Depression, Faith Journey, Medical Issues

The One that *Sees* You

The One that *Sees* You

The One that *Sees* You

Have you ever felt invisible?  That no one really sees the pain that you carry around on a daily basis?  Has your pain ever been so intense and you have stuffed it so far, that you are numb to emotions?  Have you ever been called emotionally stagnant or unable to feel things as they happen?  Well, that’s me in a nutshell.

Trauma

Childhood trauma, young adult trauma, adult trauma, PTSD, whatever it is that you may face.  It’s a bitch.  In the moment, I feel nothing.  I’m always on mode go go go go go and then once I’ve gone, I relax.  Then, I cry and feel all the feelings.  It’s horrible.  I’m working on processing the traumas, whether big or small, past, present or what I foresee.

Have you ever taken the ACE test?  The Adverse Childhood Experience study?  My score is 6.  This means that “People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years. ACEs are responsible for a big chunk of workplace absenteeism, and for costs in health care, emergency response, mental health, and criminal justice.”

Drug Allergy Testing

So, this past week, I had to take Hunter back to the allergist at Vanderbilt.  This time, not for seasonal allergies but for a Decadron Challenge.  Doing this definitively tells me whether or not he has an allergy to this specific drug.

Luckily, we had the same nurse as last time and the dr that we met via telehealth the first time.  These ladies are so very nice.  They explained things to Hunter and me very well.  We had to leave a bit early and I got so turned around that we were almost lost.

This place is in a shopping mall.  I kind you not.  We had to go to a mall to go to the doctor.  It is so weird.  Add that to the fact we have to go up one escalator, down a thousand hallways, and up an elevator to get to where we were going.  I was tired, he was getting anxious, we all know the drill.

10 Minutes Late

We got there, just in the knick of time.  The nurse called us back and said how she remembered us from the last time.  She did all the things and got us to our room.  Hunter was behind me, twirling his shirt and hopping.  I sat down, feeling defeated but stoic.  Ready for this next test, next doctor, next hospital, next next next.

The nurse came over and asked to hold Hunter’s hands.  She looked at him and told him exactly what we were going to do.  That nothing, today, would hurt him.  She comforted him and asked him if he was okay.  He said he was scared and she softly assured him that there was nothing to fear.  That touched my heart of stone.

Then, It Happened

She got him settled with the promise of Teddy Grahams and power aid.  Next, she rolled back to her computer and started typing something, asking me the normal round of questions.  Then, she quickly turned her chair around and looked me dead in the eye.

She said, “are you okay?”  This was done with such sincerity that it threw me off.  I was speechless.  Then, I felt it coming.  Tears welled up in my eyes and I gently said “no.”  She rolled over to me and patted me on the leg and said that it was going to be okay and that I was going to be okay.

I Felt Seen

At that moment, I felt as if she could see directly into my soul.  That she saw everything that had been stuffed down and she wanted to assure me that it is okay.  I am okay.  This is all going to be okay.  I felt such comfort and calmness.  A peace fell over me and I could physically feel my body relaxing.

On cue, Hunter must have felt something too because he did his thing.  Ever since he got sick, we have listened to Ms. Debbie.  She has recorded us about 8 songs.  He knows them all by heart and asks to listen to her because it calms him.  He turned around and said, “can we please listen to Ms. Debbie?”

We both listened and praised God together.  I am learning, listening, and trying to trust in the process.  It is coming up on 4 yrs and we are both just tired.  God, give us rest and heal his weary body.

Side note:  he is NOT allergic to Decadron 🙂

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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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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

I Am Not Crying

I Am Not Crying

I Am Not Crying

I swear, I Am Not Crying…yet maybe I am.  Maybe I sat in the bathroom (after disinfecting it) and teared up.  I feel like The Rock in the Jumanji movie where they just get to the jungle and he repeats to himself “don’t cry, don’t cry.”  Yet tears began to flow.

This is not normal.

I will never get used to this sight.  Ever.  These “chemo” chairs affect my soul on a deep level.  Seeing all these babies, children, and young adults…it does not get normal.  It is not just “another day, another treatment.”  It’s not.

Today, someone finished their treatment.  The nurses sang and clapped.  You could see their smiling eyes even though everyone has a mask on.  That warms my heart but still, there is a disease that has ravished these children.  Not okay.

Beginning

We started out in a room and then got kicked to a chemo chair.  These chairs suck.  Drapes separate people, yet the floor is packed.  Nurses move, gurneys come in, IVs get clogged, IVs beep, meds flow freely.  Oncology kids are getting tested for Corona.  The screams I hear are piercing.  It is protocol in these uncertain times.  I get that and respect that.  Honestly, I’m glad they are taking precautions but still.  This is hard.

Lost Count

I have lost count at how many pokes, flushes, bp checks, temp checks, weight checks that he has had.  How many drugs have flowed through his little body, yet it still tremors.  Countless questions about why he isn’t in remission and will it ever happen.  Then countless answers of “Brandi, accept this.  This is as good as he will get.”  The uncertainty of what is to come as he gets older.  I am overwhelmed with grief.

Don’t Get Me Wrong

He has come SO far.  I mean, he is no longer in a wheelchair.  He can walk from point A to point B.  I don’t ever want to sound ungrateful.  Yet, if you have never had a child who has a condition and monthly treatments, then you don’t truly understand what we go through.  I can still be humbled and grateful while still mourning his health.  Does that make sense?  It does to me.

There are 2 people, on this Earth, who actually know what we have been through.  Those people are Hunter and me.  No one else has walked this path.  My husband and children have seen a lot.  Other people have seen what I have allowed them to see.  I don’t break often but when I do, I know it is pitiful.  Those who love me want to remind me and comfort me and point me to the cross.  I truly appreciate that.

Yet

There is a deep-seated pain that is always present.  The constant feeling of “what next or when do we have to use the big meds again?” How I watch him move and analyze every single tremor.  Fear that sets in when someone comes in my house that has been sick.  I live in fear.  Yes, I know fear is a liar.  I know that God is bigger.  Also, I know that He has a plan and a purpose.  I know that Hunter is healed due to the stripes on Jesus’ back.

I know.

Sadly, I know that I’m human.  Fallible.  Subject to listening to the lies of satan.  I know the blessings.  The strides he has made.  I am totally aware.  Honestly, I’m just tired.  I am so tired.  This journey, I want to end.  Not necessarily for me but for him.  I don’t want him to tremor, have rages, OCD, treatments, exhaustion, fear, uncertainty.

I Am Not Crying.

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Large Family Happenings, Medical Issues

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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6 Month School Update

6 Month School Update6 Month School Update

It has been a bit over but here is our 6 Month School Update.  As you may or may not know, I am a former homeschooler.  I homeschooled my children for about 20 years.  Successfully, I have graduated with 4 children.  For my younger 3 kids, I decided to try public school.

Myriad of Reasons

I love homeschooling, for the most part.  It has been a bit harder because I do have 4 special needs children, so it was also not the easiest.  Our decision to put them in school was a quick and swift decision.

I knew when I was done, I would be done.  Honestly, I was just overdone.  My exhaustion level had reached an all-time high.  When you have a child who is medically fragile, life changes.  Our traveling had hit another level and I wasn’t doing anyone any justice by being 1/2 in.  Their education is far too important for me to let it slide by.

Ben and Bug

They are well.  Almost ready to celebrate 2 years of marriage.  They are both working hard and learning so much.  Bug is moving through some things and she has made some brave decisions.  I’m incredibly proud of her.

Peach

She just started the first day of her last semester of college.  **Cue the angels singing.**  I have no idea why it seems she has been in college for 549 years, but it sure has.  She has done well.  There is that excitement mixed in with the “oh crap” mixed in with the thrill of fixing to truly start her “adult” life!  She is also working and loving her dog.  I’m incredibly proud of her.

Gigi

Thankfully, she has finished high school.  Good gracious that was a chore for both of us. She was about 6 mths late in doing so, but she worked 7 days a week to get finished.  A good friend hired her to work and that is going well.  She has MASTERED getting ANY types of stains out of clothes and she is really good with kids.  There is still a lot to figure out, but we are taking one step at a time. I’m incredibly proud of her.

Boo

He has started the last semester of his freshman year of college.  That seems unreal to me.  He is working part-time and helping out at home.  Still, though, uncertain about his major, we have ruled things out and then put things up closer to the front.  He will figure it out.  There is a little female that he has been spending time with…I just can’t talk about that right now.  I’m incredibly proud of him.

Catfish

For a kid with SEVERE dyslexia and FASD…he is rocking school!  He has had great grades and is learning to navigate life.  There have been some social issues that we have had to work through.  Mostly learning who is safe and who isn’t.  How to work around bullies.  Oh, and have there been bullies.  Bullies are not limited to children, ya know.  Adults bully too and we have certainly dealt with that.  I am not well-liked, at the school, by some people but I really do not care.  I’m incredibly proud of him.

Jude

He has excelled, as well.  Academically and with sports.  He is so much fun to watch when he is playing ball.  We have, again, dealt with bullies.  Also, sadly, lots and lots of racism.  Racism now is more underhanded and calculating.  Methodical and intentional.  There isn’t the outward act of separating out things just the subtle undertone.  It has been so sad to see and to deal with.  Again, I’m not well-liked by many.  I really do not care though.  I’m incredibly proud of him.

Kid

He has made great strides in school and in his therapies.  For a little guy, he is in a different therapy 5 days a week.  He has OT, PT, SLP, Vision, and Horse therapy (the best one of them all)!  One major accomplishment is he has learned to spell and write his name.  The thrill is unlike anything I’ve ever had!  Our hardest thing has been treatment monthly, steroids monthly, and keeping him well.  He has had 2 flare-ups since starting school.  One attacked his hands and legs.  The other attacked his hands and his speech.  I’m incredibly proud of him!

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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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