Duct tape

Duct tape over a broken window- the prefect visual for life right now.

It’s not pretty, doesn’t really work and every time you see it you just feel bad- poor even.

We are back from giving our daughter her first round of chemo therapy- we traveled to Washington DC to a specialist to do it- and it cost $25,000- like swiping your own personal credit card and signing a tiny slip of paper that says $25,000. Money seems to have zero meaning in a moment like that.

As I sat on the floor of our hotel room next to her sleeping tortured body my mind wandered to what I’d call a book about all this if I ever write one. I was delirious- up all night monitoring her vitals because I know what the drug we just gave her can do.

Delirium produces some good thought sometimes- pure, raw.

Drinking Darkness

Crazy Love

Waiting for the Stop

And my favorite…. I Just Wanted to Play Tennis

I’m pretty meh about God right now- I’ve been there for several months. Something about watching a child suffer will really rape the faith right out of you. I’m not wanting to walk away or let go- I haven’t drawn up any divorce papers or anything. I’m just feel really really indifferent- towards the creator of the Universe.

Isn’t that strange? Indifferent- “creator of the universe”-yet I know and fully believe.

The truth is I really did “just want to play tennis.” I really believed that one day I’d have a few kids, and after I put in the hard baby/toddler/preschool stuff they’d go off to school and things would get way easier.

I could explore my interests again. Throw awesome printed invitation parties (because I’d be rich of course). Learn to flower arrange- so I could have something unique each week decorating that grand foyer of mine.

I’d volunteer, walk my dog, garden, bake and make amazing dinners.

And yes, I’d play really good tennis and have lunch afterwards with all my amazing friends- and we’d have deep amazing friendships and our husbands would love each other and we’d all take turns vacationing at each other’s beach houses.  I kid you not, this is what I had in mind.

Yesterday- I learned that I will be spending the next year in a house with my daughter- 7 days a week 24 hours a day. She won’t be going to school and breaks will be paid for and rare.

I love my daughter- crazy love, deep love, normal love that a mother has for her child. But, I had no plans of spending every day with her at age 9. And what’s more- she is incredibly difficult to be around. Difficult because she’s sick and difficult because the well her is not difficult at all and that makes it all the more strange and painful and guilty and mightmareish.

I have no idea what the year will hold. I have no idea how she will respond to the treatment she just received and will receive again in two weeks.

Here’s what I know:

It makes some kids worse for months before they slowly start to improve and then are cured-maybe– I really have to push this one out of my mind.

It means that for 2-3 months I’ll have to be a total nutty germ freak because she’ll have no immune system.

It means she loses another precious year of her childhood

It means suffering

Another nail in the coffin of any shred of belief she has left that life is good

It means another year our younger daughter has to have a sick sister who dominates life

It means no solid future planning (which I could deal with if it was not year 4 of that…I’m not really a planner but …)

I have no idea if this will work

I have no idea what to do if it doesn’t

 

I also know I gotta lay this down- surrender- I know I do I know I know

I have to live, we have to live, she has to live

But how??

I’m trying to figure it out- and that’s what I’m asking God right now- How do I let this go while living it?

For now I’m stocking up on duct tape and hoping for no more broken glass.

Getting that you don’t get it IS getting it.

I’m the girl (mom) you hated when your kids were little and just had no idea what you were doing- doubting almost everything, wondering if you were doing it right.
I’m the girl who had it all figured out- the rules, the do’s and do not’s.
I looked good doing it.
I wasn’t quiet about it either- which made me pretty deserving of hate, or at least deep distain (if you prefer euphemism).

Then my daughter got sick- really sick. You can read all about it HERE
The net net is (as it applies to this conversation) it has taught me HARD what it feels like to be very misunderstood.
My daughter’s disease is so very hard to understand. Four years into it, my husband and I (almost daily) question the nature of it. So. Very. Strange.

Her disease makes me look incompetent- like I just “can’t handle parenting” and actually sometimes I can’t
It makes me look like I’m being manipulated by her and she’s just trying to get attention.
Her disease makes me look- unorganized, scattered, messy, disheveled, flaky-
I have to change plans, miss appointments, ask for help, abandon obligations…all. The. Time.
The irony is this is just the opposite of who I “really” am.
I used to make birthday cakes, now I forget birthdays.

More deeply ironic is that she seems pretty normal. If you see her you’d never know (unless you can spot the classic moon face of a steroid consumer or the dark circles of insomniac).
She’ll talk to you, behave, preform- and then you’ll think maybe I’m crazy- making it up- or at least exaggerating.
When we visit family, she’ll fight her disease HARD- appearing “normal” for days- but we pay- the second she gets safely home- explosion. Moms of children with similar brain diseases can relate- but that does not make it better- I want all the “normal” moms to understand.

It’s real
It’s hard

This all kicks my pride hard in the teeth, because I’m that girl … know it all- perfect, competent, together.

No- I’m not

Lately I’ve come to accept- I get that people don’t’ – get it- and it’s not their fault

This got me thinking what don’t I get? That I think I do?

The first thing that came to mind

homosexuality
Being transgender
Being a woman who wants to work full time and rarely see her children
Leaving a husband
Being fat
Being snobby and exclusive
I list these in particular- I’m sure there are more- because at some point I’ve thought I got these (forgive me I don’t know how to put it) “types” of people.
My experience as a Mother of a sick child has taught me I don’t have any idea- I just don’t know- much.

People are WAY more complex than I can ever imagine.

Their lives, choices, ways of being are so very layered with sheets of stories- experiences- hard-

and behind curtains that I can’t open.
This is refreshing

I know you are ready

Have you ever let your mind go to that place were you visit the scenario of your child dying. You play out how you could go on. Maybe you recall some news story about a child dying and you put yourself in the place of that Mother. You go into your child’s room and you kiss their sleeping face fully saturated with thankfulness you are- you are not that mother- your world is ok. You shove the dark sickening feelings away knowing they are not yours- those feelings don’t belong to you.

I used to be there too.

Today as I write this I’m deeply angry- I’m angry because that is right where I am in the grief cycle- the anger part-

I’m grieving my living child.

She keeps getting kidnaped- taken away- murdered

I wish I could forget who she was before she was taken by this disease.

Just when I have her back safe in my arms- she’s gone again- over and over

Just as I begin to heal- I’m hit again with the same reality- like waking up to find that bad dream is in no way a figment of my imagination but the life I’ve been called to lead.

When I get close, relax, melt into normalcy and let her fully back into my heart again

I open the door to all the love and feeling I’ve stuffed in that sweet closet of mothering instinct- it pours out- only to be wasted and shoved back in.

…. poof she’s gone again

I’m not sure my heart can take it- and a protective crust is forming

When I think about this being how it will be forever my inside wants to run out of my body. My mind does that weird thing…like trying to grasp the concept of infinity-

I’ve come through this once before- a second time seems impossible.

I know you who love her are ready- you are ready for her to be better

You don’t really want to know how we are- I can hear it when I try to tell you- in your downplaying- comparing- rationalizing. You want to believe surely we are exaggerating, surely there something else going on.

I want to tell you it’s ok believe me I do

I’m not being dramatic

I’m not willing to hide to make you feel better

I’m here to ask  you to not- doubt- question.

If you can’t handle the truth, if you can’t hold our hands, if you can’t walk with us PLEASE don’t ask, please please please don’t

If it’s too hard for you

too weird

too ugly

too scary

Then leave- get out and don’t come back.

We need rocks- we need hope- we need hands to hold us up.

Tell us you’re sorry, that you believe us, that you wish you could take it away but please oh please don’t try to explain away the hurt-

If you don’t understand then tell us you don’t with an open heart TO understand

If you need some help understanding just go back to that news story and spend five minutes picturing your child dying over and over- and maybe you’ll get a taste for just how it feels.

Spark Joy

I just bought the popular organizing book The Life-Changing Magic of Tidying Up. I HAD to the cover said “life changing magic!”

Jap art

My purchase followed a “woah there is stuff everywhere and I’m drowning” meltdown I had Sunday. Proceeding the meltdown was an EMDR session (Eye Movement Desensitization and Reprograming) session I’m doing to treat Post Traumatic Stress after our daughter’s illness. MAN I just put the two together! I’m ready to get back in control and clean out.

During EMDR the therapist guides you through a series of eye movements and then you say what comes to mind (given that I have almost no filter this is easy for me). During this session I kept seeing images of dirty and disorganized everything. NOTE: I am “type A” but only the drive and focus part not in the organized neat part- clear? clear.

We’ve all heard the saying, “if you don’t have your health you don’t have anything” and I’m going to agree to the extent that a health crisis can certainly make everything else in life melt away into a big irrelevant puddle. For me that meant about a year of very bare minimum in the homemakeing department, and I wasn’t starting from a good place so imagine.

The book teaches that we need to preform a marathon of tidying- about a six month period where we access each item in our home and either toss it or find its place. The author takes it a step further encouraging us to hold each item first and see how our body responds, we are to ask ourselves, “does this item spark joy?”

Now, I’m gonna take this analogy a little far so bear with me…

This “does it spark joy” part kind rubbed me the wrong way.

Once I clean out litterly and get rid of everything in my house that does not “spark joy” will I be better? Is that what my mind was trying to tell me during my EMDR session? Put everthign back in its place, clean it up and it will all be ok?

Here is what I think is going on.

I want SO BADLY to have control over my life.

I don’t want God to be in control if I’m really honest.

When he’s in control it gets messy and unpredictable and there is a lot of “stuff'” that does not “spark joy.”

This summer when our daughter feel deeper into her illness with PANDAS life melted away around her. There was no control over even the next second of our day let alone if it was laundry day or not. So now that she is doing better and I don’t NEED God as much -what am I going to do?

The ME wants to turn to books and organizing and perfecting to get the joy back.

But that never works I know it you probably know it- but so if not US then what? Who?

How am I going to put my house in order? Spark joy? Be happy? Regain control?

The truth is I’m not really sure yet. BUT I know enough to know that I don’t have the answer, but what I do have is an opportunity to let God lead even though now I could take back over…I don’t desperately cry on the bathroom floor NEED GOD. But wait I do.

As we step into the last weeks of December we are all going to ask ourselves- what’s next? What do we want for the new fresh year?  What do we clean out? How do we “spark joy” in our lives?

I’m not knocking organization or cleaning, believe me I’m still going to do some serious physical decluttering over the next few weeks and I’ll still tighten up my exercise and eating come January 1st BUT I’m going to try to let God keep the control- turn to him for the joy I so desperately want to spark.

“You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore.”

Psalm 16:11

Other Kid

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Dear child who is not sick- the one no one talks about,

I see you and I’m sorry I don’t act like it.

I’m sorry I have nothing left for you, that I can’t really parent you right now- that you’ve had a few years of your life hijacked.

It’s not fair, it’s really not.

You are damaged and I know it.

We’ll repair it with therapy- maybe but it won’t ever be totally fixed.

I dream about you- about what God has planned for you.

I think about God’s baby factory up in heaven- how he knits together each little gift and then places them neatly in the frame of a movie playing below. I know he knows the ending and boy I wish I could get a glimpse of at least the middle or maybe hold a few pages of the script.

It’s gonna be good because you are.

I wonder why this way?

This isn’t the plan I had for you I promise- I really do.

I used to sit in front of my elementary school hot lunch and dream of being the mother that made the beautiful homemade lunches- the ones with love notes and folded napkins.

I planned to read to you not park you in front of the TV.

I never dreamed I’d send you to the neighbors to protect you from our life.

I fed you only breastmilk and organic homemade baby food and now I’ll quickly settle for Cheetos.

I yell at you when it’s not about you.

I push you aside.

I’m desperate to connect- to love you and care for your with my 110% mommy self. She’s in there don’t give up on her.

I feel like this and it brings me low and covered heavy with pain and grief and regret.

Somehow in those moments I remember the truth.

I remember that even your life is not your own. You belong to God- he created you for a purpose and it has nothing to do with music lessons, monograms or me.

He’s going to reveal your path, the one we just can’t see today.

This is the footing for that path the underpinning to who you will be. And I’m sorry but it has to be hard- not because you are special or better but because it’s a life here on earth separated for God- and that’s just hard.

No matter who your sister, mother, father is it’s gonna be tough here.

You are called according to HIS purpose- remember that and use it to dilute the pain of your childhood memories, memories of this time that is so very ink black terrible. I pray you will always see this time under the light of what God has made you into through it.

 

Romans 8:28

And we know that for those who love God all things work together for good, for those who are called according to his purpose.

 

 

Judging Away From Jesus

When I meet someone new today I find myself falling back into old patters sizing them up- trying to press them into one of my boxes so I can understand them. What do they value? What do they believe? Are they enough like me to understand and be understood by?
And then most of the time I snap out of it- realizing it’s the old way.
I remember that everything I see in daily encounters with others, their online post, our brief conversations is just a snippet of the whole. It’s just the edited version of the person presented for my easy consumption, but it’s not in any way the whole person. If I judge them based on this fragmented polished input I’m  sure to get it wrong. If I operate this way I’ll never know anyone.
As a Christian I have a set of strong standards based on the Bible and I hold them high … I should. But, how insane is it to expect everyone to have these same standards to judge them based on what I believe (even though I believe what I believe is the absolute truth)?
Am I willing to judge people away from Jesus?
When I judge I can never hope to get started with the Jesus stuff. No one will listen to me- feeling judged. AND when I’m in constant judgement of others aren’t I actually trying to be God? Isn’t judgement part of his work?
Now I know what you are thinking, my Christian friends, perhaps you are saying…”yes but there is truth and we have to stand up for it.” I could not agree more. But, you have to be invited into the truth space with someone before you can even hope they’ll hear it.  That invitation is only the product of deep, trusted, judgement free relationship.
If “we Christians” want to reach people we have to start with love, understanding (and I’m not saying the anything goes understanding) I’m talking about trying to meet people where they are at. How do they feel? What is really going on? How did they get “that way?”
Sadly, for inpatients like me this takes time.
Years.
If I’m more honest it takes much self-control. I want to yell what I believe out loud aggressively I want to bully people into seeing truth shake them by the shoulder and say “you’ve got it wrong…come over here it’s better.” It feels good for me to judge. I temporarily feel superior
but the hangover is brutal, gross, disgusting and it destroys any hope of helping others know Jesus.
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Margin

Margin

Margin of error

Margin of profit

Margin for others

I was recently enjoying a night out with two dear friends. It’s been months since we’ve really connected and we were playing the fill me in game. My friend shared that she felt a little less than because she wasn’t really doing anything important the important was implied. We provided the almost cliché response given to stay at home Mom’s “of course you are you are doing the most important job in the world.” … Now of course we believed what we were saying but after thinking about it more I realized there is much more to her life than she realizes.- than we realized

If you deconstruct her comment she in comparison to our society feels that she does not have enough on the books. Her days are not FILLED. She has blank time.

Blank time is scary if you really think about it. Especially if you are willing to let others use it.

You are in essence scheduling the opportunity the possibility of giving up control of having your time hijacked by the needs of someone else.

I have to say, as I think more about the way my friend lives I see she leaves blank time on purpose and she fills it with fulfilling the needs of others as they are presented, but in real time- unplanned and anticipated. She gives in ways that you can’t really count and the beautiful thing is she doesn’t care, need to keep track.

I see this in a few other women in my life. Women who have so much on their plate, the same stuff that makes you and I say…”LOVE to help but I’m just too busy”… these ladies will lay it down for you… quickly and sacrificially. I also see how they suffer for it. Their houses are less clean, dinners less prepared, they are at times more harried, but they get the BIG picture. That our life is not our own, and it’s not JUST for our husbands, or our children, or our employers. Our life is for God- we show him he owns it when we are available for his people in need.

Living with Margin- space is the “in the moment” pinnacle. You right where you are available open-.

These marginers rescue my younger daughter at a moment’s notice

They listen to me over and over and over as I tell them basically the same hard story of a suffering family – AND they keep asking

They rush over to physically help me abandoning their day

They cook for me when they are tired and haven’t given a thought to how or what to feed their families

They love me- with sacrifice.

Oh God thank you, thank you for calling us to have some MARGIN- give us the strength to have the courage to allow for it. Thank you for showing up in my friends, in my Mother, my Father, my Brother, my Sister, my Husband

1 Corinthians 12:12-20

12 For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. 13 For in one Spirit we were all baptized into one body—Jews or Greeks, slaves[d] or free—and all were made to drink of one Spirit.

14 For the body does not consist of one member but of many. 15 If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would

not make it any less a part of the body. 17 If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? 18 But as it is, God arranged the members in the body, each one of them, as he chose. 19 If all were a single member, where would the body be? 20 As it is, there are many parts,[e] yet one body.

You are not enough

Today I pulled into a dark Fall driveway and was greeted by a flood of needs.

A neglected child

A lonely and stressed husband

A dog who missed his daily companion

I was knocked by the force of it, overwhelmed by my inadequacy.

The people, and animal, were needy because three days prior I had left them in an emergency dash.

The previous four days had been filled with the cries, screams and rages of a child whose mind is fully under attack, a child desperate for death to deliver her from pain. The kind of behavior that leaves you desperately pacing, pulling your own hair, grabbing at your own face hungry for answers.

On the advice of her doctor we, my dear brother, father and I, raced to D.C. for the IVIG therapy we hoped will calm her storm. During IVIG antibodies from a thousand different donors are administered to the patient. The hope is that the administered antibodies would “retrain” the abnormal antibodies of the patient or that the large amount antibodies administered may simply overwhelm the patient’s harmful antibodies.

Each day I sat in a room as this hope serum was infused into my sweet child for over five hours. I watched a boy next to us have and anaphylactic reaction to the same medicine she was getting; I listened to my husband’s pressed voice tell of the night mares our younger daughter is having and how she hears her sister’s “phantom” screams in her tender mind while at school: I felt the saliva drip through my fingers as I pleadingly covered Greta’s mouth, desperate to stifle her screams as we rushed her out of the hotel room and into the car each night. She was in full rage, her mind shook and distorted after treatments. We drove and we drove and drove around the silent streets of Washington because there was no where else to go.

The next moring I sat in the hallway of the hotel outside the propped open door of our room among the smelly room service trays dizzied by the busy carpet,  totally and completely at the end of myself.

Desperate for some escape, I dialed one of my closest friends…knowing she’d answer…knowing she was with my other rocks at our weekly Bible study. And what beautiful truth one of them spoke.

Here is what she said:

It’s not up to you

It’s not on your shoulders

God’s grace takes over where you fail and when you fail

The buck does not stop with us

We just can’t be God for our children

In short she was telling me the truth- I’ll never be enough for my children- never ever.

They need so much more than me.

There’s been a lot of silence between my girls and I lately, silence I can’t take back. Opportunities to point them to the “thing” that is enough and I’ve remained silent far too often. Tonight as I lay next to our younger daughter, rubbing her back trying to eek some emotion and compassion from my depleted mind and soul I spoke some truth and I think she got it.

“God allows bad things sometimes and one day we will understand why, but I promise you it will all work out for our good.” she didn’t question she just said, “I know mommy I know it will.”

WE  are not enough, on our best day, in periods of trial, in wealth, in beauty in anything… it’s not enough. Our children will always have a Jesus sized hole in their little hearts-

If I want to be enough…. I  just have to point them away from me and towards the only one who can fill it. Nothing but Jesus.

John 16:33

33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

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Open Kimono

I’ve always been a really really, at times painfully I realize, open blunt honest person. It’s just how God made me… I’ve learned over the years it’s a blessing and curse. So, when I was considering going full-out open about someone else’s disease, our seven-year old daughter’s, I had to really do some knee talking with God. It’ s one thing for me to spill MY guts but it’s another thing to decide essentially for my child that I was going to tell her story…and it’s an ugly story.

Sure I asked her if she wanted to tell her story, but let’s face it she’s seven. I warned her about the fact that one day she’ll be 16 and someone at school might find an article about her or see the documentary she will be in…and that could feel really really weird. I’m pretty sure she could not really grasp the feeling of embarrassed teenage future so in the end, yes I made the call.

As I prayed about it..what to share, if to share, I kept coming back to… if this was cancer I’d have no qualms about showing and sharing. Because people “get” cancer right? They understand it…and it is certainly not your fault that you have it…so it’s cool to talk about. OK to share.

But… mental illness (and I had a hard time just typing the words “mental illness” because honestly I see this as a totally physical illness…but) no no certainly that has to be someone’s fault. Like at least bad genes. And we wouldn’t want to talk about it because it could “come back to haunt her in the future” she might “become labeled.” BUT we don’t treat kids with cancer, or epilepsy or lupus, or arthritis like that. I’ve I believe this is a “real” disease then I have to talk about it as such.

The reason why the gap between how we treat disorders of the brain and those of the body exists is because of the above…no one wants to talk about it, or risk being pinned with a stigma. The only way to bring the brain back into the body for the medical community- is to talk about it as part of the whole.

So honey, forgive me, sweet wonderful daughter who had absolutely noting to do with “getting” this horrid disease I have to tell your story, our story, my story because I’m that sure that God made us that strong and that we can handle any fall out.

The other issue that bounced back to me over and over as I prayed is PRIDE. I have to capitalize every letter in PRIDE because honestly, it’s at the root of pretty much anything bad that’s been deeply examined.  If I totally let go of PRIDE of worry about what people thought would I then be ok telling the story? Would I let PRIDE keep me for helping another family -keep them from making this just a three-week on antibiotics illness vs a 15 month, hand fulls of doctors, tens of thousands of dollars, three trips to DC, surgery and who knows what else… disease?

I love what C.S. Lewis says about pride, “a proud man is always looking down on things and people; and, of course, as long as you’re looking down, you can’t see something that’s above you.”

 
 

Finally, this was the deal sealer, was I going to keep what I know God is doing to myself? As the kids song goes, “hide it under a bushel…NO…I’m gonna let it shine.”

So in my previous post I started telling you where we are and how we got here.

Let me update you.

First a quick and dirty lesson on PANDAS.

What the heck is PANDAS?

Straight from the NIH website:

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when:

  • Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or
  • The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.

The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones.

Wait what is the NIH?

An agency of the United States Department of Health and Human Services, it is the primary agency of the United States government responsible for biomedical and health-related research. The NIH both conducts its own scientific research through its Intramural Research Program (IRP) and provides major biomedical research funding to non-NIH research facilities through its Extramural Research Program.

In my term it’s the command center for health research in the U.S.

How does PANDAS look for us?

In March of 2014 our daughter had a strep infection. About 4 months later she began having extreme separation anxiety. She stared Kindergarten and shortly after began having daily “fits.” many in the PANDAS community call these “Flairs.”   These fits consisted of (in the beginning) complaining that something was in or wrong with her throat she would voice this complaint right when the car door shut from carpool she would repeat the words “my throat hurts” thousands of times and eventually erupt into screaming (and I’m talking about screaming at the top of her lungs in a moving car). Things got worse from there…

Here is the path we worked:

  • Something IS really wrong with her throat -no ruled out.  I need to point out here that I brought a sheet about PANDAS that I printed off to her pediatrician he told me that PANDAS is “controversial” and since she did not currently have strep she could not have PANDAS. Totally a position that only someone who knows very little to nothing about the disease could take.
  • She has a panic disorder -7 months of exposure therapy with a wonderful experienced child psychologist= NOTHING
  • She has a learning disability that is making school troubling for her- NOPE extensive testing basically nothing.
  • Two psychiatrist and three SSRI’s- NOTHING although our second psych I have to credit he did insist that he believed there was a medical underpinning to our daughter’s disease and that he would not prescribe any further medication until we ruled that out. YES!!
  • Pediatric Neurologist, 5 days in the hospital, MRI, EEG, lumbar puncture, a TON of blood work- basically nothing we did see a history of strep in the blood and white blood cells in spinal fluid. so there was “something” just ..well no one knew what to do.
  • Could it be a Sensory Processing Disorder??? Well yes no..it’s part of PANDAS

Here is an interview of me discussing our path done by Film Maker Tim Sorel – He is behind the Documentary on PANDAS My Kid Is Not Crazy coming in early 2016.

Her symptoms

  • extreme OCD
  • repeating words or questions without being able to control it
  • Self harm-picking scabs to cause bleeding (not in a normal kid way in a I’m loosing it and I need to feel something way)
  • extreme separation anxiety (trying to leave the school to “find me” an hour after I’d dropped her off, requiring two teachers to restrain her)
  • Obsession with where bathrooms are and frequent urination
  • Fits- that involve extreme rage and violence (only towards us- Mom and Dad and once Grandpa) hitting, biting, kicking really general fighting for her life … screaming ALL OUT lasting 45-90min and at times twice a day. Think of a seizure but the child is awake, she’s literally telling you she can’t control her self while she’s trying to attack you.
  • suicidal thoughts
  • refusal to eat
  • refusal to swallow (even saliva)
  • inability to attend school
  • depression
  • anxiety
  • age regression talking and acting like a baby (not for play during an attack)

Finally the GOD intervention I shared in my post The Eye Cannot See What The Mind Does Not Know

And now we’ve traveled from Charlotte to D.C. to have her tonsils and adenoids removed (while all the way there you ask?) because at Medstar Georgetown University Hospital they know PANDAS…and I could not deal with another doctor or nurse who I had to explain the disease to. A more medically sound reason… we wanted to have the tonsils fully biopsied at a very sensitive lab.

Why remove the tonsils? for us we wanted to see exactly what she was colonized with or caring in her tonsils, this will help the doctors select the correct antibiotic to treat her disease. AND there is good data that shows that PANDAS kids do better post tonsillectomy. Oh and that is what the leading PANDAS in the country told us to do..so there’s that.

So…today we are awaiting her tonsil biopsy… and praying that there is something magical for her in having her tonsils removed.

But, here is what I do know.

She’ll get better

She’ll help others

God is good

God is allowing this

God is in control

And I know people say that kinda stuff about God all the time, you almost get to the point where you are like ahhh people with sick kids have to believe in something.

NO, ya’ll NO… I see God in this daily, and when you strain all your frustration, anger, and sadness through the sieve of “God is good and he is in control” the liquid that comes out the other end is sweet life-giving and it allows you to walk through anything. You feel your shoulders relax and that “I have to do tons of research and figure this all out an it’s all up to me” pit leave your stomach.

Remember this, for those who believe in God this Earth is AS BAD AS IT GETS…and for those who DON’T … this Earth is AS GOOD AS IT GETS.

I hope you will really think about that. I do everyday. It keeps me going, but only because it’s true.

 

 

 

The Eye Cannot See What the Mind Does Not Know

It’s gonna be hard for me to put into words what our family is going through. I’m sitting here trying to figure out the best way to make you understand, to explain it and I know there is no way I can do it with English language. So why even share? I want you to feel sorry for me yes a little it feels so dark and lonely here, I want to inform you in case this happens to you- I want to prevent you from going through this hell, mostly I want you to understand that God (the burning bush die on the cross one) is still SO VERY real and working in our world.

Will you come with me, clear your mind of any prejudgment and allow THAT to be a possibility …THAT what we are going through just might be for God…for God to be seen, known, understood by maybe you?  You are that important I promise

Take a second do me the favor and try…..

In August of 2014 something very wrong started happening with our then 6 year old daughter. This sweet, brilliant, beautiful, thoughtful, quiet child began having what looked like panic attacks. She insisted something was stuck in her throat. We took her to several doctors and were told her problem was psychological. So we spent thousands of dollars seeing psychologists and psychiatrists. Until one day I showed a video of her attacks to the psychologist she’d been seeing for seven months. His eyes clouded with the sad realization that he had not really heard me, had not understood how sick our girl is.  He sent us to a neurologist- suspecting a brain tumor.

We spent a few days in the hospital having MRI, EEG and Spinal Tap…all showed us very little to explain what was overtaking our otherwise healthy daughter. We left confused and deeply worried…there is no feeling like a group of doctors telling you they basically don’t know what is wrong with your child. You can feel them starting to manage you out…not answering your calls and emails because they have nothing more for you and they don’t have the balls to say it.

Two days later we were back in the hospital…. Greta was uncontrollable….fighting for her life with “nothing wrong.”  Screaming for hours at a time as if she was being murdered by a ghost. Terrified begging for us to help her. Really there just aren’t words to describe the horror, the terror the desperation.

She ran the halls of the hospital screaming, pulling her IV out terrified while unexperienced nurses just stood there looking at her, at me… and no doctor was in sight. Finally we, my husband and I, had to take control of her …yes in the hospital filled with “help.” The only offer? A powerful sedative. NO thanks.

Three days later we left again with no answers.

AND THEN A BREAKTHROUGHT….here is how it happened.

On Tuesdays I’ve been attending a Bible study centered around the book Nehemiah – the study is focused on asking God how he wants us to serve him, what he wants for our lives. This is a question I ask God frequently, but often wanting an affirmation for my own predetermined plan.  This Tuesday I was feeling particularly discouraged, Greta had a very difficult attack the day before at a gas station of all places that left me having to lock her in the car (for both of our safety) and me having to call Chris to the gas station from work to help me control her. Talk about humbling. I met Tuesday angry with God and really just asking, why and screaming enough!!…as I drove to the study.

This is where the amazing begins… I sit down and the study begins and the topic of “praying for your children” is introduced. The study leader warns us that we are going to go through trials with our children and that we have to go to war for them…war on our knees praying for them. At this point I’m still thinking ya ya, I’ve been praying for a year and I’m still right here with my suffering child. And then our leader reads John 9!!

As he passed by, he saw a man blind from birth. And his disciples asked him, Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

Jesus goes on to restore his sight. The entire purpose of his blindness was so others could know the power of Jesus!

As I’m now in full ugly cry the woman sitting next to me (and I need to add there are about 75 women in this study and I end up next to this woman at a table of 8) holds my hand and says she wants to talk to me after the study.  She tells me that she knows my story and wants to connect me to a friend of hers that has a child with a very similar story, and that her friend is a doctor. I’m very darkly cynical at this point, I can’t tell you how many Mom’s have tried to tell me that their child’s temper tantrum is that same as my child trying to kill me or herself. Screaming a scream that numbs your hearing for hours at a time! I did not want to call another dam Mother! But I did… thank the Holy Spirit.

I spent over an hour talking to the friend/doctor – and I felt as if I was hearing our story as she told hers. She understood, she’s lived what we are living.  She suggested that we be seen for an Autoimmune disease called PANDAS. I have often wondered if Greta has PANDAS, in fact I asked the doctors about it during the first few months of this illness. My new friend explained that PANDAS is still poorly understood in the Charlotte medical community (keep in mind she is a doctor herself) and that it took her son three years to be diagnosed. However, she was able to point us to the right doctors, helped me review the tests results we’ve received to date and suggest the tests we still need to have. She armed me with information it would have taken me a year to gather on my own.

Now, we have been diagionsed, seen again in D.C. by a team that handles PANDAS cases every day- includes infectious disease and otolaryngology and we have a plan.

This is where I NEED you to know that this is GOD’S work NOT mine!

I get emails, texts, Facebook messages and calls that (believe me they keep me going) but many of them give ME the credit. I’m a “tiger mama” I’m a “warrior mama.” But honestly I’m not.

I yell at my daughter in frustration as she spits at me an tries to bit me. I stare at her blankly as I face the second attack of the day- dreaming I’m somewhere else as she is screaming and fighting for her life.

I hate her in a way that is so strange for a Mother.

I yell at doctors who don’t understand and have no answers

I don’t brush my teeth for days

I send calls to voicemail when I think the caller is going to complain about some minimal shit going on in their “hard life.”

I tune out when you tell me your problems

I hate you when I lay in bed at night

I wallow in self-pity daily

I yell at my husband over stupid things that don’t matter just because I need a punching bag

I put my kids in front of the TV and lay in bed and cry

I’m NOT a warrior I’m not strong…I’m not humble either I’d tell you if I was…strong

The answers, the direction, the strength to fight….

THIS IS JESUS

This is what Jesus does, he guides you, he directs your path, he fulfills his promises, he makes streams in the desert, he holds you, he does not forsake you.

I’m gonna share our story because that is who God made me, he made me open and honest, but please consume this story with the full knowledge that everything good in this is from God.

And everything bad in this he will use for his glory. Not because God is selfish or cocky but because he wants you, he wants to know you and he’ll use us to make that happen.

Ready and willing- I stand!

Now, read with me what is true:

Proverbs 3:5-8

5Trust in the Lord with all your heart,
and do not lean on your own understanding.
6In all your ways acknowledge him,
and he will make straight your paths.
7Be not wise in your own eyes;
fear the Lord, and turn away from evil.
8It will be healing to your fleshb
and refreshmentc to your bones.

Isaiah 43:19

Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.

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