REALITY OF RELAPSE

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. 
again.

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
and
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 
and
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.

grief.
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 
and
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
and
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
and
i wonder how does he keep on keeping on?
his world shrinking from view, 
the long, lonely weeks with infrequent visitors
and
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.

LEAN IN & LOVE EACH OTHER

our pastor and his family lost their dog, ringo star, last week. his life cut short by sudden illness. (sharing with their permission)

their dog was one of a kind. even harrison agrees with that. we are fairly new to the church but i think it is safe to say that ringo was the "church's dog". he was often at the front door, greeting folks each sunday morning.

upon learning of his passing, my girl wept and wept and wept. i held her and as my shirt grew wet under the weight of her grief, my own tears slipped out to fall silent on her head pressed tight in to my chest. 

grief is hard. there are often really no words. the best thing we can do is just lean in and love each other.

so my girl, she leaned in to me and i just held her. and i ached for her and for this precious family who just lost their one of a kind fur member.

tears slip down my cheeks as i write this now. and i'm finding i have to pause now and then and wait until i can see the screen thru the blurring of my tears. i've asked the hubster if it is weird that i feel compelled to blog about this - but this post, well, it sorta just effortlessly tumbled into my brain as i lay awake last nite. the thoughts were still with me this morning, so i sat down to type them out. it isn't often that my writing comes easy, so i've decided to just go with it. maybe it is a little melodramatic to be so emotional about the loss of a dog that i have only known for a little time. but melodramatic or not,  that is me. i am a feeling person. i feel things really intensely. it is hard to be a feeling person. really hard. i ache for my tender-hearted girl because she inherited her momster's super ultra sensitive gene. at 41, i'm still learning to live with a heart that bruises and bleeds easily... and be okay with that. and not be scared of raising a girl that has one too. and not try to toughen us up. but rather learn to embrace these tender hearts that God has entrusted us with. after all, there is a purpose and plan in how and why he creates each of us.

i didn't want to tell avery about ringo. i knew her tender heart would break and break hard. i wanted to spare her the sorrow but i knew that i could trust God to be with her in her sorrow

after all, isn't that what Christmas is about?
Emmanuel.
God with us.
in our sorrow.
in our pain.
in our world.

as i tucked avery into bed last nite, her pillow was once again wet with fresh shed tears. and i knew her heart was busting up inside her. she lay on her side, tears trickling out from behind tightly shut eyelids. as i stroked her head, she sputtered,

"ringo was my first friend at reality church."

"oh baby girl." i leaned in and kissed her furrowed brow and wished that i could ease her pain. and i found myself welling up again too.

and it got me thinking about my first time meeting ringo...and how when we started at this new-to-us church, i was still very much dealing with active PANDAS symptoms...(read about PANDAS at "This is my brave" post.) getting the diagnosis just a few short weeks after we began attending reality church. this, after a 9 month journey that had quite frankly taken me to hell and back. i had lost a lot of myself during my decent into madness and in the process, my self esteem had been obliterated. i was (am) in the process of healing and rebuilding my damaged brain. some of me is changed - and i was trying to figure out this new me and learn to live with those changes. among the multiple brain issues caused by the pandas, i was suffering with a major social anxiety disorder. and having full blown panic attacks in church. 
just ask the hubster. 

and i didn't want people to know i was sick....whether it be about the pandas or the lyme - not because i was ashamed but because i have lived with the 'sick girl' label for 8 years now. and i wanted to shake it because sick scares people. 

yet, at the same time, i felt like i should come with a warning label. after all, we weren't just 'attending' a new church - the hubster had been approached by church leadership and asked to help run the church youth group. even tho', we very strongly felt that God's calling was upon our lives and that he had led us to this ministry opportunity at reality, i still felt very broken and like i was a total mess.

"i think you should tell them i am defective." i wailed to the hubster on more than one occasion.

after all, i figured it wouldn't take long for them to figure that out. like, that graham guy is great but is wife, well, woowee me, she's a hot mess.

yet, every sunday, despite sweating and fretting my way thru each service and struggling to focus - the message preached came across loud and clear. about truth, love, and grace. boundless grace. amazing grace. Jesus' grace. and even tho' my brain was still misfiring and riddled with anxiety, i could see that grace and feel it lived out by the people around me. and somehow i knew, God had us exactly where we needed to be.

"But sin didn’t, and doesn’t, have a chance in competition with the aggressive forgiveness we call grace. When it’s sin versus grace, grace wins hands down. All sin can do is threaten us with death, and that’s the end of it. Grace, because God is putting everything together again through the Messiah, invites us into life—a life that goes on and on and on, world without end." Rom 5:21 (MSG)

all is grace. 
Jesus is grace.
i could feel it in that place.

then enter ringo.

he was a big dog. his head was waist level on me. he would just sidle up to you and press his head into your side. then he would turn his big brown eyes up to you and LEAN in to you. hard. he LEANED IN HARD and without hesitation.

and that leaning in thing? it made you feel special and loved and like somehow you were the one person in the world that he was choosing to lean in to. 

we could all use a little bit of ringo in our lives. i don't mean walk up to someone and press your head into their waist. no. that would be weird. and awkward. there are some things that are only appropriate for a dog to do.

i'm talking about just bravely leaning in and loving each other right where we are at, right in the midst of our broken, messy lives, because the grace of Jesus is more than enough to cover it all. because we all NEED to feel loved and special because every single one of us IS loved and special - its just that life can make it hard to remember that sometimes. 

so, thanks ringo, thanks for leaning in and loving on me and my girl. and the many folks at reality church. thanks for being such a stellar church dog.

peace out, big guy. 

and thanks Jesus for using ringo to remind us how something as simple as leaning in to people right where they are at can make them feel special and loved.

and thanks Jesus for being the ultimate example of leaning in and loving people right where they are at. thanks for coming head long into a dank, dark and musty stable in order to lean in to our pain, our sorrow and our messiness.

because that is just awesome and awe-inspiring.

Emmanuel. God with us. 
Let us lean in and love each other without hesitation. 
All is grace.

POSTSCRIPT:
i wrote this post last week but delayed posting it until my pastor and family could have the opportunity to read it and give me their blessing to publish it. here's the thing...at the time i wrote it, i had no idea that (literally) within hours of writing, i would be heading into a pandas relapse. the official relapse diagnosis coming 2 days later - after a positive test result for acute strep infection.

my lyme docs have caught it quickly this time and i am already undergoing treatment for it. i am thankful that it has been caught early and we are hopeful that this attack will be mild...but it is still scary to live in "PANDAS land" again. i am also sick with a bacterial lung infection which is complicating matters.

so, this is not so awesome at all but what IS awesome is the outpouring of love and support i am experiencing since sharing news of my relapse. who would have thought that the very thing that this post became about - leaning in and loving each other - is the very thing that i would be in need of within 72 hours of writing about it.

but God knew.
He's leaning in to us. all the time.
even before we know we will be in need of it.
His love never fails.

Emmanuel.
God IS with US. without hesitation.

so thank you for leaning in and loving me.
your prayers and expressed thoughts have been a great comfort and encouragement to me.

and
please lean in and love on my pastor and his family thru their season of grief. remember, the miracle of leaning in is that it doesn't require speech to be effective and you don't need to know the right words to say to bring comfort... after all, ringo never spoke, not a word...but his leaning in to you, well, it spoke volumes.