of their  mouths.

On Christmas Day, Jonathan quizzed everyone about what types of pizza we liked best. He was a bit disappointed when there was only ham and mashed potatoes for dinner! Saturday night, at the RMH, after a huge meal presented by a group of local boy scouts, the RMH ordered 2 extra large pizzas for the roust-a-bouts wandering around. Let me tell you, Jonathan was in 7th heaven. Regardless of the fact that he ate supper , he proceeded to eat 2 big pieces of pizza and probably would have eaten more had I let him. That boy love, love,  loves pizza!

Chuck E Cheese and Pizza for Jonathan's 6th Birthday.

Jonathan and Zachary have both turned into quite the little potty-mouthed sailors while I’ve been incarcerated here. All it takes is one word – they’re current favorite is dumbass. All it takes is for Jonathan is whisper it in Zachary’s ear and they’re off; Jonathan giggling like a girl and Zachary whining. Of course, at the most inopportune time, Zachary will announce to all those within ear-shot that Jonathan has called him a dumbass.

Mooommmm. JonJon called me a dum-ass.

Mooommmm, Zachary called me a butt-hole.

Jacob suggested we institute a swear-jar. We would all have to put money in the jar each time we swore and the amount would depend on the severity of the swear. We all agreed Dad would be broke by the end of the first week. I told Jacob that Dad probably wouldn’t be able to feed them anymore if we made the swear jar an ongoing thing.

Other favorite swears include; sum of a bitch, dammit, poopyhead, poopybutt, butthead, but-tocks (with emphasis on the ‘tocks’) and ass. Or any other creative combination of words for body parts and bodily functions. Okay, so technically the body /bodily combination’s are not ‘swears’, just embarrassingly impolite ramblings. But then there’s Jacob.

Jacob, Jacob, Jacob *shakes my down-turned head back & forth*

Jacob likes to see how many times in one day he can get away with the  word “frickin”. I know, I know, it’s not technically a full-fledged swear – but Jacob knows it’s a substitute for the F-bomb and he is devious in it’s use.

Mooommm, JonJon called Zachary a frickin dumbass. Can you make them stop frickin swearing all the time? Zachary just called JonJon a frickin butt-hole. Mooooommmmm…

Yes, that was an actual conversation.

*sigh*

And then there are the conversations with Zachary while we work on the whole potty-training fiasco.

Zachary: “You (as he points at me with his pudgy, little pointer finger) You don’t pee in my pants.”

Me: “You’re right I don’t pee in your pants and neither should you.”

Zachary: “I promise, nooo more poopin in my pants. I go fart in the toily.”

Me: “Well, it’s okay to fart in your pants, but no more pooping in your pants.”

Really? Did those words just come out of my mouth? Yes. yes they did.

Zachary: “Okay, I can fart in my pants, but no more poopin in my pants.”

Me: “That’s right, let’s put your Thomas underwear on.”

Zachary: “Okay, I won’t pee my pants, Thomas will cry if I pee on him.”

Me: “That’s right, Thomas will be upset if you pee or poop on him.”

Zachary: “Okay, Mommy, I won’t do it noooo more, I promise.”

And then he proceeds to list all the relatives that don’t poop or pee in their pants. Daddy doesn’t….,Mommy doesn’t….., Grandma doesn’t…….., Nothing like a run-down of everyone’s bathroom habits from the 3 year old.

Zachary is actually doing just fine with the potty-training. Which is good, because he starts preschool this week, the church preschool, 2 afternoons a week.

Any bets on how long he lasts before calling one of the other kids a dumbass?

Categories: Life | Tags: , , , , , , , , , , | 2 Comments

Cytokine Madness

Okay class, listen up. Today has been a crap day. That’s right, I said crap day.

Honestly, it’s been worse than crap, but this is a family show, so I’ll leave it at CRAP.

I try very hard not to be all gloom and doom when it comes to Capt Snuggles and his various ailments. Various, mind you, as if one just wasn’t enough. But some days the doom and gloom take over and it’s all I can do not to scream.

So if you’re arriving late to the show, I’ll give you a brief run-down. The Captain had a liver transplant back in mid-August. Directly after the transplant he caught a virus called Adeno and then he developed Graph vs Host Disease. We’ve been in the PICU for 3+ months fighting both of these bad boys.

Last week he was out of bed, laughing at his Occupational Therapist.

Today, not so much. Today he was feeling yucky. Today his rash spread. Right before our eyes, like wildfire. The GVHD went from being only on his hands and feet to, well, everywhere.  Scalp, forehead, mouth (yes,even inside his mouth), belly, back, arms, legs, even the poor lad’s bum. EVERYWHERE.

So a decision was made.

A decision they tried to postpone. A decision that is irrevocable.

A decision that has me up and awake in his room at  2am because it’s already put his little body through hell.

It’s name is Campath. And it wreaks havoc on the immune system.

Campath specifically targets lymphocytes, which are a type of white blood cell. It does not differentiate between the good (his) lymphocytes and the bad (his donor’s).  It is an equal opportunity killer.

Up until now they have been giving him meds that kill specific types of lymphocytes. T-cells, B-cells, activated T-cells, cells that control the activation of T-cells, B-cells that dance with the T-cells under the pale moonlight and on and on and on.  Yes, the lymphocytes can be divided into more cell types than you can shake a stick at. Suffice to say these previous meds have not been successful in containing the GVHD.

So bring on the big guns.  Think Hiroshima. It’s not a pretty picture.

The Campath was administered  @ 6pm. By 6:30pm he had spiked a fever to 103.5, his heart rate was 212 and he was doing that grunty-breathing thing that earns him the high-flow nasal cannula.

He was experiencing  hypercytokinemia. Or a cytokine storm. That’s a fun term. Cytokines are crazy. Imagine a mosh pit filled with teenage boys. Bumping, thumping, slapping into each other. It’s not funny until someone gets hurt kind of thing. Now imagine the cells in your body doing all that frenzied moshing. That’s a cytokine storm.

And that’s not good.

So we do what we do best. We wait.

Wait.

Wait.

Wait.

It’ll take a couple of days to see the effects of the Campath. He may need more doses. When I watch him in his hospital crib, the term that comes to mind is languishing. Some days are better than others, some are worse. Most are stagnant.

Today would be classified as worse. The GVHD has progressed to the point of beefy blisters on his hands and feet. That just earned him an additional drug. No waiting to see if the Campath will do it’s stuff.

Add. Another. Drug. Now.

I was asked the question whether I regret opting for the liver transplant. Rather, ‘pushing’ was the term used. Did I regret pushing for a liver transplant? Obviously this person had no idea of the devastating effects of Citrullinemia. The dance of brain damage that is the life of a child dealing with that awful disorder.

I answered simply. “No.”  I think the person was rather appalled at my answer, seeing only what the lad is experiencing right now. This person did not understand that the same Adeno virus that triggered the GVHD after the transplant would have caused irreparable brain damage before, in the guise of elevated ammonia levels.

I know he’s in pain, he may have scars. I know he feels yucky, but it will pass. I know he’s weak, but he’ll get stronger.

Is that Faith? I am not a subscriber to the notion of a greater power governing my life. So maybe it’s my own brand of Faith. Faith in the power of one’s own body to heal. Faith in modern medicine. Faith that I made the right decision for my son, that I did the best I could to afford him a life.

Even if he looks like Thing from the Fantastic Four.

 

It's clobberin' time...

 

 

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All Things Snuggly

13 weeks.

I know, I know. I’m like a broken record. 8 weeks gone, 9 weeks gone, 10 weeks gone, blah, blah, blah. Our goal of being home by Halloween, gone. Home by Veteran’s Day, gone. Thanksgiving, not an option. Christmas? It’ll be close and that’s only if all goes very well. Like, he starts behaving perfectly, yesterday.

(Which did not happen, btw…)

So, I sit here and try to focus on the positive.  Thanksgiving is coming.  A time for reflection, of spending time with family and  giving thanks  for the world around us.  And yes, there can be positive in all this.

Here’s some things I am thankful for:

I am thankful for 13 weeks without having to wash dishes.

I am thankful for the approx 500 diapers of Rainman’s that I did not have to change.

I am thankful for the 180+ loads of laundry that Hub & Grandma got to wash instead of me.

I am thankful for the toys, games and books that I did not have to yell at the boys to clean up.

I am thankful that I do not have to cook on Thanksgiving.

I am thankful for all the dirt and mud that was tracked through the house that Hub & Grandma got to mop up.

I am thankful that my house is still standing (it is, isn’t it?) and the animals are still alive. ( They are, aren’t they?)

I am thankful that I did not have to watch Barney, Teletubbies or Thomas the Train for the 1,987,476th time.

But mostly, after 13 weeks, I am most thankful for this pudgy smile.

 

Aren't those teeth cute?

Amen.

 

 

 

 

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Categories: Life | Tags: , , , , , , , , , | 18 Comments

Do Not Stare Into the Beam or The Obvious way to be Helpful

 

Isn't this overstating the obvious? Or not, maybe that's exactly what we need.

Today is Capt Snuggles 1/2 birthday. Go, Baby!

Which means we’ve been incarcerated for 3 months now.  3 looooong months. 12 weeks since his transplant. 6 months since he arrived at this very hospital. Half way to the big 1.  1/2 of his life has been spent in this hospital. Alright already, I know, enough with the math, you get the idea.

So how have we made it this far? With laughter, tears and a little help from our friends (and family). It’s what families do. Grandma is indispensable, taking care of the boys, running back and forth, doing homework, keeping the little heathens alive. The sister-in-law’s have been taking turns being in charge of the Rain-man of  Trains and Hub, well Hub’s been doing his best to make sure the house is still standing for when we finally return home. Even the church ladies have helped out by bringing food over for Hub and the boys.

 And then there’s everyone else. Some people we know and some we don’t know very well. They all have one thing in common~ they have offered their help, or have they?

 Have you ever uttered the phrase “Is there anything I can do for you?”,  “Can I get you anything?”, “Is there anything you need?”  I’m sure at some point in your life, with the utmost sincerity, you have made this offer to someone. An obvious attempt at being helpful, much like that sign. (Which is real, btw. Much to my obvious amusement.)

It seems like a natural thing to say when someone is in an unfortunate situation. Hey, I’ll bet, sometimes we even mean it!  Because really, has anyone ever taken you up on that offer? I get any number of people asking me this question throughout the course of my day. Quite honestly, I’m not always sure how to respond. Politely, of course, but I’ve never actually accepted help from anyone, have you?

Nurses ask “Can I get you anything?”  Maybe. Got any chocolate? chinese takeout? No? okay then, I’m pretty sure there’s nothing you can get me. I know it’s part of your job to ask, but after 3 months, I think can get the soda myself.  Thank you anyway.

Doctors ask “Is there anything I can do for you?” Well yeah, fix Capt Snuggles. How hard is that? Okay, I concede our doctors are doing their best to fix him up, we are in one of the best hospitals in the country. So can I ask a doctor to get me a magazine, buy me a new Kindle, order me some chinese takeout? Probably not, and as you all know ~ I don’t read magazines anyway.

Chaplain asks “What can I do for you today?” I don’t know, we’ve already established that God has a weird sense of humor.  You’re the padre, do you really have a direct line to the man upstairs? If not, what can you do for me today? Probably not kosher to ask the Chaplain for chinese takeout.

Others will stop into our room and  ask these same questions. The reality of it is – what kind of answer do you expect when you offer to help someone? Do you think about possible answers when you ask this question? Other than our relatives and the lovely church ladies who took the initiative to bring the Hub food, no one has actually offered any tangible help.

No, that’s not true. My new friend T, who lives about an hour from the hospital, did offer to take time away from her family, her Hub and 3 kids, to sit with Capt Snuggles. Just so I could get home and see my boys for a few hours. Now that is what offering help is all about. Something specific, something tangible, something obvious.

I posed this question to another new friend of mine over at Etiquette From the Trenches (yes, she’s an etiquette maven, so please listen up) Her response: “I would keep a list of people who offer to help (with sincerity) and then call on them when needed. You can tell them that you appreciate the offer and will call them if there’s ever anything and then actually do it! …But, I’m like you … I never ask.  It would be more helpful for them to offer something specific, right?  Like to bring you dinner that’s not from the hospital or take your kids to see the new movie …. ”

Get that people? Something specific would be greatly appreciated. I know the doctors and nurses and various other people who actually work at the hospital may not be really offering their tangible help but friends and family and even acquaintances can take note and offer something real.

So, I’ll be keeping a list and checking it twice…you never know when I’ll be calling for my chinese takeout.

Have you helped anyone lately? Tell me about it. Did you see an obvious need and proffer tangible help or a generic catch-all offer? More importantly, did the person accept your offer of help?

Categories: Life | Tags: , , , , , , , , , , , | 19 Comments

Joie de vivre

This is Jacob. He’s 7. He has a smile that lights up the room.

He’s an accelerated reader, an excellent speller and a math wiz. He is a straight A student. He’s holding his award for perfect attendance this semester. He is a superstar. I think he is a good-looking boy, as do all the little girls in his class.  I like him with longer hair, it could use a wee bit of a trim, but overall, I think it’s fine.  The boy has the misfortune to have er.., well, let’s just say his ears are enormous. That’s right, I said it. The boys’ ears are huge.

Can’t tell, right? Exactly. That’s why the longer hair looks good on him….no ears. So while Capt Snuggles and I have been away, (sounds much nicer, like a short holiday..) Jacob decided he didn’t want longish hair anymore. I believe part of the problem came about because he had to wash his hair more frequently, as opposed to when he had a much shorter, almost crewcut-like coif. Really? Is it that difficult to wash your hair? Apparently for a 7-year-old boy, it is.

I tried, over the phone, to gently persuade him to re-consider his haircut decision. In the end, I was unsuccessful. Part of me wanted to say “NO!”, exert my parental influence, rage at the moon.  But, I want my boys to make their own decisions (with gentle guidance, of course…). At the end of the day – it is his head. Ears or no ears, he has to make sense of his own style, his own attitude about himself. We worry, as a culture, about girls and self-esteem and body image. What about boys? Do we really think it’s any less difficult for boys to make choices regarding their own unique look?  To brave ridicule and laughter, to make a statement with their style decisions?

I think it takes a certain joie de vivre to pull off this look.

oh , those ears!

 

Have you let your kids make decisions about their unique style even when you didn’t like their decisions? I’d love to hear from you in the comments section.

 

 

 

Categories: Life | Tags: , , , , , , , , | 7 Comments

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