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!

💚🌱🌈🌱💚

No Such Thing As A Long Time

This gallery contains 10 photos.

“There is no such thing as a long time.  Only memories worth remembering and memories that aren’t.” (Sylvester Stallone This Is Us Season 2 Ep 3)….I felt such relief after hearing these words! A counselor once told me “Sophie’s been gone 2 yrs.  It’s time to move on.” Excuse me??? As if 720 Days WITHOUT […]

Say What???

This gallery contains 9 photos.

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 […]

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!

Chicken Pox for Christmas!

Today, December 8, 2011 I celebrate Abigail Grace Henkel, my first born gift.  Her school, Grace Christian Academy performs, “Dude, You hear what I hear?” and I continue to stand in broken awe of how God is working to make beauty for ashes.

Our 1st Christmas with Sophie in heaven

We returned home to Jacksonville from an extend vacation with friends and family in California; just in time for Abby to participate with her (Dance Theatre of Jacksonville) class in this adorable Christmas dance entitled “Chicken Pox for Christmas.”

The day of her Christmas recital December 13, 2009, had been a dark day.  As we put up our tree and started hanging the ornaments.  She would say, “I miss my baby sister.”  Abby would see an ornament with Sophie’s picture or ornaments from the previous couple of years that were Sophie’s and her broken heart was evident.  My heart joined in her pain.

In a moment of reflection I realized, I have been blessed with two extraordinary girls.

Abby; my first born, very shy on a regular day to day basis however, she LOVES to sing and dance.  (Kind of a walking contradiction in my mind.)  But, I had repeatedly witnessed her gift first hand.  If Abby was given a song to sing or steps to do (from the age of 3) she would remember, participate and begin to beam.

Sophie; never shy within our family circle.  She sang and danced from the moment she was able.  These two sisters were synchronized in their love to sing and dance.  It truly was their bond.  They danced every second they were together on earth, it was their love language.

This is Abby’s first recital performance since Sophie went to heaven.  (Abigail is the one in the middle of this video, big red bow, glitter skit and top.)  I wasn’t sure if her love for dance would reappear, had the brokenness of her heart, shattered her love of dance, stolen that which gave her so much joy?  Would the courage of the young boy David arise and cause the enemy to flee??  I was nervous for my Abigail.

And suddenly; the glory of God shown around her as the music began.  Sophie was there as well, I know it.

I was so blessed to see her love every second of this performance.  Something she’s been gifted at and truly loves to do!

Reminder:

For the gifts and the calling of God are irrevocable!!

Not even our devastation, broken hearts or anguish can remove what God has deposited!  His destiny and will for our lives can not be stolen!

Impossible?? No such thing

Impossible: unable to exist or happen.  Unable to be done performed.  Incapable of being true.  Hopelessly unsuitable; difficult.

So many new exciting opportunities coupled with so many difficult challenges have presented themselves to me in the past month; I have been feeling the intensity of the Potter’s hands.

Tis the season; right?  A constant combination of  “to do lists” with holiday festivities, which seems pretty usual with the onset of the Christmas season.

On top of which we continue to try to create our “new normal” ever since my girls went to heaven.  The Christmas seasons thus far have proven to be difficult for my fragile heart to handle.  Unearthing, our precious Christmas treasures is a gentle balance of excitement and reminding myself to breathe.

Christmas 2011

When I was a young girl my Grandmother started an ornament tradition with each member of our family.  My Grandmother assigned us all to a specific type of ornament.  I was assigned angels.  She has given me many angels over my 40 yrs.  I unpack and hang my beautiful winged collection every year.   Their significance has changed dramatically.  Angels constantly in the presence of God, surrounding the throne accompanied by my daughter Sophie and my sister Nancy; perspective changed, forever.  My comprehension of the Truth and the reality of my girls living there, being swallowed up by life captivates my thoughts!  They are not dead, gone, lost they are very much living and active.  Sophie and Nancy are being about their Father’s business, as He wills and deploys them to achieve supernatural things to glorify Himself, comfort us on the earth and communicate through the heavenly veil to us….breathe, breathe.

Christmas 2011; so much to do and the impossibility of it all, a state of overwhelming was just around the corner.

And then He reminded me of just what He has done and can do.

Stones of Remembrance

Spring of 2010

My 6-year-old daughter Abby asked, “When we get to our new home how will Sophie know where we are?”  My husband, Russ had just Retired a Master Sergeant after 21 years in the US  Marine Corps.  We had just sold the first home we ever bought, 3 1/2 years prior.  The only home our 2 daughters had ever known.  Our 2 ½ year old daughter, Sophie was now living in heaven, after open-heart surgery just 7mths before.  The world was moving very fast.

Abby’s heart was now troubled.  Abby was worried that if we left the only house Sophie ever lived in on earth how would she know where to find us?  I wasn’t prepared for the depth of this question coming from my 5 yr old after a 2 day journey from N.C to TN.  I was however, enthusiastic about her expectation that somehow Sophie would be in touch with us!  And I was surprised at the confidence and assurance of my answer.  With no hesitation and quite automatically I spoke,  “Honey, I don’t know how we will know.  But God will show Sophie where we are and we will know that she knows.  I promise, you know?  She smiled and agreed with a nod of her head.

We were just about to exit the freeway to see our new apartment in TN for the first time.  We had no idea what miraculous events were about to occur.  In our wildest imaginations we would not have expected such extraordinary events to occur.

What God did to confirm this divinely inspired promise to Abby is supernatural, miraculous, loving and extremely personal.  Not one detail did He overlook, sheer perfection.  To explain such detail requires traveling back in time just a bit, so bare with me.

Back in time

While Sophie was on the earth, she loved butterflies.  I too shared a love of butterflies.  I have always loved the symbolic picture of a “new creation” in Christ.  The butterfly’s intense transformation; beginning as a caterpillar, challenged in their emergence from the cocoon and then being victorious as they are released into the wild as they take flight.  They are completely transformed called into a whole new destiny.  Once caterpillars, they crawled on the ground eating leaves and after being confined in their chrysalis stage they emerge something totally and completely exquisite with wings!  Their destiny is to fly and to drink sweet nectar!

Sophie was captivated by butterflies.  As Sophie began to recognize pictures, and her speech developed, she would point and say, “ohhh pretty buffff-fly Mama.”  She also had a collection of butterflies hanging on fishing line above her bed.  Every night, Russ would lift her up, in a horizontal laying position, as if she was flying herself, so that she could pet each one before bedtime.

2 Spring seasons Sophie was on the earth.  During the last spring season she would constantly try to catch a butterfly.  Her attempts were unsuccessful, but she never stopped trying.  Russ acquired a butterfly net and spent quite a bit of time running around our backyard trying to catch a butterfly for Sophie to hold.  He never caught one but never stopped trying.  I really had never met anyone who had ever caught a butterfly.   It was mission impossible, futile.

May 29, 2010

Abby and I finally arrived at our new apartment home.  Russ has arrived a few days prior to sign leasing information and get ready for the movers to arrive.  Everything was new to us, a location we had never been and our new residence.  The apartment was void of all furniture Abby ran around, explored and giggled with delight.  The movers were to arrive the following day so our first night we stayed in a hotel.

It was a beautiful sunny day.  Abby was wearing one of her favorite tops.  A purple tank top with a sparkle butterfly design on it.  As her exploration of her new residence subsided, back out to our car we went.   We stood outside for a moment, under a huge tree cherry blossom tree observing the neighborhood and then it happened….

A butterfly came and landed on Abby’s hand!!!   She gasped and quietly whispered, “Look Mommy.”  I thought for sure as quickly as it had landed it would fly away, one quick move, or loud sound and our beautiful visitor would take flight.  Enormous smiles emerged from our faces as we looked at one another.  I whispered, “hold still, sweet pea.” as I dug for my iPhone to memorialize the moment.  Abby began to giggle because the butterfly began to walk around on the back of her hand and she said, “It tickles.”  and it began to dawn on me that our beautiful visitor was in no hurry.  So, I placed my hand next to Abby’s and this precious butterfly walked onto the back of my hand and began to “tickle” me too.  Abby and I were totally awestruck!  I looked at Abby with a huge smile and said, “Sophie knows where we are Abby.  Do you know that in your heart?”  Abby nodded with a grin through a well of tears.  Russ came out of the garage and yelled across the parking lot (he’s a Marine), “Hey what are you two doing?”  I thought his shouting across the parking lot would scare our divinely directed visitor away but the butterfly stayed firmly planted on me.  Abby waived him over, as if to say, “come quickly” as he got near to us; Russ could not believe what he saw.  Mission impossible had become a reality! He held out his hand and then this butterfly walked from my hand to his, the 3 of us standing there rejoicing and broken, knowing Sophie was interacting with us through the veil.  Our exquisite friend stayed for quite some time visiting with us; under that tree.  We all soaked in the extraordinary interaction.  The butterfly would even flap her wings and hover over us but then land on us again.  She was playing with us.  The last place she attached herself was to Abby’s purple butterfly tank top.  We literally had to peel her little sticky legs off of Abby to place her on the bush behind us, so we could go check-in to our hotel.  This divine appointment was a confirmation of magnanimous proportions.  It was supernatural, miraculous, loving and an intimate exchange with the Creator and Sophie, utilizing a significant and special part of His creation!  We could have lived off of this moment in time forever but there’s more because He’s that good.

Supernatural Welcome Wagon

As we settled into our new home and location our first summer in TN; Russ, Abby and I had many supernatural encounters with many kinds of butterflies.  We believe God allows Sophie to usher them to us, being busy about Her Father’s business while she’s living in His house.

Every visit has been unique and lengthy; not at all accidental. One day a butterfly ran errands with me in my car, sat in my lap, came into our home and spent the night.  Miracle?! Absolutely! This precious creature drank from a mixture of water and a tiny bit of salt, (that a friend of mine googled) as I had no idea what to attempt to feed our delicate houseguest.

I have documented our visits through photographs and videos, as a stone of remembrance.

Visiting at the pool

running errands in my car

in my lap while driving

in my home

having dinner at our sleep over: tiny bit of salt in water

not happy to release our friend the next morning

a new and different visitor: that same afternoon

visiting with Mommy

God wants to move heaven and earth to comfort our grieving hearts.  Our Abba Father knows how hard separation is during the sorrow of earthly loss.  He was separated from His One and Only Son for the reconciliation for the World.  He will orchestrate supernatural experiences to occur in order to encourage us, for sure!  We have to be vigilant, keep watch and be ready!  There’s some mind-blowing stuff being delegated from the heavenlies, all for the King, His Kingdom and His Royal Subjects in heaven and on earth.

I don’t think it’s too much of a leap of faith to say that God has given Sophie a job, ushering her favorite beauties with wings.  One of the most exciting revelations that I have received in reading a book called, “Have Heart: Bringing the Gulf between Heaven and Earth,” in the Chapter entitled “They are active,” Steve and Sarah Berger explain how our loved ones are assigned work to do in heaven not boring, monotonous, mindless busy-ness, but Kingdom work, filled with excitement and purpose.  Our loved ones in heaven continue to participate in God’s redemptive plan and purpose alongside us here on earth, together we are co-laboring!  They are not far off.  They are very near to us.  Sophie has been relocated to heaven to begin her God-given purpose there.  God can deploy Sophie to do whatever He wills and we are ready to receive any communications or interactions He wants to send!

Back to the present

So in addition to navigating through the Christmas season of 2011, fragile, longing and sometimes sad; God has been reminding me that His arm has not been shortened and never will be.  Don’t give up hope!  Expect, believe and look for miracles.  The word impossible doesn’t exist for Him.  The doors He’s opening no man can shut.   For all the promises of God in Him are Yes, and in Him Amen, to the glory of God through us. (2 Cor 1:20)

With God all things are possible because unto us HIS child was born.

Without You I would be utterly lost in darkness and despair!

Happy Birthday Jesus and Thank You!