Happy 20th Birthday Olivia!

We all say it as our kids get older.....How can it be? 20 years have gone by for my baby girl and my heart feels heavy.

Oh, friends. I want to be positive. I want to use fluffy unicorn words to portray a fake, picture perfect response to such a monumental day. Can I just be real? Can I just be honest?

If nothing else, this....this being real......showing my human weakness is a big part of this faith journey I've been on.  In many respects, it parallels Olivia's current physical recovery efforts.

What the heck am I talking about?

I was just discussing this concept with a friend the other day. The concept is simple and hard in the same breath......as we recover....as we heal we have good days....but then we have bad days. As time goes on, soon our good days are equal to those bad days. Then, all of a sudden, there are more good days and the bad days aren't quite as bad as they were.

You get the picture.

Olivia and I are two peas in a pod. Those good days are multiplying, but the bad can overtake us in a moment.... sometimes for more than a moment.....kind of like the fierce storm that swept through our area in the last 24 hrs. Clouds moving in swiftly, lightning that appears to be coming through your windows and of course the gigantic "BOOM" of the delayed thunder as it wakes every living creature in the middle of the night. While laying in bed thinking, (let's be real....OVERthinking) the firey storm reminded me of one of my "go to" songs from a long time ago....."Praise You in The Storm " by Casting Crowns. Those heavenly lyrics...they kept me going when my bad days outnumbered the good. Here's a sampling:

I was sure by now, God you would have reached down
And wiped our tears away,
Stepped in and saved the day.
But once again, I say amen
That it's still raining
As the thunder rolls
I barely hear your whisper through the rain
"I'm with you"
And as your mercy falls
I raise my hands and praise
The God who gives and takes away.

Here's the good new about my journey thus far.....

As I think back, my bad days only turned good as I grabbed hold of God's word. In actuality, my "bad" days back then were really bad even though Olivia's health was better (she was eating by herself, walking and did not need a wheelchair). I hope I'm articulating this correctly. So, even though this "storm" in my life has intensified to a present day tsunami level, my bad days are a fraction of what they used to be and I give all that praise to the One who has led my heart down a path of redemption and freedom.

Redemption. One Oxford definition says that is is "the act of being saved by error".

Redemption and Freedom. Yes, freedom from the guilt and shame of my error.......blindly trusting a "belief" system, freedom from my self condemnation for such blatant ignorance of the choices I was making for my beautiful girl. My beautiful young lady.

That's how Good He is.

Here's what's crazy........my annual "what does God's word say about numbers bit".....she's 20 now. Biblically speaking the meaning of 20 symbolizes redemption, and/or a complete or perfect waiting period.

Can't make this stuff up.

Olivia can be redeemed. Her life can be saved from that error. Remember, I told you we are on a new path? So far...... so good. Like anything, we still have those bad days.....but the bad aren't as bad as they used to be. More on this later.

Happy Birthday Baby Girl. Here's to a new decade.....to restored Hope in the One who Redeems us from the wreckage.....who Restores us with True Wisdom and Truth. The One who has set us on a new path void of fear, ignorance and intimidation.

I feel I've reaped the benefit from "Praising Him In The Storm". On to a new skill.......Learning how to tell my heart to beat again. Teaching Olivia to allow hers to do the same.

"Tell Your Heart To Beat Again" Danny Gokey

"You're shattered - Like you've never been before
The life you knew - In a thousand pieces on the floor
And words fall short in times like these - When this world drives you to your knees
You think you're never gonna get back - To the you that used to be

Tell your heart to beat again - Close your eyes and breathe it in
Let the shadows fall away - Step into the light of grace
Yesterday's a closing door - You don't live there anymore
Say goodbye to where you've been - And tell your heart to beat again

Beginning --- Just let that word wash over you
It's alright now ----Love's healing hands have pulled you through
So get back up, take step one --- Leave the darkness, feel the sun
'Cause your story's far from over --- And your journey's just begun

xo

Back to School - 2018!!!!

I am so encouraged that Olivia is strong enough to go back to school!!! it was a busy summer rehabbing this beauty! You can read about it here:


http://www.restoringolivia.com/2018/08/rehabbing-and-rebuilding-me-myself.html


Thank you for all the powerful prayers for her recovery this summer - we felt your love. Even if we have a long way to go, I'm incredibly thankful for every "mini" step forward.

She definitely looks irritated here because I missed getting a picture this morning and tried to get one after school but the rain started pouring down!

xo

Rehabbing and Rebuilding - Me, Myself, & Olivia (And O's amazing PCA Gisell)

It's been a busy summer! Rehabbing and rebuilding my girl.

Although rehabbing Olivia's weak post-hospital body should be a priority, the "experts" see it differently. Olivia was discharged prematurely from the in-home physical therapy....... just... "because".  New guidelines and stricter ideals from higher up's deemed her ability to recover in their timeline impossible (especially with that ever so important diagnosis)....so, therefore, she was done in May.

You all know me be now.....you know I'm not the type to give up easily. I contacted outpatient facilities in hope to get her additional therapy.....even just one day a week.....I was successful, at the end of September.

Frustrating.

This, my friends, is the life of a handicapped individual, and their caregivers. Experts give up, but we believers don't. We are pushed outside ourselves.... beyond ourselves as we learn and research and become just about what these experts are......without the initials behind our names (I, unfortunately,   do not have money for that). We teach ourselves.  We read the science. We adapt and learn about nutrition, biology and chemistry in relation to the human body, especially a damaged one. We dive into therapies, both physical and developmental. We become an expert.....THE expert on our child....doctorate level expertise that sadly carries no weight or worth. More on worthlessness later.

This summer I became Olivia's physical therapist and it was quite the job! When the in-home therapy folks left, I was still relying on the Hoyer lift to get her up from any position. She hardly had the strength to lift her head, let alone balance herself in a sitting position or walk. Her left arm had just become a tad bit functional again (her left arm was injured in the hospital.....she was unable to move it. It literally hung to her side.)

It was overwhelming. Tasks took double the time to complete. It was exhausting to move her, dress her, feed her and clean her. She always looked at me so sad.....like she was thinking..."It's not worth it Momma. I'm not worth it." Those looks were always so heartbreaking for me. I know she's in there. I know she understands, she just can't tell me. Her body was so exhausted. Void of energy.  Each and every day, I whispered these 3 words....."You're worth it"......"please believe that you're worth it."

Last week a friend detailed an encounter she had with her specialist doctor. She experienced some side effects from a new medication that became debilitating and contacted the physician with concern. Her physician confirmed that it wasn't a side effect of the medication and that it was just a coincidence. It clearly wasn't a coincidence for my friend. She stopped the medication and the side effect went away, but even this did not convince the physician. My friend's opinion about her own observations of something negatively affecting her body was "worthless" to this expert.

Ugh - this bugs me. All I could do was think of my poor girl and how the many medications have been prescribed and doubled with terrible side effects that almost took her life, and the experts didn't even bat an eye. Her misery did not matter....especially because she could not tell them how bad her body hurt. How worthless do you think Olivia has felt throughout the years? No voice=No opinion. No opinion= No boundaries. No personal boundaries= worthlessness.

And that's where I come in. I'm her voice. I give her an opinion. I give her boundaries. She becomes worthy......of life. Of personal safety. Of respect and most importantly......dignity.

Just tonight while writing about Olivia's rehabbing, a different word kept popping into my head. Rahab. I remembered reading about Rahab briefly when I did a Joshua study but was intrigued to look into her story a bit more. No coincidences here.

Rahab was a prostitute who lived in Jericho, the first major city the Israelites would meet as they crossed over into the promise land. Her "calling"? To hide two Israelite spies who took refuge in her brothel as they stalked the city for intel information for Joshua. She heard the stories of their God. She knew what she was doing was dangerous, but she took the risk because she sensed that the God they trusted was worth trusting. She was worthless to her community, and let's just reach a bit to conclude that she felt a bit of worthlessness deep down with the choice of her profession. Because of her faith, she was willing to help others despite what could have been a great cost to herself.

Here's my point. God works through people like Rahab. Imperfect, rejected & worthless. Rahab rose above her life situation by trusting God and pulling through on an important assignment specifically assigned to her. Believing in His protection instead of groveling in selfishness and disbelief.

By faith Rahab the prostitute did not perish with those who were disobedient, because she had given a friendly welcome to the spies. Hebrews 11:31 ESV

Rehab.......Rahab. Rising above the naysayers. Rising above the experts and trusting the true Expert with each "assignment" tossed our way. Rahab's life was changed from this experience. I've been changed.....Olivia's is changing, even if it's slow.

It's the end of the summer and Olivia has made some great strides. She is eating better. She is sitting up on her own. She has started walking with support. Last Friday, our rented Hoyer lift was picked up and taken away. Each and every day I see that worthless label melt away......the sad face doesn't dominate her day as it once did. Her cute little smile and giggle have replaced the sadness. I think she's going to be ok.

Here's a video summarizing our summer.....this post.....with a message for all of us.

You're going to be ok.

xo

Recklessness?

Recklessness.

Kind of a crazy word to be bouncing around in my head lately don't you think?

Unfortunately, it's there for a reason I guess.

There are some who view my position on vaccines as reckless behavior. How on earth can I question.....and put into question what some call the most important medical discovery of modern medicine and infectious disease control history?

Believe me. Many people do not want to hear about it nor will they support it (or me) and they have zero qualms about tearing parents like me down with their actions or words.

Having a child with a vaccine injury redefines people's perception of you. Many are afraid to be associated with such a stance. Institutions constructed to supposedly help children with disabilities have and will shut any sort of vaccine injury conversation down.

Over the last 18 years I've been snuffed off by the best of them. School officials, medical professionals and even church leaders and their staff. To many, it's just not worth supporting (especially going public with) and/or agreeing with the truth of Olivia's suffering. Why? Because it is an extremely controversial subject. There is a boldness that is required to stand by someone like me. Many feel as though the risk of jeopardizing their social and/or financial position is just too high.....even if they believe me.

Although I've been pondering this label for awhile, I wasn't really sure the direction I would take it in my writing. I was torn with the message I would send by bringing up such a sensitive topic. Sensitive for all parties involved. I would emphasize that although initially I was offended when people shut me down during conversations (which was completely evident by the complete disengagement when the subject came up followed by looking over or past me while I explained what really happened to my baby girl) it doesn't anymore. Even if the eye contact doesn't reengage with some folks, taking offense is not worth the swirl of burden and spiritual consequences that cascade when someones opinions collide negatively with your own.

Olivia and I have had a long weekend together. The rest of our house went camping, hiking and boating. Unavailable staffing and Olivia's inability to participate in such a weekend kept us both home while the rest of our family enjoyed quality time and memory making. The plus side of these lonely 96 hours was a reduction in cooking and the increase in music playing.......as loud as I wanted. Eeeek!! What a bonus.

One listen to this song and I immediately knew how to write about this subject. Coincidentally, (or not coincidentally) the name of the song is "Reckless Love"!!

I agree somewhat with my critics......I may be a tad bit reckless....the main difference is that I'm not reckless, rather my love for my injured daughter is. Who better to explain this important difference better than the author of this song, Cory Asbury. Here's an excerpt from the story behind the song:

"So, when I use the phrase the "Reckless Love" of God. we are not saying that God, Himself, is Reckless. He is not crazy. We are, however, saying that the way He loves is in many regards quite so.

He is utterly unconcerned with the consequences of His actions with  regard to his own safety, comfort and well being. His love is not crafty, or slick... its not cunning or shrewd. In fact, all things considered, it is quite childlike, and might I even suggest sometimes down right ridiculous.

His love bankrupted heaven for you...for me. His love doesn't consider Himself first.  It isn't selfish or self-serving. He doesn't wonder what He will gain or lose by putting Himself on the line. He simply puts Himself out there on the off chance that you and I would look back to Him and give Him that love in return. His love leaves the 99 to find the 1 Every. Single. Time and to many practical adults that's a foolish concept.

But what if he loses the 99 in finding the 1, right?  What if? Finding that one lost sheep is and will always be supremely important. His love isn't cautious.  It's a love that sent His own Son to die a gruesome death on a cross.

There is no plan B with the love of God. He gives His heart so completely..... so preposterously that if refused we would think it to be irreparably broken. Yet, He gives himself away again and again and again and again.....time and time again. Make no mistake, our sins do pain His heart and 70 X 7 is a lot of times to get your heart broken and yet He opens up and allows us back in every single time.

His love saw you when you hated him. and all logic said they'll reject me, He said, "Naw,
I don't care what it cost me. I lay my life on the line as long as I get their hearts". Cory Asbury

Ohhhhh dear friends. No words could ever be Truer for the mother of a vaccine injured child. She is "utterly unconcerned with the consequences of her actions with regard to her own safety, comfort and well being. Her love is pure, not "crafty, slick, cunning or shrewd...it's quite innocent and childlike".  Some think she is ridiculous.....even perhaps 'Munchausen-ish".

She bankrupts her heart and pocketbook.....doing anything to bring relief and bring her child back. Her love "doesn't consider herself first. She isn't selfish or self serving. She doesn't wonder what she will gain or lose by putting herself out there". She "puts herself out there on the off chance that her precious child will look back at her and give her that love in return." Painfully priceless.

Her love "leaves the 99 to find the one every time, and to many practical adults it doesn't make sense." She may have to leave old friendships that don't allow for the support she needs to focus on her "lost" child. Some critics talk about the lost child's siblings and the "neglect" those children experience because of the mother's obsession. Really?

Oh, yes, we are warned.....your other child will develop issues, you are choosing one over the other, or my favorite...think of the other children in the family...the neglect. Does this pan out? Why is it that most children who have a seriously ill brother or sister become the most amazing people? No entitlement issues, selfless, caring individuals who actually walk out the Truth Jesus teaches first and foremost....love. They see the suffering, they feel the difference in their family...they learn and develop coping skills...unlike many of today's young adults on college campuses.

The sibling of a developmentally challenged child get to see the love of Jesus at work. They see and become the "hands and feet" of Jesus and become stronger from it.....not a victim of it. These are the kids that grow up knowing how to make intelligent, informed choices for themselves and their families. They learn that a belief system can be challenged simply through gaining knowledge and doing the research themselves. They end up choosing an informed decision. They become sheep of a different Shepard.....the true shepherd who would not sacrifice a child or two or 100 to develop unsafe vaccines that make big companies billions of dollars.

There is no plan B for the mother of a vaccine injured child. She "gives her heart so completely, so preposterously." Hers is the heart that's "irreparably broken", yet she gives herself away again and again and again. She takes on the rhetoric from her family and friends, never backing down from the truth they just don't want to hear.

The original context of this parable defines the "lost as a sinner who has lost their way . The righteous, proud individual who's sin has blinded him to God's love. I found a different definition of "lost" that fits with our current situation --

"Denoting something that has been taken away or cannot be recovered" - Merriam-Webster

Olivia has been lost. She's been taken away, and with God's leading she can be recovered. Verse 5 goes on to say:

"And when he finds it, he joyfully puts it on his shoulders and goes home. Then he calls his friends and neighbors together and says, ‘Rejoice with me; I have found my lost sheep.'"(Luke 15:5-7)

I'm finding my lost sheep. Slowly, but surely. A mother's "Reckless Love" is merely an imitation of Jesus. Isn't that what we are called to aspire to? Remember that saying....."What Would Jesus Do"? He doesn't give up. On you, me or Olivia.

Out here, in the wilderness looking for my lost sheep. These words run chills down my spine...

There's no shadow You won't light up, Mountain You won't climb up, Coming after me

There's no wall You won't kick down, Lie You won't tear down, Coming after me

Go ahead. Be reckless for someone who's lost. Reckless Love.

xo


p.s. This is a powerful video of God's "Reckless Love". As a mother to a couple young adults and a pre-teen, the video provides a visual of God's behind-the-scenes protection as our children make choices in life that seem to separate them from God. He'll leave the 99 each and every time for the 1.

Two steps forward.........one step back👣

Hey there.

Maybe I'm wrong, but I think by this time my readers know something is up when I haven't posted in a while.  We've hit a low spot in our journey...... by "we" I mean me. Olivia is slowly moving along....regaining some of what she lost in the hospital but unfortunately this time around it's been an extremely slow recovery.

So? What's up with me you might ask?

The weakness is real, and disastrously powerful.

What do I mean by that?

After making the videos of Olivia, my heart felt exponentially wounded. Reliving her vibrant personality before the injury conjured up feelings of anger, which clearly led my mind to the latest hospitalization....my weakness screamed,,,"Really Lord, we were on that new path you set us on. Why on earth was this further victimization allowed?" (sigh)

Soon after, I felt myself taking a break. Taking a break of my morning devotional as I watched my beloved "God" books collect just a wee bit of dust on the bookcase beside the makeshift bed in our office. "It's summer", my mind reasoned. "You've had the worst six months of your life", it went on and on and on. In my defense,  I was also gearing up for a 4 day "vacation" to the Dell's for my little dancer's nationals and soon I kind of fell off God's radar.

Over the last 18 years of this sucky journey, I was desperate for some peace in regard to my beautiful girl losing her voice and soul as seizures took hold and ravaged her mind and body. I thankfully found that peace in God's word. Every day was spent reading or learning scripture as I grew in my understanding of God's character. This method was my "pill" taken every morning which enabled me to move through my day and fight for the one I lost.

Upon my return from the Dells, I realized that all I had worked up to was gone. As I walked through the door, I was no longer looking through eyes of faith, what I was now seeing was the horrible, impossible and depressing condition of my beautiful girl. I looked at her as she lay on the gym mat filling our scantly furnished living room. The once faith filled eyes that looked past circumstances now focused on her inability to get herself to a seated position which is clearly a prerequisite to standing and walking. At once, I was on the mat pulling her legs down from her favored "fetal position" reminding her that she's not a baby. Emotions that I haven't felt for, well, 18 years flooded my spirit and the "refreshness" of my time away vanished in an instant.

I was desperate. Once again.

I was desperate to get that peace back.......like yesterday.

That night, while laying next to her as she began drifting off to sleep, something unexpected happened. I had just settled in reading one of my "dusty" God books when I felt her right hand feel around on the bed. All of a sudden she grabbed my left hand and clasped it tight...intertwining her fingers through mine as if she were saying....."I'm holding on to you Momma....please don't give up on me". In that instant, it dawned on me......that is what I was doing every morning when I sat down to read God's word. Figuratively, I was searching for his hand in the dark, feeling around for the grasp I had grown to know so well, all while whispering "I'm holding on to you Lord.....please don't give up on me."

Dependence on Him is the only cure to my debilitating weakness.

After this experience, I was intrigued to learn more about this stint of apathy and weakness. I was reminded of the many mindset strongholds I've developed throughout the years, including my mode of operation when it comes to the race that has been set before me. Weariness can and has overtaken me. Honestly, I thought I was past this.

Then I was reminded of 2 Corinthians 12:9, and this verse came alive in my life and in this situation:

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I now know that the trigger for my spiral has a root, and that root was an inability to really grasp her condition coming out of the hospital. Not only her regression but the intense anger I felt towards the staff at the hospital. I no longer harbor any of this anger towards them, but inadvertently turned it on myself. How could I let this happen to her? That, there was giving into my weakness and losing the power to overcome it.

Here's the key for me. God's GRACE is empowerment. I don't deserve it, it's not earned, but an unmerited gift. I turned away from his grace when I stopped reading His word. He reminded me that His power within me is greatest when I face situations that are beyond my ability to handle.

Yes, yes, yes. I know.....God is in control. I receive this message a lot from people. He is in control but for some reason He wants me to be involved in this situation. Oh, how I would love to kick back and do nothing. I've come far enough down this road to realize that for some reason He's working this thing out through me not for me.

Tenth Avenue North has the perfect song to describe this phenomenon - giving God the control knowing He wants you to be a part of His plan❤️

Here I am, All my intentions, All my obsessions
I want to lay them all down
In Your hands, Only Your love is vital
Though I'm not entitled, Still You call me Your child
God You don't need me, But somehow You want me
Oh, how You love me, Somehow that frees me
To take my hands off of my life, And the way it should go

I've had plans, Shattered and broken,
Things I have hoped in, Fall through my hands
You have plans, To redeem and restore me
You're behind and before me
Oh, help me believe (Control, Tenth Avenue North)

With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 2 Thessalonians 1:11


xo

Lovely Video

A video I've been working on.

xo


Kelly

Mending....

Thank you so much for the prayers of support and healing for Olivia while she was hospitalized and while we have been at home.

So many things have come to mind over the last eight weeks that I'd like to share. Upon discharge, I was given an incredibly dire prognosis for Olivia's life. This prognosis was detailed in the "Assumptions Can Be Deceiving" post. While in the hospital, she acquired 4 NEW serious conditions:

1. High Fevers. One doctor said "It would be a miracle if her fevers went away.
2. Extreme hypertonia. Would never walk again.
3. Her left arm was floppy and unusable. 
4. Extreme weakness. No longer able to hold her head up and she could not swallow, so, therefore, could not eat or drink.

I can say one thing......it's been a long eight weeks....but Olivia has made a lot of progress!

First of all, she has not had a fever since she's been home! One miracle down!! The extreme tightness and hypertonia are diminishing every day and she has started using her left arm again. Miracles #'s 2 and 3! The weakness is gradually subsiding. She is able to hold her head up again with returned trunk strength and is completely off the tube feeding and eating/drinking once again. Praise God!

I really wanted to share some of the pictures and video's I've collected over the last 16 weeks  - yes 16 weeks!!!! Looking back on where we've come from, I thought it would be neat to combine them with a song that God has put on my heart since arriving home.

Actually, it just occurred to me why God impressed this video on my heart and it starts with one of my favorite bible verses for Olivia. Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb," and this incredible song by Matthew West "Mended".

What I realized is that God is the one who "Knits" (Premier Knitter) us together, so, therefore, he must be the Mender. With Olivia, the temporary patches to her fragile and damaged "inmost being", supplied by drugs and other medical interventions have too often worn thin.......with their ineffectiveness and consequential damage. As with this last hospitalization, she ends up worse off. Take a look at how much the drugs ravaged her hair:

See that inch and a half section closest to her scalp. That's her real hair color. That is healthy, undamaged hair pushing out the darkened, broken and thin strands left remaining on her head. She lost so much hair since being home, you would have sworn she had been on cancer drugs. It came out in fist fulls.

If you are familiar with my writing, I often plead for a "Do Over" with Olivia's life, especially the decisions I have made for her. In a sense, I really feel like this is the beginning of that "Do Over" phase. I mean, seriously, it was like I brought home a 19 year old newborn. Her limbs were contracted in a ball, she could not use her arms for anything purposeful, she could not hold her head up and consequently lost a bunch of hair at the back of her head. As she started getting better her coo's and giggles reminded me of that gorgeous little baby I brought home 19 1/2 years ago. Especially since she now has some missing teeth. (ugh) Ok, now I'm getting weepy.

What's important is that the mending has begun and I feel like I have a better understanding of how the vaccines tore a hole in the Perfection she was given. These holes and patches can and will heal because guess what? He can push out the darkness.....the brokenness.....and strengthen the thin strands of faith we mothers of vaccine damaged children cultivate with our experiences. 

Here's to the beginning of this new chapter!❤️

We would love continued prayers for her ability to sit up/get up on her own from a laying/seated position and to be able to walk again and her overall health and vitality at this stage of her restoration.

xo