autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

Brené Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.

 

special needs parenting

Letting Go of Hope Was the Best Thing I Ever Did

It happened after leukemia treatment ended.  I had spent over three years during treatment waiting for everything to get better, and then it didn’t.  I gave it time, it still didn’t.  I gave it more time.  You get the picture.

Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.

And so would the rest of ours.

It happened over and over and over.  Sometimes things would get better, but it never lasts.  And you know what they say about hope deferred.  I lived for years with the heart sickness of deferred hope.

Until I let it go.

Don’t get me wrong.  We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible.  I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.

In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it.  Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.

By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.

Letting go of that wishful thinking nearly crushed me.  I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions.  It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn.  I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.

And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.

running · special needs parenting · Uncategorized · writing

Obstacles vs. Barriers

Before I get into this, let me throw out definitions, just to ensure that we’re all on the same page.

ob·sta·cle
ˈäbstək(ə)l/
noun
  1. a thing that blocks one’s way or prevents or hinders progress.
bar·ri·er
ˈberēər/
noun
  1. a fence or other obstacle that prevents movement or access.

An obstacle hinders of prevents progress, a barrier simply prevents.  Let me suggest that there are very few real barriers in life, rather, there are many obstacles and choices that go with them.

For example, I had returned to college as a working adult to complete my bachelor’s degree.  I got pregnant.  Pregnancy was an obstcle to completeing my degree, but I chose to stop attending school because for me personally, working, parenting, and going to school was too much.  Another person could have made an entirely different choice and still have been right, just like I made the right choice.  But let me be clear, pregnancy was not a barrier, it did not prevent me from completing my degree, it just made the path trickier.

But I find that there are very few real barriers in life, very few things which actually prevent a person from doing something that is truly a priorty for them.  I fall into this camp:

I am reluctant to consider a closed door a barrier.

Yet many people would follow this path:

Image result for when god closes a door memes

(except shouldn’t they just accept it instead of excepting it?  Or is this to suggest that you omit it, I guess that works, but still, c’mon man).

Let me give an example.  In the movie, “The Lion King”, Simba watches his father die, and considers this a “closed door”.  He goes off, finds new friends, and lives a “Hakuna Matata” life, which is great.  But when he finds out that he’s needed in his old community, he reexamines the situation, and decides to bang down that closed door.  While his life with Timon and Pumbaa is cute and fun, you simply don’t have a hero until Simba decides that his closed door is just an obstacle, and obstacles can be overcome.

The formula applies in every story that has ever held conflict in which a character becomes a hero.  While I admit that stories are fiction, the same applies in real life.  Imagine if Walt Disney had taken his his failures as closed doors and decided to become a used car salesman.  Or Stephen King?  (A personal favorite of mine).  Or JK Rowling?  The list goes on.

I don’t know about you, but for me, I’m not taking that closed door as a sign that I should just move on.  I am a person with discernment and will, and as such, with each closed door, I will decide how to proceed.  This doesn’t mean that I won’t walk away from some closed doors, but it does mean that I will never assume a closed door is not meant to be opened, beaten down, or otherwise circumvented.

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

Rambling Rants


I beg your pardon from the get-go.  I’m sleep deprived and tired.  Bone tired. I’ve been spinning my wheels all weekend caring for a child who is too sick to accept my care. I hold his hand, he pushes me away, I rub his back, re recoils, I hold a basin to catch the vomit which has been reduced to stomach juices for 2 days and he bats the basin away.

I have been on the phone all morning with nurses, and get few answers. I spent the evening in the ER using trial and error to help him, and return home only to find the help was extremely short lived. Today I’m pulling out the stops to find help only to realize that our only prayer is that his body, an amazing self-righting machine, can find away to gain traction and achieve balance, and if it doesn’t, we resume trial and error.

I feel impotent facing his suffering, and so very angry that one human child must endure so much.

I am angry that modern medicine can produce marvels beyond our wildest imaginings, and still not grant my child relief.  I’m angry that the creative force behind the universe, the alpha and omega, the catalyst behind jellyfish, volcanoes, waterfalls and narwhals has allowed this child to fall through the gaps of all that is right and good in the world and bear so much suffering.   I am angry that my other children suffer alongside him, as do so many who love him.  I live in a state if cognitive dissonance over the injustice of it all.  I am angry that all the energy this lion mama can produce so often results in spinning my wheels, incompetent to be an agent of healing and wholeness for this child, no matter how hard I try.

For a moment he sleeps, and I pray, fruitlessly I fear, that the rest will restore him and that he will awaken refreshed, with his internal mechanism reset.
Conversely, I pray that if rest doesn’t restore that our doctors will dig deep, finding the root of the problems and long-term solutions for ultimate health and well-being.

I still hope, but I doubt.