Book Processing

Processing Dancing with a Porcupine Part 4

Processing Dancing with a Porcupine Part 4

Processing Dancing with a Porcupine Part 4

 

Processing Dancing with a Porcupine Part 4.  Hahaha, I am only on chapter 3 LOL.  There are 24 chapters in this book.  Sorry, not sorry.  Here is the quote that I’m starting with “Parker insisted we listen to his constant chatter, becoming frustrated if we didn’t listen to every detail of a book he wanted to describe.  He asked silly questions, he knew the answers to and insisted that I answer each time.  When I didn’t, he either tried to pull me into an argument or threw himself on the floor in hour-long temper tantrums and wailing meltdowns.  If I sent him to his room, he threw and kicked things, screaming at the top of his lungs, sometimes for hours.  I thought the screaming would never stop”

The Constant Talking

It became a running joke as to if one child had hit the word count of the day.  We learned quickly to selectively here and nod our heads a lot.  This kept the peace and didn’t cause chaos.  Every once in a while, something would perk my ears up.  I had tuned into hearing things said to others and then confronting her…what happens…confabulation.  Though I was aware of what was going on, occasionally it would still pee in my wheaties and, sadly, I would react.

I Can’t Control the Actions but I Can Control My Reactions

I need that tattooed on my forearm and have a pillow with needle point of that statement for me to see all the time.  Reacting was awful.  It came out as yelling, saying things that I mean but probably shouldn’t say.  Shame was involved because I am the adult, she is the wounded child.  This stuff happened, daily and after 16 years, it has still stayed with me.

The chaos that would ensue was breaking things, self-harm, almost black out type of rages.  I know this is the past coming up and dealing with it.  Therapy was not helping, medication wasn’t helping.  We tried to make sure there was always water and protein to help stimulate and calm the brain.

What I have sense learned is that it didn’t just affect the child, it affected all of my children, they just chose to be silent and not use their voices to express their fears and sadness of what was going on that was out of their control.

That hurts a mama’s heart.  They were trying to protect me and not add more stress to me or their dad.  My kids are resilient and amazing.  Our family was not equipped to handle the mental illness of this child but there was NO help, NO advice, NO support.

This Quote

“My success in parenting Parker did not depend on his behavior.  It came down to mine”  …. ” My success was based on my choices, which I could control rather than his behaviors which I could not.”

I need to marinate on this because it is so accurate.  There is a tendency to own all the choices my kids have made and live in the shame storm.  Shame meaning I am bad.  Guilt meaning I have done something bad.  I, personally, lived in the shame storm but I couldn’t figure out why I was there and how to get out.

I will, forever, apologize to my kids for failing them (in my eyes, not theirs).  I should have always chosen to control my behavior.  There were times that I did control it, ignore it, walk away from it, selectively hear it, do spot damage control, and other methods.  Then, there were times I would yell, break down, beg for help, feel horrible because I am not the nuclear family this child wanted.  I was punished for what I wasn’t and would never be.  I was punished for choosing this child to be a part of my family.

Learning as We Go

“I wish I had better understood their young emotional age.  Much of my frustration came from comparing them to other children of the same chronological age (or even sometimes much younger).  I would look at my kid and think, ‘This child SHOULD be able to do what I’ve asked,’ or, ‘They SHOULD be able to play by themselves for one minute.’ I had to learn to let go of “should” because many times the kids simply couldn’t do what I expected.”

Never never never compare your children, born in the heart, to other children that come from their nuclear family.  Never.  That is a recipe for disaster.  When things escalate, I literally think oh, I’m now parenting a 9 yr old (when in actuality, they are 18).  Children who have come from trauma tend to look their physical age and on a good day mostly hover around that age.  When they are escalated, they go 1/2 their age (going from 18 to 9).  When things are beyond coming back from, you are in the level of when their abuse started (for the example provided, that would be 2.5 yrs old).

Breaking it Down

So, your 18 yr is having a moment because they couldn’t remember after being told numerous times to feed an animal.  They throw a fit because you start asking more sternly and that shoots them to 8 and 8 year old behaviors (stomping, slamming doors, etc).  You tell them to stop doing those things and get on with the task at hand.  Mistake.  Now we are parenting an 18 yr old 2.5 yr old.  Literally, time-out or time-in is all that works.

We have to get in some protein and water to get the brain back to the higher executive functioning in their thinking.  We do this because, at this moment, they are working off the lower part of their brain.  That’s not we want and we certainly don’t want them to work off the lower part and then because I’m frustrated working on the lower part of my brain.

It always ends in tears and apologies.

Related Posts

Processing Dancing with a Porcupine Part 3

Night by Elie Wiesel

Spaghetti Carbonara

Cooking

Spaghetti Carbonara

Spaghetti Carbonara

Spaghetti Carbonara

Spaghetti Carbonara is a dish that is super simple and it has very few ingredients.  To make it a complete meal, you can do some garlic cheese bread.  Also, we usually fix a Caesar salad.

Ingredients

Pasta (I used Linguine)

Seasoning mix

3 room temp eggs (reserving 2 ladles of the hot pasta water)

Bacon (reserving 3 Tbsp of bacon grease)

Fresh mushrooms

Garlic

Large onion, sliced

Parmesan

Directions

Cook bacon.  Take out when done and crush.  Add in the garlic, mushrooms, and onion (spinach would be a good add-in as well).  Once the veggies are soft, pull them out.

Crack the 3 room temperature eggs and beat lightly.

Cook noodles in salted water.  Use the hot starchy water to ladle into the bowl with the beaten eggs.  Whisk in slow and fast to keep from cooking the eggs.

Drain the noodles and return back to pot.  Add in 3 Tbsp. bacon grease and the vegetable melody.  Use thongs or something to twirl all that together.  Slowly, add in the egg mixture and twist/mix the entire time.  Once that is all in there, add a lot of parmesan.  Keep on twirling until it is all incorporated.

So freaking good and so easy.

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Processing Dancing with a Porcupine Part 3

Processing Dancing with a Porcupine Part 2

Processing Through Dancing with a Porcupine Part 1

Book Processing

Processing Dancing with a Porcupine Part 3

Processing Dancing with a Porcupine Part 3

Processing Dancing with a Porcupine Part 3

 

Processing Dancing with a Porcupine Part 3.  This book is packed with so much that I am basically rereading in order to pull out all the gems that will help ME process the last 16 years.  “I found myself jealous of the other parents and embarrassed at being the only one having to supervise her elementary-aged children so closely.  What I didn’t know at the time was that my children were going through a very normal phase, just not at the typical age.”

Can We Just Talk About the Jealousy?

I had it in spades.  It wasn’t so bad when one of my children was younger because my kids all clumped to me when we would go out anywhere.  The problem began when they hit pre-teen ages.  There would be events at church, I would send my kids.

Huge problem.

One kid would have fun, another kid would have fun, but then I would have a phone call about another kid.  This child acted out, sat where they were not supposed to, mainly outside, angry, triangulating adults and children, overly obsessed with certain objects and people.

One Time

My husband was fixing to have a scope done on his knee.  We were at church, that Wednesday night.  Wednesdays were hard because one kid would consistently start something with someone and have to set by us at the church meal (again, reference the above quote).

At this time, we were working with this child’s nutrition to see if it would help with behaviors.  We started out with cutting out sugar.  Now, did we announce this to the world?  No.  If she had something that another person didn’t know she shouldn’t have…I mean what are you supposed to do?  It isn’t the other person’s fault.  The child is manipulative and can sell ice to an Eskimo.

Well, going through the supper line, this child didn’t get dessert, but man her face said that dissatisfied with that decision.  So, we all sat down and again, the ladies came by to offer more food and again, there was the look of “I can’t have that.”

I could have explained to these ladies but then I thought, “ya know, they don’t live in my house, we are the parents, and I don’t have to explain our choices we make for our children.”  I guess they didn’t approve of me not defending our choices.

Unknowingly to My Husband or Me

Things were brewing and we were oblivious.  Our pastor came to us and said he needed to talk to us after service.  We thought, because he knew about the scope, that he was going to pray over us before the procedure.

Oh, no he didn’t.

He came in the room and proceeded to tell us that the supper ladies were very concerned about how we parent this child.  Also, how very wrong it is of us to deny this child dessert.  That they were looking for reasons to call CPS because she always looked sad.  That we need to consider how we present ourselves as parents.

Wisdom on My Part

I got up and walked out of the room.  At that moment, I knew that I would say something that was not going to be kind.  I was done.  This was the second church we were going to have to leave because of the assumptions of the “holier than thou” people.

It must be quite hard to parent 2 typical children and then sit back and judge a family who has 7 (this is the same church that told us not to go to home groups because there were too many of us).  Again, zero support.

I took a moment and then I used my words and discovered the 2 spear heads that orchestrated this intervention.  They were demanding that we sit down with them and tell them the stories of my kids.

There was no way, on God’s green Earth, I was going to do that.  My kids’ story is THEIR story to share when THEY want to share it and IF they want to share it.  I refused to share the pain and the things we were doing to try and HELP our child be the best version of themselves they can be.

We stopped going to home church and Wednesday nights.

A Precious Man

The associate pastor called me and we met and talked about what all had happened.  He was mortified.  He helped with suppers on Wednesday night and he was blindsided with what the catty ladies and the 2 spear heads were discussing (us and not the menu).  He cried.  I cried.  He brought in one of the ladies, whom he had already spoke to, and she half-assed apologized to me.  The other lady still demanded me to tell her their story.  Cornered me in every area.  I told her that she needed to remove herself from my space or it would not end up well for her.  I was furious.

Only because of my Lady did we ever darken to the doorsteps of that church on Wednesday night.  Also, the pastor (ugh) also offered to take one of my children to his house for, I think, his daughter’s birthday or a get together or something.  Well, he called me, needed me to COME AND GET this child because my child was doing what she does best at the time and was causing conflict with excessive obsession.  Too much for a bunch of 12 year olds to handle.  I get it.

He apologized for not completely seeing what we had been trying to convey to him for years.  I appreciated that but the damage to my family was already done.  I stayed for the associate pastor and my Lady.

Filling in the Gaps

“Wounded kids needed to fill in the gaps in their childhood…acting out their emotional age.”  Yes, yes, yes.  When my kids were younger, though they were 6 and 2.5 years old (even my 21 mth old), we bought them diaper bags.  We filled them full of things that one would buy for their newborn babies.  I took what little pictures I had and made them a baby book (we also had a memory book for each of the foster care homes they were in).  I asked them if they wanted me to put the information in the book like I had given birth to them or to try and fill in the book with what I knew about their birth mother had.  They both chose for me to fill it out like I had given birth.

Done and diaper bag packed.

We also swaddled them, rocked them, sang nursery rhymes to them, fed them with a bottle, had pacis (if they asked).  Most every night, we would have 2 newborns at the ages of 2.5 years old and 6 years old.  We were trying to help them feel like they belonged, were wanted and loved.  They would ask to do these things, often, and we always tried to oblige.

When you talk about emotional age, I had a child who was 6 and emotionally she was 3.  My 2.5 year old was emotionally a newborn.  It is and continues to be about 1/2 their physical age.  You have to account in the diagnosis of each child and the age when trauma started.

Stranger Danger

“Neither child displayed an ounce of stranger-danger, a trait very common to children with attachment issues.  Both kids would walk right up to a stranger and stand very close to them, as if they were family.  If we were present, the kids would stand closest to the strangers and as far away from us as possible.  Someone walking into the situation would have incorrectly assumed the kids belonged to the stranger’s family.  It was stressful trying to keep them safe.”

Oh dear, one child was pole dancing in the Sunday School class to the song Jesus Loves Me.  The teachers freaked out and asked where she learned that.  She said “my mom.”  At the time, they did not know us and didn’t know that we had adopted these children.

Many times, I would find my kids in the laps of older men that, even I, didn’t know.  When I tried to talk to the teacher or person about boundaries, they got offended and the pastor (this was the first church we attended when the kids came to live with us) cornered me in the stairwell and screamed at me for being such a horrible person.  I mean screamed.  Though I kept asking to go to his office, with my husband, he refused and continued to berate me.

Another child would show up, at a ballgame, with a wad of gum in the mouth or candy.  I would ask where it came from and all that was said was that stranger over there.  I’m like “WHAT??!!” This child had no clue that this was not safe.

I Get It

These children are taken from all the know.  The smells, tastes, sights, familiarity and plopped into a home where they know nothing…a stranger.  They are asked to fit in, do not cause ripples, blend in with strangers.  It makes sense to always seek comfort from a stranger.  That’s what they were asked to do.  Trust a stranger and now we are telling them NOT to trust strangers.  How difficult must that be for a young child?

Honestly, it all just sucks.  Free-will sucks.  God is still good and He still has a plan and a purpose for all things under heaven.  I have to choose to have hope and believe that one day, either here or in heaven, all will be healed and my family will all be reunited.

 

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Processing Dancing with a Porcupine Part 2

Processing Through Dancing with a Porcupine Part 1

Book Processing

Processing Dancing with a Porcupine Part 2

Processing Dancing with a Porcupine Part 2

Processing Dancing with a Porcupine Part 2

 

Processing Dancing with a Porcupine Part 2.  Here is another quote by Jennie Owens “deeply wounded children push others away so no one else can get close enough to hurt them ever again.  After being abandoned so many times, they reject you before you have the chance to reject and abandon them.  In an effort to protect themselves, they especially push away the primary caregiver, and he or she becomes the target for their anger.  They try to prove they don’t deserve love or anything good, because they believe this about themselves.”

Another WILDLY Accurate Statement

I can’t say this is true for all my kids that were born in my heart, but for 1 in particular.  It was from the moment we said “hello” that it was game on.  Upon reading the backstory, learning as much as I could, asking questions, that I finally understood.

This particular child’s bio mom told her, at a VERY young age, that if this child were really bad, they would give her back.  Of course, as sane minded people, everyone that heard that knew it was a lie.  Granted bio mom could have gotten her child back had she followed the plan provided for her.  She didn’t want to do that.  That was completely in her control and she chose not to do anything on the plan.  The courts hands were tied.

Yet, that statement carried with this particular child and it was taken to the nth degree with many homes before our home became the final home.  So because I never gave up, 99.9% of the anger and behavior was saved all up for me. Outisde of my home, this child was “perfect and unscathed.”

Seriously wanted to smack people upside the head when they would say that.

Not Getting What was Wanted

This child wanted the nuclear family that left.  A mom, dad, grandparents, siblings…every child wants that.  Again, these kids are leaving everything they have ever known and then going to live with a complete stranger.  How scary is that?

Eventually, some key people began to catch onto the actions of this child.  That caught the eye of therapists, the school, doctors, people at church, family and we did everything that was required of us (as foster parents and then adoptive parents) that was within our grasp.  We wanted this child to know the world was just waiting and what a powerhouse this child could be.

That’s not what was wanted.

Bigger, Stronger, Powerful Darkness

These are words that this child would talk about.  How the darkness would consume this child and it made this child feel bigger, stronger, and powerful.  This was a desired feeling.  Yet again, this was only directed at me.  There were times when this child would “slightly” hurt someone younger, when no one was looking, and then be the one to “rescue” said hurt child.  That was an aspect of life where we had to make the rule that an adult always had to be present for safety purposes.

Most of the hate was thrown my way and it was always my fault when things didn’t go as planned.  This child was trying to get me to change my mind.  To fall out of love and get rid of, to return this child back to the nuclear family that was so coveted.

I guess my love was bigger.  My sanity was giving out but my persistence paid off.  Sadly, this is more common than not especially when you choose older children.  It feels impossible especially when you do not have a support system.

Another Statement

“Sabotaging her own success at times and keeping herself out of an uncomfortable situation at other times, Brianna complained to others that we didn’t give her enough freedom, even though the situation was of her own making.”

I could write an ENTIRE BOOK on that statement alone.  Yes.  Yes.  Yes.  All we (Bart and I) ever wanted to do was give more yeses than no’s.  Can I have a snack cake for breakfast?  Yes.  Can I go outside and ride my bike?  Yes.  Can I have a sleepover at XYZ house?  No.  This is why we don’t need to do sleepovers but your friend can come over and play or if it is okay with the other parent, you can go and play for a couple of hours.

We wanted the yeses with the understanding that sometimes we would have to say no.  Sometimes, I could give a reason.  That reason was never accepted and it would always end up being a constant argument, discussion, pout session.  Then, there were other times when this child (or any kid) didn’t need a reason.  We are the parent and this is a rule and we have rules to keep everyone happy, healthy, and safe.

One child would state that they would get “so excited” that that is why they self-sabotaged all good things.  We had to parent completely different and I hated that but it was for the betterment of a child, or two, or three, so on and so forth.  We would extend a privilege and then get a phone call later stating what happened and that we needed to come and get that child.  From that point on, my child wasn’t welcomed.

When That Happened

We would distance ourselves from the entire event, family, church, etc.  Yes, this child may have screwed up but if you took the time to get to know this person and maybe the smallest of background info to help you understand…maybe it would have been different.  Where one of us is not welcome, none of us are welcome.  That’s how we lost a lot of friends, family, and churches.  Even if these people had a legit reason, which most of the time they did.  They couldn’t see past that event and show grace and understanding.

Basically, my family didn’t fit into the mold of what most people thought we should fit into.  My kids lost out on a lot of stuff standing up for this child.  I know they have resentment but I also know they have resilience.  These types of things created in them compassion, refinement, tolerance, and love…even though it sucked during that time.

Lots More to Unpack

But this blog post is getting too long.  There may be many parts to this because I want to bring awareness where there may not be any.  Part 3 coming soon!  Promise to keep them shorter.

 

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Book Processing

Processing Through Dancing with a Porcupine Part 1

Processing Through Dancing with a Porcupine Part 1

Processing Through Dancing with a Porcupine Part 1

Processing Through Dancing with a Porcupine Part 1.  You can find my overall review of this book under the book reviews 2022 page.  This is the part where I’m going to break down the book piece by piece.  I won’t necessarily do this for every book, but this one had some things that I will write about in order to process things in my own head.

Quote

Jennie Owens states “parenting one severely traumatized child was equal to parenting ten typical children” in her book Dancing with a Porcupine.  Can we all stand up, with our streamers, and holler HELL YES SISTER PREACH!!!???

So, I have 4 children that have been severely traumatized…that means I am raising 40 children in those 4 plus my 3 “typical” children.  I feel like the word “typical” is subjective but I get what she is saying here.

In saying that, I have a question….where in the HELL are all the “supportive” people?  The non-judgemental people who say they understand and will support you?  Where might those people be?

Where They Are Not

In our homes, outside family, church, school, therapist offices, court rooms, etc.  Obviously there are exceptions to the rule but seriously finding an advocate that understands is like picking a flea off an elephants ass.

Maybe I’m bitter.

Okay, so I’m REALLY bitter.

But, I’m also telling the truth.

If you confide in a friend…they will either conveniently leave or disappear, they will call CPS, gossip about you and your parenting style, assume the worst in you and your spouse, and so on.  A doctor and/or therapist will throw pills and tapping procedures at you.  Family just wants to love and not worry about what is really going on.  Schools are a joke.  Court rooms are also a funny fun fun time.

It’s hard.

Now, I Must Say

Right now I have a good support system.  I have weeded through those wolves, the Lord has seen the mountains they have thrown in my path and He crushed them.  I just love it when He puts people in their place.

We are in a good church with some very loving and supportive people and our Richie and Jenny are amazing.  My family has stepped up because I have allowed them to see more than what I would normally allow.

Schools…joke.  Therapist…non-existent or so expensive I would have to sell a kidney to get the type of therapy my kids need.  Luckily, the court system is not in our picture.  I do have a friend or two that get it because they have or are currently living it.

Had it not been for these people, I would have gone insane.  I think I hit that moment where I officially should have been committed to an institution for help.  In fact, my therapist told me that that was on her plan if I couldn’t process.  I dissociate very badly.  We are working on that.

Add that Quote

To all the other things that were going on in my life.  Home disruption, grandbaby being born, health issues, weddings, OMS, and life in general.  Acute trauma was always present in all forms and ready to devour me and my family.

Raising kids with trauma is no joke.  It is a war.  Sometimes you lose the battle and sometimes you win.  In the end, we all know Who wins the war and that is where my focus has to be on.  As a believer, I have to remember that I have read the last page of the Book and we win!  That is what gives me hope.

Would I ever not choose any of my kids?   I would choose them a 1000 times over again because the Lord gave them to me and Bart.  He entrusted us with all of our children.  We have not always been good stewards of these gifts, but we try and we love and we choose to release control of the things that we cannot change.

That, my friends, is progress.

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Book Reviews 2022

Quotes

Ooh That is a Toughy

Ooh That is a Toughy

Ooh That is a Toughy

Ooh That is a Toughy.  Again, some of these quotes get me 25 kinds of stirred up. So, let’s dive into this one.  I’m not sure if I can think about this enough but it is a good reminder when someone you love is a jackass.  That was tacky, wasn’t it…

Quote of the Moment

“An unhealed person can find offense in pretty much anything someone does.  A healed person understands that the actions of others have nothing to do with them.  Each day you get to decide which one you will be.”  ~Unknown~

Wow.  Wow.  Wow.

Have I encountered this or what?!  I would guess most people have had situations like this occur in their lives.  The only way this would not happen in someone’s life is if they were a hermit and lived with cats.

Maybe I should live with cats…I do love them.

Am I healed?  Oh, hell no.  Am I on the road to healing?  Yes.  I am learning through prayer, wisdom of a few people, and lots of reading and learning, also therapy.  I cannot control the actions of others but I can control my reactions.

That’s a hard lesson to learn especially when you are in the heat of a moment.

Grace Upon Grace

I think, with some situations, I’m “graced out” so I’m thankful that there is a God and that he never is “graced out.”  I know I need it.  I know that I need to extend it.  I know that I need to realize that when someone lashes out, it is there demons they are fighting…I just happen to be standing there and vice versa.

I’m not immune to being an idiot.  Saint is not under my strengths.  This is where I have to have the ear of those I know love me and have the best in mind for me.  They can tell me when I’m stupid.  Does it hurt my feelings?  Hell yes, but once I simmer down I can see their truth and how hard it must have been for them to tell me where I screw up.

Today, I can say that I don’t have grace.  I don’t have forgiveness in my heart.  I don’t.  Guess what?  That is OKAY!  I don’t have to have those things today.  I can be mad, hurt, angry, sad, disappointed, scared but the Lord is the Redeemer of all those things.  He will make glory come from all those bad feelings.  Good things will happen.  Grace will happen.  Love will happen.  Forgiveness will happen.

I won’t always choose to be all those things and feel all those things.  God will clear it up and clear it out.  He will not let me stew in these emotions.  Clarity will rise and it will all be okay.

Someday.

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Let Us Marinate

Let Us Marinate

Let Us Marinate

 

Let Us Marinate on the picture.  Open it up, enlarge it and just look.  This canvas is a 16×20 and there is NO room left to put ANY type of bead.  Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Beads of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads.  We kept them, for the longest time, on strings.  The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes, that were overflowing.  So, one day, I thought…let’s see what I can come up with.  What I didn’t pay attention to was the WEIGHT of this thing.  There is no way a nail can hold this thing up.  We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc that the child has done.  I will say, H did not earn any beads for the first 3 years of his disease.  This was because BOC was a program for terminally ill children or children with cancer.  I believe there was also, at his hospital, a cardiac program.  When we moved hospitals, the requirements changed.  Now, BOC includes those children/young adults with life-altering conditions.  So, these are the beads he has earned in the last 2 years.  Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement

Tortoise (too many to count)

Procedures, Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injectins, aspirations, other

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visit (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection.  These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other

Fish (60)

Transfer units or facilities, long distance travel for care, “upstream battle”

Transplant Glass Selection (24)

Transplant

Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017 had WAY more procedures, pokes, traveling, transplants, and all then he has had in the last 2 years.  This canvas is only the last 2 years of the 5 he since he has gotten sick.

Resiliency.

He is amazing, brilliant, strong, capable, able, and now he is HEALED.  I never thought I would say that word in relation to H, but here we are saying it loud and proud for all to hear.  God is good.  I didn’t think He was good.  Honestly, I wondered if He even existed sometimes.  Yet, I had warriors, all around us that held up my arms and faithfully prayed for my son.  They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed….Yet he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had power to do what he had promised.

Take that OMS!

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Work Related

Upcoming Changes to the Blog

Upcoming Changes to the Blog

Upcoming Changes to the Blog

Upcoming Changes to the Blog are in progress.  For one, I’m going to possibly have that boy that is in an arrangement with my second daughter do some behind the scenes work.  Literally that means he is going to do things that I have no clue about.

An addition will be either a category or a page dedicated to book reviews.  I have been reading, a lot, lately, and I want to share with you what all I’m reading to see if it peeks your interest.  I usually stay away from fiction, though I can stomach through a few John Grisham books and then there are a few classics that I love.  Mainly, therapeutic books, brain healing (from trauma) books, Holocaust books, and so on.

I am definitely going to make a page dedicated to Momentum Influencers Network.  I have been working with them for years.  I want to have a space dedicated to the reviews and giveaways that they offer.  This is such a good company and 98% of the time, they have great opportunities.

Another “piece of business” thing is I am in the process of taking off pictures of my kids and grandchild(ren) off social media platforms.  This is a personal decision because I do not ever want people to think I’m exploiting my kids for profit (I make nothing).  Still, my adult children can give me informed consent but my young boys cannot.  If I have one standard for one kid, it goes for all my kids.  I will still talk about them, some, but I want to respect their privacy.

As for my blog content, I’m on the fence about whether or not to take down posts in regards to H’s health or my adoptions.  I may go in and rewrite certain things…I want people to know how good God is in all the ways He worked out things in regards to those subjects.  Yet, I want to be sensitive to all parties involved.

Now, this will all take time as I’ve been writing for a long long LONG time.  I don’t even know if anyone even reads my blog LOL…it is moreso a journal for me and an outlet so to speak.  Recipes are a given, my mental health and journey, my faith journey, all of those will still be here and I will still write about.  Also, I will be accepting guest bloggers on a case by case basis.  I may even start my FB group back up.  It was deleted when I deleted all my social media accounts a year or so ago.  I may try and see if there is interest in that.  We shall see.

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Life or Something Like It

What is and is Not in My Control

What is and is Not in My Control

What is and is Not in My Control

What is and is Not in My Control.  I am a work in progress.  Without hesitation, I can tell you that trying to control all the things is 99.9% of my problem.  Well, that and lack of trusting anyone…maybe that goes hand in hand, I don’t know.  It’s a problem.  I know that, get it, and respect it.  There is a problem and I am it.

What is IN My Control

  • my self-care
    • I get my hair done
    • Massages
    • Tattoos
    • Alone time at night
    • Reading
  • asking for help
    • Reaching out to family
    • Communicating with Bart and being vulnerable
    • Therapy
  • my decision
  • the friends I have
    • I don’t do this one well
  • my actions
    • I have apologized to those I need to
    • Forgiven most people I need to
    • The Lord has made me HYPER aware
  • my boundaries
    • Hahahahaha
  • my thoughts
    • Oohhh….
  • my attitude
    • Well….
  • my words
    • Uhmmm….
  • what I say
    • Learning how to use them
    • Learning how to RESTRAIN from using them
    • Work in progress

What is OUT of My Control

  • who likes me
  • past mistakes
  • other’s feelings
  • what others think
  • other’s apologizing to me
  • other’s actions
  • what other people believe
  • weather
  • who loves me
  • other people’s time
  • someone else’s distraction

What is on Your List?

My struggle in the “out of my control” list is who likes me (why does this bother me so badly), past mistakes (I can’t forget), what other’s think of me, other’s actions, what other people believe, and who loves me.  Those are my achille’s heel problems.  What is on your list?

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Silence with a Side of Stirring

Silence with a Side of Stirring

Silence with a Side of Stirring is the only phrase that I can use to make sense of what is going on in my mind.  There is SO much I want to say.  In saying that, I stay silent for fear of judgment, isolation, retaliation, and so much more.  What people need to realize is that if someone is silent…don’t mistake that silence for ignorance, apathy, or stupidity.  I have not been silent for any of those reasons.

In this season, or new year, I have been reading a lot of books.  I read books on the Holocaust because the resilience of the Jewish people and the Gypsies inspire me.  In the face of such pain, trauma, starvation, and so much more they rise.  I have also been reading a lot on trauma, making peace with your past, working through unforgiveness, and so much more.  In March, I only read a couple of books and started a couple more.  I intend on finishing those I started and working through my library.

My goal is to work through some of the things, in my mind, through questions, comments, and statements made by the authors of the books I’ve been reading.  There are still some things I am processing through and I have to stop and mull some statements over.

Quote

I read something on Instagram (of all places) that says “A history of trauma will have you mistaking peace for boredom.”  That is where I have found myself.  I have gone from many children, in my home, to few and it is strange.  It is a strange feeling to hear myself think or listen to myself breathe.  Everything that surrounds me and everyone is loud.  I have a lot of people in my life and I love the noise of the laughter, discussions, and busyness.

Now, it isn’t so busy.  I have married children, children in college, and then those at home.  It’s quiet.  Painfully so.  In that quietness has come peace.  A peace I never thought I would experience in my lifetime.  I thought my days would have a shorter number because of the constant state of stress that I lived under.

Don’t get me wrong, there is still stress, still stressors, still medical issues, still some busyness, but not near what I was experiencing.  For instance, today, we are down a vehicle, on spring break, one kid is having surgery, another has obligations, a mom that needs to see my face due to some severe health issues, and phone calls to be made.

I feel like I need to go back to work or volunteer or do something.  My days are spent resting (quiet literally), reading, somedays I binge watch television, I clean, organize, cook.  After school lets out, it gets hectic with homework and running kids from here to there and yonder.  Also, I keep my sweetness on 2 days a week, so she completely occupies my time.

Peace vs Boredom

According to Webster’s Dictionary, PEACE means “a state of tranquility or quiet, freedom from disquieting or oppressive thoughts or emotions, harmony in personal relations .”  On the other hand, BOREDOM is defined as “the state of being weary and restless through lack of interest.”

Basically, what I thought of as being “bored” is actually the definition of “peace.”  That is so weird to say and it is even weirder to feel.  I am not weary, restless, or lack interest in things.  I just feel weird with the silence and no fires to put out.  For so long, that’s what I did.  I would get up in the morning, fill up my water pistol, and walk downstairs into hell and put the fires out at my feet.  Fight, flight, freeze, fawn mode is the state(s) that I lived in for years.

I don’t have that anymore.  It’s like, “now what?”  What do I do with myself?  It is quiet.  I only do one load of laundry a day.  There are not 5 dogs barking in the house, no 30 cats waiting to come in and eat, no chickens to feed/collect from, no drama, no fighting, no hospital stays, nothing.

I find myself, randomly, breaking into a fit of tears over nothing and everything all at the same time.  It’s like my body is releasing all the tension that has been collected for the last 16 years.  I don’t think I go a day without crying, randomly.  All things are triggers.  I am beginning to allow myself to feel for the first time in a long long time.

Revelations and Realizations

This past weekend, I was able to visit with all of my children, at one point and way or another.  It was a bittersweet feeling knowing they were all so close yet not all under my roof.  I wasn’t sure how I would handle one visit.  My son and I had great conversation and I revel in the fact of how our relationship has changed.  It is so good and it forces a communication that we have both longed for but didn’t know how to achieve.  We are slowly achieving it and I’m so thankful and proud of the young man he is becoming.

Another son came and we had some deep conversation.  Conversation that we typically have via the phone but this time, I got to see his face and he see my face.  Sometimes that is so needed.  I look at him, in awe, of where he is in life and that he is growing up and making some good (and bad) adult decisions but is trying to do his best.  That’s all I could ever ask for.  We had fun running around town.

My girls (2 of them) were able to come over and we enjoyed our grandbaby and soon to be grandbaby.  We laughed, ate, messed, and gobbed for such a long time.  It was so nice.  My adult children are coming into their own in what they like and what they don’t like.  They are such good wives and moms.  I love it.  I also love that I have their significant others to help do some things around my house…cook…and just let me be me and love me regardless.  It must be hard coming into a family like mine.  Bless them.

Bart and I met up with our third daughter.  We hadn’t seen her in a while and she was able to come down.  We met and gave her some of her treasures that we finally found upon FINALLY unpacking ALL the boxes from our move.  That has been a thing…so hard and emotional to go through them all (and there were so many).  I was able to find most of what she had been looking for and we got her some groceries and snack foods for her trip back to where she stays.  I said the things that were on my heart and I was able to hug her.

Relearning How to Do Life

Bart told me, not to long ago, that I had to trim down my cooking.  I’m used to cooking for 10 or more people.  I don’t think I have ever cooked small.  I can make a casserole out of leftovers.  Shelf-cooking is a daily happening.  I don’t need much to feed a ton of people.  Yet, I can’t figure out how to cook for just a few.

The other night, I made a ham, turkey, bacon, potato type of concoction (needing to use a lot of 1/2 packages in my fridge and pantry).  I thought I was doing good.  Then, I realized, I had enough to fill up 3 13×9 dishes :/  I kid you not.  There was a 1/2 package of turkey, 1/2 a pound of bacon, 1/2 of a thing of Ky Legend Ham, about 6 potatoes, some leftover spinach, you get the point.  So, we ate on that for a week.  I froze the last whole one (we are having that tonight).  Honestly, I can’t cook for a few.

Can anyone relate to this?  I mean, I can leave the house for 1 hour to run to the store and it is okay.  We are thinking about downsizing our vehicle because one kid is close to being able to afford a car, the other is getting ready for his permit, and then our youngest…well, we have to cart him around.

So strange.

What I Can/Cannot Control

I am learning that I can’t control other peoples words, actions, or thoughts.  What I can control is my reactions.  If something seems “off”, I have the ability to make phone calls and find out the truths that help soothe my soul.  I can’t control if someone is being honest, but let me tell you, it is easier to remember the truth than to remember what lie you told what person.  That has to be hard to come up with.  I’m at peace, regardless.

It is truly sad what some people say and how others are so easily manipulated.  People I have known for a lifetime believe all the bad things without stopping to think “is what is being said indicative of the last XXX I have known this person?”  If it doesn’t match up, use your words with that person and not by gossiping or assuming.  It really is that simple.

So much to say, but my boy baby is on his way home from a procedure and he needs my attention.  Peace.  I am at peace.  I am not bored and do not need to fill up my life with unnecessary crap.  This is a season for healing…once I’m healed, the Lord will guide me to my next project.

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