November 14, 2014

HE CARRIED US

in september 2009, parker (aka sparky) came home from his first day of school feeling sick. within 6 weeks, he was in a wheelchair.



i vividly remember that little blue wheelchair. how tiny it was. how small sparky looked in it. how frail he was.

at the time, it was inconceivable to imagine that he would outgrow that chair and need another. and then another. that over the next 5 years, growth kits, frame sizes and picking colors on the lastest model would be in relation to a wheelchair and not bikes.




i have a vivid recollection of when sparky began to lose control of his legs. he was walking down the school hallway and his legs just kept giving out from under him. he had a dramatic wobbly limp and then every few steps, his jelly legs would buckle and he'd fall to the floor. after a few moments, he would painstakingly push himself off the floor and gripping the wall for support, he would start the whole process of stumbling, falling, picking himself up again all the way down the endless hall to his classroom. it was a terrifying and heartbreaking sight to see. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in her throat whispering, "This is breaking my heart."

it was the type of heartbreak that knocked the wind out of you
and it would be like this for the next 5 years.

i don't know how he possessed the gumption to keep going but it is this example of his deep-seated, quiet determination that would help him persevere thru the days, weeks, months and years that followed.




his deterioration happened at lightening speed. in a short 6 week time frame, he went from this stumbling walk to having to rely on a wheelchair to get around. by the end of october, he had to crawl on his hands and knees to get around our home. by november, he could no longer crawl but just pulled himself along on his belly. by december, he had days where he lacked the strength to move at all. he often had to be carried by his dad or brother.

he lost 15lbs in 3 weeks. his eyes became sunken and dulled with pain. he had rashes, migraines, nausea and difficulty breathing. he developed full body tremors and night time incontinence. he endured hallucinations, rages and his cognitive and processing abilities ebbed away. he could no longer hold a pencil or write. he often needed help to feed himself. and then there was the pain. always there was the relentless and agonizing joint pain. no amount of pain medication, IV or otherwise, ever provided relief. 

it is gutting to watch your child suffer and not be able to alleviate it. it chips away at your very soul.

Doctor's notes from Sparky's medical files

these painful memories flood back as vivid as the days and years that they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts...no, quite the contrary. i look back on these memories and am stunned that we are still standing today. that sparky is standing.

here's the thing. the standing and walking part, well, we don't know if or for how long that will last. we praise God that he has not needed his wheelchair since january 2014 and he has been stably improved since late spring 2014. but this could change in the blink of an eye. you never know with this disease. that is the reality of living with a chronic and incurable disease. there is no cure yet and there is no magical, miracle formula to bring about remission - the fight has been long and arduous...5 years and counting. it has taken 5 years of daily fist fulls of pills, 3 years of daily IV antibiotics, an extensive and exhaustive regime of complementary medicine - homeopathic, herbal and traditional chinese medicine, along with biofeedback and intensive physiotherapy to get to this point. 

and there is still healing ahead of him. and he's not walking out of this battle without the wounds of war following him. one does not lose 5 years of their childhood to a haze of suffering and pain and not have grief and loss to process. and he's wrestling with his faith and his relationship with God. he doesn't see the purpose in all that he has endured but he says that he believes that one day it'll all make sense. and he is keeping his heart and mind open to seeing that. 

when he entered this shadow land of suffering, he was a little boy of nine...now he is emerging as a young man. he will be 15 in a month. he stands tall (taller than momster!) and he is tall in bravery, strength, courage, and spirit.

and that tall in spirit part is the miracle in all of thisthat a child at the age of 9 can endure 5 years of relentless suffering and pain, essentially become cut off and shut away from the world and yet come out of this standing tall and unbroken... 

well isn't that the miracle in all of this?

Sparky - August 2014
Overlooking Noth Van from  top of  Lynn Peak

i share this today because i know that there are other momsters out there aching with the wounding that comes from the long nights of nursing the broken, gasping bodies of their babes. 


i know the despair of living the words incurable and chronic. i know the way that reality rips your heart out and then tramples it underfoot.

i know the despair and the terror that fills every fiber of your being and reaches into every recess of your mind when your child looks you dead in the eyes and says he'd rather die than go on living.

i know the horror of hearing your child endlessly screaming in agonizing pain. i know the devastation and heartbreak that follows when your attempts to bring them comfort, relief or solace fail. i know that a little piece of your heart will never ever recover from that. 

i know that their pain is your pain and you will carry it with you until the day that you die. 

i know that there is never enough of you to go around. i know the fear of what incurable and congenital disease means to your future. i know that you worry endlessly about your other children and their future and the future generations to come. i know you fear that if no cure comes, your grand babies may one day suffer.

i know the unwelcome resentments that filter in when you hear other parents complaining about how exhausting it is to drive their kid from activity to activity or get up for early morning practices.

i know how glancing into the car next to you at a stop light and seeing a kid in sports gear makes your heart wrench violently in your chest.

i know that you are exhausted from running IVs at all hours of the night. i know that the only car ride your baby takes is to and from doctors appointments.


i know how you want to scream and rail at how unfair it all is. i know how ashamed you feel to begrudge another parent their healthy child. i know how you feel guilty about that flicking line of resentment that weaves its way up from your knotted gut and lands strangle hold in your throat.

i know that you must be more than just a momster. 

i know the weight of being responsible for making tough medical decisions and that those decisions keep you up at night. i know that sometimes there are no good treatment choices and how you wish for clear cut answers and not choices that include this or that devastating side effects.

i know the hours and hours and hours spent scouring medical files, researching medical literature in order to educate yourself on this thing that has a choke hold on your baby. 

i know that some diseases come with a call to advocacy. i know that that work can burn you out. i know that the desire to educate others, to make a difference, to find a cure, to spare another, to support a newbie is the fire that drives you...even when you have nothing left to give.

i know what its like to live with your heart imploding on a daily basis. i know the screams you stifle, the grief you stuff and the strength it takes to just keep your head above the water. 

i know that you lie on the bathroom floor in a limp exhausted heap in the middle of the night, with silent tears streaming down your face. and you wonder how, just how in the world, will you find the strength to pick yourself up and face another day...let alone, a week, a month, a year, a lifetime. 

i know that the fight to keep your baby alive will take precedence over keeping other relationships alive. i know that you will be judged on this. i know that know one will ever really know how you feel. i know how quickly the crowd will thin exponentially. that who you thought would be your "go to" people at the start will be no where to be found. i know that very few will have the stamina to be there for the long haul. 

i know that unless you have lived the incurable, you cannot understand the sense of loss, the grief, the isolation, the relentlessness, the desperation, and the endlessness of it all.

i know that a childhood shattered by relentless suffering will take you to dark and desperate places. it will challenge your faith in God. it will make you question His Goodness, His faithfulness, His purpose and His plan. it will have you on your knees, face on the floor, fist pounding the earth. i know you will plead with God for mercy. for wisdom. for healing. for guidance. for forbearance. for strength. for relief. and in the most desolate of hours, you will bargain with Him. 

i know that quite possibly the deepest ache, the most pressing heartbreak is the worry that your baby will suffer irreparable damage to their spirit and that they will lose their hope along the way. 

that their suffering will whittle away at the essence of who they are and who they believe themselves to be and how they see themselves in relation the world and to the ONE who created it and them. 

yeah, that. 

perhaps, it is the deepest, most aching worry of a momster. the one that keeps you up at night and presses in hard and heavy on your chest. the kind that makes it hard to breath around. the weight of it refluxing you into a fetal balled position of desperation.

the kind that makes you feel very, very small and very, very helpless.

have courage, dear hearts - the incurable, that curse-able, despicable word that it is, does not have to be that which defines us, our children, or our lives. it does not have to break them...rather it can be the making of them.




how do you survive year 1? year 2? year 3? year 4? year 5 and on - how do you survive a lifetime of the incurable?

how do you survive the endlessness of it all?

you survive by allowing Him to carry you. carry all of it. there is no other way i know how. 

when the snot is pouring out of your nose as fast as the tears are beating a salty path down your cheeks, and you are angry and confused and scared and screaming, "why my kid?", you just have to give it to Him. you give them to Him.  




He carries us because that is who God is. that is what God does. and it is what God did - He sacrificed his son. Jesus, brutally crucified on a cross, His body broken then brought back to life, in order to redeem our broken lives in this broken world. and that allows His supernatural power to take up residence in our lives and that is what keeps us keeping on when the way is so broken and endless. 

it is because of Him and His sacrifice that we have hope. and it is in this that we can find the strength to carry us through. just as we have had to carry our son's broken body over the past 5 years, God has carried us.



this lyme thing, well, it is a horrific journey - i know that the strength we have had to persevere and endure has come from Him. i know He has carried us every. single. step of the way because the pain and the suffering has been so very all encompassing that we could not, cannot, bear it without His supernatural strength to sustain us.

we have the strength to stand today because He carried us.

2 Corinthians 4:7-10 & 16 Amplified Bible (AMP)

7 However, we possess this precious treasure [the divine Light of the Gospel] in frail, human vessels of earth, that the grandeur and exceeding greatness of the power may be shown to be from God and not from ourselves.

8 We are hedged in (pressed) on every side [troubled and oppressed in every way], but not cramped or crushed; we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair;

9 We are pursued (persecuted and hard driven), but not deserted [to stand alone]; we are struck down to the ground, but never struck out and destroyed;

10 Always carrying about in the body the liability and exposure to the same putting to death that the Lord Jesus suffered, so that the [[a]resurrection] life of Jesus also may be shown forth by and in our bodies.


16 Therefore we do not become discouraged (utterly spiritless, exhausted, and wearied out through fear). Though our outer man is [progressively] decaying and wasting away, yet our inner self is being [progressively] renewed day after day.








November 7, 2014

THIS IS MY BRAVE




once upon a time, i used to write a blog
and
then P.A.N.D.A.S came to town
and
shut it down

P.A.N.D.A.S turned my world upside down
it hijacked my brain
and
it made me terrified of everything

P.A.N.D.A.S will do that to you. 

what is P.A.N.D.A.S?


P.A.N.D.A.S is a cuddly acronym for a condition that is anything but. however, it does make for a memorably complex name - P.ediatric A.utoimmune N.europsychiatric D.isorders A.ssociated with S.treptococcal Infections
P.A.N.D.A.S is a condition brought on by exposure to the bacteria streptococcal-A (GABHS) infection, the bacteria that causes strep throat (albeit, it can also be caused by a virus or parasite). The disease turns the body's normal antibodies into dysfunctional ones that attack a part of the brain called the basal ganglia, which controls movement and thought. Bizarre behavior results, often causing a misdiagnosis of purely psychiatric illness.
The hallmark trait for P.A.N.D.A.S is sudden acute and debilitating onset of intense panic and anxiety disorders, mood changes that is accompanied by obsessive compulsive-like issues (OCD) and/or tics. urinary frequency, inability to concentrate, developmental regression, sensory sensitivities, insomnia, phobias, separation anxiety and movement disorders ensue.
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/
http://pandasnetwork.org/DALE2003autoimmune%5B1%5D.pdf
http://www.nimh.nih.gov/health/publications/pandas/index.shtml


that is P.A.N.D.A.S in a nutshell.

in May 2014, i was diagnosed with P.A.N.D.A.S
(this is in addition to my lyme and associated co-infections.)
the diagnosis of P.A.N.D.A.S came 8 months after i had a sudden onset of social phobia, separation anxiety, panic and anxiety attacks, paranoid delusions, intrusive thoughts, depression, pre-occupation with death, suicidal ideations, plans-to-end-it-all, tics and OCD. 


on the harrowing 8-month journey to my P.A.N.D.A.S diagnosis, differential diagnosis considered by mental health professionals included schizophrenia, bipolar, and dissociative disorder.

this disorder is considered relatively rare and is predominantly seen in the pediatric population. it was only identified in the late 1990's, making it even harder to find a doctor who's up on the current literature enough to recognize the clinical signs. the symptoms of P.A.N.D.A.S can be eerily similar to lyme but it is a separate entity all unto itself. this is why the diagnosis took a long time and was difficult to make. in very short, it took a brain EEG, a positive GABHS test result and a trip to DR H to finally put the pieces together. (i will write about the diagnostic journey in another post)

to say this past year has been hard would be the understatement of the decade. having your brain hijacked and falling into the deepest recesses of mental illness has a way of splaying you open and gutting you.

i am in the process of healing and recovery now. after several months of meds and antibiotic treatment for P.A.N.D.A.S, less coffee (ghastly sacrifice) and more chamomile tea (gag-worthy), intensive therapy and biofeedback to help my brain re-wire, i am emerging again. many of the most paralyzing psychiatric symptoms have resolved - but the social anxiety and social phobias still linger. this business of socializing - whether in person or on social media is still quite frightening for me. and while i know it's mostly irrational, my brain still interprets it as scary and threatening. 

sometimes i still feel really terrified. and like i just want to hole up and hide forever. this is new territory for me.

i am working on writing about this chapter in my life. the hubster has encouraged me to write about it. i know this is the next best step in my recovery. writing helps me heal. and i am always hopeful that my story will somehow help someone else heal too - or, at the very least, feel less alone. 



i write nearly every morning. indeed, i have already written pages and pages of journal entries, yet, the thought of putting my writing out there, leaves me sweating bullets, stomach clenched, pulse pounding in my ears, adrenaline coursing thru my veins and bile rising in my throat. and this happens regardless of the subject matter at hand - whether its wanting to share about the tough stuff or the good stuff or even just posting something relatively benign or silly or "liking" something on facebook. 

the fear and anxiety about this can get so big and overwhelming that i begin to feel really small and insignificant. and that my story really doesn't matter. and who am i to think that anything i can say will really make any difference anyway. i don't like having those feelings, so i try to avoid them by making myself really, really busy...

like even CHOOSING to BE in our kitchen and COOK and BAKE stuff. for real. (just so you know how out of character and unusual that is for me, during the 6 years i spent as a single mom, taylor specifically prayed (probably pleaded with God) for a dad who could cook. no lie. and God answered by sending us the hubster and he is a really, really good cook)


i have also been dressing up the dog & photographing him
or
helping him make crafts
or
sew himself a wardrobe

like i said, i will do ANYTHING and EVERYTHING to make myself too busy to launch my story into worldwide orbit.




the weird thing (even more weird than the dog sewing), is that i have always written raw and real and that was never scary to me. but it is now. yes, a lot has to do with the residual effects of my brain getting a good knock about from strep, but i think, if i'm really honest, the reasons are more complex and multi-faceted than that. really, the truth of it, is that i'm scared that talking about it will make people feel all awkward and weird around me
and
maybe even a little bit of nervous to be around me
or
that some will just outright reject me

because here's the thing;

mental illness is polarizing
everyone has an opinion about it
often it is the judgy, condemning ones that sound the loudest
and
that breeds fear and shame

there's another thing too;

who am i to stand here and shed light on such a complicated and difficult subject anyway?

sure, i have lived through a year of infection/autoimmune-induced mental illness but i am very aware that this hardly makes me an expert on the subject. i know i must tread careful and sensitive into this territory. really all i can do is find the courage to share the truth of what my family and i have lived thru this past year even though i am scared to talk about it. 

and how do i even talk about it when i am still healing from it?



this is my brave - this year, well it swallowed me whole.  it took me to a place, where fear was paralyzing and hopelessness pervasive. it took me to an alternate universe that i thought even God would not dare tread. it took me to a place i thought was beyond the reach of God. 

and when i came to the end of myself, this is what i discovered;

jesus was in that pit
holding me the whole time
and
that, well that i want to write about. i want people to know that there is hope. life is scary. it's hard. it hurts. and we all walk around trying to mask our fears and insecurities. to appear put together enough. strong enough. happy enough. confident enough. and maybe we are all afraid that if we reveal our true selves, people will run away from us.

maybe they will
but
maybe they won't.

you know what? something i've discovered over the last little while is that when i've been brave enough to share with folks what i've been thru this past year, they can relate to some part of my story. maybe they know someone that struggles with mental health issues or maybe they themselves do. and i have had the privilege of having some very precious and brave people lean in close to me and whisper, "me too".


that is the beautiful thing about being brave enough to be honest about your pain....it also frees others up to be brave. to say 'me too' and there is healing in that.


one last thing.
it is gonna take courage to post this.
oct 9 was P.AN.D.A.S Awareness Day. i had full intentions on publishing this post that day...but the dog was in desperate need of a new shirt so you know i got busy taking on that really important and worthwhile task.

it's now nov 7. if you are reading this, it means i finally worked up the nerve to publish this and post it to facebook.

it also means that i have hit publish and am fighting the urge to take it all back.

and maybe folks are gonna read this post and wonder how to respond...or they won't know what to say or whether or not "liking" it is appropriate or not. you might even think that in my socially phobic state of mind that any sort of response will freak me out.

and you know what? it probably will.
but
i've thought long and hard about this and i think a lack of response will probably freak me out even more.

so i'm going to be brave and say please go ahead and 'like' this. i know i might feel a bit scared by that. i also know that you might feel a bit scared to hit that little like button. it will take courage. it might even take more courage than you can muster today - and that is ok too - but your like, well, it just might help us all feel a little less alone and a little bit braver about our own secret stories. 

let's all be brave together.









September 20, 2014

LETTING GO & MOVING ON IS HARD AND HOLY WORK

so i woke up to this on my front door this week




it's a lock box. it gives realtors uncomplicated access to our home so they can show it and sell it.

there is nothing uncomplicated about the feelings we have in regards to this lock box.
our home is listed. we are not the home owners. we won't benefit from the sale. 

there have been showings and people coming thru and they are looking to buy our home right out from under us. the nerve!

it's just a matter of time before we are forced to leave.

that lock box makes the impending move that much more real. it makes the futility of our thus far search feel that much more overwhelming.

that lock box is an unwelcome reminder that we are being called to let go.

and then there is always the ache that this move is not our choice and i don't want to go. 

i don't want to let go and move on.

this is hard peeps. really hard. and it is hardest on my girl. she is struggling with stress, anxiety and anger and confused by it all. yeah. confused.

it has been breaking her down. over the last several weeks, she has become increasingly pensive and prickly and grumpy and sad. there have been many outbursts. it's been trying and frustrating to absorb.

the other day it really came to a head. she had been a dark and brooding storm cloud flashing white, hot anger all day long. and then there was one last brilliant display of eye rolling fury and this momster finally had enough.  

enough. enough. enough.

in a less-than-stellar momster moment, i was short and irritated - and unleashed my own tirade of huffing and puffing and i blew myself up.

voice raised, i bellowed,

 "STOP IT ALREADY. I HAVE HAD IT WITH YOUR ATTITUDE!"

well, isn't that the pot calling the kettle black.

ultimately, this culminated with her curling up on the couch. unshed tears and quivering lip. and she looked so small and so sad and like the weight of the world was crushing her.

i had the sudden realization that there was something more going on here...this was beyond the fiercesome melodrama that is 11...

*palm to the forehead* moment

a momster needs to stay humble and soft and sometimes ask questions rather than correcting behavior. 

"i'm sorry i lost my cool, babe. you are not acting like you. i get the feeling that there is something more going on than what i'm seeing. do you want to talk about it?"

with her arms hugging her knees to close to her chest, she haltingly spoke, "i don't want to be like this. and i know i'm taking it out on parker and you. i don't want to. i just have so many feelings and im feeling so mad and stressed and confused by all of it."

and that is all it took. the tears rolled. slow motion droplets falling one at a time. and i knew. yeah, we're treading on holy ground and in my frustration, i nearly plowed thru it and steam rolled over a tender and breaking heart.

thank you Jesus for grace.

yes. i should have known right away. the behaviour is only a symptom of heart pain. and this one, she is a lot like her momster. she feels everything deeply. her heart is tender and sensitive. and her head is a busy and loud place to live - it is a symphony of complicated feelings and over powering emotions that beat a lively albeit exhausting rhythm from head to heart a million times a day.

how could i be so blind?
thank you jesus for your grace in matters of the heart.

and then, in a breathy expulsion, she says what is really on her mind and in her heart and what is weighing her down most.

she goes on the say;

how she feels a little like God is pulling the rug out from under her again.

how she's wondering how to keep moving forward when the ground keeps shifting beneath her feet.

how her biggest brother grew up and moved out and she still keenly feels a sense of loss over this. he lives close by and he comes round but it's different and our family is not the same and how very much she misses him.

how when momster and sparky started to feel a little bit better this summer and got well enough to do life again, that she finally felt like maybe she could start breathing again and then wham! she found out she has to move - her life got turned upside down and the wind got knocked out of her again.

yeah. i get that. this move has blindsided us all. i'm 41 and finding it hard. how much more so for one who is 11. leaving the only home she has ever known. her friends. her school. her life. it's all gonna change. and it isn't her choice. its not what any of us would choose. we don't want to go. we don't even know where to go. yet, we are being called to let go and move on.

"the hardest part about growing is letting go of what you were used to, and moving on with something you're not." ~unknown

letting go and moving on is hard and holy work.

and i realize that right now, i am treading on hard and holy ground with this one. and i don't entirely know what to say because there aren't easy answers and i know she knows that. she is under no illusions that life can be hard and unfair. she's had a crash course in that for the past 8 years. first momster got sick with lyme. then both her brothers got sick with it too. she has been witness to untold suffering and chaos and pain. 

she gets that life can hurt so bad that it makes it hard to breathe.

so i take a deep breath and say a prayer and i plunge head long into this hard and confusing terrain.

i hug her hard. and i let her tears fall. and i tell her it's ok to feel confused, to feel angry at God and to feel scared. life is hard. faith is hard. letting go is hard.

and i tell her i'm proud of her for being brave enough to share her feelings out loud. that she is not alone. that even big people struggle with this. that i feel the same way too. and that there aren't easy answers because life isn't easy nor is it fair. and how being a follower of Jesus doesn't mean you are sheltered from life's storms but that He promises to be our shelter in the midst of them. how life is going to throw you more than you can handle but Jesus, well, He is here to help us thru it. He can take it. He can handle all of our hard feelings and problems. in fact, He WANTS to handle them. He DIED to handle them. yeah. that. His death & resurrection on a cross well it showed us that He wants the best for us - and that His best is found in reliance on Him and trust in Him. 

that being said, often His best is not the path that feels the easiest or the most comfortable. no, actually, it's often the opposite. and it's hard because we don't see the whole picture, the whole plan like He does. we have to trust His eyes and His ears and His heart and believe that He is moving - that He is always moving and acting in our best interests...even when it is hard. even when it hurts.

yeah. this business of letting go and moving on is hard and holy work. and it requires us to be brave. life is going to knock the breath out of us but Jesus carries us in those moments and he carries us for as long as it takes us to catch our breath. and He can make us brave enough to let go and strong enough to move on.

in letting go, we grow more in Him. and we learn that He will never let go of us. never ever. letting go and moving on it is hard and holy work...but Jesus is with us.