This gallery contains 16 photos.
She DID IT! Wait…it gets better!
This gallery contains 16 photos.
She DID IT! Wait…it gets better!
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.”
💚 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!
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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 […]
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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 […]
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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 […]
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.
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.
Breathe ….Momma…. Breathe… Abby….
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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 […]
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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 […]
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….
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.
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
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.
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!