March 9, 2015


after 7 months of being stably improved, parker has relapsed
and so,
the fight begins again.

yeah, some battles must be fought over and over and over again but like the hubster said, "no commanding officer would send a soldier to the front lines as often as our sparky has been sent."

the reality of relapse, well, we had suspected it for several weeks now.
he has been home and more or less bed-bound with severe joint pain, brain fog, nausea, dizzy spells, etc since january 19. 

the last 2 weeks has been a blur of appointments and tests. last monday his USA specialist, DR H, confirmed our suspicions - that our boy is in relapse -

we weren't suprised, no. but shell-shocked? yes.

it is one thing to suspect
it is another to have that suspicion confirmed.

it felt like a bomb had been dropped on us
and our world imploded. 

at the beginning of last week, i looked at the hubster and wailed, "i feel like someone died."
"me too." he choked out.

the thing is... relapse IS a loss.

our family is reeling.
torrential tears. white hot fury. wooden numbness. darkest despair. deep soul sorrow. paralyzing fear. 

so i guess the fact that we are cycling through stages of grief makes sense. 
when we consider how far sparky had come in the past year and how it's all been snatched away again - it's a staggering loss.  we had just begun unpacking the trauma of the last 5 years of his fight and now we are re-living the nightmare all over again.

we are living loss again.

we are stumbling numb through a twilight zone we had dared to believe we'd left behind.

and i can't stand it.
i can't handle it.
i am screaming on the inside.
i want to rip my eyes from head so i don't have see
i cannot watch this happen again
yet we are. we have.
the last 8 weeks we've watched his decent into hell.

seen him stripped bare of what he had regained
laid up and splayed out in agony

oh my God, where is your mercy?

how do you even find the words to begin to explain the reality of relapse?

it means living with no known time line. no way to know how or when or if he'll come out of this. one must hope, always hope, and yet somehow be prepared for the worst. 

the reality we have known is that it took 5 years of aggressive treatment to get him to remission the first time around.

is that what we face again?

what if it takes another 5 years before he's able to go back to school? it seems incomprehensible but it's happened before. that is the chilling reality.

he's had a childhood full of IVs and pills and tests and needles and doctors visits 
he had only just left that behind.

relapse means seeing images we never ever wanted to see again.

relapse means watching your boy get hooked up to IV again and simultaneously re-living his previous 5 years of IV treatment. it's stuffing down the avalanche of grief as your mind replays images of him hooked up to IV at age 9, 10, 11, 12, 13, and 14.

last week, parker re-started IV and it was gutting.
the hubster's heart broke
i heard it shatter into a thousand pieces.

a lifetime will not be long enough to heal that. my God, we will never ever be the same.

full stop.

the reality of relapse means we are gearing up to fight again

it means pill boxes and IV appointments
it means travelling to the usa for doctor's appointments
it means staggering medical bills

it means having to dig deep before you have the strength to do so.
it means secret tears spilling onto the cold, hard bathroom floor in the middle of the night.
it means fighting the prevailing thought that this will never end.

it means flailing in the dark with no easy answers
it means grappling with intense medical decisions 
it means sleepless nights and churning thoughts

it means your world stops but the world keeps on spinning
and the healthy world
it keeps on living and thriving
while you are plunged head long into the alternate universe of chronic survival 

the hubster and i are mostly numb
and we are walking wounded through an oppressive fog

relapse means contradictory feelings and needs

it means disconnecting from the world yet yearning for connection
it means needing help but not knowing what would help
it means needing to unburden yourself but not wanting to be a burden

relapse means you avoid casual interactions - 

it means bolting from a store just to avoid talking to someone you know
not because you don't like them or want to talk but because you don't know what to say. 

because you just can't fake it that day.
smile bright. nod your head
deflect the inevitable greeting, "How are you?"

because how do you answer that?
how do you tell people my kid is sick. again.  and we are living loss all over again and we fear this hell will never stop.

no, you can't say it. can't bear to say it out loud...because if you do, if you open up, open that wound and let it spill out? 

well, they'll be calling clean up in aisle 15. and that store doesn't have enough employees to scrape you off the floor.

and let's be honest, 
relapse means you even avoid acquaintances, co-workers, and friends 
sometimes they avoid you too.
it means few outgoing messages and even fewer incoming ones.
it means avoiding fellowship because you can't afford to risk hearing something trite or some token scriptural quote.

relapse means you are walking wounded with your heart bleeding out and just trying to hold it together so you don't fall apart.

it means a stoic eldest brother
it means a little sister scared to go to school and leave her sick brother at home.
it means seeing her red-rimmed eyes spilling hot burning tears and hearing her whisper,

"why is this happening to my brother again?"

it's you crying right alongside her and asking the very same unanswerable question... 

why God? why?

it's the old soul eyes of your boy who has suffered so much
it's the litany of emotion you see there 
his rarely spoken fears and unshed tears 

too raw, too brutal, too overwhelming to give voice to until one anguished, hushed whisper coming late one night, "this is so depressing mom, it's hard to believe i was feeling so good 2 months ago."

2 months.
it's been 2 months already you realize with a wretching twist of your gut.

2 months since the rug was pulled out from under him again.

that is the reality of relapse
i wonder how does he keep on keeping on?
his world shrinking from view, 
the long, lonely weeks with infrequent visitors
the worry that shouts loudest of all - how much more of this can he take before he breaks unfixable?

Do not let your fire go out spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet & the not-at-all. 
Do not let the hero in your soul perish in lonely frustration for the life you deserved & have never been able to reach.
The world you desire can be won.
It exists. It is real. It is possible.


Dawn said...

Oh, my friend. My heart breaks for you. I have been watching Sparky's progress. Willing his triumphs to be my daughter's triumphs... I am sorry in a way words cannot express. So much love to you all. I wish I had more to give.

Alexis said...

My heart is breaking....there are no words.

Lots of love and Hugz to you all....

Whistlertanya said...

I.just.can't.imagine. How - why - why - why......
Know we are always thinking of you and wish for more good days than bad

Anonymous said...

Dear sweet Shannon,
My heart aches to read your pain, your worry, your sadness etched in every word.
Your Sparky is made of tough stuff...look at his mom & dad.
Please lean on me. I'm here.
My twin sister left me with this on a post-it note last winter when they went back to Ontario:
"Faith is the daring of the soul to go further than it can see". (anon) I will keep you and your beautiful family in my thoughts day and night...
Hugs, strength and love,