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???

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 […]

Fingerprints and a Promise

The Verse

I begged, prayed, pleaded, reasoned, debated, cried, screamed, “Oh God…I can’t do this, I can’t loose them both in the same year.”  A still small voice said, “I know you can’t, but I can.”  I wanted to argue, protest, to disagree but all I could do was trust , follow and believe.

As newly born babe in Christ at the age of 30; Phillipians 4:13 was one of the very first Scriptures I memorized.  I called upon this triumphant verse every time I took a step of faith.  Experiencing the supernatural activity of the Holy Spirit working through me was extraordinary.  The Holy Spirit was powerful, tangible and real.

However, this verse that led me to victory was now ushering me into extremely foreign territory.

My knees were buckling, my heart was breaking and I was doubting.

“All things Lord? You can do all things through me?””  I questioned. “I promise.” He said.

My girls were sick.  Their conditions were getting worse…the valley of the shadow was getting darker.

I can do all things.”  I exhaled.

My Girls

A bit of our history.  About 17 mths after I became a Christian, I met Nancy Elizabeth.  Because of Jesus I can say with all confidence; Nancy is my sister.  Our relationship was not born of the flesh but of the Spirit.  The birth of our bond was immediate, deep and refreshing.  We shared everything, our thoughts, fears, hopes and dreams.  She was a Proverbs 31 woman in every way; a conduit of Love, Mercy, Grace, encouragement and gentleness.  Nancy led our women’s bible study in worship every week and served a small group.  She encouraged me to play guitar alongside her and together we led our home fellowship bible studies in worship.  Worship was her calling and it ran deeper than any song.  Nancy became God-mother to my girls.  She was the Fragrance of Christ to all people.  As this sweet aroma dance through her life, Nancy was battling stage IV colon cancer.  Never in remission during that 10 years; Nancy took every opportunity God gave her to share the good news.  His Fragrance was released over the entire medical community in San Diego, because Nancy was faithful and courageous.  God’s shekinah glory beamed through rounds of chemotherapy, rounds of radiation, surgery after surgery, MRI’s, CAT scans, EMS workers, ambulance drivers, medical specialists, because Nancy walked with God.  She was a modern day Enoch.  In Sept 2008, Nancy’s final significant in-patient surgery, Drs had discovered that a tumor had grown around the vertebras in her back and cracked them.  In a 15 hour surgery, Drs. removed the tumors and the broken vertebras.  Surgeons replaced what they had removed with steel metal bars and screws, which spanned the length of her back.  Drs also broke one of her ribs and created a vertebrae.  They placed it inside the steel metal cage to protect her spinal cord.  His Fragrance got stronger.  15 days after that surgery, my beloved husband put me on a plane.  I flew to California from North Carolina to be with my sister.

I spent a divinely appointed week with Nancy.  I got to love her, serve her, talk to her, pray with her, and cry with her.  I even begged her to take me with her, to which she smiled and whispered, “I’m not going anywhere yet.” At this point she was too weak to walk and used a wheelchair frequently.  Nancy was gaunt but, glowing.  The aroma continued to increase in strength.  During this Period of time, Nancy had been undergoing bronchoscopies every 6 weeks.  She had a tumor that was threatening to collapse her airway.  These treatments extended her life.  However, they were painful, challenging and the frequency of them damaged her vocal cords.  This stopped her audible worship but not the worship of her soul.  After my week drew to a close, heavy hearted; I returned home.

As the months passed the cancer had spread throughout Nancy’s whole body.

It was then that the fingerprints of God began appearing.

In N.C. Sophie’s heart was showing significant signs of cardiac failure.  Duke Drs were stunned at the rapid progression of Sophie’s deteriorating heart.  The specialists had never seen any Williams Syndrome patient’s heart deteriorate in this way.  Never? Never.  Sophie began diagnostic tests to find the right treatment to help repair her heart.  The first procedure was a cardiac catheterization.  This “somewhat risky, slightly invasive” procedure is 89% effective.  Sophie’s cardiac cath Dr. was very optimistic that it would help “buy us some time” before open-heart surgery would have to be performed.  We scheduled it with hope.  However, the following day after the cath was performed, Sophie’s Dr. entered her hospital room.  The weight of the world rest on his shoulders.  The disappointment was visible and I knew, “it didn’t work did it?” I said.  Breathless, tears lined his eyes, shaking his head he quietly spoke, “not one bit, I’ve never seen a patient respond this way to catheterization before. I’m so sorry.  She needs open-heart surgery and soon.”  As I closed my eyes to block the tears from escaping, a reminder….”I can do all things.

Divinely appointed moments in time

In December of 2008, Russ, Abby, Sophie and I returned to CA.  I needed Nancy and Sophie to meet face to face.  They both were moving in the direction of eternity.  Unfortunately, Sophie had very intense anxiety issues around the unfamiliar and the unknown; which is where we were traveling.  We were asking a lot of her.  A very long plane trip, different time zone, strange environments, new faces, our friends and family in CA wanting to pour out love on her, mixing all of this together in one trip, things could go very wrong!  Her fragile heart might not withstand the stress.  Hope and prayers, prepared our way.  The day after we arrived in CA; 2 of my most loved people on earth met face to face for the first time ever.  Sophie crawled up on the lap of her Aunt Nancy sitting, snuggling, and laughing.  The blood of Jesus was their bond connected through power of the Holy Spirit.  They were indeed family.  God’s fingerprint stamped the moment.

“He who sits in the heavens shall laugh”

Psalm 2:4

laughing together

Treasures in heaven

Returning back to N.C from our Divine Christmas vacation of 2008; we were filled with resolve.  We were going to find a way to repair Sophie’s heart.  Meanwhile, one of Nancy’s most beloved friends and I would talk weekly about how Nancy was doing.  We would cry and we would pray, asking God to extend her days on the earth.  In our minds there was never a “good time” for Nancy to “go home.”  There was always another holiday, birthday or milestone to celebrate.  But God, knew.  And on April 6, 2009, Nancy went home.  The Monday before Good Friday.  Her favorite holiday is Easter.  This deeply resonated in my heart.  Jesus’s completed work on the cross is the reason she “did” anything on earth to begin with.  His resurrection gave her hope for tomorrow and the comfort of eternity.  Jesus and Nancy celebrated their resurrected bodies together that Easter.  I was undone.  She was healed, perfect, whole, not suffering and singing audibly in heaven!!!!!

As I thought about the divine timing of God and how our family would move forward, I immediately recalled a sweet phone conversation that God appointed for me to have with Nancy, 1 year before.  I said to her, “If you go before Sophie does I need you to watch out for her. Keep her with you until I get there.” Nancy laughed and said, “you know I am not going to put that baby down until you show up.”  She adores the babies.  Having Nancy in heaven first comforted me and my heart was being prepared.

Another fingerprint placed on a divine moment in time.

6 mths and 2 days had passed.  The day had come.  Sophie was scheduled for open-heart surgery.  When the Dr told me of the surgery date my heart skipped a beat,”October 14,” he said. “October 14, really?” I replied.

One of the best pediatric cardiac surgeons in the U.S.A told us Sophie’s surgery was 97% effective.  She wouldn’t need any other operations until she was about 13 yrs old.  We had nothing to worry about.  I looked at him and said, “I’m thankful for your expertise.  However, I need you to be on your toes and have every resource available to you in the operating room because Sophie is unique.  She will challenge you.” The surgery that was slated for 3 hrs turned into 5 1/2 hours.  The Dr was challenged.  Sophie’s life on earth was hanging in the balance.  Sophie came out of the operating room in the late evening on October 14th, but at 5:17 am on October 15, 2009; Sophie’s heart arrested.

As my body began to tremble…I was reminded, “I can do all things.

At this time, I will not go into details about the extensive medical procedures that were attempted over the next 3 days to revive Sophie. However, those three days led us to 12:17 am October 18, 2009.  Russ and I released our precious daughter Sophie into the arms of Jesus and Aunt Nancy.  Healing had found her.

October 18 is Nancy’s birthday.  She was about to receive the most extraordinary birthday gift, our Sophie.  Through tears, I could see them celebrating their glorified bodies together.  Singing an extravagant magnificent version of Happy Birthday.  Sophie had accepted her Royal invitation to King of King’s Lord of Lord’s birthday celebration!

And with that, God’s fingers popped the last piece of this intricate intimate puzzle into place.  We can’t deny the precision of God’s sovereignty in all this.  He didn’t waste anything.  There were no coincidences.  He used it all.  God’s fingerprints leading, guiding, directing, ushering left a miraculous trail.   We witnessed it first hand.  And we certainly can’t deny the powerful truth of the verse:

I/You/We can do all things through Christ who strengthens us. Phil 4:13

The fingerprints of God are found among the wreckage of all our lives.  His fingerprints are found in the successes and the blessings.  I believe He wants us to identify them so that we would know how close He truly is during every season He ushers us through.  That we would know how intimately involved He is to orchestrate such detailed events, right down to the day, hour and minutes in our case.

The truth is nobody stays on earth forever…..we’re all just passing through.