Transformed and Free

People usually find me because they are searching for answers about Williams Syndrome or because they are battling Lyme Disease.

In many ways, good and bad, we’ve been the poster children for both.

I’ve learned so much about our bodies through all of these medical issues our family has experienced and I am thankful because all of this has prepared me for Lillirose, Our Rainbow Baby.

 

From birth I knew that….

💝 Lillirose is differently-abled.

I also knew that…

💝 She has genetic differences, specifically COMT & MTHFR.

COMT

and

MTHFR

The estimate is that 40% of the population have one of these genetic issues. Lillirose won the genetic lottery and got both. These genetic differences have wreaked havoc in her body from day one.

One very important truth about both of these genetic differences is that her body CAN NOT metabolize or utilize pharmaceutical medications. She would only experience the “rare” side effects of medications. The clouds were looming, another storm was brewing…and engulfing Lillirose.

Her storms looked like this…

Lillirose WAS…

▪️ always seeking sensory input

Example: She used to bang her head, her legs on the side of her crib, bite at her arms, bite us, bite me throughout each time she nursed, she gnawed huge splinters of woods off of her crib, I had to buy fabric covers to protect her.

▪️ Her speech development was delayed. When it did develop she would only speak to her immediate family and her phrases were very repetitive. Spontaneous thoughts, through speech never manifested.

▪️Fear paralyzed her ability to speak in public.

▪️Terrified and tormented all day long.

▪️ She used to walk around repeating to herself, “It’s ok. It’s ok, It’s ok. It’s just Mama, Dada, Sissy, the dishwasher.” anything and everything scared her, she had to constantly try to calm her fears.

▪️ She didn’t sleep for the first 10 1/2 mths of her life longer than 40 mins at a time.

▪️ She couldn’t complete one therapeutic evaluation, she would sit in my lap, scream and bang her head on my clavicle.

▪️ Much of her everyday behaviors were repetitive.

▪️ She needed one of us as an Aid in her Children’s Church Class at all times.

▪️ Transitions in her routine were very excruciating.

▪️ Her bilateral functions were significantly challenged along with her vestibular system.

Example: Her ability to balance and invert her head caused great struggle. Learning to alternate her legs going up a flight of stairs was hard but going down in the same manner seemed near to impossible.

And with all these behavioral issues she continued to battle. I knew that pharmaceutical medications were on the near horizon. I also knew she wouldn’t benefit from them and they would only increase her suffering.

So I did what I always do….Research!

I found out that we all have an Endocannabinoid System that needs CBD Oil. I also found out that many of Lillirose’s behavioral issues could be improved greatly if not eradicated by the use of a pure, potent and powerful CBD Oil.

And I found it! The most beneficial nutrient on the planet to support her body with all of its challenges…..what I call our “miracle in a bottle” the world’s most potent, powerful and purest CBD in the World …..and it has transformed Lillirose’s life!

Example: On Day 4, we were all sitting around the lunch table in our home, no talking was happening, just a lot of chewing and swallowing, Lillirose spontaneously said, “I feel SO happy! Thank you for taking such good care of me!” 😳👈🏽 My husband, 14 yr old daughter and I, jaws dropped wide open and I managed to say, “You’re welcome Sweet Girl! We love you so much and are SO glad you’re feeling happy and shared that with us.”

💚 This is Lillirose today, doing the impossible (she’s running in the black sweat outfit) 👇🏽👇🏽

💚 We got to the park and Lillirose said, “I hope friends will be there to play with.”

🥰🥰🥰

💚 SHE approached this brother and sister team, waved at them and said,

“My name is Lillirose. What’s yours?”

😳😍😳😍😳😍

💚 She is the one joyfully screaming and talking the loudest. She’s running far away from me, with kiddos she JUST met: by her own initiation, carefree and transformed.

💚 Climbing up and down stairs alternating legs. Sliding down slides. Climbing rocks. Running across uneven terrain…doing it all like a Boss!

💚 A very different girl and a very different life!

Thank you God for CBD!

💚🌱🌈🌱💚

Gifts: Past & Present 

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Don’t you see that children are God’s best gift? Every day with my children is a gift.  I continue to cherish and unwrap each moment.  Each day new, exciting, challenging and exhausting. I ADORE. My.Girls!!!! And even though Sophie isn’t in this image below, she’s included in all I am about to say, because she truly taught me […]

Say What???

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Saying anything about her truth has never been easy for Abby.  She’s always been a girl who’s kept her thoughts and words under tight lock and key.  I worried about her constantly after Sophie went to Heaven.  I knew she must be thinking and feeling things, but how would she ever communicate her brokeness to […]

Holy Miracle!!!

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“Holy Miracle!!!” Abby said, “You know how you always say, “holy mackerel? Well… I say this is a Holy Miracle.”  Tears of joy streaming down her face.  Her words were concise and accurate. My recent battle with Lyme Disease had just ended in a victorious win for myself and my family.  My restoration and renewed […]

The War is Over!

I am FREE!!!! I am FREEEE!!!!!

and

he who The Son sets free is free indeed!

 
When our family moved South 8 months after Our Beloved Sophie and Nancy went to heaven; I believed that God was asking us to move to a place we had never been or laid eyes on before, like modern day Abrahams.  God was calling us to move to a new land flowing with milk and honey, the promised land.  Enthusiastically and broken hearted (yes they can co-exist at the same time) filled with faithful promises we uprooted our family, our memories, and our lives.  In the midst of the excitement and sorrow I had forgotten about the giants that preoccupied the very same land!!!  I overlooked that we would have to do battle once again.  However, I did remember our family’s previous battles, our wounds were still fresh, not even healed.  As a family we battled, as individuals we fought.  We were battle scared and weary.  Blood, sweat and tears oozed from every orifice of our bodies, hearts and minds prior to our relocation, if you would have told us we had one more epic battle coming our family’s way I/we would have run in the opposite direction!  We were too weak, broken and wounded going into this war, in our own strength we could not win!  But, we desperately wanted to apprehend the promises of God and we began to march forward.
2 years after our relocation I became debilitated with a sickness foreign to me and my family.  When my test results came back positive for Lyme and Rocky Mountain Spotted Fever our breath left our bodies.  What???Lyme??? is that real?  Rocky Mountain Spotted Fever?? huh?? We quickly learned RMSF is the only tick related illness that is categorically fatal and Lyme is very difficult to treat.  We were shell shocked, in disbelief certainly this isn’t the promised land, God, is it???  
I was already living the hard-pressed life Paul talks about in Phillipians torn between Heaven and Earth and now my body and parts of my heart were really ready to be relocated to heaven.  I needed my physical suffering and pain to end, but my heart and mind knew I was desperately needed here on earth.  However, we did try to prepare our hearts, to hold each other loosely and each day became a gift as time moved forward, moment by moment.
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As we pursued medical treatments and followed over 8 different treatment protocols; 2 that almost ended in death, however fervent prayers for wisdom and healing continued.  Some of the sweetest spoken from my 9 year old, Abigail who was nursing a very broken heart after saying good-bye to her baby sister a very short time prior.  Sophie 872
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“Mommy are you going to heaven?” she would whisper.  “Not today my sweet girl, not today.” I whispered back.
I was 100% totally committed.  Whatever I needed to do to win this battle, I would do!  
Lots of battle plans failed.  The war strategies are so vastly different for anyone who battles in these wars. There’s not one successful blueprint for any individual warrior to follow!  God revealed my final battle plan.  I began to commute to GA to meet with a Major General, an alternative medicine expert commissioned in the Lyme and tick related illnesses battle.  His wife was infected.  Dr. Anderson did anything and everything to free her.  Today she is also free!
After 8 months of commuting, my battle ended in victory!  On January 13th, 2014; on my last visit to GA to see Dr. Seneca Anderson.  All spirochetes that have systemically attacked my entire body for 730 days, have been eradicated!  No longer a captive, my life has been restored.  Liberation, jubilation, restoration, redemption, Victory! War over!  I did lose some of the battles but I won the entire war!!  God, Dr. Anderson and I have slayed those giant Lyme and Rocky Mountain bugs!  100% success and 100% destroyed!  My body is FREE!!!!!  An extraordinary gift, my life and health restored!  Faith renewed.  Words fail to communicate my/our excitement, but it feels a bit like this for all of us….
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A new season, a new year, new dreams, a new me and a new beginning!  So much newness, joyful electricity surges through my veins.  Free!!!! from a disease that most traditional doctors say can not be completely removed from our bodies once infected.  Patients infected will always do battle with Lyme and other tick related spirochetes once they have invaded.  That’s a lie that has been swallowed!  I want to give anyone out there hope and say ….it is possible to rid your body of these diseases, I and many other patients of  Dr. Anderson’s can testify!  Is it hard to exterminate the infectious bugs?  Absolutely!  Is it painful?  Absolutely!  Are sacrifices made?  100 percent, yes!  But, Freedom is achievable!  You can WIN!
I can say today I have won! Not only is my body clear from Spirochettes: but the toxins they leave behind are also detectable and I have no detectable toxins!!  The lowest toxin level registered by any adult is a 5 and guess what??? I am a 5!!!!!!  no toxins of any kind, chemical, environmental, free radical, bacterial nothing, none, nada, zip~~~~clean as a whistle!
 
As I rejoice, I know someone else is crying and asks why….I used to say “hang on” but now I say “let go and let God lead you.”  Intimately, I know how hard the battle is, I know the eminent dangers and the darkness that surrounds the battle field, and so does God.  He’s there with you fighting and going before you.  
At my last Drs appt, when my freedom was confirmed; this was my daily devotion from Streams in the Desert.  His timing is perfect. I wanted to share it.  God wanted to show me his heart towards me and to you.  He draws near to the broken-hearted and binds there wounds.  Don’t give up sweet one!
When he has brought out all his own, he goes on ahead of them.(John 10:4)
This is intensely difficult work for Him and us—it is difficult for us to go, but equally difficult for Him to cause us pain. Yet it must be done. It would not be in our best interest to always remain in one happy and comfortable location. Therefore He moves us forward. The shepherd leaves the fold so the sheep will move on to the vitalizing mountain slopes. In the same way, laborers must be driven out into the harvest, or else the golden grain would spoil.

But take heart! It could never be better to stay once He determines otherwise; if the loving hand of our Lord moves us forward, it must be best. Forward, in His name, to green pastures, quiet waters, and mountain heights! (See Ps 23:2.) “He goes on ahead of [us].” So whatever awaits us is encountered first by Him, and the eye of faith can always discern His majestic presence out in front. When His presence cannot be seen, it is dangerous to move ahead. Comfort your heart with the fact that the Savior has Himself experienced all the trials He asks you to endure; He would not ask you to pass through them unless He was sure that the paths were not too difficult or strenuous for you.

This is the blessed life—not anxious to see far down the road nor overly concerned about the next step, not eager to choose the path nor weighted down with the heavy responsibilities of the future, but quietly following the Shepherd, one step at a time.

Dark is the sky! and veiled the unknown morrow!
Dark is life’s way, for night is not yet o’er;
The longed-for glimpse I may not meanwhile borrow;
But, this I know and trust, HE GOES BEFORE.

Dangers are near! and fears my mind are shaking;
Heart seems to dread what life may hold in store;
But I am His—He knows the way I’m taking,
More blessed even still—HE GOES BEFORE.

Doubts cast their weird, unwelcome shadows o’er me,
Doubts that life’s best—life’s choicest things are o’er;
What but His Word can strengthen, can restore me,
And this blest fact; that still HE GOES BEFORE.

HE GOES BEFORE! Be this my consolation!
He goes before! On this my heart would dwell!
He goes before! This guarantees salvation!
HE GOES BEFORE! And therefore all is well.

J. Danson Smith

The oriental shepherd always walked ahead of his sheep. He was always out in front. Any attack upon the sheep had to take him into account first. Now God is out in front. He is in our tomorrows, and it is tomorrow that fills people with fear. Yet God is already there. All the tomorrows of our life have to pass through Him before they can get to us. F. B. Meyer

God is in every tomorrow,
Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for my way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain.

We’re Not Professional Climbers!

So Far  (A 3 min video begins this post. Simply click the words that proceed the parenthesis),

Sophie has spent nearly 3 years living in heaven.  Her father, big sister and myself have been learning to navigate through grief.  It feels like scaling K2.  The new terrain is unpredictable, dangerous, terrifying, unfamiliar and complicates our souls.  Radically our travels are transforming our family.  We have stumbled upon courage, strength, perserverence, love and joy through the climb.  However, our progress is somewhat stilted, our visibility is randomly obstructed and intermittently we loose ground.  Travel guide authorities we have met while climbing have suggested that our climb through grief is not yet complete.   “Completed? What?  We’re not professional climbers, not even novices!  We have an 8 year old in tow!  We were chosen for this climb but we are totally untrained, uneducated and physically weakened by the circumstances and requirements of this task.  We’re barely putting one foot in front of the other.  Breathing shallow.  Chapped, bruised, bleeding, salt water stings our cheeks.  There are days we slide backwards.  Reaching completion seems totally unattainable?  or is it just unrealistic?”

I think our grieving process will never reach completion until our entire family is reunited, reaching our final destination, together in heaven forever.  Then our climb through grief will be complete.  Until then, navigating our climb through grief may be less intense, there will be moments of discovery, epiphany and success.  There already have been so many of those miraculous moments and yet for us to have to climb each day separate from Sophie whom we loved so dearly, the word insurmountable comes to my mind.

It is not the *natural* order of life to bury a child.  So I would have to conclude that climbing through the grieving process would not follow any *natural* patterns either.  Certainly, there are opportunities to be transformed along the journey.  Navigating with the pain.  We *live* each day by the Grace of God.  Yet, still there are days where we shake our fists and a whisper turns into a scream.  

 I turned to the scream of One Man who made the ultimate climb,

And at the ninth hour Jesus cried out in a loud voice, “Eloi, Eloi, lama sabachthani?”–which means, “My God, my God, why have you forsaken me?”

Remembering the promise that was made prior to His last scream, “I tell you the truth, today you will be with me in paradise.” One day I will be in paradise too and HE has not forsaken me!   We will complete our climb through grief, our reunion awaits!  He blew into my lungs filling me with everything I needed to head for higher ground.  Hard pressed and still learning to climb through the brutal terrain of grief tender hearted and incomplete.  Until….

 

To Be Continued…

Regret: (emotion) an intelligent or emotional dislike for personal past acts and behaviors.

Regret, like a prowling lion seeking whom it may devour in our family this past Christmas season 2011.

It caused us to question every nugget of eternal truth we have hidden in our hearts.  Everything that has brought us comfort and peace was under siege.  Regret’s questions came knocking on the all the doors of our hearts.  What if?  Why? Why didn’t we? What about that? If only, I wish I would have….  All of us under the attacks of this unwanted predator regarding our precious Sophie.

This deadly assault ravaged the tender heart of our precious 7 yr old Abigail, the most.  The constant prowling and pounding on the door of her sensitive grief stained heart was excruciating.  Regret is difficult for any person to battle (we all have them and there is an element of responsiblity and truth in each one) but, for the constant assault to be waged very strategically on a child! our precious Abigial ….was just about more than this Mama could bare.

As Abby cradled Sophie’s most precious Christmas ornaments,  an eternal living hope, spoke in truthful whispers.

Remembered with Love

I am always surrounding you, my Ab.  I am glorified and healed.  I am alive.  I am not lost.  I am not gone.  Sisters are forever.  I have no need of rest in heaven.  We will be together again.  I love you.  Our relationship continues.  The Father allows me to communicate with you through the heavenly-veil, remember our butterflies!

These precious whispers were accompanied with a fierce ROAR of darkness; it was attempting to extinguish the Truth and Light.

We prayed, waited, watched and listened as Abby continued to reach towards heaven and all its surrounding promises.  Russ and I continued to remind Abby of the most important eternal truths that have become water to our souls; hope, heaven, love, joy, treasures, alive and forever.  However, we needed God to whisper personally into Abby’s heart and bring to life every truth we knew Abby held dear, therefore silencing the predator of regret.

Christmas had passed, we packed our precious family ornaments and rang in the New Year of 2012.  Hopeful, expectant and knowing in an instant this battle could end, healing could begin and regret would flea!

And as it were, God was near, rapidly working all things together, wasting nothing;

January 11, 2012

Russ and I tucked Abby in bed.  We read a devotion together, here is part of that excerpt

“Share Your Blessings”

Jesus told us that we should be generous with other people, but sometimes we don’t feel much like sharing.  Instead the things that we have, we want to keep them all to ourselves.  But God doesn’t want selfishness to rule our hearts; He wants us to be generous.

Unbeknownst to Russ and I as we concluded regret came pounding on the door of Abby’s tender heart.  Suddenly, tears began streaming down her face,

“I didn’t share with Sophie.  I didn’t know she was going to heaven, I didn’t want her to go.  I didn’t share with her while she was here.”

an outpouring of regret…

Wide-eyed, I bit my lower lip to keep it from trembling, tears accumulated, my breath left me.  I couldn’t speak.  (Oh dear God!  This is what she remembers? a fleeting moment of their time together? torture for Abby’s tender heart)

Russ, (the other half of my heart) very gently and calming spoke, “Abby, you are a wonderful big sister, the best.  Sometimes, we don’t share when we are little.  We have to learn how to do it.  You are the perfect big sister for Sophie.”  Abby looked at her father and said, “really?”  He nodded and said, “and you know what Sophie would say?” Abby shrugged.  “It’s ok Ab. it’s ok.”  Upon hearing these words, exhausted from battling, Abigail collapsed into her father’s arms sobbing.  Hearing, “It’s ok Ab. it’s ok,” words of forgiveness that Sophie would extend to her without hesitation in conjunction with the breath of God; freed Abby!  Regret fled, questions dissolved and Abby fell deeply asleep, peace.

God wanted to highlight this moment of life giving freedom; exceedingly and abundantly for Abigail.  He wanted eternal living and restoration to manifest itself to Abby in a tangible way.  God wanted Abby to know her relationship with Sophie is different but, it continues in extraordinary ways; indestructible, incorruptible and forever.

So….4 nights later

January 15, 2012

Russ tucked Abby in bed.  She said with utter confidence, “You tell me about any dreams you have about Sophie and I will tell you mine.

“Interesting Russ thought and noted…..not “If” but “When.”

That following night,

January 17, 2012

I woke Abby for school.  She proceeded to tell me of a dream she had of Sophie that night.

Abby said,

I was at the dance studio with Samantha.  We were working on stuff.  Both of us, kept seeing bright twinkling lights shinning around the room.  The light began to makes letters and spell, S O P H I E.

And then… I SAW Sophie, she was there dancing with us!

Then she gave me a hug!

“and I felt her physical body! I felt her physical body!!!!!” Abby squealed with excitement.

A personal visit from Sophie, in Abby’s dream!  I cradled Abby in my arms and began to thank God for replacing regret with truth of every eternal whisper!

The truth is Abigail spent every moment of her time patiently teaching Sophie each one of her dance recital routines; while Sophie was on the earth.  The precious gift they shared helped Sophie refocus her mind off the pain that Williams Syndrome caused her on earth.  It united two sisters together before the Throne of God!

They continue to present their gifts of worship to God together, Abby’s dream confirmed it.  One sister dances on earth and one in heaven, always together; bound by His promises, forever!