Medical Issues, Opsoclonus Myoclonus Syndrome

New Video from NORD

New Video from NORD

New Video from NORD

Here is a brand New Video from NORD. For those who have no clue what NORD is…it is the National Organization for Rare Disorders. This site does not have run-of-the-mill type of conditions. By “run of the mill,” I mean those diagnosed frequently.

Awareness

This site is all of the hardcore, rare, little to no treatment type of condition. I am very excited that Mike Michaelis and his team have worked hard on the OMS Life Foundation.

Who DOES NOT buy things from Amazon? If you do, you can go to Amazon Smile and make all your purchases there. It is the same as Amazon, only this time, a percentage of what you buy goes to a charitable donation.

Amazon Smile does not cost you a dime:

  1. Choose your charitable organization and type in “OMSLife Foundation” (in Cypress, TX).
  2. Select that option.
  3. Anything you spend will help the foundation raise money and increase awareness of H’s condition.

NORD Rare Disease Video Library

“The NORD Rare Disease Video Library houses educational videos on rare diseases for patients, caregivers, students, professionals, and the public. NORD works with medical experts and patient organizations to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorship. NORD is solely responsible for the content.”

All About Opsoclonus Myoclonus Syndrome

All About OMS

If you click on the above link, it will take you to an awesome video that explains OMS very simply. All the things in my head have formed into a video. I am pleased as punch for them to highlight this condition.

OMS is not a “money maker” because it is so rare. That means funding and research are not done because there is nothing for big pharmaceutical companies to make. These kids are like human experiments. It is all trial and error.

Let’s bring light and awareness to this condition and help kids get a PROPER diagnosis and begin proper treatment. I don’t want another family to deal with everything H has.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Reflecting on an Anniversary I Would Rather Ignore

Reflecting on an Anniversary I Would Rather Ignore.  It has been 5 years.  So much is the same, yet so much has changed.

But, on this day,

Dys- Learning Disabilities

Our Lives Changed Forever

Anniversary I Would Rather Ignore.

What began as a somewhat normal day.

Turned into……

A nightmare.

Get up at 8:15 am

G got H up and ready to eat breakfast.

He ate normally.

Noticed he was a bit needy.

He wanted to be in my lap, at all times.

He was a bit whiny.

The boys saved me and took him to their room to play with Legos.

That lasted for 10 minutes.

I kept hearing N say “buddy, you are not in trouble…why are you shaking and screaming?”

I called him back into the dining room.

We snuggled.

He still was throwing a fit.

I had him sit on the step to calm down.

As he shook, he cried.

I told him to stop shaking and he could get up.

He stopped.

He ate lunch.

N put him down for a nap at 12:30

We were all relieved because we would have no screaming time.

At 4:15, we got him up.

He was carried downstairs (as normal) and put in my lap.

We snuggled until he woke up.

I told him he needed to sit on the potty (5 steps away).

I put him on the floor.

He screamed.

He Fell

I thought his legs were asleep, so I picked him up and rubbed his legs.

After about 5 minutes, I put him back down to go to the potty.

He fell again.

Concern began to enter my throat from the depths of my toes.

I had N go across the room (about 10 steps away) and I had H walk to him.

He wobbled like he was drunk, cried, shook, and fell.

A Year Ago Today

That’s when I knew……

Our lives would be forever changed.

Please pray for a miracle.

Romans 4:18a “Even when there was no reason for hope, Abraham kept hoping—believing….”

Romans 4:20-21 “Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.”

Jeremiah 29:11 “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

2 Years Ago Today

He walks, unassisted.

We had our wheelchair ramp removed.

He can ride a tricycle.

Most of the time, he can feed himself.

He struggles with this speech.

Also, with behavior.

Wobbly legs, but better.

Shaky arms/hands are still troublesome.

He runs.

The Meds are working.

God is good.

We have come a long way, but there is still a long way to go.

 

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The Prophecy and The Call

The Prophecy and The Call

The Prophecy and The Call. Last December, we were at church and getting ready to worship. We have been church hunting for a while and landed on Christian Fellowship. Honestly, we knew the pastor and his wife, as well as a few families. We had not been going very long, but it was different than what we were used to attending. This was originally written on June 21, 2017.

People Watching

Before service started, there was a welcome, and then our pastor called up a man because he had a “word” to give some people in the congregation. We have learned that this is somewhat normal but still very abnormal to our family. We were not used to that. So, we sat and watched this man pace back and forth in front of the congregation.

I am a people watcher/reader, and the thing that caught my eye was that he never opened his eyes when he was pacing or talking. He kept touching the insides of his hands. You could tell that he was uncomfortable but obedient. He said that he had had this word from the Lord. Also, he wanted to make sure that it was from Him and not from this man’s flesh. However, he realized through his sleepless nights that this was from the Lord, and he had to be obedient.

The Word

He said he had a word for someone in the congregation, so we sat, listened, and watched him pace. He made his way down the aisle we were sitting on and stopped in front of Big Daddy. I felt like all the oxygen had been sucked out of the room, and my mind was whirling. He asked Big Daddy to stand up. I looked to the altar, where our pastor was standing, and he gave me a look, a nod, and a smile that it was okay.

This man, whom we had never seen or met, told Big Daddy to hold onto his hand. Big Daddy is not a tiny man, and his hands are ginormous, so when he stands, he is noticed. This man said that the Lord was telling him to “Hold on. Hold on tight to the rope and do not let go. To trust and hold on tight.” I felt an energy move through me, and tears flowed freely. This was strange because I don’t usually cry or get swept up in my emotions. The moment was fleeting, but the air was thick, and I knew, in my soul, we were in for a ride.

Come the beginning of 2017, so many things happened.

My daddy had quadruple bypass surgery. Then, my niece was sentenced, and my nephew was close behind her. My daughter went to military school due to her behavior. Also, we had a family issue involving another baby that was devastating. Oh, let’s not forget my oldest daughter called off her engagement. She was downsized at work. We were also fighting with insurance companies for my son’s needs surgery. Add that to my Lady getting sick. Then, the straw that broke the camel’s back happened. We were reminded to “hold on” throughout the first six mths of 2017.

Even More

Big Daddy and I tried hard to win a case during the incident involving a family member. It was simply out of our hands. We knew what we could do to help the situation and were willing, but it was not our call. As I spoke to a friend, she said I needed to “hold onto hope.” She also noted that the Hebrew meaning of “hope” is “rope,” so hold onto the rope. I caught my breath, texted her back, and asked her who had told her that. She said it was a word from the Lord to me. I asked her if she knew the man who had said the same thing in December, and she did not know him. That is twice the Lord has said to “hold on.” I felt like we had held on pretty well.

My Sister

Then the call came. My sister called me on Tuesday, June 6, 2017. Now, she rarely calls me on a Tuesday. We’ll talk on Monday 🙂 I asked her if everything was okay, and she said she woke up to an odd text. She said it was from a friend, a former neighbor, that she used to walk with around her neighborhood. That friend said that the Lord placed my name on her heart and that she was praying for me. I have never met, spoken to, or even seen a picture of this woman. She knows me from what my sister had said, and I’m sure I wasn’t the topic of every conversation, although I am awesome like that. I told my sister I did not like that, and that meant that something was fixing to happen. My sister told me to take it as a blessing, but I was unsettled.

Daddy

After he got sick, H and I spent almost two weeks in the hospital. I missed my family, was tired, and was over it. The doctors had told me 1005 things, and none of it was good. Thankfully, one day, my sister (H’s Mamaw) came up to give me some respite on MRI day.

She came in and handed me my flatter than a flat pillow, my granny’s quilt, and a gift from my daddy. Again, I am told to “hold on” in some form or fashion. I carry that with me to this day. It reminds me that my heavenly Father and my Earthly father love me and know it will all be okay!

 

 

Adoption, Guest Blogger, Medical Issues, Opsoclonus Myoclonus Syndrome

Guest Blogger Big Daddy on Adoption

Guest Blogger Big Daddy on Adoption

Guest Blogger Big Daddy on Adoption

This post was originally written in 2017.

Guest Blogger Big Daddy on Adoption and his thoughts. After having three biological children, we decided to enter the realm of adoption. We believed our quiver wasn’t complete, so the decision was easy. What we didn’t realize is that adoption is HARD. It doesn’t matter what kind of adoption it is. Whether through foster care, international adoption, or one of your relatives, adoption is not for the faint of heart.

Adoption is Rewarding

 

However, adoption is very rewarding. Knowing that you have taken life into your home that otherwise was not wanted or was being mistreated, abused, or neglected is an amazing miracle. God intended for children to be raised by their parents, but circumstances sometimes do not allow that to happen. That’s why we took the plunge to care for the orphans.

Our Wild Ride to Adoption

 

As for our journey, it has been a wild ride. We have had a lot of good days and plenty of bad ones. But so far, we have stayed the course. We have tried to instill Godly values in our children while teaching them honesty, integrity, responsibility, and character. Sometimes we think that we are not making much progress, but honestly, we believe if we are consistent with the kids, they will turn out fine. Each child is different. We have learned how to parent each child with different behaviors and personalities.

 

At first, I was resistant to adoption, but after I met the little girl my sister-in-law and her husband adopted from the Philipines, my heart melted. I saw the love shown and given to her and believed I could do the same. So we decided to do it.

Our First Experience

 

Our first experience with fostering to adoption started pretty good other than the fact that these children were brought to us, and we knew nothing about them. It was hard, especially with Shay, because she was non-verbal at two years old. She never did warm up to me very much. Tay, on the other hand, was very happy and always smiling. Also, they were very sick, and we could not get them well.

 

Then the day that nearly broke us into the world of fostering/adoption happened. The kids were suddenly taken away from us by the Cabinet. We had no idea….one minute, we are raising these kids, and the next minute they are gone. We were told the reason but truly believed the social worker lied about us in a court hearing that we were not present at. I was furious, and it crushed my wife. To this day, she still has the scars of them being taken from us. We had to believe that the Lord had different plans for those sweet children and us.

Never Again?

 

At that time, we told ourselves we would not go through a horrible experience like we just had but decided to give it another go around. We started fostering D and G in the spring of 2007. At first, it was really good, but we learned quickly how many of these children in the child services system could be damaged. To find out the kids you just took into your home were previously abused is a tough pill to swallow.

 

Having to raise children during an investigation of abuse and ensuing court proceedings is not the way it should be. But the kids were safe, and we did our best to cope with the behaviors stemming from their past. We finally adopted them about two and a half years later. Since then, we’ve run the gamut of ups and downs with them. Some days are good, and some days are bad, but in the end, they are loved, and hopefully, they will be able to overcome the terrible start they had in life.

International Adoption

 

Our subsequent adoption was a foray into international adoption. My wife had always dreamed of adopting from the county of Ethiopia. After I met my new nephew from Ethiopia, my sister-in-law’s second adopted child. I was ready to go to Africa. The process was a lot of paperwork and a lot of money. (Not sure why it costs so much to adopt a child who has no home or no one else wants). Within a few months, we had a referral and got a picture of our son. It was amazing how we could love someone so much whom we had never met.

 

The anticipation was unbearable. But soon after that, we could travel to Africa and meet our son. It was an experience like none other. We met our son and spent three or four days with him. We went to court and were granted the adoption. The hardest part was leaving him there. But we were told that it should only be about eight weeks before we could return and bring him home. Little did we know then that eight weeks would turn into 14 months.

Huge Mistake Made by Home Study Agency

 

Our home study agency made a huge mistake, and the US government told us we did not make enough money to bring him home. How ridiculous is that? It’s a shame that money, or the lack thereof, keeps so many people from adopting children that need good homes. When we found this out, we desperately tried everything we could to get clearance from USCIS but were flat-out denied two months later. My wife was crushed beyond all belief. From December 2010 to about November 2011, she was just a shell of a person.

 

Yes, she lived and breathed, but that was about it. She was vacant. And there was nothing I could do about it. I believed that there was no way God would allow us to travel 7000 miles to meet a boy and tell him he would be our son, then him not ever come home. Not necessarily for our sake but for his. He was an innocent child growing up in an orphanage with 50 or 60 other children like him. But God made way for us to get our clearance to bring him home, and in December 2011, we brought J to his forever home. We were made whole.

Here We Go Again

 

After we brought J home, we thought our quiver was full. But God had other plans for our family. In November of 2015, we had an opportunity to take in our great-nephew, H. His mother, our niece, had been in trouble with the law and could not take care of him. H had been living with a man who believed he was the father. He had troubles of his own and agreed for us to keep H for a while. We decided to file for emergency custody of H mainly for his safety at the time. The man he was living with turned out not to be the biological father, and we were granted temporary custody of H.

His Biological Mom

 

His mother got into even more trouble later and was facing a lot of time in prison. She made a tough yet mature decision to terminate her rights and allow us to adopt H. I can’t imagine how hard that was for her. I am very proud of her for sacrificing for her son. H invigorated our family with joy. He has so much energy and is very sweet and funny. However, in June, he was diagnosed with an extremely rare neurological disorder called Opsoclonus Myoclonus Syndrome. He has been through a lot, which has been tough on him and us. But we take it one day at a time and trust in God for healing and comfort.

Adoption is Tough

 

So those reading this and considering adopting do not have preconceived notions of lollipops and rainbows. Adoption is challenging and not for the faint of heart. But the rewards are unending. Giving a child a home and stability is a beautiful thing. Whether they know it or not, children crave structure, discipline, and a sense of worth.

 

That’s the beauty of adoption.

 

Depression, Medical Issues, Opsoclonus Myoclonus Syndrome

My Hero and His Sidekicks

My Hero and His Sidekicks

This post was originally written in 2018.  This is the story of My Hero and His Sidekicks. After an unnecessary Chemo and IVIG 2-day trip to the hospital (we no longer go to this hospital), my anxiety took over my body. It has snowed/iced while we were 4 hrs away at the hospital. My tribe took over and saved the day.

Fella

My man caught a ride, in the nasty winter weather we had, rode and 1 1/2 hrs to where H and I were stopped because my sanity could not do it any longer after two days of no sleep because of sitting in a hospital room. We got food and chatted the whole way home about nothing and everything. He never hesitated.

Future Son In Law

This boy, who wants to marry the girl in the picture, dropped everything to drive my husband 1 1/2 hrs to where I was. He never hesitated or complained. He just asked how we (meaning the baby and me) were and that he was happy to help. This girl in this picture called me on the way home, made me laugh, encouraged me, and chatted my ear off to keep me from wailing.

My Daddy

This ripe old man made me a strap of leather that says, “Hold on tight to God” He made this for me because he knew from the beginning that I would need something tangible to touch to remind me of Christ (and his) love for me.

My Sisters

She and her family prayed fervently for me and spoke wisdom to me while I had my moment driving on the ice. Even though she was tired, she stayed on the phone with me until I had calmed down.

This other sister, well, I can handle just about anything until I call her and she says “hey,” and then I cry. Her voice soothes my soul, and she calms me to my core. She listens and gets mad at the appropriate parts of my stories. She gets quiet in other parts of my countenance, researches, and prays. God knew what He was doing when he created these people to be in my tribe.

My Oak

This mama of mine…this mama of mine…this mama of mine, there are days when I think I cannot breathe without talking to her 500 times a day. She is my rock. I am so thankful she is a FAITHFUL and driven prayer warrior. She listens and worries; Martha has excellent ideas, is encouraging, and never makes me feel stupid. Ever. She always says I’m a good mama, and I learned from the best.

Peach

This pretty girl shoveled the sidewalk, did and put away ALL the laundry, had all my diffusers going, made supper, and loved me and H when we got home. She watched kids, she delegated, and Peach worked on her homework so she could be ahead. She let me sleep in the next day and fixed dinner plates.

Boo

This boy had the kitchen spick and span before I got home. He shoveled the snow/ice away from my garage door, so we wouldn’t get stuck trying to get in our driveway. Amazingly, he loved on H and me like he had not seen us in years. He makes my heart smile.

Gigi

This girl had her chores done, her exercises done, and her schoolwork done. She also helped unload all the excessive crap we hauled home, and she put it all away. There was no drama, no nothing. She played and calmed H while some chaos was swirling around us, getting things put up.

Catfish

This boy took care of all his chores without complaining, and he did his schoolwork. That is quite a challenge some days, but today he did it. He also goofed up and got caught in a sin act, but he quickly admitted what he had done was wrong and apologized. I’d say that is a win-win situation.

Bro Man

This Bro-man got all his chores done and all his homework done, as well, with no complaints. He is loved tremendously by H. He is his lego man person, and their relationship is so precious. I think I’ll keep him.

On this particular day, it took MY village to come and rescue this weary woman’s soul. I’m so thankful that God perfectly ordained each of these people to be in my tribe and to love me and H so well. God is SO good….all the time. I sure do love My Hero and His Sidekicks.

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.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children

Little Lies Along the Way = Fear Amongst Children. Before I move on, I want to say I have MAD respect for nurses, nurse’s aides, child life people, and all the other “worker bees” in the hospital.

Respect.  These are fantastic and under-appreciated people.

With that being said, I have learned a lot of things over the last ten mths of H’s illness. I know the heart behind these statements. I see the ease these sweet nurses are trying to give these kids. Yet with my kid, you aren’t helping much.

Things We Heard

  • Let’s give your arm a hug (preparing to take bp)
  • Let’s clean off your germies (preparing for an IV)
  • It isn’t going to hurt. We are just going to put a straw in your hand/arm (placing the IV)
  • We are going to go downstairs, and they are going to give you a special medicine to help you take a nap (putting under for sedation)
  • Let’s tickle your armpit (taking temperature)
  • Is there a bunny rabbit in your ear (checking ear)
  • Let’s see if you have a heart (checking heartbeat)
  • This is going to squeeze your arm just a little bit (tourniquet for IV)
  • This is going to sound like a rocket ship (the numbing thing that scares the crap out of me)
  • Let’s give your arm a drink (flushing the IV)
  • Let’s take some happy juice (something to calm them before sedation)
  • We are going to go downstairs, and you can take a nap while we take pictures in a giant donut (MRI)

In the beginning, these statements I got.

I understood. I accepted. I even played along until I began seeing small H changes and extreme fear. He resisted “hugs,” afraid of loud noises (rocketship), would spit his water out when he drank from a straw, and when we came to the hospital, he would FREAK out.

If I had a rare hospital visit or stay for my kids, which I have had in the past, I wouldn’t hesitate to do this.  For minor things, I get it.  Saying these things helps kids overcome their fear.  Yet, when you have a child who is in the hospital all the time, it doesn’t work.

H stopped using straws.  He stopped drinking juice or most liquid.  H didn’t want to ever eat a donut even if he saw me eating one.  He resisted hugs.  Tickling him is a thing of the past.  He associated all these good things with fear and hospitals.

I know I come across as this hard mom who is using too technical terms with my 4 yr old, but this is his life. Hospital life is his new normal. Hospitals. In and out of hospitals and doctor’s offices. I have changed my tune during the past few doctors and hospital visits. For instance, this morning, H had to have an MRI done and a spinal tap.

Child Life

Child life came upstairs to talk and play with him until he was sedated and went back for his procedure. They brought this fantastic doll with a hospital gown, markers to draw on his face and pretend medical equipment so he could play with it.

They began using those terms, and I kindly told them I used accurate terminology with him. I discussed with them his irritational fears over things, and because of my lack of knowledge and the previous nurses trying to put him at ease, with what I’m assuming they have learned, we have changed how we deal with things. I also explained that he likes to be called Kid.

The Doll

So, we got out the doll, and I taught the Child Life people and the nurses how we do things. We first drew a face, hair, glasses, freckles, belly button, and chest/back hair on his doll. Then, I drew some veins on his hand. I showed him his veins and my veins. I talked to him about the IV going in and what it does. The funny thing is he knew what most of the stuff did because we have talked about this so much.

We took a wipe and cleaned the area. We counted to 5 and then “inserted” the IV…we even used the same tape they used on him. We flushed Bob’s IV when H got his IV flushed. We even put the sterilizing cap on the end. I covered everything I could think of on Bob.

Astonishment

The ladies were in awe of how H responded, how much he knew, and how I chose to handle things with him (I understand other parents using the above terminology). I explained to them that he has a life-altering condition, and this is now a part of his life. I wanted to take the fear out of the unknown and normalize his situation for him. To take the worry away, I want him to be a student (even at this age) of what is going on in his body. Doing that gives him some control.

This has been a scream-free hospital stay. H has been compliant, polite, and confident. I’m so incredibly proud of him. I cannot even describe how much this baby inspires me to continue to run the race looking forward.