special needs parenting

Dusting Off My Gratitude Perspective

Sunday night it started with a fever, vomiting, runny nose and cough. We thought Ben had influenza, so right away on Monday we took him to the doctor for the flu test and to get Tamiflu, which is the recommendation from his Infectious Disease Doctor and Immunologist. The test was negative, leaving us to wait it out instead of getting a plan of action.

I prefer action.

His symptoms have ebbed, flowed, and yesterday triggered a Cyclical Vomiting episode, which we caught early and aborted. It’s Thursday and there’s no end to this mysterious sickness in sight.

Do you happen to have a thesaurus in front of you? Because I am every single synonym available in the English language for frustrated and worried. If you take the normal angst that sets in as a child’s illness lingers past four days and add to it the zebra qualities that Ben has and his uncanny ability to develop bizarre illnesses, then add a few drops of the stress of the potential for leukemia recurrence that always occupies a small piece of my brain. I’m sure you can imagine the scenarios playing out in my mind. And hey, guess what?! I have a hysterectomy scheduled for next week.

I’ve found myself sinking into a mire of what ifs.

This morning I recalled an old trick. It’s been awhile since life has been this chaotic, so my trick was stuffed away in a corner and pretty dusty, but I pulled it out and shook it off to find it in excellent working condition.

My trick is something I call gratitude perspective, and it goes like this:

  • Ben is like a wounded T Rex when he’s sick. He stomps through his day making the whole family as miserable as he is. But gratitude perspective says thank goodness for Tylenol to take the edge off.
  • I’m panicking about my surgery next week. It’s a huge adjustment for the whole family to have me needing care instead of giving it, and if Ben doesn’t get better before then…But gratitude perspective says thank goodness this isn’t happening next week.
  • I’m tired; mentally, physically and emotionally. But gratitude perspective reminds me that Ben is sleeping through the night, so that at least I don’t have sleep deprivation on top of the fatigue that accompanies caring for a sick child.

I could go on, but I think you get the idea. It’s a trick I learned when Ben was sick all the time (Gratitude perspective says thank goodness it has been a good long while since his sickness was a daily fact of life, and now it is an exception instead of the rule.) This trick literally kept my head on straight through many of the months and years of Hirschsprung’s, leukemia and dozens of hospitalizations. (Gratitude perspective; he isn’t in the hospital!)

I’m not sure I would have developed and refined this trick had it not been for the many times that Ben’s situation was dire enough to sap me of my joy and peace and forced me to cling to the tiny victories to survive.

Since those years I have stumbled into reading about resilience psychology, and gratitude is a major factor in resilience. Finding small slivers of goodness in rotten situations snatches back a sense of control in an otherwise uncontrollable circumstance. It may sound insignificant, but it’s a life ring in a rip tide.

I wish I hadn’t packed it up for so long, this gratitude perspective. It’s just as effective as tool in daily life as it is in the disruptions. Rather than grasping for a life ring after getting caught in the rip tide, wouldn’t it be better to just zip on a life preserver as a preventative measure?

cancer · parenting · special needs parenting

How The Gift Of Perspective Can Make You Grateful For The Crud

I’ve subsisted on NyQuil, DayQuil, Pepto and tiny bowls of Cheerios for a few days now. Every time I finish a bowl of said Cheerios I’m blessed with a quick little race…to the bathroom. I’ve never been a sprinter, but necessity can bring out the best in anyone. 

2 of my 3 kids have been on 2 different antibiotics in the past 2 weeks, and my husband is barely hanging on. 

The cold and flu season has been brutal to us this year. 

This is when I appreciate the gift of perspective. I tried to share it in a blog post here, and then on HuffPost, but the HuffPost commenters thought the piece misguided. 

I’m back from a different angle to give it another shot. It’s about perspective. 

From my current point of view, this sucks. I don’t like being sick, and it’s even worse when the whole family is suffering. We’re missing work and school and racking up doctor bills. 

However 

I realize just how normal this is, and I remember the terror of the cold and flu season when Benwas in leukemia treatment. That night we gave ibuprofen and Tylenol alternating to ride out a fever, he would have been unable to take either and would have gone to the emergency room as soon as his temp hit 101.5 axillary, possibly buying a few nights inpatient. I remember being sick while lying on a cold, hard cot in his room with alarms and night vitals and crummy coffee. 

And I know that with his insufficient immune system, and other medical issues it could happen again at any time, even without the rules for a cancer patient sending us there as soon as a fever hits a certain number. 

So here I sit. Flopped out in my chair, feeling like I was drug through a knothole backward, and being thankful to be home. Being thankful the antibiotics work. Being thankful we aren’t where we used to be, and thinking of the many, many people who are still on that path. 

Nope, we don’t have it so bad. We’ll make it through this, just like we’ve made it through many worse days. 

Perspective is a hard earned gift, and one I almost wish I didn’t have. But I do have it, and it makes me thankful for a fairly normal cold and flu season. 

parenting · special needs parenting

My Child Can’t Tell Me What is Wrong and it Breaks My Heart

This weekend Ben obviously didn’t feel well. He would hold his stomach, hold his head, was cranky and all out miserable. 


As evening approached he flirted with an elevated temperature. Only 99ish, but with shivers; moaning and groaning with achiness. 

He vomited a couple of times, but it didn’t seem like the Norovirus going around, nor like a Cyclical Vomiting episode. 

So we watched and waited and wondered. 

After a restless night he awoke appearing somewhat better. My husband and I shrugged and exchanged confused looks. At least he was no longer miserable. 

Late in the morning showered him off and cleaned his ears, revealing our answer. Ben’s ear was freshly draining; it was infected, and the pressure and pain had been alleviated when the blockage opened up. 

Mystery solved. 

If only it was always that easy. 

This one has a happy ending, but all too often, our child cannot tell us what he feels; even with something as straightforward as an ear infection. One would think he could just point to his ear and say “owie”, but he never does. Instead we put on our detective caps and do our best to uncover the origin.  We ponder, brainstorm, scratch our heads and shake them too, but all too often we land right back on angst, do not pass go, do not collect $200, and do not guess the real problem. 

And my heart aches and breaks when I try to help and fumble my way through. And my heart breaks that it’s so hard to help. 

We have this child with health problems and an inability to convey his bodily messages, or possibly even interpret them himself. When I think of how impotent I feel in my attempts to help, I wonder what he thinks. He clearly feels rotten and we’re supposed to be helping, solving his problems for him; yet we fail time and again. 

It’s a constant guessing game, remembering past episodes and sorting through symptoms. With this one we had covered our bases with Ibuprofen and Zofran (a nausea drug), but we aren’t always that accurate. 

And Ben suffers without a plea. 

cancer · Childhood Cancer Awareness Month · parenting · special needs parenting · Uncategorized

The Clinic Visit 

Today was Ben’s 6 month visit to the Hematology/Oncology (Hem/Onc) clinic.  So I thought, “hey, I can take photos and blog about his visit for Childhood Cancer Awareness Month.” I took my brilliant idea and ran with it. 

The clinic, as we close friends call it for short, is well stocked with snacks, which makes sense both for kids who struggle to get enough calories and for the steroid loaded kids who can’t get enough. 

Pause. 

Quick story. When Ben first started treatment there were procedures about weekly, and the kids would usually end up scheduled on the same day together, so we got tight with a group of kids. Back then we had a long walk to the sedation area, and we’d go in a little train of parents and staff with kids in wagons and wheelchairs. There was one little boy who was in the solid month of steroids at the start of his treatment, he was a cute little 3 or 4 year old. The kids had to have empty stomachs on procedure days because they’re sedated (procedures are usually lumbar punctures or bone marrow aspirations).  Anyway, this one little guy would spend his mornings waxing poetic about food.  He’d be riding along in his wagon saying, “I’m gonna have me some pieeeza, and I’m gonna have me a haambuurger with fries and ketchup, and I’m gonna have me some buhsketti, and maybe some Oreos…” And that little guy would just go on like that until his turn for sedation came. 

I digress. 

Check in consists of getting vitals checked and then we get ushered off to a room. As soon as we put out stuff down, we make a quick trip to the nutrition area where Ben gets his chocolate milk and cereal, and we hang out. 


The nurse comes in and reviews history and current med list, and then the blood draw. 

Sometimes Ben does okay with blood draws.  I’m not sure why, maybe it’s because he’s had a couple of hospitalizations since the last one, and several other blood draws, but Ben lost it. 

I don’t blame him. 

It sometimes takes numerous pokes to draw blood or start an IV, and when you’ve been putting up with that since infancy, well, sometimes you flip your lid. I meant to get a photo, but that wasn’t going to happen, so here’s the “after”. 

While we wait for the blood tests to run, a doctor or mid level practitioner (PA or NP), does a history and physical exam. 

Michele was the nurse practitioner who examined Ben today. We’ve known her since the very start, she’s kind, approachable, measured, smart, diligent and just plain spectacular. We went over the history of Ben’s last 6 months.  There was plenty to discuss. 2 surgeries;the reemergence of Cyclic Vomiting, along with the hospitalization for that. The referral to Nationwide Children’s for motility studies.  Throw in there the Parkinsonism, a visit to Infectious Disease docs, and new referrals to allergists and pulmonologists and you have yourself quite a stacked 6 months. 

Or, for us, “normal”.  

Michele, being the spectacular individual she is, paused at the end of the visit. She set aside her professional demeanor, and told me how bad she feels for all that has occurred. 

I quipped back that, well, we’re used to it, it’s just how it is, and we roll with it. 

Her eyes reddened and misted. She said, “I know, it’s normal to you, that’s why I feel bad, Ben just always has a work up like this. Every time. It’s not how it should be.”  

Since I completely suck at letting my guard down, my answer was, “but he just keeps bouncing back, he doesn’t know any different.”  

It seemed to make her feel better. 

Then we hung out in the playroom until Ben’s counts came back, right as rain. 

(Ben motioning to me to come play).


(Which I did, Ben gave me a checkup too).

Meanwhile, I put my lure at the wrong PokéStop. Sigh.  

special needs parenting · Uncategorized

A Tale Of Crappy Coffee (and other gross injustices)

13428036_10209106384553037_2165728530013621548_n

I am a coffee snob.  Not a latte or some kind of adulterated coffee, just a really good, smooth, rich cup of regular coffee, and it has to be fresh and hot.  My keurig is probably my favorite earthly possession (although it’s in fierce competition with my bed). I use the refillable pod, because landfills are gross, and my two cups a day are a treat of unquantifiable value.  From the second I sip my last drop I eagerly anticipate the next morning’s brew (of course after indulging in sleep in my luxurious bed).

So here I am, stuck in the hospital with my kid.  It’s not exactly a vacation here, the bed is torture, the shower is mediocre, and the cafeteria charged me $10 for soup and a salad (is this not the most outrageous thing ever?  I’m stuck here with my kid and a simple, healthy meal is exhorbidant).  But all of that I can abide.  At least my soup and salad were of good quality and nourishing, it’s the coffee that stirs my ire.

I’m sure that not everyone loves their coffee so much that they quote “Song of Solomon” to it in the morning, but I do.  I sometimes prepare the pod in the evening so that I can enjoy the aroma in anticipation of our morning love affair, a little java foreplay, if you will. But I’m not about to just drink it for my addiction, oh no.  I plan ahead, waiting for the optimal moment in which to sit down with my coffee and enjoy the intimacy of a girl and her brew.

So I’m away from home, from my luxiurious mattress, my husband, children and dog.  I’m sleeping on a medieval rack, paying out the nose for a light lunch, and cleaning up ungodly volumes of vomit.  I can live with all that, but I can’t live without decent coffee.

I don’t know who it is who decides how to vend coffee in children’s hospital, but sir or madam, if you happen upon this, please, consider the injustice of that Folger’s abomination in light of my plight.  I long to give good care to my sick child, with only one caveat; my coffee.

So now to decide how to launch my crusade.  Go Fund Me to fund ethically traded, real coffee in every children’s hospital in the U.S., or a Move On petition to mandate that hosptials provide it for us, or possibly just opening a kiosk on each floor here asking only good will offerings.

I am not yet sure how I will proceed, so stay tuned, this woman is on a mission.

Uncategorized

What NOT to say and what TO say

It was just before Christmas and my son was in the hospital for a suspected virus. There was a gift bazaar being held in a conference room of the hospital by a local church so that all the kids who were hospitalized at Christmas time could pick gifts for their family members and have them wrapped. I stood in the wrapping line and struck up a conversation with the woman next to me. We swapped stories of why our children were in the hospital. She told me that her daughter was a cancer patient and that she had been in the hospital three weeks out of every month since spring.

I gasped, “Oh my gosh, that’s awful, I’m so sorry!”

As soon as the words left my lips I wished I could take them back. The woman looked stricken. I realized too late that my dramatic reaction was like an assault to her. In a bitter irony, not even a month later it was my child on the oncology floor fighting cancer. I learned then a whole list of well meaning phrases that don’t always sit well with parents of sick kids.


Here are some of the phrases that struck a nerve:

  • God won’t give you more than you can handle
  • This too shall pass
  • You’re so strong
  • I could never do what you’re doing
  • My cousin (or aunt or other distant relative) had that same thing
  • I know how you feel
  • He’s so lucky to have you as his parents
  • Is this terminal?
  • I’m worried about you
  • You look tired
  • Have you tried essential oils (or marijuana or alternative medicine)


What to say instead:

  • Do you want company?
  • Could I bring you coffee or a snack?
  • I can give you a break if you need a nap
  • I can listen if you want to talk, but you don’t have to if you don’t want to
  • What can I pray for?
  • We care about you all
  • Can I bring you a meal?
  • I can help with _______ (be specific)

It’s easy to stick your foot in your mouth and say the wrong thing, so don’t beat yourself up if you don’t get it right. The really important thing is to be there for them and give support throughout the duration of the illness.

For more on this, the book, “What Can I Do To Help?” Can answer all your questions!

parenting · Uncategorized

To the medical professionals who listen, and those who don’t

Ben’s medical problems emerged in his first year of life, and have been continuous throughout his 12 years of life.  In parenting him, I have become an expert.  While I certainly don’t know as much as doctors about the individual diseases, I know more than anyone about the holistic Benjamin.  There are innumerable questions about his health and ways to optimize his care that aren’t in any chart, they’re all in my head.

Many healthcare professionals have learned this secret, and readily tap into the wealth of information that I’m eager to provide.  To you, the ones who listen, I thank you.  My son is more than a list of diagnoses, and you get that.  With your medical expertise and my parenting expertise we can provide exceptional care for my child, maximizing outcomes and wellbeing.  I want you to hear how valuable your open minds and adaptability are, and how very much we appreciate you.  You are truly a blessing to us, and you make office visits and medical procedures streamlined for us.  You provide the highest level of care when you team up with us.

Some healthcare professionals persist in a mentality that suggests that your education and experience trumps mine.  You sometimes outright disagree, which I actually appreciate because then we can dialogue and work through the differences.  It’s when you nod to my face and then do things your own way that you undermine care.  It’s those times that we need to bring to light.

I want you to know that I can tell you the best place to start an IV, exactly how he reacts to numerous medicines, and which one work best, and which ones have less desirable effects.  When you think you know better it can cause frustration, loss of trust, and adverse effects, and I almost always find out.

So, dear medical professional, I want you to understand that your power and credibility multiply exponentially when you work with your patients. I want you to know that we are longing to share our wealth of knowledge with you, and to receive more knowledge from you.  When we team up together we can obtain ideal outcomes for Benjamin and many other complex patients like him.