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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I Am Broken

 

Large Family Happenings, Medical Issues

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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Medical Issues

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.

 

Medical Issues

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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Thoughts from a Hospital Room

Faith Journey, Medical Issues

Thoughts from a Hospital Room

Thoughts from a Hospital Room

I have spent a lot (I literally mean A LOT) of time in hospitals since 2015.  Between my Lady, daddy, mother-in-law, son, and more…my job is night duty.  That is my thing, I don’t sleep well anyway, so why not stay so other family members can rest.  As I was sitting with my MIL last night, these were my Thoughts from a Hospital Room.

Spectacular Human

First and foremost, my MIL is an amazing woman!  Her love and devotion to her family are astounding.  She is humble, kind, and just precious.  I’m so thankful that I was blessed with her in my life.  We had some deep conversations.  Many, I am sure, she will not remember.  I will though!

Tears were shed, honesty was spoken, love was present.  Also, she is a freaking powerhouse.  I told her that she cannot be a superwoman, at this point, in her life.  She needs to take care of herself (she had a hip replacement).  The doctor said she took that hip as far as she could.  Honestly, he was amazed that she had endured so much pain. She pushed herself as far as she could.  Rockstar.  That is what she is.  A freaking rockstar.

Polar Opposites

We are polar opposites!  I mean, not just a little bit.  She is quiet, reserved, and self-assured.  I am loud, balls to the walls, and self-conscious.  Yet, we mesh.  It is so funny how I blew into this family and shook them all to their core.  I brought LOUDNESS to this family.  Honestly, I adore her.

Thoughts from a Hospital Room

We were talking about books (where we have similar tastes)!  I have not had time to read because I’ve homeschooled for 20 years.  The books I read are to my children because I am a firm believer in expanding your mind through the written word.  We are not big on tv, video games, or phones.  All my children have a deep love of books, unlike their father!  He is not a big reader.  Actually, he is a bathroom reader LOL.

We were talking about The Client and that I was struggling through it.  Honestly, neither of us like fiction too much.  I told her that I was read the first half of the book and then I put it down.  Deep down, I struggle with the fact that I have not finished it.  We talked about my Type A personality or OCD.

Type A

I read that “Type A individuals tend to be very competitive and self-critical. They strive toward goals without feeling a sense of joy in their efforts or accomplishments.”  HECK YES!  I would finish that book even though I could not stand it.  This time, I went against my grain and I put it down.  It is killing me that I did not complete something.  Seriously, I feel like a failure.

Stupid, I know.  Yet, that is how I feel.  Like when I get in my obsessive mode and watch a tv show, I have to watch every episode.  If I don’t, it disturbs me greatly.  Yet, as I was speaking to my MIL, she was like “if you don’t like it, why to waste your time and finish it?”

Revelation

That statement gave me permission and freedom to say “NO!”  This is a minor, first-world issue.  Sadly, it is still an issue and a thing for me.  Fellow Type A or OCD people get this feeling.  Lately, I have been very intuned with triggers that are not healthy for me.  I’m learning to step back, not complete, calm down, re-evaluate and not finish something.  So hard.

Triggers suck.  There are some topics I stay away from whether it is a person, situation, book, movie, or whatever.  Some things I stay away from is anything that surrounds sexual abuse or rape specifically.  That word, itself, triggers me and makes my stomach hurt.  Anything that deals with suicide or even actors or have made that choice.  I don’t watch movies with them in it.  That issue stabs me in the heart.  War movies or books.  I have mad respect for those serving and who have served.  It breaks my heart to think of what these people/families have endured for me.

Maybe it is Silly

Yet, to me, it is real.  It affects me.  Why would I want to purposefully do something that will alter or trigger my mental health?  Our job is to surround ourselves with things that bring us joy and/or happiness.  With my mental illness (clinical depression and PTSD according to my doctor), I choose to say no.

So, as crazy as it may sound, I put the book down, skip shows, fast forward through parts of movies.  Heck, I have gotten rid of movies and books.  If someone in my life is toxic, I love and pray for them from afar.  I don’t voluntarily jump into their lives and try to fix it (though I wish I could all the time).  It is not my job.  That is the job of Jesus.

Sincere Love and Appreciation

For my mother-in-law because in her hazy moments after surgery, she spoke such truth to me.  I felt loved, appreciated, and understood.  Today, I choose joy.  In all things, honestly.  Today, I give you permission to SAY NO and put things down that you don’t dig.  Let it go.  Just let it go!  Oh, and don’t forget…LET IT GO!

 

Large Family Happenings, Medical Issues

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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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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Addictive Personality? OCD? Both?

Addictive Personality?  OCD?  Both?

Addictive Personality? OCD? Both?

Honestly, most people who know me well would say that I do have an addictive personality and OCD.  I’m not super bad with either but it could easily get out of control in a heartbeat.

Sadly, addiction runs in my family.  I am totally aware so I am super mindful to stay far far away from drugs, smoking, and alcohol.  There are other types of addiction that can be just as bad.  Sex, porn, overeating, etc.  Addictions can come in all shapes and sizes.  It does not discriminate in regards to your biological identity, your color, social status, ethnicity…it just comes up and bites you in the butt.

Accountability

It is good to have people in your life that can hold you accountable.  Jerk a knot in your tail, as my mama says.  My sisters, my mom, dad, and especially Big Daddy can help keep me in check.

Today, however, I went unchecked.  My Gmail account has stated, for a while, that I have exceeded my limit.  I went to send an email and it would not send.  So, in true fashion, I started off simple.  I got rid of the spam emails and I emptied the trash.  That didn’t work.

I Saw the Beast Determined to Win

Next, I went through my email folders and got rid of things that were not pertinent.  That didn’t help either.  I hit the “manage” google drive and there it all was.  In all of its glory and magnitude.  So.  Many.  Pictures.

Not just pictures but videos, kindle books, documents, and more.  It has taken me a month of Sundays to try and figure out how to get my stuff from my google drive to my computer.  Then, from my computer to my external hard drive.

Public Service Announcement

PSA:  If you do not have an external hard drive, get one!  I save NOTHING on my computer anymore.  This is a simple solution to what can be really scary if your computer crashes.  It is small, portable, and easily fits into a fire safe box, safety deposit box, or safe.

Anyway, I have been OBSESSED about lowering the amount I had and not buying more storage.  Literally, I have worked on this for weeks, as I have had pockets of time.  Today, I tackled it all.  Bit by bit.  I chipped away.

Too Much

There was so much stuff from 2015…I can’t even.  By the end of the night (almost 10 pm), I have it all transferred over to my computer.  I even have extracted them all, deleted the stuff that I didn’t need, and organized what I do want.

The Transfer to Completion

Now, to transfer it to my external hard drive.  My obsession (addiction to completing things) is finished, for now.  I did cook supper.  Thankfully, it did not burn.  I ignored my kids, but they played games on the same table.  My mom, I spoke to her twice and told her that I was eating a 1/2 block of smoked gouda, wearing my hussy shorts, drinking a coke, taking a Tylenol, and finishing this task.

She wished me Godspeed.

It.  Is.  Finished.

Hallelujah, the color has come back to the world.  I no longer see all things in gray.  It.  Is.  Good.

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Medical Issues

The Results of MIBG Scan

The Results of MIBG Scan

The Results of MIBG Scan

The Results of MIBG Scan are here!  Is it sad to say this is a bittersweet result?  On one hand, Neuroblastoma (NB) is the cause.  Amongst the cases, between 50-80% are NB related.  These cases can be a result of a virus.  Also, after vaccines.  Lastly, autoimmune.

We know that Hunter had not been sick.  Also, he had not had vaccines since before he came to live with us.  did not have a virus and he had not had any vaccines (this is not something I am going to delve into further).  So, we had NB or autoimmune to differentiate between.

Testing Time

Hunter has every test known to man.  He has had lots of testing.  In fact, he constantly goes from urine tests to MRIs to CT scans to X-rays to the second-largest genetic test there is.  EVERYTHING came back normal.  Well, I take that back.  Everything but 1 thing came back normal.  His Lumbar Puncture (LP) came back with high opening pressure and 5 Oligoclonal Bands.  This means that there is some type of illness present.

Well, Duh.  At the time, he couldn’t even sit up much less stand or walk.

This is what we had to work with.  I had asked a couple of hospitals to do the MIBG scan but all declined.  This last hospital, Vanderbilt Children’s, is the one who brought it up to me.  I was eager.

In OMS world, the longer you are *past* onset, without cancer, the less likely you were to develop it down the road.  We, at the time, were 2 years past the onset of his illness.  I felt confident that he did not have NB.

However.

In my glorified thinking, I think that if he has NB, it is encased.  If it is encased, it is an “easy” surgery to remove it. Once the removal of the NB has happened, the symptoms will be gone and he will be normal again.  Is this the case?  I don’t know, maybe sometimes.  It really isn’t as clear cut as my glorified thinking.

Reality

The reality is that the treatment system is the same.  Monthly IVIG, monthly steroids, and then Rituximab (which did not work for Hunter).  We now have to decide between Cyclophosphamide or Plasma Exchange (Plex).  Since this is not something we are discussing right now, I am happy to set it out of my mind.

OMS is a life-altering condition that will not go away.  It can go into remission though.  Remission can be from cancer or from being so symptomatic with the autoimmune side of life.

Good news:

Hunter DOES NOT have cancer.  My glorified thinking is putting all the pieces back together.  Hunter has been given complete healing through the stripes of Jesus.  This is not a life-threatening condition, in him.

These are all good things!

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MIBG Scan

MIBG ScanWhat is an MIBG Scan?

According to the Cleveland Clinic, “An MIBG scan is used for localization of known or suspected neuroectodermally derived tumors, including pheochromocytoma, ganglioneuroma, ganglioneuroblastoma, paraganglioma, carcinoid tumor, and neuroblastoma.”

This is something that I have requested from several hospitals but was always told no.  Now, we are embarking on a new pediatric neuro who actually sat and listened. She read what I brought.  Asked appropriate questions.  Understood where I was coming from and was anxious to jump on Team Hunter!

#HunterStrong

She is allowing me (within reason) to dictate when we start our Dex.  I’ve successfully pushed it from every 2 weeks to every 4.  This month, I’m shooting for 5 weeks.  This, of course, is dependent on how Hunter’s body reacts.

In conjunction with that, we are continuing with PEMF therapy, horse therapy, Symphony of cells protocol, IVIG monthly, and the maintenance that comes with all that.  We are also heading back to St. Augustine for a one-day treatment.  Lots of holistic treatments mixed in with traditional medications and therapies.

MIBG Scan

I digress on the topic.  Today (June 13th), we (Hunter, Alyssa, and I) heading to Nashville for his injection.  He has to have that solution in his body the day before the scan.  We have also done pre-scan medication of Lugol.  It is a 5% Iodine solution that is taken the day before injection, the day of injection, and the day after injection.

Tomorrow will be scan day.  We should get the results back on Monday (I hope).  This is going to rule out ANY Neuroblastoma.  The longer a person is past onset of symptoms without cancer showing up with MRIs, CT scans, and blood work…the less likely that person is to actually have cancer.  Therefore, it is dubbed “autoimmune.”

What We Have Operated On

This is the assumption our past doctors have been operating on.  We are 2 years past onset, why take the time for this scan?  Well, Dr. James is little miss Johnny on the spot and she wants to completely take that thought out of our heads and hers.  I’m all for proactive, rule things out, kind of things.

In Lieu of the Scan

We came on down and went to eat.  After eating we headed to the Nashville Zoo.  It has been such nice weather.  We got his wagon and off we trekked through the other side of the bamboo shoots.

It was so nice.  When we got back, we couldn’t swim because we are trying to preserve his IV for tomorrow.  Instead, we ordered pizza, played, and watched a marathon of Chopped shows.

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