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

Why Do I Post So Many Pictures of My Kids?

Many bloggers take great care to avoid showing their children's faces, to keep a modicum of privacy for their families. They make up blog names for their kids and keep the family's identity anonymous. I get that, the Internet is far from safe, people steal photos of children and use them for rotten purposes. It seems that it's foolish to churn out photo after photo of my precious brood.

But I do.

It's because I want you to see them, to really see my kids.

I want you to get used to their features; those almond shaped eyes and small mid face that are the hallmarks of Down syndrome.

I want you to see their humanity, their preciousness, and to recognize them as the multifaceted, complex people that they are.

Alex was stared at yesterday. Blatantly, unavoidably stared at for several minutes yesterday. I'm sure it's because he wears his diagnosis on his sweet face. Anyone who might not be familiar or comfortable with Down syndrome will see his differences and not be able to stop examining him in order to perhaps put a finger on just what is different about him.

I want a world where every single person can look at someone with a disability and see the human being, not the difference.

By my sharing of photographs and our daily ups and downs, I hope to give insight that will facilitate that. I want people to understand that my children are as adorable and adored as any other child, and also to realize that there are differences and challenges; both for them and for us as parents and caregivers.

This is all my bodacious effort to make the world a place where they are accepted.

How can I do that if you never see their faces?

I know that some will disagree, and I'm okay with that. In fact I'll gladly listen to any dissenting voice. I've never claimed to have all the answers. I'm just doing everything in my power to make the world a safe, accepting, and welcoming place for my children.

Something many parents get to take for granted.

advocacy · special needs parenting

Is Modern Medicine a Luxury?

Welp, here it goes. I can’t be silent. I reviewed the Senate Healthcare Bill, and it affects my son.  I don’t know if my blogging does a darn thing, but I believe I’m obligated to advocate for my child. As such, doing what I can to ensure that people are aware of the ramifications of this bill and asking those who care to make their voices heard, is the least I can do. 

For the sake of brevity, I will keep this to the two factors which have the greatest impact on my child.  The photos below were taken from an NPR summary of the bill. 

Many people think that Medicaid is a hand out to able bodied people who choose not to work.  However, around 90% of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons will rely on Medicaid for their medical coverage.  It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan, and Medicaid is cut, what would the options be?  Nothing here is clear, and for families like ours it’s terrifying. 

This part is even more harrowing. In addition to his developmental and medical needs, Ben has serious mental health needs.   He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his wellbeing is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with developmental, medical and psychiatric needs are sparse, if funding is cut, it would be nothing short of devastating for Ben and our family. 

But we aren’t the only ones. In fact, we’re pretty fortunate so far. Mike works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one that we can manage. For many, it’s already past management and only set to get worse, highlighted in this Washington Post article. 

Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.

I’ve followed Parker’s story for years now, and his family deserves better.  They’re working hard, being resourceful, and just want their son to live! 

Here’s the thing, we have spectacular medical science that’s evolving and growing daily. We are able to save lives that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected, too expensive for any but the wealthiest citizens to afford. Do we reserve such marvels for those who can afford to buy it? Is modern medicine a luxury for the few?  Is it a commodity available to only those who have the cash reserves to pay for it?  

How do we decide who gets this care?  Do we deny children whose parents don’t have jobs with a hearty benefit package?  Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off?  Or do we leave people with mental illness without access?  This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help them. 

Finally, I want to point out that it’s the “pro-life” party that is endorsing all of this, and I’m calling bullshit.  There is nothing life affirming or life-protecting about any of this.  This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In eleven years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent, I’m quite savvy at finding and accessing them, and we have had a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredibly helpful for certain things, but only a drop in the bucket compared to the day to day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs. 

So I ask you, do you really think it’s okay for people to suffer and die when medical care is available, but not affordable?  

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!

advocacy · politics

How many roads must a man walk down Before you call him a man?
How many seas must a white dove sail Before she sleeps in the sand?
Yes, and how many times must the cannon balls fly Before they’re forever banned?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many years can a mountain exist Before it’s washed to the sea?

Yes, and how many years can some people exist Before they’re allowed to be free?
Yes, and how many times can a man turn his head And pretend that he just doesn’t see?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

Yes, and how many times must a man look up Before he can see the sky?
Yes, and how many ears must one man have Before he can hear people cry?
Yes, and how many deaths will it take ’till he knows That too many people have died?
The answer, my friend, is blowin’ in the wind
The answer is blowin’ in the wind

~Bob Dylan 

I’ve been sitting here in my living room, screaming from the top of my lungs on a blog for a year now. It’s time to make noise in person. 


Now to see if they need a public speaker. 

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 · parenting · special needs parenting

Dear Parents of Sick Healthy Kids

If you are the parent of a healthy child, I want to talk to you a minute, if you care to listen.  I hope to let you try on my shoes a minute, because I always feel like we’re always talking past each other. 

I want you to understand. I get it. I remember being scared shitless when Hannah was little and had a high fever. I remember running her to urgent care for a virus, certain something was dreadfully wrong. I know the angst of parenting a little one during cold and flu season when they aren’t well. It feels like it’s never going to end, you’re tired and scared, it’s awful. It’s natural to be frustrated, upset and to complain. It feels like an eternity since you got a good night sleep, since you have felt clean and left the house. There’s no end in sight and you are just done.  I have been there, done that.  I want you to understand that I’ve lived in those shoes. 

Now I want you to just imagine mine. 

That trip to the doctor?  It turned into a trip to the ER, and a hospital admission. That hospital admission, it lasted over a week. Instead of riding out a fever, we rode out hospitalizations with tests, alarms, vital checks every 4 hours, and vinyl cots for night after night. 

Not just once, not just 2 or 3 times; we’ve actually lost track of the number of times we have experienced that. 

That’s enough. Believe me. But it isn’t all. 

There are the also the life-altering diagnoses. Getting the news that your child isn’t just sick, the sickness is life-threatening. Or the disease isn’t something that will run it’s course, but it will impact every day for the rest of your child’s life. 

Years of my child’s life have been altered by illness. Years of my parenting has been in that headachy haze of chronic sleeplessness that comes with parenting an acutely ill child. 


I tell you this not as a guilt trip or to shame you for feeling spent while caring for your sick child, but because I feel like you forget that how much and how long we have lived in that dreadful zone. I just want you to have perspective. 

On that night when your little one is thrashing with a fever and you’re covered in vomit, think of the families whose kids have chronic insomnia or chronic vomiting…or both. 

When you’re are flustered trying to decide if you need to run to the med center for a fever, remember that some families don’t have a choice, the child has to go to ER for every single fever. 

Your kid is a monster because he’s on steroids for croup? Some kids endure dozens of courses of steroids. Or more. 

The medical bills take you by surprise with the extraordinary cost of care, don’t they?  

I’m not asking you to get big girl panties, to suck it up, or even revoke your right to whine and complain, because I get it. It is hard. 

I just want you to understand that there are those of us who live months and even years of those days.   Please just remember us. Please. 

We’ve long since given up complaining about it. We often try to make light of it, but it’s doggone hard.