I prefer Answers to my Prayers

I know. Sounds crazy - right? I prefer answers to my unanswered prayers. We all have them. Some big. Some small(er). We're all looking for the answer we desire. The goodness of restored joy....restored vitality of life. We can't help ourselves, our hearts ache to believe in such things.

I've heard from a couple of my readers in the last couple weeks. They are worried about me after reading my last post, "Even If You Don't".  Have I given up? Have I lost my faith? Why on earth would I write about the other side of the coin? That awful "tail-side" face of doubt.

Unfortunately, I am so ridiculously human that this journey sometimes gets the best of me. I felt led to share my weakness. There are so many reasons why Bart Millard's testimony was comforting to me. Hearing him speak about his son's chronic medical issues makes me feel less alone. I love his honesty about his struggles and I thought you would too.

Funny thing is......I've given up so many times on this crazy idea of mine.....that Olivia would be restored.  But inevitably, I'm always drawn back to Hope again. It's like I get lassoed by an invisible rope that holds me tight and won't let me go. The idea that I could simply wiggle out of the loop escapes me as I allow the tightening to commence. The gentle tugging from despair's darkness into the light of day is a rescue that never gets old. Deep down I know I don't want to break free, unbelief is lonely and can present itself in so many ugly ways. Daylight feels safer.

It never fails. Each and every time I'm drawn in close, I receive some sort of revelation to my situation. In this particular instance, I came across a sermon from Bill Johnson at Bethel Church in Redding California entitled "Answer's Matter", and it reignited my hope for Olivia.

Answer's do matter.

This sermon provided me with so many nuggets of truth. Bill explains that "prayers without answers are pointless and that complacency and ignorance tolerate unanswered prayers. He went on to say that we were not designed for unanswered prayers.....that’s why there is no instruction for it in the Bible.  There can be a delay, there can be room for a process, but we were not designed to coexist with unfulfilled prayers. We are made to co-labor with God to help release His will and purposes for our lives on this earth."

Say what? Just what I needed to hear.

Just when I tried to give up for the 100th time, I immediately feel the tugging of the rope from these life-giving words.  So much to unpack from the first five minutes. Complacency. Ignorance. Co-labor.

Merriam Webster defines complacency as "marked by self-satisfaction especially when accompanied by unawareness of actual dangers or deficiencies".  Is that my problem? As I dove in and studied related words other negative synonyms popped up, like conceitedness, ego, egotism, pride, pridefulness, self-admiration, self-assumption, self-conceit, self-glory, self-importance, self-love, self-opinion, self-satisfaction, smugness, vainness, vanity. And here I thought it just meant being lazy and unmotivated. Can this be true of me?

Complacency can and does become a heart thing when you are alone in a fight for such a long period of time. You begin to rely on you. After several years, most family and friends moved on with their lives while my heart remained the same.....broken. I couldn't shake my one objective....to save Olivia. And herein lies what could be my complacency. Pride, self-opinion and ego trump the real Savior. What's equally enlightening is that I can have this misplaced pride while experiencing the feelings which are the exact opposite.......words like self-loathing, self-doubt, timidness, passivity and shame.  I didn't protect her. No wonder I feel like my prayers for wisdom go unheard. It's like these words....these feelings are a pack of wolves chasing me here, then there.....always towards the darkness, not the light. Words like should've and could've dominate the night.

Ignorance, on the other hand, shouldn't be my problem. From day one of this nightmare, I've taken her to every "expert" physician I hear about within driving distance. Aren't we taught that experts lack ignorance? It's kind of why they are experts - right? So many hours waiting to see each and every one of them. They all have given me zilch. How is it that she can become so incredibly weak, to the point of being hospitalized, and all the tests come back normal? Is she a mystery or could their tests be wrong? Could it be that my ignorance is that I've relied on ignorance for 17 years? Even though God is known as The Great Physician, my reliance has always been on the physician with "skin on".  I've been told over and over that God works through doctors. Not always.  I guess I forgot the full meaning of Matthew 6:33 But seek first the kingdom of God and His righteousness, and all these things shall be added to you.

This sermon reminded me of truth.

Every. Single. Time. Jesus ministered to someone, he brought deliverance.

I was reminded of Matthew 4:24 "News about Him spread all over Syria, and people brought to Him all who were ill with various diseases, those suffering acute pain, the demon-possessed, those having seizures, and the paralyzed--and He healed them."

But what about the theology of suffering? Some say we tolerate sickness because God uses it to build character in us. Do you believe that? Bill Johnson doesn't. He refuses to have a "theology for something that shouldn’t exist, because to him it's a direct violation of what Jesus taught and modeled. Jesus suffered to get rid of all disease. He goes on to say that "we all have unanswered prayers, so the challenge is to navigate through the process without accusing God or blaming ourselves. Mournful prayers are subtle ways of accusing God. It’s like you are saying “I have more compassion than you do for this problem.”

The disciples became experts in Jesus's healing ministry. They were walking alongside Him, healing people left and right. Jesus even says, "I saw Satan fall like lightning from Heaven", in Luke 10:17-20.

There is just one instance they were not to bring healing, that of the epileptic boy. Does this verse sound familiar to those who have followed my journey this far? I have written about this Bible story so many times. I've even gone as far as to say that Olivia and I are the Mother/Daughter version of this Father/Son journey. You can read my older posts on this scripture here, here, here & here. Needless to say, I've gotten some mileage out of meditating on this story.

To refresh your memory, the story is about a father, whose son has been having seizures since childhood. He has spent years trying to help his son. He hears about the disciples and takes him to them, but they are unable to heal him. The disciples do not understand why they are not able to free the child, and therefore brings him straight to Jesus. He chastises the father and disciples about their lack of faith and delivers the child. Read the full story here  (Mark 9:17-29).

Sound familiar? 

Olivia's doctors remind me of the disciple's and their efforts to free the child. Doctors are accustomed to helping people as did the disciples. For Olivia, they never had an explanation on hand.  For years and years, the dogma recited was.......you guessed it........it's genetic (which recent extensive genetic testing obliterated).  It's Olivia's fault and in 20-40 years science will have an explanation. 

As Bill explains, the disciple's reaction to the mystery of their failure is the exact opposite. They were unsatisfied with the result. They had to know why they were not successful, so they went to Jesus. What they didn’t do was create a theology around what didn’t work, as to say, this is ok."  

That darn pride exists everywhere......even in the conventional medical system, where complacency runs rampant for the patient who doesn't respond appropriately.

I've made the rounds to all the experts in every field, including the religious arena. Most of the spiritual "experts" (i.e. Pastors) I've met with were extremely thoughtful and caring people, but none were ever bold enough to stick it out with me. Friends continue to support me as much as they can, although 17 years is a long time to believe for something. I was struck by Bill's candidness when it comes to supporting people with unanswered prayers. He says, "In our attempts to comfort people in loss, we tend to create untrue places of safety, untrue tenants of faith, and untrue doctrines that make unanswered prayers ok.  I can’t look for answers that keep me comfortable in the middle of a mystery when it’s supposed to aggravate me to a breakthrough. Some things are not supposed to be comforting some things are supposed to be provoking. Some things are just simply to summoned me out of what would be a complacency because complacency and/or ignorance tolerates unanswered prayers."

And so I continue. Hoping I will soon have the chance to co-labor with Him for her. While mulling over the ideas for this post I heard the song Hard Love by Needtobreathe and Lauren Daigle on the radio. That title seems so fitting. This love has not been easy....by far the hardest thing in my life. As I leaned into the lyrics, I realized so much of this song details my path:

Trading punches with the heart of darkness

Going to blows with your fear incarnate

Never gone until it's stripped away

A part of you has gotta die today

Hold on tight a little longer

What don't kill ya, makes ya stronger

Get back up, 'cause it's a hard love

You can't change without a fallout

It's gon' hurt, but don't you slow down

Get back up, 'cause it's a hard love

When the wolves come and hunt me down

I will face them all and stand my ground

'Cause there's a fire burnin' in me

They will see my strength in this Love I found

Even if the night is long, I'm reminded that He's in the waiting. 

I am a "child of the day, of the light. I do not belong to the night or to the darkness." 1 Thessalonians 5:5 

xo 

Happy Birthday Olivia❤️❤️

Happy 19th Birthday to this beautiful soul.❤️

I. Will. Never. Give. Up. On. Her!

No to complacency, yes to perseverance.

#gettingclosereveryday #shesinthere 💞💞

Even if You don't

What a summer....for some reason a tougher one then usual. I broke my ankle in May, Olivia was hospitalized for two weeks in July.  Two biggies....followed by several other incidental's that literally sucked each grain of "time sand" down the hole at an alarming rate. It's gone.

I know. I told you in May that being confined to a chair with my non-weight bearing cast could be a good thing. Theoretically, I could sit back and write.....to update you on Olivia and the steps I was taking with her restoration. (Sigh)

What actually happened is far from the original plan. 

You see.......my broken heart got a whiff of something my brain has known for a long while.....Olivia would have graduated from high school this year. Right now, she should be testing the waters of independence in a dorm room in a city not too far away. This was a milestone that took more out of me than I ever imagined.

Reliving it all.

All those years of trying this drug or that one, this alternative treatment or that one, listening to this expert or that one. Waiting for important new appointments, definitive test results, diving into studies and articles with the hopes of finding a clue to what the heck stole my beautiful girl's soul ---  it all caught up with me. All at once. It was inevitable. 

Inspirational writing has always been my goal. You know......God is good - when? - ALL the time. But the last three months, I've been in a slump, unable to lift my hands. I've fallen in this deep hole that is far far away from inspiration and fairytale like. My mind has wandered and became fixated on images like this one:

Images of Olivia before her health took a serious dive, before there was a wheelchair in every picture. When she was free to walk (even run) around the house independently. She was about 8 here.

Caring for a chronically ill child or loved one can literally suck the life out of you. I'm just being real. We probably have more bad days but most say they would have it no other way. I think the term "Warrior Mom" was birthed in witness to this unconditional love and dedication  - don't you?

The bad days though. We all have them - just on varying degrees. Just yesterday I heard a "newer" Christian song on the radio and the beautiful words were just what I needed to hear.  I was curious if there was a story behind this amazing song and indeed there was. Bart Milliard, the lead singer of MercyMe, has a 15 year old son with Type 1 Diabetes. His five minute testimony is available right here (in blue)  MercyMe "Even If" Testimony. 

I can identify with so many of his words. The good and bad days, spending mere moments in selfish denial, when reality yanks you back to what's always waiting for you, the illness that won't go away. That darn "chronic" thing. I know there are so many people like me, people who have dived into the Bible and the healing scriptures. These are the people that know God can heal them, but for some reason He hasn't. I love that this song includes lyrics based on the "Fiery Furnace" scripture in Daniel 3:24-26. 

But, this. I have to quote him here - because in here lies some truth for the person struggling with an unanswered prayer. 

"There are times when it doesn’t feel ok and I just want want to feel like  Shadrach, Meshach and Abed-nego and have the courage to stand in front of the fiery furnace and say 'I know that God can deliver us but EVEN IF he does not I’m still not going to surrender, I’m not going to bow because He’s worth it. Because deep down when there are times that I forget who I am, luckily He never forgets me. And there are times when I want to give up, but the bottom line is that the only way I can get up and go through this is because of what Christ has already done. No circumstance will change who I am in Christ. It’ll try and sometimes it feels like its going to win. Regardless of what we go through, He’s bigger. We have to believe that with all of our hearts, otherwise, what are we doing?" 

Yes, what am I doing? Living in the "what should have beens" has not furthered my quest for Olivia. Not one Iota. But I couldn't help myself. I'm human.

If you take the time to listen to his testimony you feel his heartache over what he has perceived as his "failure" when it comes to his son.

Hello......((hand raised high)).

If you've been following my blog for a while, you've read my own struggles with feeling like a failure. As time goes on, I feel as though I'm not the only one with these feelings. Each and every time I take Olivia to her doctor's appointments, I think they feel it. I remember listening to a podcast once where a physician talked at length about the waiting room filled with the patients he hadn't been able to help, i.e. his "failures".

Feeling like a failure is universal and is the reason why this song has over 14 million views. At the end of the day, we all know the meaning of his lyrics. He talks about winning some, and how it feels to lose some. That it's easy to sing when there's nothing to bring us down - but to then be held up to the flame - what will you say then? To hear that it only takes a little faith to move a mountain, acquire that faith and still have God choose to leave those mountains unmoved. To learn and reinforce the notion that at the end of the day, with all things considered, all feelings aside, that our hope is in Him alone. It has to be. And just like that, being a failure is no longer an issue.

So, where does this leave Olivia? In some ways she has remained in the same old rut - really good days followed by an illness which leads to several bad days.  Old news. 

But there is some new news ---- this year she will be a "Super" Senior at her same old school. A quick google search on the definition of super supplied me with some amazing visions for this upcoming year. 

I'm praying for an excellent, superb, superlative, first-class, outstanding, marvelous, magnificent, wonderful, splendid, glorious; fantastic, fabulous, terrific, ace, divine, killer; smashing, brilliant year. Let's lean into that one, shall we?

In many ways, the last three months have not been wasted. I've spent many hours pouring over past notes and testing performed on Olivia over the last several years and will be doing new testing involving that new direction I was considering several months ago. Hospitalizations have a way of derailing any gains she had made earlier in the summer. Interesting to note --- this scripture that keeps popping up in my studies and seems to be more relevant to our current situation than anything appearing as "logical":

Isaiah 42:16 

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them;
I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do;  I will not forsake them.

Oh, all my fellow warriors (which I know there are many). You have to be a warrior to remain strong in the fiery flame of chronic illness, especially the "rare" ones. Only a warrior can deal with the onslaught of heavy, deep emotions and uncertainty of unresolved, scary circumstances that come with a damaged body and the symptoms you are told are "unheard' of. For me, this song reaffirms my belief that the hope instilled in us is the true power. It begins with Hope and He transforms it into the faith that can eventually move the mountains in our lives - even if those mountains were placed there by someone else (which is a whole separate subject).

I leave you with this beautiful rendition of It is Well With My Soul by Audrey Assad. This incredible hymn was written by Horatio G. Spafford in 1873 as he sailed over the ship wreckage that took the lives of his four young daughters. The "Even If" song by MercyMe references this famous line.

xo

Freedom - what's your definition of it?

Happy Independence Day 2017!  Freedom.........isn't that what we all want? What does freedom mean to you? The definition means different things to different people.

Olivia needs a special kind of freedom, as do I. I think we both are looking for freedom from her chronic illness, from scary seizures, from suffering. Freedom from the hammering disappointment of lost dreams...freedom from dependence on drugs that never work.......freedom from whatever binds us.

For Olivia, this picture represents the beginning of her future:

It's her new gait trainer and it was finally delivered last Friday. It's kind of like a baby walker for an adult. Olivia lost her balance and ability to walk several years ago.  She is slowly getting better and really needs the freedom to walk without support and build her weak muscles back up.

I know I  promised to update more. Especially after I did this:

Broken ankle. Forced R&R. Feet up - time to write, but I couldn't. 

I was crabby. I was negative. Who wants to read that?

So far she's been the same. A couple good days and weeks and then a setback. But today....freedom day.....we are here:

Fighting for her freedom. Remember.....someone fought hard for the freedom we take for granted. I will do my damnedest to fight for hers. Why do I do it? For those who don't understand please consider this quote by Theodore Roosevelt.


It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

I dare greatly for my girl.

Enjoy the fireworks!

xo

Wisdom seeking

Hi there :)

As I thought about what I was going to write to you tonight, the image of a "cloud, the size of a man's fist" came to mind. Immediately, I thought of 1 Kings 18:22:

"The seventh time the servant reported, “A cloud as small as a man’s hand is rising from the sea.” So Elijah said, “Go and tell Ahab, ‘Hitch up your chariot and go down before the rain stops you.'"

Remember that story? It feels incredibly personal to me in this season of my journey. Elijah, the mighty prophet of God, doing what he does best - predicting and proclaiming the power of God in the midst of waiting for a sign.

Yes, the drought was coming to an end, he knew it.  On the seventh visual attempt, the servant saw "the cloud as small as a man's hand". For him, it was rain; for me, it was wisdom. My fervent prayers for wisdom to help Olivia began several months ago. At first, it was a snippet, here, then there, but soon it became a billowing cloud that took my breath away. Making the changes necessary seemed to move in slow motion, like a slow-moving storm with fiery lightning and loud claps of thunder.  Have you ever felt like you have wisdom on a situation, but struggle to move forward in that wisdom? Does that make sense?

What interests me about this particular scripture is that it happened the "seventh" time the servant looked outward for any sign. Have you ever wondered what the scriptural meaning or symbolism of certain numbers are? For instance, seven is the number of completeness and perfection -- three is the trinity of the persons of the Godhead, five symbolizes grace, eight being a new beginning....etc etc. Where am I going with this, you ask? Well, every year I would search out the meaning for the corresponding year of my sentence to Olivia's suffering. Each year would come, and my reality seemed to be the opposite of that year's meaning. Year twelve, in my definition, was the beginning of the fall; thirteen I was cast in a shadow of confusion and chaos. Fourteen, fifteen and sixteen were represented by deep division and hopelessness.

By year sixteen I knew I had to get the fear under control. Why did I wait so long? God's Word says "love cast out all fear". Love. To love is easy......right? To love a child who suffers intensifies the meaning of love....and fear. It's heartbreaking but it is a wise teacher. For me, fear has been a big one. 2 Timothy 1:7 says that God did not give us a "spirit of fear". Intellectually I understand this verse, but applying it and keeping fear out of my heart was another story. Seizures are scary. Uncontrolled seizures instill a fear like no other. Who likes something that is uncontrollable? They are ruthless, they are relentless and they do not play by the rules. They are thieves. They mock in their ability to control. They destroy everyday moments and seek to prove their vigilance and dominance. Even if I knew intellectually that the "spirit of fear" I was feeling daily was not from God, I was defenseless in eradicating it from my thought process. I tried so hard to operate without fear but I always lost my way. Sure, scripture counsels to take your eyes off your circumstances; but seizures demand your undivided attention.

Fear distorts and does it's best to define. Oh, if I could only have a nickel for every piece of "well meaning" advice I have been given along the way (as my heart was gripped by fear) I would be a rich woman.  A couple of my favorites have been, "God has a plan for Olivia's life"(i.e. whatcha worried about), or "Well, you get what you get.", or "At least you have her". My humility remains quiet, as my spirit begs to scream.  I realize that their logical comments lack the depth of experience...I know. I get it.  Intellectually, we can say a number of logical truths that are quickly dispelled once it's your heart on the testing train. Logic, in many cases, is the absence of personal fear, but can accompany pride.

Lisa Bevere has an interesting way of describing fear, as she replaces the word "love" in the beautiful verbiage of I Corinthians 13:4-8:

Fear is impatient, and unkind, while envies and boasts, it is arrogant and rude. Fear insists on its own way, it is irritable and resentful, rejoices at wrong doing rather than in truth. Fear bears nothing, believes nothing, hopes nothing endures nothing. Fear will end.

God has been incredibly patient with my struggle with fear....even in Olivia's seasons of daily seizures. She continues to have her good weeks and bad. Learning more about "love" has dominated my study. To love when it's hard. A complete study on love has to include the lesson on vulnerability, as C.S. Lewis so eloquently describes:

To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
― C.S. Lewis, The Four Loves

In reality, my vulnerability does not stop with Olivia. I am also sharing my vulnerability to you, my readers as I choose to walk out this journey with you. I am vulnerable in disclosing how it is I keep on believing for a healing that to many seems impossible. I also feel vulnerable to God's leading.

For instance, after the full Exome genetic testing results came back completely normal, the geneticist referred me to several doctors at Mayo. Excited for the new doors God was opening, I recently spent 5 days traveling back and forth to Rochester to meet with the best and the brightest. I thought there would be answers to some of the "pieces to her puzzle" I felt were revealed in that rain cloud of wisdom. As I look back on the blur of all those appointments, I see the systematic slamming of each one of those doors. All four specialists rebuked any possibility of understanding Olivia's "illness" and their inability to provide any treatment for her "rare" disorder. Although one of the doctors ran some blood work to confirm or deny an existence of autoimmune possibilities ( this blood work returned completely normal), the rest simply looked at her (with no examination) and confirmed there was nothing they could do. My struggle with this whole charade moves past fishtailing down the middle of southbound Highway 52 on some invisible black ice. I question why on earth the doors were open in the first place. My vulnerability to love,  and Trust in that Love gets weak and seeks to question His leading.  The weaker I get, I begin to wonder if there was a carrot on a line at the end of a very long stick. Uncle already.

Now that is vulnerable.

So. The only thing I can do is to go back to that familiar word and command that has kept me going for 17 years. Trust. Its the only thing I can do. Trust in His Love.

"Only those who love are fearless. Love seeks to restore....So we must Love fearlessly" Lisa Bevere.

Remember Elijah from the beginning of this writing? He was a prophet and still struggled with his feelings and emotions. He felt fear and loneliness. God, however,  reminded him that He has work for him to do even while feeling like a failure. One commentator explained a lesson from Elijah's life. "We are never closer to defeat than in our moments of greatest victory".

Satan instills the fear. Satan is the thief and our enemy. Yes, we do "Get what we get"; but, sometimes what we get gets stolen from us.

We are now in year 17. What do you think 17 represents?

Overcoming the enemy and complete victory.

I'll take that.

xo

Happy 2017!! Hoping to get her Joy Back ❤️❤️

Looking forward to a New Year!