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 […]

One Blessing After Another

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From the fullness of His Grace we have all received one blessing after another! (John 1:16) As I read this to Abby today she giggled and said, “we experienced this today!”   Gifts from God given and received early this year!! God has done it! Abby has done it!  They have done it… together! Today Abby was […]

There’s No Place Like Home!!!!

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Our halls are decked, tree trimmed, stockings hung by the chimney with care, lights lit, sprays of garland outline our walls, it’s Christmas!!!! The most wonderful time of the year and yet we miss her, Sophie.  This is our 6th Christmas without her.  It feels like an eternity and just yesterday.  It’s rough when your […]

MTHFR & Lyme!!@$!!@!!$?!! 

Abby tested positive for Lyme Disease, Rocky Mountain Spotted Fever and MTHFR@$!!@!!$?!!  No I didn’t just swear but I could!!

Many have an understanding of Lyme Disease but have never heard of MTHFR.  When I was 6 weeks pregnant with our rainbow baby Lillirose, I was informed that I had MTHFR; not knowing what it was, I became informed and still have lots to learn.

MTHFR is a genetic mutation that affects 40% of the population passed on by one or both parents.  One major effect is that it inhibits the body from absorbing nutrients specifically  Folic Acid and Vitamin B-12.  These two nutrients are essential for normal hormone production specifically dopamine, healthy pregnancies in adulthood and a host of other issues related to health and wellbeing.

I knew it was likely Abby had one or all of these medical issues, since I have navigated through them myself and Lyme can be inherited through pregnancy. (I was sick when I was pregnant with her.) Vigilanty and suspicious, I have watched symptoms manifest and progress in Abby over the years.  So we had her tested. Not shocked, but frustrtaed and extremely saddened by her positive results, I discussed her treatment protocols with Longevity Health Center.  I could feel my heart racing, my flesh turn hot and my heart break. I sort of knew it was coming.  So why does this information feel surprising and so awful?? Because it’s my Sweet Abigail, my firstborn.

1st Day of 5th Grade

1st Day of 5th Grade

My girl that radiates joy even through her trials and when her heart is broken by grief. Abby’s watched Sophie and I battle for our lives. Sophie won, I lost. Each day I’m realizing Heaven is far better. Personally, I think Abby’s battled enough for 10 lifetimes and she’s only 10 years old!!!  I know what lies ahead, the dangers, the pain, the struggle and the grit she will need to endure it all.

Children with Lyme struggle more with the neurological effects than the physical ones.  LLMD’s call Lyme the great imposter, it hides behind other diagnosable issues.  A child can have one or a combination of the following, ADHD, Oppositionally Defiant, Migraines, Sensory Issues, Vertigo, Motion sickness, OCD, Autism, Tourette’s, JRA and Depression just to name a few.

Abby’s Lyme symptoms began when she was 6 years old. When her first migraine hit, it was violent. She was in the backseat of a rental car and began screaming “make it stop!” while banging and hitting her head. We made it to our destination and then the vomiting came. It was awful.  She had never felt that kind of pain before and she has had migraines similar to this ever since. Instant, violent, awful.

Brain fog, Distractibilty and Hyperactivity have also reared their ugly heads.  Especially the H….Over the past couple years, she’s complained that she feels she can’t control her behavior and speech.  The D and brain fog play a huge role in her forgetfulness, mostly of personal belongings.

Sensory issues have increased yearly.  Mostly, tags in clothing and certain types of fabric and socks she refuses to wear now.  We just know what they are and avoid them.

Bone and joint pain have been significant as well.

None of these symptoms are considered “clinical” or crippling for her but they have slowly progressed over the years. She’s lamented the challenges and felt “off.”

God began preparing us last April as we began looking into homeschooling. Something Abby very much wanted and pursued. It was one of the questions Dr. Anderson’s nurse asked me, “Does she homeschool?” “Yes she begins this fall.” I said. “Good, because she will need the flexibility and rest during treatment,” she said.  I then listened to the physical dangers to watch for…seizures topped the list.  So a new race has begun, one I wouldn’t wish on anyone. I feel responsible and yet there’s no time for guilt.

We have hard work ahead…..this is not a sprint, it’s a marathon.  I know, I have run this course before.  God has blazed this trail.  I have been prepared to lead Abby and I’m totally not a runner.  Good thing she is!!!!  The only way out…is, through. I’ve made it through.  I’ve crossed the finish line.  Abby will cross the finish line!……..just gotta set the pace.

Tearing up the Cross Country Course

Tearing up the Cross Country Course

Breathe ….Momma…. Breathe… Abby….

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 […]