Guest Blogger

The Reality of my Nightmare

The Reality of my Nightmare

In The Reality of my Nightmare, my guest blogger writes about her interpretation of the trials I have been walking through.  She writes it as if she were me.  I read it the morning of my friends funeral.  She is pretty spot on in all that she said.

The Reality of my Nightmare

Writing this seems like a nightmare

I am waiting to wake up from this nightmare because of how real it feels. But when I open my eyes, it will all go away. No. This nightmare is real. I can’t believe this is happening to me. Why? Why me? What did I do wrong to cause these people to knock on my door? Who has been watching me and observing my every movement?

I am afraid

Afraid to raise my voice even the slightest bit because someone might be watching. Also, I am afraid to take my child to the other room for fear that someone might think I am going to punish them. Afraid to go out in public with my child for fear that someone will judge me the wrong way and call them again. Why me?

Raising Kids

Raising kids is hard, especially 7 of them. They are all so different in so many ways.  Yet, I would not change a single hair on their head because I love them so. I love my kids with every fiber of my being. I would gladly take any strife or burdens off their shoulders.  Honestly, I would put them on my own if it helps them and their future.

My kids are special

Some have mentally challenging issues.  Then, there are others who have some physical issues that need my constant attention. Being a mom is hard. Tiring even. Yet, I am glad God chose these beautiful children to be mine.

I love fiercely and I will do anything in my power to protect them from the world and its temptations. Sometimes, I help others before I think about myself and my needs. I have run myself ragged going in all different directions to help those in need as God calls me to do. Honestly, I try to open myself up to other moms in different clubs and organizations that my kids participate in. I try to help them and converse with them when they need a friend or a shoulder to cry on.

But You

You took care of my child when he played sports on your team.  He became best friends with your kids.  I thought you loved him like one of your own. He stayed at your house and slept over so many nights.  Every time, he had a blast when he came home beaming from ear to ear.  He would tell me all about how fun it is at your house.

Invitation then Betrayal

I invited you into my home which we manage to keep clean amongst the chaos of having multiple children and animals in the house. And yet, you betrayed my trust by calling them. Why? Why me?

You know my child is well-fed.  We give him clothes and things to play with.  Furthermore, we keep him involved in sports. Importantly, we teach him the love of Jesus in everything we do. We fight for him daily because he is different. And that’s okay because I love him so much.

How Would You Feel

You are a mother with kids of your own. How would you feel if someone called them?  They showed up at your doorstep asking to be invited in.  Then ask you probing questions about your home and relationships with your kids? And what if you found out that it was a supposed “friend” who called them on you.

How would you feel?

Betrayed?

Confused?

I should hope so.

Because that is how I felt.

Terrifying Agony

The terrifying agony that my kids could be ripped away from me with no warning. Sadly, the wailing and uncontrollable sobbing happened in my car when I got the call. My heart can’t take it anymore.  I am so tired of having to justify myself to these people. Justify every action that I do and every word that comes out of my mouth.

How would you feel?

Would you demand an explanation from your “friend” and say some nasty things to them in retaliation? Would you constantly be looking over your shoulder to make sure no one was watching you if you ever had to punish your child in public? Or are you one of those parents that let their children run amuck and let them do whatever they want?

Either way, I want you to know that it is understandable if you did not know the family or if you had never been in their home and seen how the family operates. It would be understandable if you didn’t know me or my son at all.

But you did know us.

I was at every game. I talked to you all the time. And yet, you still called them. I thought I could trust you. You have betrayed my trust. But I choose to let God be in control of my situation. I choose to let God be the judge of your actions when you get to Heaven instead of judging you, which I am not called to do.

Honestly, I choose to love like Jesus with skin on and be the city on a hill for you. I choose to let God listen to my sorrowful prayers and collect my tears in a jar. Furthermore, I choose to let God pick me up and comfort me because he knows I am the mom He called me to be. I am not perfect. But God does not call us to be perfect. He calls us to be his disciples and to love our neighbor in his Word.

My house may be messy sometimes and my kids may drive me crazy most days, but in what reality is a house always tidy and the kids always clean and well-behaved? I would love to meet those people and that family.

Haven’t you ever made a mistake as a parent?

Because if you say no that is a bold-faced lie. We fail daily at things but the key is to learn from those mistakes, move on, and leave the past behind us. Those failures are also successes. I have put several of my kids through a full education (and I have homeschooled them for many many years as well).  Two of them have graduated from college, with honors, which is a huge accomplishment.

Mama Pride

One of my kids is married with a baby on the way.  I could not be happier for my sweet child. My smallest child is excelling at things that doctors told us would be impossible.  Yet, with me by his side, he has survived those odds.

The moments of pride I feel for the children that I raised surpasses the moments of sadness that I feel when things like this happen. I choose to find the beauty in the ashes. I will stand tall and not be shaken by people’s opinions of me and my family.

My Choices

So I will also choose to continue to stand by my children and attend every activity, club, and sporting event that they are in. And if you other moms judge me or whisper tall tales about me that are not even true, I will smile and turn the other cheek as God has called me to do. Even if it is the hardest thing I have ever done.

Cruelty of Others

People can be so cruel nowadays and they always look at the plank in someone else’s eye rather than focusing on the speck of dirt that is in their own eye. Words can definitely slice through a person and bring them down when we should be standing together as moms and supporting one another rather than bringing them down and jumping to conclusions by calling the organization before they have the facts straight.

No, we mom’s are not perfect. But we are doing the best we can with the circumstances we are currently in and with the children that the Lord has blessed us with. I will continue to be the city on a hill and shine my light bright for my kids and for you.

And I know deep down in my heart that God will be pleased with my strength and integrity, and when I get to Heaven He will say, “Well done, my good and faithful servant.” I can not wait for that day to come.

In the meantime

I will continue to be the most amazing mom to my kids and be a faithful spouse to my husband. Showing them the light of God.  Continuing to shield them from the World will be a lifelong journey, but I would not change one thing about it. Not for you and not for any other mom who says a spiteful word towards me.

I will pray for you even though it is painful. Because in my darkest moments is when I cling to Jesus the most, and when my faith is tested, I come out stronger than ever because my Redeemer is with me. No more hiding. No more fear. I will not be afraid.

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Update on my Family

Update on my Family

Update on my Family

Well, I guess it is time for an Update on my Family.  It has been a while since I’ve given one and I guess it is long overdue.  Can I just say, I am SUPER glad September is over!  That whole month weighed so heavily on my heart.  Reading the stories, reflecting on my journey, and just allowing myself to feel.  Suicide is a real thing and it is out of control if you ask me.  Please, check on your friends and family.  Spread love and kindness.  Help.  Be an ear.  God is so much bigger than that moment of uncertainty!

Bug & Ben

They are still married (yay) and are doing well.  Still young, still got a lot to learn, still navigating all the things but all in all, things are good.  They are both working from home, so that is a LOT of togetherness!  In that togetherness, they forgot to be socially distant and are now expecting a little one.

Let me repeat.

They.  Are.  Expecting.  A.  Little.  One.

One more time for those in the back.

I AM GOING TO BE A GRANDMOTHER.

Breathe.  It’s fine.  I’m fine.  Breathe.

Don’t get me wrong, Flash and I are excited to meet each other.  Hunter named the baby Flash because well, he is 6.  We don’t know if it is a boy or girl.  Honestly, I could care less.  I used to think that was a crock of crap when people said that.  Now, I get it.  I truly don’t care.  So, I am going to be Lolli and Big Daddy will be Pop.

Get it?  I wanted us to be Harriet and Nels or Alice and Mr. Edwards.  Only Bug agreed with that, no one else did.  Whatever.

Peach

My girl did it.  She graduated college with her Bachelor of Science.  Sadly, her last semester had to be done virtually because of stupid co-vid, but she did it.  Come November, she is walking for graduation.  I could not be more proud of her.  I mean, geez.  She is brilliant and beautiful.

Trying to find that “big girl job” has been tedious, but she is working.  It is not her dream job but that will come.  She really is good at what she is doing, it is just hard emotionally.  Her niche is geriatrics.  She loves the elderly and has such respect for them.  The love and grace she shows in working with them…the respect.  She is her mother’s daughter.

Echo has a friend now.  My Ted moved in with them and so did Maureen Kitty.  She is a plant mama and has a cute little apartment that she has decorated so pretty.  This girl of mine…she is going places (just not too far from me!)

Gigi

It’s been a hard summer.  Honestly, it’s been a hard 13 years.  I am not going into any detail because my head and heart simply can’t.  This month, she will be attending school, away from us.  She will be learning a trade and life skills to move forward in her life.  This has been a hard decision for us to make but it is necessary.

For 2 months, we were blessed with the best gift, at the perfect time.  A friend offered to let her come to her house for a couple of months to let life settle a bit.  It gave us all time apart to heal and reflect on what is best for her and the rest of our family.

I pray the Lord guides her every step.

Boo

Well, he still has a female friend and has mentioned moving out.  As I choke back on my vomit and tears, I now refuse to discuss it.  I was pretty good about the girls moving out, but why oh why am I struggling.  Geez.  His little female friend has captured my heart.  She is a sweet girl, though we often talk about making space for Jesus when they sit too close to each other!

He is still in college and loving it.  I think he wants to be a sports journalist.  He loves sports and he has discovered that he loves writing.  In his job, he left his first job for another and then left that one for the first one because he was going to be promoted.  He is a hard worker but his room is a pigsty.  I just don’t get it.

Catfish

Due to the events of the summer, D is away at school until December.  Some things occurred where it was necessary for him to be away.  I email him.  He writes (when he remembers) and he calls every Friday.  Some are good calls and some, he just misses his mama.  I sure do miss him but I know he is learning so much.  Thankfully, this school is geared towards the career that he is wanting to pursue.

Sadly, he got co-vid (well, he and 13 other boys).  That was crappy but luckily they were asymptomatic.  We have had to send him a lot of soap LOL and shoes.  He is wearing them out!  Thankfully, he is learning and working through the events of this summer and processing some of his choices.  I am super proud of him.

Jude

He doesn’t have a nickname…wonder how that happened?  I’ll have to think of one.  He is “virtually” schooling from August until December.  I am hoping he will be back in school in January.  The past year, we have been struggling and fighting to figure out what has been going on with him.  This summer, we finally got our answer.

He has Functional Neurological Disorder.  In normal terms, he has narcolepsy.  Let me tell you, it is not like what you see in the movies.  It has been so hard.  In the midst of all the testing for Idiopathic Hypersomnia (which turned out to be FND), we stumbled on Epilepsy.  Yep, you read that right.  He also has Generalized Epilepsy.

Triggers

His triggers are stress and lack of sleep.  We have had TONS of stress this summer and he has narcolepsy, so there is your lack of sleep.  He had his first grand mal seizure and that is something I never want to see again in the history of ever.

Kid

Good grief.  He is busy.  So.  Very.  Busy.  He talks.  All.  The.  Time.  He is virtually schooling and doing pretty well.  Amazingly enough, he has promoted up a reading level…to HIS reading level on HIS grade!  He is reading so well.  Treatments are going as well as they can.  His OMS is still there and prevalent, but he compensates like a beast.

He is getting so tall and loves being outside.  His favorite thing to do is run.  “Mom, I just need to run.”  I can think about it when he was in a wheelchair.  Most days, I just sit and watch him run back and forth through the yard and I smile.  This child is fearless.  He brings joy to my heart.

As For Us

We are healing, as a family.  Big Daddy is adjusting to working from home.  I’m looking at going back to work part-time.  We have A LOT of kittens.  When they are weaned, we are getting the mama’s fixed so we don’t have to worry about that anymore.  I know you want to know their names…right?  In no particular order:

Karen, Inez, Joan, Janis, Joplin, Lloyd, Linda, Lonnie, Ronnie, Roger, Kim, Pat, Wenago, Tibebu, Ephraim, and Bart.

So freaking cute.  I love cats.

I guess that is all for now…until next time.

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3 Years Ago Today

3 Years Ago Today

3 Years Ago Today

At 4:30 pm, 3 Years Ago Today, our lives changed forever.  Opsoclonus Myoclonus Syndrome began to rear its ugly head.  Our lives were altered.  There has not been one person, in our home, that was not affected by this devastating condition.

This day comes and goes, for most people.  In our world, today, we see Co-Vid19, racism, and protests.  It seems like everything is falling apart.  In lieu of those horrendous things, I stop today and give thanks that my son is still alive.

Treatments

In the course of 36 mths, he has had

  • A bazillion IVs
  • 28 IVIG treatments which equal almost 250 hrs in a hospital
  • 2 Lumbar Punctures
  • 3 MRIs
  • 1 EEG
  • A bazillion labs
  • The second highest genetics battery of testing
  • 5 diagnosis’
  • 46 ACTH shots in the thigh
  • Countless high dose rounds of Dexamethasone
  • 3 rounds of Chemo
  • 5 hospitals
  • Countless stays in said hospitals
  • A Make A Wish trip
  • Wheelchair-bound for months
  • Gait walker dependent for months
  • Ramp installation
  • Multiple rounds of high/low-frequency acupuncture
  • Bioimpedance
  • Amish Iridology
  • A death sentence

My Son

He is a warrior.  This child has been prayed over by hundreds of people.  Donations have helped us travel many miles to seek help.  Many tears have been shed.  Faith has been torn down and redeveloped.  Hope has abounded.  In 2017, our lives changed.  2018, we were given a new diagnosis and told to take him home until he “succumbs.”  In 2019, we got the “old” diagnosis back and were given hope.  Now, in 2020, my baby is not only alive but has graduated from kindergarten and lost 2 teeth.

How I Feel

My gut aches.  I am physically ill at the pain that he has gone through.  There has been great pain.  No one will ever know what he and I have been through together.  There is a bond that we have because through it all, it’s been Hunter and me.  Bart has been amazing.  He goes when he can.  The support, love, devotion, and still have to deal with other kids and a full-time job.  My children.  Family.  Church.  Friends.

I know Christ died on the cross to heal Hunter.  It just has not manifested, completely in his body.  We still do treatments every month.  He still struggles in some areas and tremors are always there.  We still worry about when he gets sick and a flare-up.  I still carry around the “what-if” guilt.  It is still there and I am now praying for deliverance for that guilt.

My Baby

He is busy.  Mouthy.  He pees on kittens occasionally.  There are still some fits, tremors, eye twitches, and speech issues.  Yet, there are no more rages (praise God), no more ACTH shots, no more OCD (for the most part) issues.  Treatments are easier because he is a pro at getting an IV.  Meds are taken with grace and not a fight.  He is aware that he has OMS and is learning about his condition.

My baby runs, plays baseball, jumps, dances, and says things like “Taco Tuesday and Hump Day.”  He has changed his name from Hunter to Kid to Mario.  I’m no longer “mom” because that is old, done, gone…I am not Princess Peach.  He apologizes when he is wrong.  Loves to have me smell his hair and say “it smells like rainbows and sunshine” after a bath.

He is alive.  Death from OMS is not in his future.  God has big plans for him and He has allowed me to be front and center.  The phrase God is good all the time and all the time God is good runs through my head.  I never thought I’d be able to say that and mean that again.

Yet…He is good.

 

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Read His First Book

Read His First Book

Read His First Book

Bob books are amazing!  And Hunter Read His First Book with the help of them!  It is no secret.  I hate teaching kids to read.  It is so mind-numbing for me and frustrating.  Yet, I press on and I teach.  I’ve taught every single child to read.

I pulled this out because we had been working on -at words for a couple of weeks.  We recorded him reading it so we could send it to his teachers.  He was so proud of himself and we are so proud of him.

He gets the sound it out and runs it together mode of teaching to read.  My other kids didn’t necessarily get that concept. Also, I do not teach phonics because NO WAY.  We are going to try and video it again so I can post it here.

Gearing Up

He has treatment this past Friday, so I am mentally prepared for that.  Sadly, he is also aware and so his behavior has been off.  He is more anxious and less willing to do things.  I hope he will read it again.  As he does, the book becomes easier to read and flows better.  Honestly, it gives more confidence when things just roll off the tongue.

Either Way

My kid that was not supposed to be here is still here.  He is still playing, learning, loving, and now reading!  I can honestly tell OMS to kiss my a$$.  It has no power over my son anymore!

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Hunter’s Song

Hunter's SongHunter’s Song

Hunter’s Song.  Excuse me, I may have to cry…it will only last a moment.  Songs of Love Foundation is such an amazing foundation and worth every penny of any donation of support they get!

About Songs of Love

The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical, or emotional challenges. Each “song of love” is professionally produced with lyrics containing the child’s name and references to all of his or her favorite activities, things, people, and pets. Songs are written and performed in any language in the musical style that the child likes best (kids, pop, R&B, rap, rock, alternative, etc.), by many talented singer/songwriters. Each “song of love” is delivered pre-loaded on our Song Of Love USB 8GB drive.

As each child is unique, so is every “song of love” composition. Since 1996 the Songs of Love Foundation has reached out to over 33,000 children in over 500 hospitals and health care facilities in all 50 states and the world.

There is much focus on raising awareness and money in order to find a cure for a variety of life-threatening illnesses and lifetime disabilities. The immediate needs of children who go through serious medical and physical challenges are often overlooked. The “songs of love” have often been played to alleviate pain and trauma during painful and scary hospital treatments. The song recipients have played their “songs of love” in all kinds of situations and settings.  Such as car trips to the hospital, show and tell at school.  Also for family and friends, and even for the doctors and nurses. The children have their “songs of love” always available to them whenever they are feeling down.

How I Heard About Them

I am in a support group for OMS and my son also went through the Make a Wish Foundation.  This little flyer was in our packet when we left.  It is a simple little sheet and it was free.

I filled it out and sent it in…in return was something that brought tears to my eyes and absolute JOY to my son’s ears!  He LOVES his song and asks for me to play it all the time.  Please, click on the link and listen!  Go to the Songs of Love Foundation and see if you, your child, or someone you know could benefit from a little happiness and joy.

Here is his personalized song.!

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When OMS Roars It’s Nasty Roar

Thoughts from a Hospital Room

When OMS Roars It’s Nasty Roar

Folks, not gonna lie.  This week has sucked the life out of me. When OMS Roars It’s Nasty Roar it is very nasty, indeed.  What started out as a normal week has ended with an intense fear overtaking my body while OMS takes over Hunter’s little body.

Some Highlights

Monday, Jude had a baseball game at Carlisle county.  It is about an hour from us.  We knew that our oldest daughter would be out of town.  Therefore, we had our son-in-law over for dinner every night.  Because of that and the intense baseball schedule, Bart and I took shifts with who went to what baseball game.

Monday night, Bart went and I stayed home.  I had the rest of the kids, so we are doing homework and I’m cooking supper.  Tuesday night, I got supper done early and I hit the ballparks.  Lucky for me, at that time, I got eaten up with mosquitos.  Also, I had 4 ticks, the size of a pinhead stuck to my back.

Go ahead, be jealous.

Come Wednesday

The kids had to get up early because it was grandparents day at school.  Hunter’s Mamaw, my sister, came at 7 am to eat lunch with him.  He was SO excited.  She said that when she rounded that corner and he saw her, they each ran to each other screaming.  For real…how sweet is that?

She said he didn’t eat much and was quite upset that she couldn’t stay the whole day.  Luckily, they were having the book fair.  She ended up buying her freedom with a couple of books for him.

I quickly emailed the teacher and let her know that he didn’t each much.  It is imperative that ALL kids eat a good breakfast and drink.  For OMS kids, it is a requirement.  They can start a rage at any moment.  Water and protein help even out those brain waves.

Pickup Time

When I picked up the boys from school, Hunter ran to the van.  I noticed his voice was raspy.  Honestly, I didn’t think a lot of that because that is how I get when I am tired.  I asked him if anything hurt and he said that the back of his neck hurt.

He told me that Mamaw was at his school because she “needed” him.  Also, he said that he was sad because she couldn’t stay but she bought him books.  He had had a good day and asked if he could play the Wii when he got home.

I told him he sure could, but only after he rested his eyes.  He emphatically said, “mom, my eyes don’t hurt…my neck hurts.”  I understood his plight and told him that we would put oils on him.  He could take a little nap and when he got up he could play the Wii.

Thankfully, he complied.

The Rest of Wednesday

I wanted him well rested because that night, a daughter was bringing a boy around for us to meet.  We had had issues with another child the night before and this night.  So, there was no break between me cooking for the masses, the issues with a kid, and Hunter.

When he got up from his nap, he had a dry cough.  I checked his temp and it was a low grade.  Then, I noticed his eye turning in.  Watching him, his hands were shaking more and he was stumbling and falling more.

My gut was screaming but I had to keep it together until the end of the night.  We had to make it through meeting this boy.  We did make it through, by the skin of our teeth.  Started Tylenol and kept him home from school for the rest of the week.

ER Visit

This led us to the ER.  They were wonderful, in the ER, but I was not blown away by the doctors who were on-call.  Also, the fact that his regular neuro made no attempt at responding to any correspondence that I sent.  That was disheartening.  The nurses were amazing though.

We did IVIG and within about a month of his little cold, he began to return to his baseline.  This is scary.  A cold is usually gone in a few days with no lasting effects.  In Hunter, a cold sends him to the ER, and being unable to stand, hold anything, speak clearly.

We don’t know, at the time, whether this will last for a brief time or a longer one.  PTSD is in full force because this is the first time he has been sick since being diagnosed with OMS in June 2017.

We Survived

We are all doing our best to keep him as healthy as possible.  Yet, things happen.  Sigh.  This condition sucks but God is bigger.  I choose to keep my eye off the storm and onto the cross!

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The Key to a Successful IV

The Key to a Successful IV

The Key to a Successful IV

Here is The Key to a Successful IV.  Friends, neighbors, countrymen…lend me your eyes.  We have figured it out!  A couple of months ago, Hunter got a slight cold.  In a healthy child, that would look like a low-grade fever, snot, cough, just feeling yucky altogether.  In an OMS child, however, it is a different ballgame.

Flare-Up 101

When you have a child with OMS, which you likely do not because it is 1 in 5 million, a cold spells trouble.  First, I noticed his eye turning in slightly.  Then, I noticed a slight cough.  Next, I noticed he couldn’t hold a pencil, fork, or work legos.  Lastly, he would be standing up, with nothing touching him, and he would suddenly fall over.

This can last for the duration of the fever or it can last for an extended period of time.  Now, not every cold (God willing) will lead to this, but it is likely that it will.  So, tremors began and fear set up camp in my spirit.

ER Visit

We were not due for IVIG when he got this little cold.  Sadly, we get it in the chemo ward of the hospital so if he has any signs of anything, he can’t come for fear of getting another child sick.

We set off to the ER.  His dr was aware, though she made no contact with us during his illness, ER visit, or stay.  That will be addressed at his next appointment because that was not okay.  Also, I called the ER and told them I was on my way and what was going on with him.

Upon Arrival

We didn’t really even get triaged.  They quickly went through some basic things and then got us in a room almost immediately.  The nurses couldn’t even look at his chart because the on-call neuro was looking it over.  We were very pleased with our ER visit and the diligence and kindness each person showed us.

Decision of Admission

The neuro team decided to admit him for IVIG. This didn’t surprise me but I dreaded the IV part.  Hunter has some pretty serious PTSD because of all of this.  There are no amount of distractions that can prevent him from screaming his head off.  Though, they have tried and tried over the last 2.5 years.  It is almost always a nightmare.

The nurse came in and I immediately apologize for what is fixing to happen.  She totally understood and told me not to worry.  I told her that he was scared of white jackets, stethoscopes, gloves, the cleaning stuff, and a rubber band.  She smiled and said no problem.

Then Magic Happened

She took off her coat and stethoscope and also informed her helpers to do so.  As they came into the room, she asked me to watch her and her helpers thoroughly clean and sanitize their hands.

Then, she put in his IV with NO TEARS and NO SCREAMING.  Like zero.  He even watched.  It was the most bizarre thing I have ever seen.  He thrashes and screams as soon as he is touched.  Yet, this time…nothing.

Fast Forward to Not One but Two IVIG Treatments

In the last treatment and this one, I have asked that they not wear gloves.  I wanted to see if it was just a fluke.  Guess what?  It totally isn’t a fluke!  He has not made a sound when he gets his IV in.  It is the most amazing phenomenon ever.  Those parents with medically fragile kids will understand how exciting this is for me!

We have our IVIG routine down pat, though it is not our favorite thing to do in the world.  I wish he were well, but he is alive and I will take that any day of the week and twice on Sunday!

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Excuse Me While I Cry

Excuse Me While I Cry

Well…if you will Excuse Me While I Cry, I would appreciate it.  Hunter’s teacher, Ms. Kim, sent this to me last week.  He spelled his name by himself for the first time ever.  Let me explain the “by himself” part.

Hunter has Opsoclonus Myoclonus Syndrome.  His condition is 1 in 5 million.  It affects everything from speech to feeding himself to walking, excessive shaking, low muscle tone.  Basically going from a 3 yr old normal child to a 3 yr old newborn who shakes violently.

Backend of Condition

The “front-end” of the condition is what I described (oh so briefly) above.  The “back-end” of his condition is low functioning, memory loss, learning disabilities, cognitive, and sleeping issues.  Oh, let’s not forget the rages and fits.

Anyway, when Hunter holds anything to write or cut with, a teacher will place her hand over his and put pressure on it.  He has hand/wrist/arm weights and he does use those but he doesn’t like to.  So now, they just do hand over hand to give him stabilization.

When he wrote his name, he DID NOT NEED any hand over hand.  He copied the letters he saw BY HIMSELF.  Alone.  WITH NO HELP!  I feel like I am screaming.  Frankly and unashamedly, I am!

Let’s Just Keep on Going

Now Remember

A year ago, we were told to bring him home.  That he would succumb to his condition.  Now, he is learning, growing, writing, and spelling his name!  God is SO GOOD and so faithful.  I am in awe.

He chiggers me so badly somedays.  I mean, you all know a 5 yr old can get all up in your stuff and jump up and down on your last nerve.  Clearly, in this video, he was wound tighter than a drum.  Yet, the alternative as to where he was a year ago.  I will take this wild child over that sad little boy any day of the week!

Miracle Child

I had a doctor tell my other mom last week that he was a Christian but that the day of miracles is over.  That he could explain everything with science.  God didn’t do miracles anymore…that’s why He created doctors.

I just smiled and said, “You should meet my son.”  He didn’t have much to say to me after that. Here is a video of him a year ago.  Now, tell me that my God didn’t and isn’t performing a miracle in this child?

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Thoughts on Psalm 77

Thoughts on Psalm 77

These are my thoughts on Psalm 77.  Lots of emotions flowing through me.

Psalm 77

I cry out to God; yes, I shout.
    Oh, that God would listen to me!
When I was in deep trouble,
    I searched for the Lord.
All night long I prayed, with hands lifted toward heaven,
    but my soul was not comforted.
I think of God, and I moan,
    overwhelmed with longing for his help. 

You don’t let me sleep.
    I am too distressed even to pray!

Thoughts

Oh, how I have felt these emotions.  When Hunter goes into the hospital, I do not sleep.  Well, I get about 20 minutes of fitful moments when my eyes close.  That’s about it.  I hear everything.  When he hurts, I hurt.  As the nurses come in and do their job so quietly and so diligently…they do not see my eyes burrowing in on their every single move.

In his first 2 weeks, at the onset, I could not pray.  I had no words.  However, I had many people interceding for us.  All I wanted was for it to be over.  I wanted Hunter to stop shaking, be able to be a “normal” 3 yr old.  Yet, I felt God did not hear me.  It was almost like my prayers were literally hitting the ceiling and going no further.

Sadly, it was a hard time.  I lived moment to moment. Breath by breath every single day.  It has a little over 2 years now.  I tried to let my guard down for 5 seconds and guess what?  He got a small tiny cold and it ended up with him in the ER.  This time, I knew that my prayers went further than the ceiling.

I have equipped myself with Scripture, prayer warriors, and confidence that I know my son better than anyone…except for God.  He has healed him and this I know.  We have moments of flare-ups and he is not in “remission” but my whole thought process has changed.

Now, if I can get my emotions in check…that’d be something!

Section 2

I think of the good old days,
    long since ended,
when my nights were filled with joyful songs.
    I search my soul and ponder the difference now.
Has the Lord rejected me forever?
    Will he never again be kind to me?
Is his unfailing love gone forever?
    Have his promises permanently failed?
Has God forgotten to be gracious?
    Has he slammed the door on his compassion? 

10 And I said, “This is my fate;
    the Most High has turned his hand against me.”
11 But then I recall all you have done, O Lord;
    I remember your wonderful deeds of long ago.

Section 3

12 They are constantly in my thoughts.
    I cannot stop thinking about your mighty works.

13 O God, your ways are holy.
    Is there any god as mighty as you?
14 You are the God of great wonders!
    You demonstrate your awesome power among the nations.
15 By your strong arm, you redeemed your people,
    the descendants of Jacob and Joseph. 

16 When the Red Sea saw you, O God,
    its waters looked and trembled!
    The sea quaked to its very depths.
17 The clouds poured down rain;
    the thunder rumbled in the sky.
    Your arrows of lightning flashed.
18 Your thunder roared from the whirlwind;
    the lightning lit up the world!
    The earth trembled and shook.
19 Your road led through the sea,
    your pathway through the mighty waters—
    a pathway no one knew was there!
20 You led your people along that road like a flock of sheep,
    with Moses and Aaron as their shepherds.

Thoughts

As I read this, it is thundering and lightning!

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Psalm 47 & Proverbs 16

Psalm 47 & Proverbs 16

Psalm 47 & Proverbs 16

It has been a LONG few days.  Hunter came down with a simple cold on Wednesday afternoon.  By Sunday, we were in the ER.  Something so minor can affect a child with a life-altering condition so deeply.  So, I’m writing about Psalm 47 & Proverbs 16 from room 7525 while waiting for him to be released.

Psalm 47

Come, everyone! Clap your hands!
    Shout to God with joyful praise!
For the Lord Most High is awesome.
    He is the great King of all the earth.
He subdues the nations before us,
    putting our enemies beneath our feet.
He chose the Promised Land as our inheritance,
    the proud possession of Jacob’s descendants, whom he loves. Interlude

God has ascended with a mighty shout.
    The Lord has ascended with trumpets blaring.
Sing praises to God, sing praises;
    sing praises to our King, sing praises!
For God is the King over all the earth.
    Praise him with a psalm.
God reigns above the nations,
    sitting on his holy throne.
The rulers of the world have gathered together
    with the people of the God of Abraham.
For all the kings of the earth belong to God.
    He is highly honored everywhere.

Proverbs 16

1We can make our own plans,
    but the Lord gives the right answer.

People may be pure in their own eyes,
    but the Lord examines their motives.

Commit your actions to the Lord,
    and your plans will succeed.

The Lord has made everything for his own purposes,
    even the wicked for a day of disaster.

The Lord detests the proud;
they will surely be punished.

Thoughts

Oh, I have lots of words to say about ALL these verses.  Making our own plans…is that not a human thing or what?  There is another set of Scripture in James that talks about this subject.  It talks about making plans for tomorrow or next year…but who knows what is going to happen at that time?

Confusing Wisdom

There is a lady at my church who said the secret to learning to hear God speak is to not move till you have direction.  Okay. Well, that sounds easy enough.  She said that she would say “Lord, do you want me to do the dishes or not?”  Then, she would wait for an answer.  For the love…that would drive me bonkers.  Yet, she is 86 and is the most peaceful woman I know.

Getting Out of My Own Head

Maybe, just maybe I should give that a try.  There are days when I’m constantly on the go.  No rest for the weary.  Then, there are days when I do nothing but nap, read, and sit.  Idle.  We all know what the Lord says about being idle.  Honestly, I think it isn’t going to work and He isn’t going to speak that directly to me.  In the end, that is my lack of trust shining through.  Free-will sucks sometimes.

Verse 2

There are a few people that appear like they are the ultimate person in their relationship with Christ.  I mean, they do it all.  They FB or IG all these thought-provoking things, read all the books, go to church all the time, involved in church, just do all the things right.  Then, you get to know a different side of that person.  You “cross” their path in a not so Christlike way and BOOM those innards are as black as tar.

What do you do in a situation like that?  Let it go?  Shake the dust off your feet?  Smile more when your insides are aching at what the truth is?  Confront them in love?  I don’t know.

For Me

I’m not saying I have not had my moments because I absolutely have.  I am not proud of those moments, at all.  Sadly, I have worn “masks” depending on who I am around a good part of my life.  Then one day, I said enough was enough.  I try, very hard to be authentic, blunt (as a doctor just told me), and true to who I am.  Somedays, it is a challenge.  On those days, I stay at home and eat cheese.

Section 2

Unfailing love and faithfulness make atonement for sin.
    By fearing the Lord, people avoid evil.

When people’s lives please the Lord,
    even their enemies are at peace with them.

Better to have little, with godliness,
    than to be rich and dishonest.

We can make our plans,
    but the Lord determines our steps.

10 The king speaks with divine wisdom;
    he must never judge unfairly.

11 The Lord demands accurate scales and balances;
    he sets the standards for fairness.

12 A king detests wrongdoing,
    for his rule is built on justice.

13 The king is pleased with words from righteous lips;
he loves those who speak honestly.

Thoughts

There He is, again, talking about our plans.  He lets us make them (free-will) yet He will determine our steps.  To me, that is pretty awesome.  My plans usually suck pond water.  I had someone tell me, once, that I was like a reed in a hurricane.  On occasion, I would just bend, yield, and blow wherever the wind would take me.  I pray that my roots are that of an Oak tree!

Section 3

14 The anger of the king is a deadly threat;
    the wise will try to appease it.

15 When the king smiles, there is life;
    his favor refreshes like a spring rain.

16 How much better to get wisdom than gold,
    and good judgment than silver!

17 The path of the virtuous leads away from evil;
    whoever follows that path is safe.

18 Pride goes before destruction,
    and haughtiness before a fall.

19 Better to live humbly with the poor
    than to share plunder with the proud.

20 Those who listen to instruction will prosper;
    those who trust the Lord will be joyful.

21 The wise are known for their understanding,
    and pleasant words are persuasive.

22 Discretion is a life-giving fountain to those who possess it,
    but discipline is wasted on fools.

23 From a wise mind comes wise speech;
the words of the wise are persuasive.

Section 4

24 Kind words are like honey—
    sweet to the soul and healthy for the body.

25 There is a path before each person that seems right,
    but it ends in death.

26 It is good for workers to have an appetite;
    an empty stomach drives them on.

27 Scoundrels create trouble;
    their words are a destructive blaze.

28 A troublemaker plants seeds of strife;
    gossip separates the best of friends.

29 Violent people mislead their companions,
    leading them down a harmful path.

30 With narrowed eyes, people plot evil;
    with a smirk, they plan their mischief.

31 Gray hair is a crown of glory;
    it is gained by living a godly life.

32 Better to be patient than powerful;
    better to have self-control than to conquer a city.

33 We may throw the dice,
    but the Lord determines how they fall.

Thoughts

I guess I will never have a “crown of glory.”  When I see a beginning to my “crown,” I immediately go and get it fixed.  Mainly pink.  There is usually an absurd amount of pink in my hair.

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