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.
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…
▪️ 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!