No Such Thing As A Long Time

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“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 […]

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 […]

Surprise: New Formula!!

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As the nurses laid Lillirose on my chest minutes after she was born; every muscle was weakened and wobbly after her 16 minute explosive all natural delivery, I exhaled looked down on her angelic face as she lifted her head up!! “Gahhh,” I said.  My arms weren’t ready to tense up yet.  All the nurses […]

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….

Takes longer to bake a potato

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My husband, Russ didn’t want to deliver Our Precious Miracle Lillirose but he almost did. I decided I wanted to do most of work of delivering of our “Rainbow Baby” at home and then proceed to the hospital for the actual birth.  No anesthetics this time around…completely natural. Unfortunately, I was hospitalized at 23 weeks […]