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Rare Disease Day 2016

  Rare Disease Day 2016 is Monday, February 29. This day is a call to action for people affected by rare diseases to come together and raise awareness. When you have a rare disease, depending on just how rare it us, it can be difficult to find enough people impacted by the single disease to generate awareness, so some brilliant people have decided to make one day to focus on all the rare diseases, combining voices to ignite a movement.

Ben has rare diseases, and we have friends who have rare diseases. When I tell people that my boys have Down syndrome or that Ben is a leukemia survivor, nearly everyone has a frame of reference for that, but Hirschsprung’s disease, Cyclical Vomiting Syndrome and childhood Parkinsonism, not so much. I know that my friends whose kids have Dravet syndrome, or schitzencephalopathy, and other rare diseases have similar experiences, so for Ben and for them, I am joining in on Rare Disease Day.

I hope to offer a glimpse of our reality as a family affected by rare diseases, and that you will consider adding your voice to the conversation. Here are some common experiences of people living with rare diseases:

  • Doctor appointments are a way of life. We average 2-3 a week right now, but have had more or less in the past. I know families who have more than that all the time. 
  • We’re no stranger to the hospital. Whether it’s surgery, ER, or spending a few nights, we are the frequent flyers of the hospitals. 
  • Therapy too. Ben currently gets PT, OT and speech therapy at school plus additional private therapies. 
  • Our pharmacy staff recognizes us on sight. Meds are a way of life. I don’t like it, but the reality is that Big Pharma is the reason my kid is alive and has reasonable quality of life. 
  • We educate ourselves, finding books, articles and websites to learn as much as we can. Often information is not readily available, so we become detectives. 
  • We educate others. I have my Hirshsprung’s spiel, my CVS spiel, the one about Ben’s unusual surgery, and as I figure it out, I’m getting one together for Parkinsonism too. 
  • We’re resilient. When you live with rare disease it can feel like living in a lemon grove, but we make the best lemonade around. 
  • And man can we advocate. Often rare diseases are misdiagnosed or go without diagnosis for years. By the time we have obtained our rare disease diagnosis, we have survived a proverbial running with the bulls, so we can navigate some treacherous terrain. Often this produces passionate, assertive advocates with intuition and a strong voice. 
  • It can be a struggle to get insurance coverage for medicine, specialists, and out of network treatment centers. We often have to use those advocacy skills to get appropriate care. 
  • Appropriate care can mean traveling. And traveling with a loved one with a disease takes extra time and care. 
  • We’re often lonely. We don’t have support groups, and sometimes the only people we know with a similar path is a in a Facebook group. 
  • We didn’t choose this path, but we walk it with aplomb. 

To raise awareness, just use hashtag #raredisease, especially on February 29. The goal is to create a trend that could capture the attention of the media and government. Our hopes in so doing is to lighten the load for people affected by rare diseases, maybe eliminating a battle or two, and to engender solidarity. It’s not easy to live with chronic diseases, but when you have community and support, it makes the load a bit lighter. 

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I’m Absolutely Positive 

I’ve been pondering negativity lately. Well, that’s a nice way to put it. I’ve been in a snit about negativity lately. 

Not only are we coping with another tough diagnosis for Benjamin, but it seems that many people we know are struggling with harrowing circumstances as well.  The weight of the chaos in the world has been a constant burden, one with which I am striving to cope effectively.  

My method for approaching challenges consists of taking a limited time period to pout. I feel the feels, take a deep dive into my emotional cavern, then once I’m ready I hop out, put on my game face, and go. Sometimes this takes longer than others, but generally speaking, once I emerge from the emotional dive I can drive on with positivity as my navigator.  

This time my emotional plunge went deeper and longer than usual. I permitted myself an extended wallow in negativity, and sanctioned emotional eating, extended hours of useless couch flopping time (complete with comfey quilt and slippers), and a pretty pissy attitude.  I worried about the depth and duration of it, which furthered the descent.  

After a prolonged hibernation in my cave I poked my head out, seeing if it was safe to emerge. In doing so I felt bombarded with negativity.  The result was recoiling, wondering if it was safe to emerge when I was so susceptible to the complaints and frustrations of anyone with whom I interacted.  You see, when you’re trying to wrap your mind around Parkinson’s disease in your 10 year old, which was caused by the drugs used to save him from leukemia; and an acquaintance freaks out over a stomach bug, it takes superhuman self control to keep from sporking said complainer in the eyeball. (I just might have done the facebook comment version of the eyeball spork to that specific individual, but you’ll never know for sure). 

That incident was the impetus which prompted me to piece together an armor of sorts. (I’d thank said Negative Nelly, but she might have blocked me for pointing out that the sky is not actually falling because her child threw up for a few hours, not that I actually did that.). 

What I’ve realized is that living in gratitude is the only way I can navigate this world. 

In witnessing self pity over an episode which to me seems petty, I began to recognize that self pity, no matter the reason, is repugnant. 

Let that sink in a minute. Self pity is vulgar. 

I know it’s strong wording, but truth necessitates strong wording. 

I recognized that the magnitude of my reaction was because I felt entitled to self pity because my situation is worse than hers. 

No matter the enormity of your challenges in life, self pity is a maladaptive reaction. It preempts effectiveness and stymies gratitude, and is no part of a strategy toward a healthy, happy life. 

My goals for myself, my son, my whole family is to live in joy, peace, hope and love. Pity has the thief of them all. 

I’m not saying that I will execute it all the time or flawlessly, but I choose this day to spurn self pity whenever I observe it in myself. I write this not because I have already mastered it, but to firm my resolve, to dimiss destructive thought patterns in pursuance of thoughts which align with the joy, peace, hope and love that I seek. 

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The Healing Work of Memoir Writing

When I embarked on this work of writing a memoir, I knew it would be a cathartic and poignant path. 

My book is about parenting my son, Ben, who was born with Down syndrome, adopted by us, and who has proved resilient and spirited throughout many medical challenges, some of which are rare. The premise of the book is that even in the heart sickness that accompanies deferred hope, that a tree of life can blossom and thrive. 

I’m reading other memoirs as as I write, in varying genres such as the running memoir by Haruki Murakami, “What I Talk About When I Talk About Running”, and Paul Kalanithi’s “When Breath Becomes Air”. As I read I’m drinking on style, syntax, and voice, and discovering my own, an exhilarating process. I also pay close attention to the flow of the ride a good memoir delivers. My hope is to make my own half as enjoyable as the books I’m reading. 

What’s more, as I travel through time, meeting myself as an old friend, I am granting myself grace that I often reserve only for others. I think things like, “Oh sweet mama, you were so tired, and you just kept trying.” This results in serious self validation, and those who know me understand that validation is my favorite drug. 

But the most beautiful part of this work is fleshing out the theme.  I am in a spiritual drought, but reminding myself of why I have chosen to follow Christ’s example has awakened my soul. When I reinvestigate topics which have informed my character, such as Christ’s unconventional wisdom turning legalism on it’s head; or his years of redemptive ministry preceding the act which represents the redemption of the world; but mostly his pattern of bringing shalom to chaos as a demonstration of how we are supposed to operate in the world. 

I had lost sight of these anchors which had kept me stable in previous storms. The act of dusting these lost relics off and enjoying their beauty has perhaps been an agent of shalom in the chaos of my heart and mind. 

I started off determined, and I continue moving forward in joy and anticipation. This path has been littered with treasure, and has taught me to seek treasure in every step. 

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I Don’t Know How You Do It

 If I had a dollar for every time I heard that….well, I’d have a lot of dollars. 

People say it a lot, in every context. 

Advocating for a therapy or service “I don’t know how you do it.”

Going to yet another doctor appointment, “I don’t know how you do it.”

A new diagnosis to track down, another therapy needed, it doesn’t matter the context, the words are the same. 

“I don’t know how you do it.”

It doesn’t matter who is saying it, it always comes out the same, with a mixture of awe and puzzlement. 

Here’s the thing:  I don’t know how I do it either. 

It’s hard to rally time and time again. I look at other families and wonder why we didn’t get that package. It’s not that I think other families necessarily have it easier, just that normal looks pretty fetching from here, or at least as normal as having 2 kids with Down syndrome could be. 

But we didn’t get normal. We got the “hold onto your britches you’re in for a ride” package. 

There’s no sense waxing poetic about normal, it’s not going to be us. 

So how do I do it?

Well, mostly I just do it. There is no secret.  So when that puzzled look crosses someone’s face, and they utter those words, my response is generally lacking, and legitimately so. I wish I could jot down a formula. I wish there was a recipe. I wish they taught this in school, because man, I could really use a tutorial. 

The magic is simply not there. 

I get up in the morning and little arms wrap around my waist, and we start the day. My little mister didn’t choose to come with the extra super deluxe complex special needs package, but that’s what he got. So when those little arms wrap trustingly around me, I rise to the occasion. 

Please don’t assume it’s perfect or pretty. It’s most certainly not. I put a serious dent in some coffee chocolate chip gelato today, and did a bit of damage to the punching bag while I was at it. My house gets messy and sometimes I spend whole days accomplishing only the bare minimum. But when it comes down to it, I have a pair of Teflon coated, steel belted big girl panties for the days that I need them. They aren’t pretty, but they work. 

And when those little feet pad over to me and his eyes look up at me, it’s the fuel I need to push through and keep trying.  It’s a big, crazy marathon, and none of us signed up for it. But doggone it, we’re putting our best feet forward. It’s the only thing we know how to do. 

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Tech Bliss 

So often I hear people bemoaning technology, saying we’re losing touch with each other because we’re always checking our phones. I too am quick to be annoyed when someone forgoes self control and courtesy, continuing a phone conversation while checking out at a store, or ignoring the person right in front of them to check a text. 

  
But really, is that a technology problem or an individual problem?  Would the person being rude with their devices not also be rude without the device?  I feel that we throw the baby out with the bath water when we blame technology for bad behavior. 

As I jump into writing this memoir, I’m not a full time author who can sit at a computer and type for a few hours a day. I have a busy family, a job, and a house that hasn’t started cleaning itself, despite my heartiest wishes.  

I write when I can. If I was tied to a computer to write my time would be severely limited, and my book would take years to complete. But with the use of Google docs I can throw down a paragraph or page no matter where I am. If I think of a detail to add to a chapter I can write it in while I wait outside the school for a kid. If I have an idea while lying in bed I can grab my tablet and jot it down so I don’t lose it by morning.  The result is freedom, and that means this mom can write a book. 

Yes, I know I’m late to the party, Google docs has been around for awhile, but the love is real.   You can go ahead and lament technology, or run around with your phone constantly in your hand. I’ll reject either extreme.  Instead you will find me striving to make the best use I can of the tools at hand. I’m sure to slip toward excess from time to time, but it’s a risk I’m willing to take. I have a book to write, doggone it, and I am flat out excited to author a book from my phone.