Medical Issues, Opsoclonus Myoclonus Syndrome

Part 3 Welcome Home

Part 3 Welcome Home

 

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

What I Envision Versus Reality

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

Overstimulated Moment

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

Ray of Sunshine

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

Absorbing my Surroundings

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

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

Holland and Its Beauty

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

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

Seeing Things from a Different Perspective

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

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

Live life and love without abandon.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 2 Uhm NO

Part 2 Uhm NO

 

Part 2 Uhm NO

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

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

When we started creating our family, we had definite plans.

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

N’s Journey

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

So with V, we started planning the trip. A, we started saving for the trip. Then, with N, we got on that plane and headed to Paris, France, to see all the things we could see on a 10-day trip.

Then there was God.

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

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

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

But then, there was God again.

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

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

Part 3: Welcome Home.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We

Part 1 Heading to Paris or Are We? Let’s all take a moment and soak in the beauty of David. Michelangelo was a master of his craft. God created this man and honed his craft to leave people like me breathless. I love art and always have had a great love of art. I enjoy expressing myself and my emotions through painting, sketching, and doodling. My dream is to go to the Louvre in Paris. I want to absorb it all. I don’t want a guide. I don’t want to be in a group. I like the freedom to walk, stand, admire, and ingest all the glory of all my favorite artists. It is a dream. To see this in person and the Headless Angel, oh and to see the Mona Lisa. Oh. My. Word. Can you even imagine?

25th Anniversary Trip

The GLORY of this is that I’m going to go!!!!! Next year, Big Daddy and I will be married for 25 years. God willing, our trip to celebrate will be in Europe. Big Daddy does not care for museums or art, but I could and probably will spend an entire day there. I want to revel in the beauty of these timeless pieces.

When we go on vacation, I spend MONTHS researching. I will find places that we both want to go to while there. There will be a time when I research all the restaurants and incredible attractions and prep (financially) for any things that require money. I will have a complete itinerary. When we went on our 20th anniversary, I had eight pages of places, addresses, phone numbers, and websites to go to Niagara Falls! Planning is fun for me. I am SO excited. Niagara Falls is on my bucket list. This is a dream. Bart and I live in the US. We have visited Canada, Mexico, and Africa. We still have a few more continents to go before I am content 🙂

Flying Away to Paris

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

My Version of Welcome to Holland

When I read this poem, it reminded me of our trip that we ARE planning for next year. My mind began to wander, which is the scenario I imagined.

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

Part 2: Uhm, NO!

Medical Issues, Opsoclonus Myoclonus Syndrome

Welcome to Holland

Welcome to Holland

Welcome to Holland is a poem that I have always loved.  It is a different way to look at things when life does not go as planned.  There are 4 of my 7 children who have special needs.  We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

Planning a Trip to Italy

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

Discovering You are in Holland

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

 

Guest Blogger

I Wonder What I Will Be Like

 

I Wonder What I Will Be Like

I Wonder What I Will Be Like

I wonder what kind of mom I will be

{I} get anxious thinking about it

I wanted this for so long

But now that it is here, I am scared

 

Love and Fear

I love you more than life itself

But you scare me 

I don’t want to blink and you will be gone

The thought of losing you is unbearable

And you aren’t even here yet

 

My Desire

I want to be a good mom

But I know I will make mistakes

I want to admit to you when I make a mistake

So you know that it’s ok to make mistakes

As long as we learn from them

 

What I See

I see so many families

Hurting, every day

Because of poor choices, the parents made

I can’t be that kind of mom

You don’t deserve that

 

What You Deserve

{You} deserve everything

You deserve the world

I want to preserve your innocence

Shield you from this world

 

Will I?

I wonder if I will be good enough

That is the theme of my life

It has always been there

It always will be

 

Love

I love you more than life itself

But I wonder if I will be a good mom

You deserve a good mom

I want to be that for you

 

 

Depression, Guest Blogger, Medical Issues, Suicide Awareness and Prevention

The Dark Days

The Dark Days

In this piece, The Dark Days, my guest blogger describes what depression looks like for her.  Yet, she perseveres and powers on.

The Dark Days

I never know when they will come

Always lurking around the corner

Like a lion ready to pounce

 

They come without warning

When I wake, I feel it

The darkness closes in

And I welcome it

 

The darkness is familiar to me

Though it is full of sadness and hurt

Trauma and the like

 

Part 2

But I am not surprised

I know when the time has come

For another dark day to begin

 

Therapy helps

Medication helps

But the dark days are still around

 

 

Brought on by stress or pain

Or sometimes for no reason at all

Those days when all I want to do

Is lying in bed and hiding from the world

 

Part 3

I wonder what made me this way

Why do I have these dark days?

Sometimes I understand

Sometimes I don’t

 

I used to be told

You have everything

How can you have these dark days?

 

It’s all in your head

It isn’t real 

Then why do I feel this way?

 

Part 4

It’s not that I want to feel like this

I didn’t choose this life

I don’t choose the dark days

 

If I had to choose

I would choose light

Happy

Sunshine, rainbows

Sadly, they don’t come that often

 

Part 5

It isn’t my fault that I am this way

That the dark days chose me

I can’t help it

What I can do is try to mitigate the damage

 

Damage control 

I never know when the next dark day will come

But I can take my meds

I can go to therapy

I can talk to the few people I trust

 

Part 6

Maybe

Just maybe

The dark days will go away

I can hope

I can dream

But for now, the dark days are here

 

The dark days don’t define me

They are not who I am

I know who I am

I am confident in who I am

 

Part 7

But on those days, sometimes I forget

It is a talent those days have 

I don’t mean to forget, but sometimes I do

It’s like a fog over my mind

 

A dense, soupy fog

That distorts words

Distorts feelings

Emotions

And people 

 

Part 8

I have to be strong

{I} can’t let the bad days hold me

I can’t let myself down into that pit

The pit where I have spent many a night

 

The pit is where the darkness leads

The darkness can’t take me there

No more

No more

 

Part 9

So I will soldier on

Put on a brave face 

When the darkness comes 

 

Because the darkness can’t take me

Not now

Not ever

 

Depression, Guest Blogger, Medical Issues, Suicide Awareness and Prevention

Powerful Note to Self

This Powerful Note to Self is by a guest blogger working through some intense emotions and trauma. Remember, if you are a survivor of anything….it is NOT your fault! That can be hard to believe, especially if you struggle with implicit memories and cannot remember.

Implicit memories are memories that are from conception to three years of age. However, explicit memories are from the age of three until the present moment. Those are the memories that you can pull from and have validation. Implicit memories are ones you “feel.” They, to me, are harder to process and reconcile.

Sadly, any type of sexual abuse or molestation is devastating. It can take years to heal. Honestly, it may never heal this side of heaven. That is something that I’ve had to settle within myself to process things. My guest blogger is deep in the trenches. I am so proud of what she is doing to get help.

Powerful Note to Self

Powerful Note to Self

Note to self

This is not your fault

You are not the one who made the choice

All you did was follow a voice

A voice of someone you were supposed to trust.

Someone everyone else said you could trust

 

Not Your Fault

 

It’s not your fault

that you are scared to love

Or scared to be loved

{Or} that you are afraid to be touched.

 

Stating Truth

 

If anything it is his fault

He chose to hurt you

and He chose to betray your innocent trust

He chose to do the unthinkable

and steal the innocence that you shouldn’t have lost

 

Stop!

 

so stop blaming yourself for his mistakes

you were not and are not at fault.

You didn’t make those choices

So stop claiming it as yours

 

Depression, Guest Blogger, Medical Issues, Suicide Awareness and Prevention

I Am Broken

 

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I Am Broken

I am broken

And I am not normal

I am not who I want to be

 

Instead, I am the one thing I have been raised to not be

The one thing that will make me lose people close to me

I am not who my parents expected me to be

Also, I am disappointed in their eyes

I am a disappointment in my own eyes

 

Struggling

 

I know it is wrong

Sadly, I know its not meant to be that way

I have not chosen to feel this way

It just happened

 

I have actively fought it

Honestly, I would rather not acknowledge it than admit to it

I don’t want to talk about it

And I don’t want to act on it

 

Normal

 

All I want is to be normal

To be who I was meant to be

Not who I have become

By choice or not

 

I hate myself for my feelings

I would rather just ignore it

Then deal with it

 

I am not normal

Sadly, I am broken

I AM NOT OKAY.

But one day I will be.

What God Says

God says He loves us.  He sent His son to die on the cross for us.  When we come to Christ, He throws our sins as far as the East is from the West.  Also, He says that Satan is the Prince of the Earth.  He comes to steal, kill, and destroy us all.  We have free will and it is a giant butthole.  God will not supersede free will, though He can at any moment.  He loves us and that is enough!

The Trevor Project

 

Depression, Guest Blogger, Medical Issues, Suicide Awareness and Prevention

Depression is Gray and Black

Depression is Gray and Black

 

Depression is Gray and Black

 

Depression 

Is a dark and twisty place

It’s when your inner thoughts are gray and black

There is no light 

There is no white 

Just gray or black

 

The gray is sad but bearable thoughts

This is where you look back at what’s wrong

 grieving the way you handled it

Want to do something to change it but can’t

 

These thoughts I think are easier to voice 

To seek help.  Ask someone to hold you accountable

To try and continue your life 

 

Which is Worse?

 

The black well that is the worse 

The dark and the bleak 

These thoughts are much more dangerous

 

These are the thoughts that keep you imprisoned in your mind

Keep you in bed for days 

Give you the feelings of why even try?

 

These thoughts are almost impossible to voice 

The darker the thought the harder it gets to talk to people 

The harder it gets to seek help 

And the harder it is to continue anything in life

 

The In-Between

 

Somewhere between the gray and black, there is a turning point

From being sad to wanting to crawl under a rock and die

I’m not sure where the begins

I just know that’s where it ends.

 

But surely there is a way to continue life looking towards something 

Instead of looking back at the past 

If you can get there that’s when you can see a light

It starts off small almost like a dot

 

Finding the Dot

 

For me trying to find that dot is the hardest part 

Trying to find something worth looking for the dot.

But once I find it I plan on holding on to it.

 

Because the dot will eventually grow 

It will become the light that I seek. 

I just have to hold on a little longer. 

And keep looking ahead.

 

Depression, Guest Blogger, Medical Issues, Suicide Awareness and Prevention

Misery Loves Company

Misery Loves Company

Misery Loves Company

Misery loves company they say

But is it the misery the person wants to share

Or are they looking to someone for help?

But instead, bring them down too

 

Is the misery more infectious than the need for help?

Or does the person just not want it enough

Personally, I think I would rather suffer alone

Then to bring a friend down with me

 

I don’t want my friends and family to feel like this

I wouldn’t want anyone to feel like this

Like the whole world is sitting on my shoulders

just waiting for them to make the wrong move.

 

Just Waiting

Waiting for them to slip

Waiting for them to pull someone in

Waiting for them to not be alone

So they will share the misery

 

I don’t want to be infectious with hate

I don’t want to put bad things in people’s mind

I’d much rather put in light and love

 

But where can I start

To get back to that person

That everyone loved to be around

The person that was infectious to laughter

The person that loved others and at least liked herself

 

I guess I should start at the beginning again

And try to learn a new way of dealing with my sin

Instead of storing it away and letting it fester

I need to let it go and pray that it will work out in the end

 

Because I’d much rather love myself and help others

Then hate myself and essentially drown them

I don’t want to feed them the lies that I believe

That I’m not good enough

That I’m not worthy

 

Because we are good enough

We are all worthy of love

And not the misery.