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Stuck

After blasting through about half of the first draft of my book I’m stuck.  I suppose it could be considered writer’s block,  but I can’t even bring myself to open the chapter.   Not only that,  but I have a physical reaction when I even try. 

I’m fixing to get past it, but it’s taking a little bit of liquid courage  (which for this lady comes in the form of an extra cup of half caff with a hefty dollop of real whipped cream).  Once I post this I’ll get down to business.   I just need a minute to name this and get it out of my head.

I’m stuck at the end of Ben’s cancer treatment.  I’m stuck because this is where it gets convoluted.  End of cancer = celebration = bad is over,  good is starting.   That’s what we expected;  what we deserved.

Ah, yes, we knew Ben still had some problems with his Hirschsprung’s disease to tackle, a few speed bumps ahead, but the worst was behind us, we had a new beginning.  

Now it’s  3 years later and painfully obvious that Ben’s challenges will continue.   I had come to terms with cancer, with 3+ years of treatment.  But when that ended we didn’t get the happily ever after we had waited for,  that we had earned.  That is the exact point where the hope we had clung to melted away out of our hands, irretrievable.  

This is where my anger begins.  Sure, I had shaken my fist to the heavens and cried out many times,  but always with a mind to get us through to the end of the nightmare, never realizing that the “new normal” we had rested our hopes on was a mirage. 

I don’t know anymore if I believe that Ben will thrive in the way we had hoped.  Our hopes have been deferred,  and heart sickness has set in. 

But this is where I learned that a tree if life can still flourish in the midst of heart sicknesses.   Joy can be cultivated in heartache, and they can cohabit in awkward juxtaposition.

I’m not sure I will regain my once vibrant hope, but I do know that even when hope is dormant that beauty can be discovered amongst the ashes,  if you’re careful to look.  

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Praying in Your Workboots

“Pray as though everything depended on God. Work as though everything depended on you.” – Saint Augustine

*discalimer:  this is not a backhanded way to get things or make anyone feel badly, rather, observations coming from years of prayer requests and a genuine interest in improving quality of life for people with chronic illnesses and their families and caregivers.

Prayer is a valuable thing.  While we cannot put a numeric value on it, we also cannot underestimate people joining together to uplift someone who is sick or experiencing hardship.  Yet I am convinced that prayer is best done in workboots.   I mean that when praying for my own situation and when praying for others.  If you’re a prayer warrior, I believe you are such with a responsibility to pray with a mind toward how you can make a tangible difference in the matters about which you’re praying.

If you’re stuck for ideas, well today is your lucky day, because I’m full if them, so here we go!  This isn’t intended to be a comprehensive list, rather a jumping off point.

Free ideas:

*A note or email of encouragement, going beyond saying, “I’m praying”.  Adding details of what you’re praying for and giving a few uplifting words goes a long way.

*Respite.  If you’re low on cash but have time, many people caring for chronically ill loved ones feel tied down.  The gift of even a single hour of time is an enormous blessing. 

*A helping hand.  This winter a friend faithfully helped with snowblowing.  I don’t know if it was a big deal to him, but it was a big deal to us. 

Low cost ideas:

*Donations.  If everyone who ever said they were praying for Ben made a $1 donation to a reputable organization which either researches medical advances or provides assistance to families with cancer or other chronic illnesses, thousands of dollars would be given. 

*A care package.  It doesn’t have to be costly.  If you have a baked goods recipe that you’re darn proud of, share it with someone you’re praying for.  Things like tea, flowers, candles and personal care items also make lovely care packages, especially for women, and most importantly they know you really care. 

*Meals.  This one is tried and true.  After a long day at the doctor’s office, time and energy lag, and meals are a big deal.

If you have more money than time:

*Gas or grocery cards are a godsend.  Health care and driving expenses add up quickly.

*A donation to a charity in honor of the person you’re praying for. 

*A touch of luxury.  Whether a restaurant or spa gift card, or an indulgence of another kind, parents and other caregivers of people with chronic illnesses are short on self care, and a free indulgence can remove the guilt of doing something really nice for themselves.

As I said, this list is far from comprehensive.  Please feel free to add suggestions in the comments!

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The Opposite of Faith

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I stumbled upon this blog post yesterday.  I have been chewing on it since then, and thinking of my own version of “What Doesn’t Kill You”.

I certainly don’t feel stronger for all the trials we have experienced.  In fact, in many ways I feel broken.  As I’ve let my mind wander on this topic, it settled on a video that I watched as a group devotional once upon a time, and long since forgotten. I dug it up on the internet, and am plopping it here for your reference.

Now I am going to attempt to write out how my mind is weaving this all together.

Much of my life I have confused faith and certainty. I’ve convinced myself that in order to follow Christ that I had to embrace a certain set of beliefs that align with the brand of Christianity I grew up with.  It fit comfortably for a long time, so I saw no need to question it, until suddenly I couldn’t not question it.

While I don’t remember all of the details, one of the things that ignited my metamorphosis was a Bible study in which we were discussing the book of Job.  I pointed out that Job is, in fact, an epic poem, and that most scholars believe that a human being who lived the actual story of Job never actually existed.  When questioned, I pointed the other participants to the introduction of the book in their personal Bibles.  Even when reading in black and white the history and description of the book, several of the women were loath to believe it, declaring that they would cling to their belief in an actual human Job rather than wrapping their minds around something different than their unquestioned assumption.  They made a deliberate choice to disregard evidence that opposed their belief and embraced the belief that had been disproved.

I couldn’t shake the experience, and it became a catalyst for a paradigm shift.  I didn’t want to avoid changing my beliefs just because they fit like my favorite pair of slippers.

I kept my quest well hidden for some time, but as it burgeoned it became impossible to disguise.  I was so bought in to my faith that it’s evolution was quite noticeable.

I’d like to think of it as an epic saga.  Just as when Bilbo picked up the ring of power he had no idea what he was getting into, so my own admission that my certainty wasn’t actually faith has taken me on an adventure I never intended, one which I am still in the midst of.

I am allowing myself to be real, uncomfortably real. To say that even though this road was thrust upon me, I am unable to turn back, to unthink the thoughts, to unquestion the questions.  Even so the poignancy of living into the life that Christ taught, of bringing shalom to chaos is as much a part of me as it ever was.

I will embrace doubt as it cohabits with faith, knowing that doubt doesn’t oppose my faith, only certainty does that.

I am confident that the death of the tomato, in Rob’s words, is a lifegiving death.

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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 10 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.

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I want you to know that I noticed 

Every parent endures a public fit from a toddler. It’s a rite of passage, and though no fun, it’s generally accepted by all but a few curmudgeonly onlookers.

Fast forward a few years to a disregulated 10 year old, and it’s a whole different ballgame. If it feels like you’re in the spotlight when your 2 year old flops on the floor screaming, when it’s a 10 year old it feels like a fireworks display in Time Square.  When you have a child on the autism spectrum or with sensory challenges, you’re all too familiar with the public meltdown.

We had one of those less-than-optimal outings yesterday. The stars all misaligned and we had a necessary outing on a severely disregulated day. I expected odd looks and rude comments, but instead received kindness and dignity from several people, and I want them to know that I noticed, that it matters.

To the phlebotomist who showed kindness and acceptance beyond professionalism, I want you to know that I noticed.

To the doctor whose reassuring words calmed our anxiety about Ben’s disregulation, I want you to know that I noticed.

To the receptionist who registered us all together and minimized transitions, even though you didn’t have to, I want you to know that I noticed.

To my teenaged daughter who could just as easily have been mortified, but instead showed dignity and aplomb, I want you to know that I noticed.

Small acts of kindness are the air and water of special needs families. They make a difference. We notice.
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parenting · Uncategorized

All Of The Hats of a Special Needs Parent

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When I was little, my mom read to me daily.  I grew up with an appetite for reading, and a love of books.  I had a few favorite books, including the one pictured, “Caps For Sale”.  I don’t recall the book being any great work of literature, in fact, I’m pretty sure my criteria for favoring it was the man with all of the hats balanced on his head, and the monkeys in the story, which meant that my mom made monkey noises while reading it to me.  I think we counted all the hats too, which is what fond toddler memories are made of.

It’s still a favorite, but now for different a reason: I feel like the hat salesman, walking around with umpteen hats balanced on my head.

I’m pretty sure all parents feel this way to a certain extent.  We all have to play doctor, to advocate, to work with the schools, we all have several hats which we wear in turn,depending upon which role or roles we have to fill on a given day.  Our hats vary.  I’m sure the collection of hats a home school mom wears are entirely different from those of a mom working 60 hours a week, which are different from the hats of the special needs mom.

Today I come to talk about the hats of the special needs mom, because they’re the ones with which I am most familiar.  I have worn the working mom hats, the work at home mom hats, the home school mom hats, and several others, but my most enduring hat collection is that of the special needs mom.

Yesterday while changing Ben, I noticed one of his scars.  It was a tiny one, from the initial placement of his port, 7 years ago.  It is faded and one that I don’t pay much attention to all that often.  Last night I noticed it, up by his collarbone while we enjoyed a joyful, intimate moment as I changed him into his pajamas.  Just that quick peek of that tiny while lesion shattered me.  I realized in that moment that my “just plain mom” hat had been discarded somewhere along the way.

I have been wearing my trauma mama and attachment mama hat an awful lot lately, as well as my advocate hat.  My well-worn medical mama hat has seen the light of day, as well as the tubie mama.  My therapy mama hat has come out of the back of the closet after some disuse, but the hat I haven’t seen for quite some time surprised me with a visit in that moment.

I have been so busy being a doing mama for Ben, that I have long forgotten to be his mama.

That moment of vulnerability, when we giggled together and spontaneously hugged, disarmed me, and when I saw that small but significant scar, the earth shook beneath me.

In my hat juggling, I have filled so many roles, that the biggest, best, most important role slipped away unnoticed.

I suspect that I prefer it that way.  Doing is easier on the heart than being.  Doing for Ben gives me a sense of accomplishment, success, purpose.  Doing is difficult, challenging work, but being is terrifying, but in that unguarded moment, I realized that being is what I long for.  Just being.