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?

advocacy · parenting · special needs parenting

Rare Disease Day Letter, February 28, 2017

In 2006 & 2007 I spent endless hours Googling, as only a terrified mom can. 

My son had an enormous, bloated belly and emacieated arms and legs. I knew to the core of my being that he was terribly sick.   But our pediatrician, whom we had seen for years and came highly recommended by my physician family member and whose praises I heard sung by local pediatric specialists, kept nonchalantly calling him “just constipated”.  

If there was a way to convey my message, I did it, I even weighed and photographed his bowel movement, which only came every 10 days or do. She just increased his dose of Miralax. 

As a child with Down syndrome Ben was at risk for several types of congenital gastrointestinal diseases, but the one test that his pediatrician ordered came back inconclusive. 

I don’t know why it took me so long to go around her, I certainly wouldn’t take that long today, but I finally asked to just see the GI doctor. By that time my 15 month old was wasting away at barely 15 pounds, he was listless and had long since stopped reaching milestones. 

The GI office was scheduling months out, but had a cancellation with a nurse practitioner, I snatched it up like a drowning woman would grasp at a lifeline. 

I was terrified that she, too, would fail to see the dire condition of my son, but she hustled on our behalf. She gave him a Failure to Thrive diagnosis and marked his chart as urgent. She ordered a slew of tests, and conferred with the practice chief to make sure she didn’t miss a thing. 

Within a few weeks Ben was diagnosed with Hirschsprung’s disease, and had lifesaving surgery performed.

Within the same year he got a second rare diagnosis, Cyclical Vomiting Syndrome

In the 9 years that have transpired since, he has had 2 more surgeries and 2 out of state referrals for care with super-specialized doctors who manage care for a small subset of children with similar diagnoses. We have made gains on his care, but his quality of life is impacted daily by these diseases, including an hour long bowel flush through a stoma in his belly button which is done daily because Ben is completely unable to control his bowels. 

I can’t help but wonder if his life would be better if his a Hirschsprung’s was diagnosed within 48 hours of birth, which is the standard of care, but his doctors saw a constipated child with Down syndrome, rather than a child with a Rare Disease. 

I ask only that you join me in awareness, and if you are so inclined, click this link and share it to generate a donation. http://rarediseaseday.us/thank-you-for-raising-your-hand/

There are many rare diseases, so many that up to 10% of the population has one. Since the people with the individual diseases are few and far between, we have banded together to advocate for ourselves and each other. We are stronger together!