Adoption, Medical Issues

Turning the Page of a Book to a New Chapter

Turning the Page of a Book to a New Chapter

Turning the Page of a Book to a New Chapter

Ethiopian Adoption

My baby came to us when he was 5 yrs old, after a long, intense battle to bring him to America. Being a child of color, more aged, and a boy, his odds were against him ever getting adopted. See, little black girls turn into sweet gorgeous black women. Little black boys turn out to be thugs, murderers, etc. There is a sad stigma, and that does not mean it is just in America. There is racism in the country of Ethiopia as well. Suppose a male child is three or younger and “caramel” in color. He is an excellent child to be adopted. If a male child is four or above and darker, that is a lot of odds.

How can one look at that face, those eyes, that smile and say he is going to be ANYTHING but a child of the King and a warrior for His kingdom? This baby, this baby, I cannot even. My heart bursts with love, pride, gratitude, and thankfulness for what the Lord did in our story. I seriously cannot even.

Discovering He Was Deaf

We did not know he was deaf for almost a year, LOL. He was learning the language and how to live in a family and acclimate to the USA. That was his only job. To learn to be loved, to know he is safe, to help him with his loss and grief of not being with his family and beautiful country. He was, at one point, trilingual. Oh, and he was LOUD. He could speak and worked hard at his broken English until he mastered it. After almost 6 yrs, he still says a few words wonky, LOL.

“I No Hear In That Ear.”

On his birthday, my mom calls to sing to all the kids. She always calls in the morning. I answered the phone, and I knew it was her, so I went ahead and called him upstairs and handed him the phone. Now, remember, he is an Ethiopian who had only been home for eight mths. I put the phone up to his right ear so he could listen to her sing. When I did, he said, “mommy…I no hear in that ear.” I laughed and said he was a funny boy, and I raised the phone to his right ear again. He said, “Mommy, I no hear in that ear.”

Understandably, he switched ears and smiled as she sang. He is a man of little words, so as he was grinning (he thought she could see his approval), he handed me the phone. I was sitting there, with my mouth opening, looking at him like he had an eyeball that had just sprouted up on his forehead. I held the phone and could hear my mom speak, but all I could say was, “what do you mean you can’t hear in that ear?” He said, “I no hear in that ear.” I could’ve caught flies with my mouth.

I’m Sorry, But What???!!

I put the phone to my ear and said, “Martha….he says he can’t hear out his right ear…I gotta go and figure out what the heck he is talking about.” We got off the phone, and I looked him square and said: “WHAT THE HECK DO YOU MEAN YOU CAN’T HEAR OUT OF THAT EAR?” He took his hands and clapped them on my cheeks. J pulled my face, nose to nose with his face, and said: “MOM, I NO HEAR OUT OF THAT EAR.” I asked if he heard out of that ear in Ethiopia. He waved his hand like it was nothing, saying, “No. I no hear in that ear in Ethiopia (that is how he pronounced it).”

Bumfuzzled

I think I sat there staring at him for 30 minutes. I’d plug one ear and talk. He could hear me. I would plug the other ear and talk. He could hear me. I did not get it. At all. I turned all the fans on, made him turn around, and whispered. He heard me. I am stumped. In a last-ditch effort to understand what was happening, I got in the van with him, turned up the radio, lowered all the windows, and whispered. Guess what? He heard me. Either he was insane, or I was insane.

ENT Part 1

I took him to an ENT. We did hearing tests. He was in the “soundproof” booth, and the lady said some words, and he repeated them while one or the other ear was plugged. He did it. She said he was fine. In another moment, “I am such a bad parent because if he is hard of hearing in that ear, I didn’t know. Also, I didn’t do anything about his inability to hear. The audiologist said he was fine, but I want a second opinion from a friend. She is good at what she does and she is free. I will leave this alone. If she tells me that he is fine, I will assume I am nuts. Also, I will assume he is nuts. We are all just nuts.” Yes, that is the long run-on sentence in my head.

ENT Part 2

I headed to see my friend Susan Brown. She did her initial stuff and then put him back in the booth. I sat in the booth with her. This time was different. She said things, but she covered her mouth. When she did that, we discovered that he was stone-cold deaf in his right ear. I didn’t realize that he was reading my lip and everyone else’s lips. Most people are deaf from either their outer ear to their eardrum OR from the eardrum to their brain. J is deaf from the external eardrum to the brain. He has all the mechanics of a “good” ear….he is just deaf. We are guessing he was born this way, which explains SO much.

ENT Part 3

J was pretty stoked when I took him from Susan to the NEW ENT. I told him we were going to see Dr. Jones. With his wide eyes, he said: “We are going to see DR JONES?” I said yes, we are. He is going to check your ears. I asked why he was looking at me like that, and he said, “Dr. Jones? As in Indiana Jones?” I smiled and said, “No, Dr. Shawn Jones.” Let down.

Stupid Question

As we talked, I asked Dr. Jones if this could be hereditary? He said it could be, and why do I ask. I explained to him that my mom was born without a bone in her ear and that she was deaf. I told him that she had surgery, and they placed a metal plate there; now she can hear. At that moment, the dr was staring at me, the nurse was staring at me, and J was silent. I couldn’t figure out the silence.

Dr. Jones leaned WAY into me and said: “Brandi, is your mom black?” I said, “No. She is a little short redhead. Why are you asking me if she is black?” He smiled and said, “Brandi….your son is black.” Duh, I forgot. I don’t think about things like that, so I felt pretty stupid. After many visits, many types of hearing aids that did not work, and learning some sign language to help him in crowds, five years later, yesterday was the day we turned the page to a new chapter five years later.

ENT Part 4: Surgeon

We were in Louisville for Dr. Severtson to perform a BAHA surgery yesterday. Usually, this surgery would have a titanium screw, and in about six mths or so, once it is healed, you snap a hearing aid on behind your ear. The sound bypasses the ear canal and goes straight to the brain. The post requires A LOT of attention and maintenance. We were going to do that because the older J gets, the more it bothers him about his hearing. I get that. Our dr was recently approved to do a new type of BAHA hearing aid.

Instead of the titanium screw, he put in a magnet. This takes 2-3 mths to settle in and heal. Once that is healed, we go back to the processor. His hearing aid will also have a magnetic on it, and it will just stick to his head, behind his ear, and it does the same as the original. This is good because there is zero maintenance. You get your processor quicker. He is the first in our area to receive it, so we can hopefully help other families. More importantly, he will be able to hear out of both ears for the first time in his life. How freaking cool is that?

Recovery

The recovery is not fun. He has to keep his head wrapped for three days. Also, J cannot wash his hair for a week or so. In the end, it will be awesome, and that is what I have to remind him. I am so stinking excited. He is excited too, but he is hurting pretty good, and his incision site itches. Which is driving him bonkers. All in all, welcome to his new and improved HEARING story 🙂

 

Adoption, Guest Blogger

Meet my Guest Blogger and Sister Tera

Meet my Guest Blogger and Sister Tera

Meet my Guest Blogger and Sister Tera

 

Do you ever step back and take a look at where the Lord has had your journey? Reflection is an amazing reminder of our sanctification process. Sanctification….the word I view with both dread and anticipation. It is God’s plan of growing us into the likeness of Christ. Sounds lofty, but what does it require? Sanctification requires stretching. I am not a fan of being stretched, but the Lord has stretched me over the last several years in ways that I would never have asked, but in ways that I would never trade.

Memories

Recently I took a look at the blog I kept during our adoption processes. We have six children, three of whom joined our family through adoption. These three were older when they joined our family and all came home with memories of their life in their home countries.

During the adoption process, my blogs consisted of all the typical thoughts and anxieties that a mother exhibits while waiting for her precious child to be in her arms. Nothing ever happened on my timetable. What was the Lord thinking? Didn’t He know that our child needed to be home? Also, didn’t He sense our pain in the waiting? Wait, didn’t He part the Red Sea? Wasn’t He capable of blasting through the Red Tape? I feel anxious typing all of that right now! So, as I re-read my entries I ran across this note that typifies what I pray the Lord has taught me and continues to teach me in my walk with Him. We were on our way home with our newest son.

Previous Blog Post

This week we have watched God’s hand guide every aspect of our journey. Lots of travel troubles, UGH. Through it all, when I would feel anxiety welling up in my heart, I would hear Him asking me, Do you trust me? Also, do you really mean all the things you say to everyone else? Do you trust me to work out circumstances according to My plan, not yours? Finally, do you recognize that you are not in control? Over and over, I know that He was and is telling me that in good or bad I must choose to trust that this journey is HIS.

This journey of my life is the one that He has planned and intended. I still get very anxious, wanting to control situations and people, but honestly….deep within my soul, I do trust Him. I may not like the plan, but I trust that He has it ALL worked out. I’m on a plane right now on our last leg home from bringing home our son. We are surprising the other kids with an early flight home.

Soon we will be the eight of us. Our sweet boy is sleeping peacefully. He fully trusts us as his parents. We know where he is going and we know what is in store on the other end of this plane ride.  There was a plan to bring him home. Everywhere we’ve led him, he has willingly gone with a smile on his face, handheld out to take ours. Fully trusting. May I be the same with my Heavenly Father who has the plan?

Encouraging Words

As your family journeys along in life, I ask you to trust Him with the plan. Recognize that He sees the view from above the plane. The full view. You only see out of your little window. How we react to our journey will show the world that we trust HIM and love HIM more than we trust and love our plan. Ask yourself what you desire more…the child to be added to your family, your children to be whole, relief from difficulties, or is your desire for a relationship with the ONE who made both you and your child?

Lean Into Him

Marriage. Parenting. Adoption. Life.  Complex, beautiful, hard.  Embrace the hard as God’s provision for your sanctification.  Growth is never easy. Cling to Him.

Isaiah 55:8-9 “The Lord says: ‘My thoughts and my ways are not like yours. Just as the heavens are higher than the earth, my thoughts and my ways are higher than yours.’ ”

 

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.

 

 

Depression, Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Breakthrough of Letting Go

A Breakthrough of Letting Go

A Breakthrough of Letting Go

Sometimes I don’t even realize I’m trying to control a situation. For a year (or more), the Lord has not moved. 

Then I sit back, and I reflect.

I think about all the phone calls, the late nights researching, the bookmarks I’ve saved, the groups I have stalked, the tests I have read and reread…..but…

Where was my Jesus?

I realized: ~ that my depression was stronger ~my prayer life had waned ~my mood was somber ~my temper was short ~my resolve was shorter ~my study life was nonexistent ~my relationships were strained, and ~my desire to go to church was void.

On June 17, 2018, I found Jesus again.

I say that knowing that I have always had Jesus. He has never left me or forsaken me. Today, He imprinted on me. He gently turned my head back around to face Him. I allowed things to happen that I would generally never let out of fear.

Fear has no place anymore.

As I wheeled my son in church, late, past 1044 people (not really, but it seemed like a lot when your baby is in a wheelchair), I kept my head down. I tried not to make eye contact with anyone. If I did, I would melt into a puddle of tears.

Then I turned around.

There stood friend #1, and before I knew it, friend #2 walked up. There was a brief moment where I explained a few things. Then I had to walk away because I was fixing to lose it. In no way did I want to release that control and let anyone see me cry. From the hallway, I hurried back into the sanctuary, and we were in the middle of worship.

I couldn’t even open my mouth or my eyes.

I just stood there, in the pew, with my head down. There were no thoughts in my head. At that moment, I was trying hard not to cry because I was with my children. I found myself walking to the altar to pray when they began another song. My feet were moving without the permission of my mind. I knelt, and still, there were no words in my head out of my mouth. I just sat there and absorbed the music.

Mamoo

As I was praying, I felt a hand, and I looked over, and Ms. Mamoo was praying over me. She is the most eccentric woman I have ever met. She is stunning with bright blonde and pink hair. Her legs are to die for, and she is about 86 years old. There is a strength in her. She kept telling me to “hold on,” that healing would happen and that I needed to hold on to that statement. I felt my body release. Then, I heard these sounds that thinking back, was me moaning in an animalistic way.

The music stopped.

I hurried through a door to gather myself, alone for a moment. I walked around the corner to check on H. He was beginning to melt down because he could not pick up a whale snack. He kept dropping it and shaking. As I went in to help him, the ladies said there was a man at the door that wanted to speak to me.

I have never seen him before.

This man was emotional, and he asked me to bear with him. He said he saw me wheel my son past him. He felt the Lord leading him to pray over him, and at that moment, he asked permission to do so. I went back into the room and scooped H up. In his next request, he asked me if he could hold H. I was okay with it; strangely, so was H. H was completely at ease with this man.

His prayer

What a beautiful healing prayer this man prayed over my son in the church hallway. I will never remember all the words he said. I do remember the stillness of H. The electricity in that little huddle, the tears that this man and I shed. I was humbled.

Faith.

Our sermon was on faith and how you must tie a knot at the end of the last thread, you are hanging onto. You must trust that you will land on Jesus’ hand if you slip. This sermon was exactly what I’ve been battling with for the last month or so. Jesus has been working on me to have faith. To stand strong, to release control because He knew H before He created the earth. He knew who would carry him, and He knew who was going to raise him. God knew that H would go through this. He already has the perfect provision if I get out of the way and stop controlling the situation.

In the end

I went to get my son. H was gently placed in his chair, and I wheeled him into the sanctuary. Looking up, I saw Richie, our pastor, and before I knew what I was doing, I wheeled him up to the altar. The Lord gave me another huge chunk of my rainbow at that moment. As I looked up, people from all over the sanctuary came forward to lay hands on H, Bart, and me. Mamoo anointed him with oil as she prayed.

There stood men and women of all ages and children. I could hear a gentle roar of prayers being spoken over our son. In the midst of that, I felt a hand on my shoulder. It was a familiar hand, with a familiar smell and a slight tremor. Ms. Jan, through the crowd, touched me. I never saw her face. I just felt the warmth of her hand, and I could hone in on her voice. H never moved. He never cried. He just sat there and took it all in.