Tag Archives: rare disease treatment

Reflecting on Second Opinions

Second Opinions Good or Bad

Reflecting on Second Opinions.  When it comes to my health…I ignore 99% of it.  The 1%, is usually the kicker.  I am down for the count until I can learn to listen to my own body.  Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about.  All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂  I’m sure that thrills my dr!

When It Comes to my Child

Then, there is Hunter….diagnosed with Opsoclonus Myoclonus Syndrome.  After, almost 2 weeks (at onset), in the hospital, we got this diagnosis.  This diagnosis was the third and the fifth diagnosis for Hunter.  At the time we were seeking a second opinion, it had been 10 mths.  He was not any better than when we started.  Everyday is a struggle for him.  Everyday there is a new thing.  Everyday, there is a new challenge.

First Kindness, Then Not So Much

Our Dr was very kind to Hunter…he listened and responded to emails and calls.  I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission.  Lately, however, I feel like it is me doing my thing and he does his thing.  I know that he is a good dr and I do not question the diagnosis (so stupid, I should have pushed for genetic testing).  I just want more and I want answers.  Simply stated, I want to understand.  The need for me is that I want it explained to me 1005 times so I will finally get it.  I read through 1300 pages of hospital records.  In my reading, I took notes, made charts and asked questions of my dr friends.  Yet, radio silence on our doctor’s end.

Did I Offend Him?

Somewhere along the line, I must have offended him.  Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts” (that statement was made assuming this is what he had).  I must have ticked him off.  That was not my intention.  My intention was to get any and all eyes on my son.  I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission.

Long-Term Effects

See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me.  I want to prevent that if I can.  I want him to live a life that is full and one that he understands completely.  I have 2 kids that have brain damage from FASD because of the choices their birthmother made.  It is not my desire to have another child with brain damage as well.  To my core, it hurts my heart, to see him struggle to even hold a spoon or put a lego together.

Second Opinion, Third Opinion, and a Fourth (or Fifth) Doctor

At this point, almost 2 years later.  We have left that original doctor, who gave him his third diagnosis.  At this point, of this post, we did seek a second opinion.  Through a WRONG genetics test, we had a diagnosis of Ataxia Telangiectasia Like Disorder.  This diagnosis was carried for a year.  We chose to stay with this doctor, though I have feelings.  A year after meeting this doctor, we actually went for a third opinion.  This last doctor told us the truth of the wrong diagnosis.  We ended up going back with the third diagnosis.

Confused yet?

I hate to hurt feelings during this process….but this is not about me.  It is not about our current dr.  It is not about this lady we are meeting this week.  It is all about Hunter and his future.  I will do my best to move heaven and Earth and to get him the help he needs.

I stay confused.



Reflecting on my Facebook Posts from the Beginning

Reflecting on my Facebook Posts from the Beginning of our journey.  I mean, not all of them, but the ones that pertain to Hunter and our journey.  Boy, these are painful to reread.


Guys…needing prayers. Yesterday afternoon, Hunter (3) began shaking and was unable to walk. We went to Lourdes and they gave him antibiotics for zero reason and sent us home. Luckily, I have friends that are very wise. We were told to take him to the ER in Vandy. We finally got here around 1:30 and at about 5:30 we got a room (7304). Please pray that we can find the reason he cannot walk and why he shakes uncontrollably. Also…I am not able to be with my Lady and she is having a procedure done this morning. Please pray we find answers. I am not sure how much more I can spread myself. Please add Hunter and my Lady to any and all prayer chains and churches. Thank you. 


UPDATE: We are home BUT we are leaving again in the morning. One of his tests came back which indicates inflammation in his brain. We will be home for 5 days and he will be on high doses of steroids. Please pray that we find the answers. Also for my family left at home. I can see all my babies tonight but it is so hard to be away from them.


Got to see my kids, husband, mama and daddy, my Lady and a couple of friends. Also got to shower, pet my dogs and eat with most of my family. Now…back to Lville for a sucky 5 days of heavy steroids Still no dx. Sigh….holding onto the Rope. Pray for safe travels, easy placement of IV, my crew at home and for this time to pass quickly.


Waiting on dr #572 to come in this morning. Getting ready for round 3 of heavy steroids. Good times had by all. #not #day2nortonschildrenshospital #nosleep#overitalready #letsgetdxandgohome #sotired



Steroids suck on a kid but good on infection.
Baby is …. wowzer …. emotional.
No walking alone today.
His speech is beginning to be impaired….so there is that.
We are shooting to come home Monday if all goes well.

My baby took 10 unassisted steps tonight!!!!!!!!!!!! Yes, Richie Clendenen, this was worth putting in color!


Please pray for my baby….he is not doing too well after his IVIG infusion yesterday. Extremely symptomatic and throwing up.


My boy is in a lot of pain…prayers for an easy night would be welcomed. Thanks.


V and I had to swaddle Hunter while I pulled his stitches out. He was so brave and then Noah walked in the room to watch.

H: Noah…..go away.
N: But I wanna watch.
H: No Noah….go downstairs, you do not need to see this.

Noah left the room.


Me: Kim can you keep Hunter overnight Monday night?

Kim: Sure what’s up?

Me: I just found out I have to take him to Louisville on Tuesday for his IVIG treatment and I need you to keep him.

Kim: Ok….but isn’t he the reason you are going to Lville?

**Pause of realization**

Me: Well crap…..forgot he was going.

Morning of champions.


Heard the words “Hunter is medically fragile” today by our pediatric neuro nurse……made me vomit in my mouth a little. Those words should not be in the same sentence. Sigh……


Brother calls for a bathroom renovation idea and I cry because it has been hard today…..like ugly cry where he couldn’t understand me. He was encouraging and led me to Jesus instead of letting me wallow. He said God knew he needed to call me tonight. Wow. Another part of my rainbow. Thank you, brother. I love you.


I lied. He is still up at almost 130 am. He has been in bed since 845 and he is still wide awake. I am about to lose my cool. OMS………I believe I hate you.


Sometimes reality sucks…..but then….there is Jesus. Pray for us as we attempt to head home. Safe travels and no vomiting would be nice. 


Please say a prayer as Hunter and I head off to Louisville in the morning for a couple of days. Tomorrow is IVIG day and Tuesday is chemo. We will also be retesting to check to see if he has any cancer markers and redoing a lot of bloodwork. Its gonna be a tough couple of days for him. Thanks 


He. Has. Been. Up. Since. 4 am. God give us both strength.

Home…..Bart and Ben rescued us. Victoria cooled my jets. Alyssa shoveled the sidewalk, finished and put away laundry, cooked supper and got my diffuser going, Noah shoveled the apron so we could get in the garage, Gigi cleared out the van, Daniel did his chores, and Jude….well, he is just cute. Jay texted to check on us and pray for us. So thankful for my husband, my kids, my family, and my prayer warriors.


Guess who was granted a wish from Make a Wish???????? So excited. Something fun for a change. Thank you Jesus  He knew we needed that.


One had their truck almost die.
One was told she possibly overdosed her son.
One picked up wedding invitations.
One applied for graduation from WKCTC.
One asked to see her birth mom for her birthday.
One humbled himself to help a friend in a crisis.
One listened to 4 chapters of the Civil War and remembered it.
One popped on his hearing aid like a beast.
One has had a rough day with walking/talking/eating.


Friends, Neighbors, Countrymen….lend me your eyes. I’m here to announce Hunter DOES NOT have Friedrich’s Ataxia (1000x worse than Opsoclonus Myoclonus Syndrome) and as of now, he DOES NOT have Neuroblastoma. Thank you, Jesus!


‘Roid rage……it is alive and well today, in my house. Anyone want an almost 4 yr old for a while? He’ll be sitting by the mailbox waiting for pickup.


Well….that was like jumping naked into a nest of iridescent baby ticks. #rushour#Lville #45minutesfor2miles #overit #IVIGday

Related Posts:

3 Month Update

Reflecting on Paris and Holland

Reflecting on Paris and Holland.  My deepest desire is to go to Paris.  It has been a dream that I have had since I was young.  Art is one of my favorite things in the world.  I have a deep appreciation for all types of art.  My heart belongs to Picasso, Van Gogh, Michelangelo, Cassat.

Here I am, trying to explain what I desire and what I was given.  I am trying to learn to love where I’m at, even though it is not where I wanted to be.  This may not make sense to people who are not walking the path of being a special needs mama.  Those are walking it, get it.  Holland is not where I wanted to be…but I am learning to love it.

Flying Away to Paris

I can imagine being on a plane (I love to fly) and jetting off into the sunset.  My kids and pets are all well taken care of at home.  I have my fella and we are off!  There is a moment when I’m so excited, I can’t even stand it.  I can imagine being even more excited then when I went to Africa *cue heartstrings cause I love Ethiopia.*  As we travel, we eat, sleep, watch tv, read, and use the bathroom on this plane.  It is our home for however many hours we are on it. We are going to revel in this little getaway.

When I read this poem, Welcome to Holland, it reminded me of a trip that we ARE planning, eventually.  My mind began to wander and this is the scenario that I imagined.

In My Glorified Imagination, This is What Happened

We get the overhead notification that we are preparing to descend.  Finally, we are there.  We have made it, we have arrived.  We start to land and as the plane is screeching down the runway to make stop….we hear “WELCOME TO HOLLAND.”

Part 2 Uhm NO, Our Destination is Paris, not Holland.

Uhm, WHAT??????!!!!!!!!!!!!  Holland?   Uhm, no.  No thank you.   I know nothing and I do not have an itinerary.  Sadly, I do not have a place to stay.  I don’t know where to eat.  For real, I know nothing.  NOTHING.  I can picture myself asking the stewardess if this is a layover.  How long it will be before we arrive in PARIS, FRANCE.  Then, she says that this is our destination.

Our ticket is one way.  They will be adding our children/pets, onto the plane, over the course of the trip.  This is where we will live out our days until the Lord sees fit to move us somewhere else.  I had planned on staying in France for 10 days, not my life.  I certainly did not plan on LIVING in Holland and what the heck do you mean, you will bring our kids during the flight?????????

When we started on creating our family….we had definite plans.

Big Daddy wanted 1 child and I wanted 4.  We compromised on 3.  Our oldest was high strung, motivated, and determined.  She is also super sensitive to bright lights, noises, and does not care for lots of people.  Our second was a pistol.  She was creative, loved animals, told you like it was regardless of if it was appropriate or not.  She has a bit of a lazy streak and wanted things done for her more times than not.  Our third, our only biological son, was an easy baby until he wasn’t.

He was the first to crawl, he babbled, talked, loved eating and then he had his 12 mths shots….life changed.  Maybe that was when we were “packing” to go to Italy.  It was like shades pulled down over his eyes and he stopped talking, he threw lots of fights, he had sensory issues…..it was tough.  Our life was now full of speech therapy, occupational therapy, and physical therapy.  It was hard.  The Lord guided us and helped us and allowed me to have a great deal of soaked in knowledge….and today, you would never know anything was ever wrong.

So…Victoria, we started planning the trip.  Alyssa, we started saving for the trip.  Then, with Noah, we got on that plane and we headed to Paris, France to see all the things we could see in a 10-day trip.

Then….there was God.

As we were flying, God saw fit to allow 2 more kids to join our crew.  These kids were older, than came from severe trauma physically, mentally, and emotionally…amongst other trauma and He thought it’d be a good idea to have Big Daddy and me to raise them.  It was almost like He threw me into the lion’s den as he did with Daniel.  I was totally unprepared.  Realistically, I thought I could love the FASD (Fetal Alcohol Spectrum Disorder), RAD (Reactive Attachment Disorder, Behavioral Issues, Dyslexia, Developmental Delays, Food gorging/hoarding/stealing out of them.  Sadly, I wanted to fix them.  Plain and simple.

While I was “trying” to “fix them”…..God showed up again.

This time, it was a brief detour, on our flight, to Ethiopia.  The trip there was ROUGH.  It was full of turbulence and engine problems.  We thought and we were told we would not make it BUT GOD had other plans.  We made it…..instead of a 24 hr flight, it would take us 15 mths to get from where we were (on a plane headed on vacation to Paris) to Ethiopia because He wanted us to add to our dysfunctional crew.  He was another older child and he had malnutrition brain, some behavioral issues, and we came to find out that he was deaf in one ear…not a little bit hearing impaired but deaf.  Again, I could fix this.  I could continue raising all these kids will “fixing” their issues and problems.  I was content, tired and overwhelmed but content.

But then……..there was God again.

Several years and tears from our first child to our sixth child…..I was sitting on that plane, wishing to be at our destination so I could have some respite and a time to breathe.  God decided to be my breath and to breathe for me…He did this in the form of our seventh child….our Zebra.

I thought the stress of trying to fix my FASD, RAD, ADHD, PTSD, Dyslexia, Learning Disabilities, Deafness, Autistic tendencies, Opsoclonus Myoclonus Syndrome, blah blah blah was going to bring me to my knees…..oh, heck no….this little dude came into my life and turned it upside down.  He has taught me so much and he has given me such joy but he also went from a normal little boy to a medically fragile kid in about 4 hrs.  Please hear me say…..I would not change a thing with this little guy.  He brings us such joy and happiness….even in the midst of uncertainty with his health.

Part 3:  Welcome Home.

Part 3 Welcome Home.  My flesh screams and I’m hanging onto the armrests of my airplane seat.  I refuse to move.  This is my anniversary.  This is our planned TRIP.  We are not moving.  I do not want to stay.  Honestly, I would live in France, if I had too, but guess what?  I don’t have too.  We are traveling, that’s it.  No more, no less.  I sit there, stunned. Unable to move or comprehend what all I’m about to see/smell/witness in this country I have never planned to go too.

What I Envision Versus Reality

The door of the plane opens…we grab our luggage that is packed for France….and we get off the plane.  My first thought is the drabness of the airport.  The busyness of it.  I felt like I needed to wash my hands because so many people were touching me.  They were all speaking in different languages.  I found myself watching their mouths move, trying to read lips or get a nugget of information, but I couldn’t.  I couldn’t understand any person or sign.  There was also not a single person who spoke English.  I felt trapped in this foreign country.  There was nowhere, no one to guide me, no vehicle, no home, no food, nothing.

Overstimulated Moment

I picture us grabbing our stuff and trying to find our way out of that blasted, loud, big, busy airport.  There was a moment when I needed air.  Sadly, I was overstimulated by the news and anxious because this was completely out of our control.  Air, I needed to breathe fresh air and take a moment to regroup.  I was thrown into something that was not of my doing.  There were two choices, I could either curl up in a ball and sob or I could find a way through the fear and uncertainty.

Ray of Sunshine

As I processed this news, I felt a ray of sunshine hit my face.  I felt a cool breeze as we walked outside.  In one moment, I opened my eyes and from as far as the east is from the west, there were tulips.  I love tulips.  Honestly, I love the beauty of them, the array of colors, the smells.  Tulips come up every single year without fail.  Far off, in the distance, I saw windmills.  The most gorgeous background, I have ever seen in my life.

Reflecting on Paris and Holland

Absorbing my Surroundings

As we walk around, absorbing our surroundings, we think about Paris and what we will miss.  The art, the food, the atmosphere……all of our plans, all the cool things we would see….we had to mourn that because we knew, we were “stuck” in Holland.  Don’t get me wrong, Holland is phenomenally gorgeous, it is just where I wanted to be.  I don’t mind a visit, but why must we live there.  We had to mourn not seeing our family, our home, American food, the freedoms we had in America.  There was just a lot to process.

Once our mourning time was done and we settled into this new life….this new place with all these new sites, new foods, noises, smells.  We began to acclimate to our surroundings and we began to learn about the cultures and the foods.

Holland and Its Beauty

Holland has its own beauty, but it was not what we had originally planned for.  We had to learn to adapt and compensate for the things that we wanted to see in Paris and what we wanted from home.  It wasn’t bad…just different.  It was a change and I’m not one to like change.

I had to learn that I could not “fix” my children…only God could and will do that.  I had to learn to let go of control of what was and begin to love what is.  By mourning, so deeply, the loss of what was going to be a 10-day vacation to Paris, I was losing out on what was surrounding me.

Seeing Things from a Different Perspective

New colors, new foods, new scenery…..I began to love my new home and by loving it, I began to change.  Ironically, I began seeking God more and seeking help for my depression.  Also, I learned that FASD, RAD, Deafness, Opsoclonus Myoclonus Syndrome does not define my children.  Finally, I learned how to love again…I learned how to love my God, my husband, and my children for who they were and not what I “envisioned” them to be.

Be open to change.  Be open to new things.  Stop trying to fix things.  Stop trying to control what you are not meant to control.

Live life and love without abandon.


Reflecting on the Story of Our Rescue

Reflecting on the Story of Our Rescue.  This is a story of My Hero and His Sidekicks.  After another Chemo and IVIG 2 day trip to the hospital, my anxiety took over my body.  It has snowed/iced while we were 4 hrs away at the hospital.  My tribe took over and saved the day.

My Fella


Reflecting on the Story of Our Rescue

^^^^^^^^^^This man caught a ride, in the nasty winter weather we had, rode and 1 1/2 hrs to where Hunter and I were stopped because my sanity could not do it any longer after 2 days of no sleep because of sitting in a hospital room.  We got food, and we chatted the whole way home about nothing and everything.  He never hesitated.^^^^^

Future Son In Law

The Story of Our Rescue


^^^^^This boy, who wants to marry the girl in the picture, dropped everything to drive my husband 1 1/2 hrs to where I was.  He never hesitated or complained.  He just asked how we (meaning me and the baby) were and that he was happy to help.  This girl, in this picture, called me on the way home and made me laugh, encouraged me, and chatted my ear off to keep me from wailing.^^^^^^^

My Daddy

The Story of Our Rescue


^^^^^^This ripe old man, made me a strap of leather that says “Hold on tight to God”  He made this for me because he knew, from the beginning that I would need something tangible to touch to remind me of Christ (and his) love for me. ^^^^^^

My Sisters

The Story of Our Rescue


^^^^^That girl in the blue offered me food, a hotel, a friend’s house, whatever I needed to get through…and she lives 8 hrs away from where I was.  She and her family prayed fervently for me and she spoke wisdom into me while I was having my moment driving on the ice.  Even though she was tired…she stayed on the phone with me until I had calmed down. ^^^^^

^^^^^^^This other girl in green, with the necklace….well, I can handle just about anything until I call her and she says “hey” and then I cry.  Her voice soothes my soul and she calms me to my core.  She listens and gets mad at the appropriate parts of my stories.  She gets quiet in other parts of my countenance, she researches, and she prays.  God knew what He was doing when he created these people to be in my tribe.^^^^^^

My Oak


The Story of Our Rescue

^^^^^This mama of mine…………..this mama of mine…………….this mama of mine…………there are days when I think I cannot breathe without talking to her 500 times a day.  She is my rock.  I am so thankful she is a FAITHFUL and driven prayer warrior.  She listens, she worries, she has great ideas, she is encouraging, and she never makes me feel stupid.  Ever.  She always says I’m a good mama….well….I learned from the best.^^^^^^^^^^


The Story of Our Rescue

^^^^^This girl is a prayer warrior plain and simple.  She faithfully prayed for us as we traveled home.  Those prayers eased my heart and my mind.  When she is on the “prayer train” I know that Jesus is listening and will answer.  Those two are BFFs.^^^^^


The Story of Our Rescue


^^^^^^This pretty girl shoveled the sidewalk, did and put away ALL the laundry, had all my diffusers going, made supper, and just loved on me and Hunter when we got home.  She watched kids, she delegated, and she worked on her homework so she could be ahead.  She let me sleep in the next day, as well….and fixed dinner plates. ^^^^^^^^^^


The Story of Our Rescue


^^^^^This boy had the kitchen spick and span before I got home.  He also shoveled the snow/ice away from my garage door so we wouldn’t get stuck trying to get in our driveway.  Amazingly, he loved on me and Hunter like he had not seen us in years.  He makes my heart smile.^^^^^


The Story of Our Rescue


^^^^^This girl had her chores done, her exercises done, and her schoolwork done.  She also helped unload all the excessive crap we hauled home and she put it all away.  There was no drama, no nothing…..she played and calmed Hunter while some chaos was twirling around us getting things put up.^^^^^^^^^^


The Story of Our Rescue


^^^^^This boy took care of all his chores, without complaining, and he did his schoolwork.  That is quite a challenge some days, but today he did it.  He also goofed up and got caught in a sin act, but he was quick to admit what he had done was wrong and he apologized.  I’d say that is a win-win situation.^^^^^^

Bro Man

The Story of Our Rescue


^^^^^This Bro – man got all his chores done and all his homework done, as well with no complaints.  He is loved tremendously by Hunter.  He is his lego man person and their relationship is so precious.  I think I’ll keep him.^^^^^^


On this particular day, it took MY village to come and rescue this weary woman’s soul.  I’m so thankful that God perfectly ordained each of these people to be in my tribe and to love me and Hunter so well.  God is SO good….all the time.

Reflecting on Contentment

Reflecting on Contentment, 4 years later.  Content a 7 Letter Word that I do not like so well.  On October 14, 2015…..I remember sitting on the pot (yes, my revelations come in the bathroom) and contemplating life.  I have always yearned to have more children.  Big Daddy and I took that matter into our own hands and chose to “get him fixed” when Noah was about 2 maybe 3….at the time, he was 14.  I was looking up at a picture that my kids had made.  Each one had done their handprint in yellow and decorated it.  My frame was full….literally and figuratively.  We even traded in our suburban that, easily, fit 9 people for a smaller minivan.  Yep.  My life was complete.  Next up:  Grandchildren.

Been There, Done That with Adoption Avenues

Ethiopia was closing.  Foster system…..yep…..did that.  We couldn’t really afford any other type of adoption, so I just sat there, praising God for the children that I have and I uttered the words “Lord, I choose to be content.  I am content.  My kids are getting bigger.  I have more freedoms.  Life is good, and I’m thankful.”  I am thinking He was sitting on His heavenly throne, eating popcorn, and laughing hysterically at me.

The very next day.

THE.  VERY.  NEXT.  DAY.  Bart was home, and it was the tail end of fall break.  I was on cloud nine.  I felt like a thousand elephants had jumped off my chest and I was excited about letting go of a dream and moving forward.  In moving forward, we decided to throw caution to the wind and take 5 of our 6 kids to the movie.  Our oldest daughter was working.

Surprising our Kids with a Movie and Lunch

We were all getting dressed and almost out the door when the phone rang.  Normally, since most of us were in the van, I would ignore the phone and go on…I didn’t for some reason (or a God reason), and I looked at the caller ID, and it was my oldest sister.  A little mini back story about my sister and I.  We come from a very close-knit family, and when one of us is hurt or threatened, we surround that person and become a barrier of protection and love.
Yet…my sister and I were never really close.  She is close to my oldest brother, and I’m was super close to my sister 2 yrs older than me.  K is 6 yrs older, and my brother is 10 yrs older.  We loved each other….that has always held true, but that was about it.

A Little Backstory

About a year before this event, I had an appt with my number 6 child.  That trip took me close to where my sister worked.  I ran by there to say hi.  Also to get an update on her kids/grandkids.  Lastly, I wanted to give her an update on my family.  I suggested that we go to lunch together.  To get to know each other and to figure out who we are, as adults.  To my surprise, she said yes.
Faithfully, for a year, we met for lunch once a month.  It came to be a time that we both loved, and we didn’t want to miss it.  We started calling each other….texting each other….having jokes…solving the world’s problems.  I would now consider her one of my best friends.  My sisters are my strength, and they hold me up with love, consistency, prayers, devotion, honesty, and fussing at me when I need it.  When we told our other sister what all had transpired between us, she just cried.  She said that is what she had been praying about for years.

Always Answer Your Phone

So when I saw her name, I picked up the phone.  I knew she and her husband were out of town, so my first line was “what is wrong.”  I heard the panic in her voice…..she kept saying “can you go and get the babies.  Go and get them.  Mom is out of town.  I’m out of town.  Daddy is with them but can you get them.”  Uhm…..YES, I can.  We all loaded up and headed to town and when we pulled up tears and chaos surrounded us.  I will not go into detail because first, I do not have my sister’s permission….second, it is her and the babies stories….not mine to share.

Adding 2 Kids for the Weekend

We kept the babies that weekend (by babies they were 5 and 2), and she picked them up on Sunday.  I remember thinking “God, I have helped the least of these…may You bless them and protect them during this journey they are walking on.”  Then, I went to bed cause I was tired LOL.  I have not had a little one here since Daniel, and he was 2 1/2 when he moved in.  Jude was 5 when he came home.  To thrust me into little people clothes and diapers…..no thank you…I am good LOL.

Oops, We Missed One

Fast forward just a little bit to November 2015.  See, K and J had a little brother, Hunter.  He was living with, whom we thought was his father, but in reality, he was not.  His mom, my niece, was living in the streets wheeling and dealing and drugging.  Broke our hearts.  My heart broke for this little dude.  I knew my sister and her husband were working full time and had a toddler and a 5 yr old who are both dealing with PTSD and severe trauma from their beginnings.  Could she take on a baby who was 21 mths old?  Yep….would she go bald and run down the road naked screaming at the top of her lungs?  Yep.


I talked to Big Daddy, my kids.  Also, I spoke to my other sister and my mama.  Then, and only then, did I talked to Kim.  One of the rawest, difficult, blessed events that have occurred between us.  We cried.  She agreed.  Niece agreed.  Judge agreed.

What On Earth Am I Thinking

So here I am, just turning 43 yrs old.  One out of the house, one almost in college, one in high school, one in middle school, two in grade school and a baby…..a baby who wasn’t rocked that often.  My life consisted of standing in the baby aisle crying because I didn’t know what he needed.  Sippy cups.  Diapers.  Baby toys.  Diaper bags.  Smooshed up foods.  Car seats.  My van didn’t accommodate everyone.  Oh.  My.  Stars.  What have I freaking done!  I have a BABY!

So Much More to this Inter-Family Adoption

There is SO much more to this story.  Sadly, there is still so much fighting and many days in court.  There have been many tears.  So many “thank yous” from my sister and her husband.  Also, so much therapy and so many hospital stays.  So.  Very.  Much.  You can read, from my sister’s perspective here on her blog Mom By Proxy….and God’s Grace.  We “officially” adopted him right before Christmas, last year.

Reflecting on Contentment

Through It All…His Eyes Were On You

Through it all…..God knew what He was doing since before He created the Earth.  He knew how my family would be shaped.  That my relationship with my sister would be healed.  Also, He knew that I would be in my 40s still raising babies.

Straight Up Joy

This boy……..this baby………he has bound my crew together.  He has changed one of my daughters.  My little dude has his biggest brother wrapped around his little finger.  He is loved so deeply and completely.  His laugh, smile, and “I love you, mom.”  The fact that he says “daddy you are my favorite.”  Also, that “Mamaw is my girlfriend.”  His imagination, drive, and determination is to behold.

He is my joy, the calm in the storm.  That little dude is my baby and he melts me.  Am I finished with babies?  I don’t know.  Grandkids are in my future…one day….but so may a little one who needs a family.  We shall see what God wants.  Till then, I will NEVER utter the phrase again “Lord, I am content.”


Reflecting on Our Family and Community

As I sit here, Reflecting on Our Family and Community, I get a bit teary.  During Hunter’s onset and 2-week hospitalization, people came out of the woodwork to help.  The, quite literally, became the hands and feet of Jesus for our family.

Family, Friends, and Friends by Proxy

My sister arranged for people to bring ME food/supplies to the hospital.  Also, my uncle and his sweet wife came and visited us.  They brought toys, food, money, and just was a presence for my weary mind.  My niece and daughter came.  They brought food and toys for Hunter.  Hunter’s MaMaw (my sister) drove up and stayed for the day.  She brought me my granny’s quilt and my favorite pillow.  Big Daddy came up for his birthday/father’s day to stay with us. My daddy made me a beautiful, hand stamped leather strap that said: “trust God hold on.”  We had friend’s that were just visiting Louisville and popped in with treasures.

On the Home Front

Our church provided prayers, helped with kids, donated money, and a food train.  Then there was Ms. Marcella founder of Marcella’s Kitchen.  She and her team of volunteers are an amazing blessing to our family…they have graciously fed our family for a month while I was gone and when we got home.  They even brought it to my house 5 days a week FOR FREE.  Just to help.

Marshall County Ramp Ministry

This group of people did not hesitate to come out to my home.  They got this ramp done in no time in order to help ease our transition from what we knew as “normal” to our new normal.  Seeing your baby go from running and playing to using a gait walker is beyond comprehension.

I cried when they came.  There were even more tears when they lovingly built this ramp.  Then, there was a flood of emotion watching Hunter navigate with his new walker.  The walker eventually turned into a wheelchair but by the grace of God.  He no longer needs assistance walking.

Here is part of the Marshall County Ramp Ministry Team.  What a blessing.

Reflecting on Our Family and Community

This picture was taken almost 2 years ago, right after his diagnosis.

This was taken 4.9.19

God is good!

We are, generally, the givers and doers.  The hands and feet of Jesus, so to speak.  So this is all new to us.  This is not the path we would have chosen for our family.   It is what it is though.  I will not love Jesus any less for this trial we are walking through.  Most days, I do not say “why us”…I say “why not us.”   Who better to walk this path than our family.  We are being taught great things.  Also, we are being blessed right and left.

I want to say that we are humbled by the graciousness and love.  We would love for this illness to just be a season of our lives, but it may be our new way of normal.  It is in hope that, one day, when we get used to our new life, that we will be able to serve others in the way we have been served.

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Reflecting on the Call and the Prophecies

Reflecting on the Call and the Prophecies

Reflecting on the Call and the Prophecies of 2016 and 2017.  Gracious, so many fleeting thoughts swirling around in my head.  We are coming up on the 2-year mark of Hunter’s condition.  Wow…2 years.  He has been “sick” longer than he was “well.”  That thought hurts my feelings.

When Our Journey Began

Anyway, our story started in November 2015.  Our family had just left our church.  We had been there for about 5 or 6 years.  Things had begun shifting, and we just felt like it was time to go.

It is *so* weird “visiting” churches when you have a trans-racial, large family.  We visited lots of small, country churches and we stuck out.  My kids ranged in age from 21 mths (Hunter had just moved in with us) to 20 years old…with some extra kids occasionally.  Needless to say, we were noticed by everyone.

The Crazy Church

Finally, we yielded and went to the church with the “crazy people.”  I think about at that statement and chuckle a bit.  We knew the pastor and his wife.  Also, we had some sweet friends that went there, so we knew that there would be friendly faces.  There was also zero pressure to be a certain way or do a certain thing.

Yes, things were different.  The music was LOUD.  People were everywhere, the place was packed.  What struck me the most, that first visit was the multicultural array of people I saw worshipping.  Blue-haired people, Pink-haired people, bald, old, young, Catholics, Baptist, Methodist…all generations and all denominations.  All these people were raising their hands, singing and worshipping.

We Swore We Would Never Go Back

But…then we went back.  Again and again.  Richie (our pastor) was solidly bringing the Word.  It was no longer “watered” down grace we were hearing…it was the solid Word of God.  The praise and worship team was terrific.  We still struggle with some aspects, but overall, the Spirit moves freely, and we are learning at rapid rates the Truth…finally, after 26 yrs of being with this man.  We are under Truth.

People Watching

Before service started, there was a welcome, and then our pastor called up a man because he had a “word” to give some people in the congregation.  We have learned that this is somewhat normal but still very abnormal to our family.  This is something we just were not used to.   So, we sat, and we watched this man pace back and forth in front of the congregation.

I am a people watcher/reader, and the thing that caught my eye was the fact that he never opened his eyes when he was pacing or talking.  He kept touching the insides of his hands.  You could tell that he was uncomfortable but being obedient. He said that he had had this word from the Lord.  Also, he wanted to make sure that it was, indeed, from Him and not from this man’s flesh.  However, he realized through his sleepless nights that this was from the Lord and he had to be obedient.

The Word

He said that he had a word for someone in the congregation and so we sat, listened and watched him pace.  He made his way down the aisle that we were sitting on and he stopped in front of Big Daddy.  I felt like all the oxygen had been sucked out of the room and my mind was whirling.  He asked Big Daddy to stand up.  I looked up to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay.

This man, whom we had never seen or met, told Big Daddy to hold onto his hand.  Now, Big Daddy is not a tiny man, and his hands are ginormous, so when he stands, he is noticed. This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go.  To trust and just hold on tight.”  I felt an energy move through me and tears flowed freely, which I don’t usually cry or get swept up in my emotions, so this was strange to me.  The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Documenting The Moment

As we sat down, I recorded the date in my Bible.  I also wrote down with this man said, to be sure I didn’t forget.  We had never had that happen to us before, ever.  It was the most bizarre thing ever.

Little did we know, what was coming down tracks.

New Year, New Beginnings

2017 started out with a bang.  My daddy had quadruple bypass surgery.  Then, my niece was sentenced, and my nephew was close behind her.  My daughter went to military school due to behavior.  Also, we had a family issue involving another baby that was devastating.

Oh, let’s not forget my oldest daughter called off her engagement.  She was downsized at work.  We were also fighting with insurance companies for my son’s surgery that he needs.  Also, we need to add that my Lady was sick. Soon, she decided to go and be with Jesus.  Then, the straw that broke the camel’s back happened.  Needless to say, we were reminded to “hold on” a lot throughout the first 6 mths of 2017.

Wait, There is Even More

During the incident involving a family member…Big Daddy and I were trying hard to win a case, and it was merely out of our hands.  We knew what we could do to help the situation…we were willing…but it was not our call.  As I spoke to a friend of mine, she said that I needed to “hold onto hope.”  She also said that the Hebrew meaning of “hope” is “rope,” so hold onto the rope.  I caught my breath, and I texted her back and asked her who had told her that.  She said it was a word from the Lord to me.  I asked her if she knew the man that had said the same thing back in December and she did not know him. That is twice, the Lord has said to “hold on.”  I felt like we had held on pretty well.  Until…

My Sister Called on a Tuesday

She NEVER calls on a Tuesday.  We talk on a Monday and then sometimes towards the end of the week.  But on a Tuesday?  What the heck?  The date was Tuesday, June 6, 2017. I asked her if everything was okay.  She said they were but that she had woken up to an odd text.  She said it was from a friend, a former neighbor, that she used to walk with. That friend said that the Lord placed my name on her heart and that she was praying for me.

I have never met, spoken too, or even seen a picture of this woman.  She merely knows me from what my sister had told her.  I’m sure I wasn’t the topic of every conversation…although I am awesome like that.  I felt like my stomach just jumped up into my throat.  I told my sister I did not like that and that meant that something was fixing to happen.  My sister told me to take it as a blessing, but I was unsettled.

Rogue Zebra Spotting

That Tuesday, after a nap, we saw a rogue zebra in our living room.  All the pieces to my puzzle were being revealed…one piece at a time.

So our journey moves on.  The prophecies continue to flood in and the and the word HOPE continues to permeate every facet of our lives.

Enjoy the Concise Reflections of how our lives were turned upside down by our 7th child simply taking a nap on June 6, 2017.  Welcome to our reflection journey.

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When Life Gives You Lemons

When Life Gives You Lemons

Squeeze the Crap Out of Them and Smile

When Life Gives You Lemons, squeeze the crap out of them and smile.  Today has been an emotional one for me.  There has been nothing spectacularly bad happen, just somedays, the magnitude of everything hits me.

Mondays are therapy days and we are SO blessed to have such a great team of therapists that work with Hunter every single week.  They keep a smile on their faces and they encourage Hunter (and me).  We all work well, as a unit, to accomplish the greater goal of seeing Hunter succeed.

Heading to Horse Therapy at Cassidy’s Cause

Tears flowed, as we headed to therapy today.  I just couldn’t keep it together and I can’t stand it when I’m overly emotional.  Hunter was good, ready to go, and happily singing to the music we were playing.  I, however, just let the waterworks flow.

We got there and our OT came with a smile on her face and new blocks to play with.  We worked on getting his Theratog on (what a crapfest that thing has been) properly.  Then, towards the end of the session, I asked the unthinkable.

Do you believe this is helping him?

Our OT is phenomenal.  I mean tenderhearted, great at her job, sincere, loving, God fearing…she is awesome.  She said what I was already feeling.  I believe this is what makes our team good.

She knows the flu season is coming and Hunter cannot get sick.  As well as, she sees the ebbs and flows of his condition.  All the way, teaching me techniques and toys that can help him.  We discussed just taking a break.  She knows I need it.  Just a mental break.  There is also the knowledge that we do work with him here.

Next Up:  Speech

Our SLP is the bomb.  She is firm but good.  The diligence of this woman and how she thinks outside of the box, for Hunter, amazes me.  We had the same conversation, only this time, I lost my composure.

She quietly asked if I wanted to go to another room and then I just sat there and cried.  The kindness this woman showed me humbles my heart.  As she said, “I even buy the good tissue for moments like this.”  LOL.  Another God-fearing woman in this facility.  She walks it and talks it.

We talked about what the OT and I talked about and she agreed.  Again, we are going back in January, but she knows that I’m so tired.  We have worked so hard and the ebbs and flow of ATLD1 is just a beast.

Tony Stark

Last up, is PT.  Tony…I am his fangirl.  He is simply the best PT we have ever met and we have met several.  Tony Stark is not his name, but that is the name that Hunter gave him from day 1.

He is our Ironman.  He has let me sit and cry, while he plays music in the background.  I kid you not.  We have brainstormed, tried new techniques.  I’m not afraid of his suggestions and he is open to mine.

Tony has taught me a level of patience I didn’t think existed.  He loves Jesus, his wife, and his boys.  He loves theatre, music, acting, dancing and his talent for working with his patients is amazing.

Again, he agreed.

horse therapy

Coming Soon

Well, January to be exact.  We are taking a break from our 3 hr per week therapy sessions.  In January, we will come back, retest and regroup.  I am hoping to be refreshed.  Hunter will *almost* be 5 by then.  I’m hoping that he will have gained some weight, as well.

Until then, we are going to be going to Cassidy’s Cause.  It is a Horse Therapy in our local town.  As Jesus would have it, Hunter will get to be in the same class as his sister.  He will get to see her, his brother, and his Mamaw.  There is a strong possibility that his Jojo and Papa will be there too.

Our big kids get to go and volunteer so this will be an all-encompassing family outing every week for an hour.  I’m thrilled at how this will help Hunter with his core and strength.  It will also strengthen the bond between siblings, grandparents, and great-grandparents.

Kick Some Butt

When he comes back to his Power of 3 team, in January, he will kick some butt!  He will show the doctors that he will grow, succeed, and beat this terrible condition.  God is good.  I’m so blessed with the people that have come into my tribe to help my boy.  Until then, we do horse therapy and watch how his ataxia improves.

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Prepare for Rain and Blessings

Prepare for Rain and Blessings

While I prepare my “fields” and the blessings that will come, I can finally say:

“Okay, Lord…I get it.”

Therefore, I’m preparing for rain.


This mountain IS moving.

In fact, it HAS moved.

God.  Is.  Bigger.

Now, my job is to thank You for what You have ALREADY DONE.

Amazingly, Hunter has been healed.

But for now, we wait for that healing to manifest in his body.

His healing is finished and complete because he is created in the image of Christ.

Now, I prepare!

A Twinge is in the Air

Faith Like Potatoes

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Fall is Finally Here

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Fall is Finally Here

Fall is Finally Here

Fall is finally here and guess what?  It brings the rain.  That’s okay, we need it and I love a good gentle rain with a nice breeze.

Waking UP is Hard to Do

This morning, I woke up with a start.  I never heard Hunter make all the sounds that Hunter makes when he is up. Going to bed too late, taking 2 Aleve for a toothache, and the rainy day made me oversleep.

When I looked at the clock and it is 10!  Next, I turned over and saw Hunter staring at me.  Then, I turned back over and Big Daddy was still in bed, with his breathing machine on.  I had a brief moment of panic.

Then I Realized

It was Saturday.  We had nowhere to go, nothing planned, nothing to do.  Hunter did not necessarily need a nap, so allowed my body to relax again.  Big Daddy got up with Hunter and I fell back asleep.

This time, I woke up at 11:30.  It was really nice.  Well, that part was nice and then I had a meltdown.  Hunter came back upstairs to snuggle.  I realized, as he lay next to me, his body was shaking.

My Heart Began to Ache

We have done all that we know to do.  He has a Neuro that says nothing can be done.  There is a “movement” specialist, who just wants to observe him.  The FL dr, who is so expensive (but worth it).  Then there is the Amish dr who prescribes these horrible tasting herbal remedies.

Let’s not forget the Theratog, the weighted vests, the special diet, the vitamins, the chemo, the IVIG, and the ACTH.  That would be awful to forget those things.  We have had him prayed over, blessings released over him, people come over to pray for him.  There are strangers who see him out, ask his name, and say they will pray for him.


God does not move.  Maybe He is moving and the flesh of my eyes just cannot see Him.  All I see is shaking.  I see him falling.  Him wanting to feed himself, but can’t.  My eyes move to him trying to get a drink and blooding his lip because he shakes so badly.

I do not see God moving.  Maybe I’m not looking hard enough.  Selfishness, maybe I’m selfish because I desire him to live a normal 4-year-old life…yet he doesn’t.  Lack of faith could be an answer for me.  Hunter has faith, I know that.  There are people around me who have faith, but maybe I lack it.


I have to remind myself that I may not “see” God moving.  Somewhere, though, He is because that is His promise.  Refocusing is what I need to do.  I do not see the wind, yet it is windy today.  I can go outside and *feel* the wind on my face.

That could be it.  I need to *feel* Him again.  Anger has hardened me, in some way.  It makes me not want to feel anymore because not feeling is easier.  Emotionless, that is how some people describe me.

What You Don’t Know

Is that I’m overly full of emotion.  I just don’t show it to every Tom, Dick, and Harry that passes me by.  Emotions are kept close to my heart.  When I feel safe, I can release them.  Most of the time, I do it alone.  Just me and God, having it out, lots of yelling (mainly by me).

Occasionally, Big Daddy will catch a glimpse.  Rarely, do my kids see it.  They have enough of their own stuff, in dealing with Hunter’s condition.  I will not let them see me lose my crap.  My job is to comfort them and encourage them.

New Season

A new season is upon us.  I’m excited.  The cool, crisp air of fall is my favorite.  I can still picture, driving up my grandparent’s hill, seeing Grandaddy sitting on the porch.  He’d have his jacket on, with the collar pulled up and his hat pulled down.  His eye would narrow on the cars that were passing by beyond the hill.  He loved the fall.

The old is passing away and it gives everyone a chance to just rest in the quietness of life.  Then, with spring, comes new life and new beginnings.  I encourage you all, to bloom where you are planted.  Where the Lord plants you is created perfectly for who you are and what He has planned for you.

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