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.

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

The One that *Sees* You

The One that *Sees* You

The One that *Sees* You

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

Trauma

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

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

Drug Allergy Testing

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

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

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

10 Minutes Late

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

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

Then, It Happened

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

She said, “are you okay?” The statement was made with such sincerity that it threw me off. I was speechless. Then, I felt it coming. Tears rose in my eyes, and I gently said, “no.” She rolled over to me, patted me on the leg, and said that it would be okay and that I would be okay.

I Felt Seen

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

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

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

Side note: he is NOT allergic to Decadron 🙂

 

Medical Issues, Opsoclonus Myoclonus Syndrome

I Am Not Crying

I Am Not Crying

I Am Not Crying

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

This is not normal.

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

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

Beginning

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

Lost Count

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

Don’t Get Me Wrong

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

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

Yet

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

I know.

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

I Am Not Crying.

 

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Free Items for Children with Special Needs

Free Items for Children with Special NeedsFree Items for Children with Special Needs

Here is a list of Free Items for Children with Special Needs. Some of these are found on Meriah Nichols Website. There are more things listed there, as well.

Ones We Have Participated In

Songs of Love Foundation this one was AMAZING, and they are so wonderful! We just applied for another piece for another one of our children.

Weighted Blankets, Lap Pads, and Fidgets go above and beyond to accommodate you. We did give them a small donation because they made four blankets, six-lap pads, and several fidgets. Again, above and beyond.

Make a Wish, and if you go through MAW, you can also receive a scrapbook from Crops of Luv. Wow. MAW provided something I never thought I would be able to do. Not only did they take my HUGE family, but they added in H’sH’s biological brother and sister. Also, my sister and brother-in-law raise those kids. In total, 13 people were going without a blink of an eye! Crops of Luv, words cannot express my son’s joy at seeing your creativity with his Disney scrapbook.

Rare Bear Program. Such a cool thing. They ask what your child likes and try to create a bear with that fabric. It is very well made and very well-loved.

Free Cake from Icing Smiles. We have just applied to this, so I will keep you posted.

National Park Pass includes anyone in the vehicle with your child. The child HAS to be in the car. We have used this quite a bit, and it is a lifesaver.

Ones We have Not Yet Applied For

Bikes: here’s a comprehensive list from the Friendship Circle’s blog of places to turn to for an adaptive cycle. (note: scroll down – the formatting of their post is a little different, and it threw me off for a minute).

Bikes, Wheelchairs, Adaptive Equipment, and more: Variety’sVariety’s “Freedom Program” funds a lot. Check out the program here. Apply for help here.

iPads: Danny’s Wish awards iPads to kids with Autism. Applications are open from Sept-December 31st every year; iPads gave out in April.

Angel Flight: free air transportation for any legitimate, charitable, medically related need.

First-Hand Foundation: providing gas money, parking, transportation related to a child’s care, vehicle medications, equipment, and more.

 

Adoption, Medical Issues

Dys- Learning Disabilities

Dys- Learning DisabilitiesDys- Learning Disabilities

This is a breakdown of the Dys- learning disabilities. Growing up (up to adulthood, I guess), I only knew of Dyslexia. In that, Dyslexia meant that you saw/spelled a word backward.

Pretty amazing that that is all I thought it encompassed, huh.

Over time and with the help of some excellent therapists, I have learned so much more. By stepping out of the “box” I had created with LDs, I could expand my mind and have many “aha” moments of realization.

Dyslexia:

According to the National Institute for Learning Disabilities (NILD), “Dys” means difficulty with and “lexia” means words – thus “difficulty with words”. Originally the term “Dyslexia” referred to a specific learning deficit that hindered a person’s ability to read. More recently, however, it has been used as a general term referring to the broad category of language deficits that often includes the ability to hear and manipulate sounds in words as well as the ability to read and spell words accurately and fluently. When breakdowns occur in these foundational reading skills, dyslexic students often struggle to understand what they read as well as develop vocabulary at a slower rate.

Dyscalculia:

“Dys” means difficulty with and “calculia” means calculations and mathematics – thus “difficulty with calculations and mathematics”. This term refers to those who struggle with basic number sense and early number concepts as well as have difficulties with math calculations and math reasoning.

Dysgraphia:

“Dys” means difficulty with and “graphia” means writing – thus “difficulty with writing”.  The term dysgraphia refers to more than simply having poor handwriting. This term refers to those who struggle with the motor skills necessary to write thoughts on paper, spelling, and the thinking skills needed for vocabulary retrieval, clarity of thought, grammar, and memory.

Looking Back

In my years in school, this all makes sense. When I was young (even now), I was made fun of terribly in school. Teachers would put me in the hallway, alone. I had to go to a special ed room. There is this clear memory of standing in line, with other children, behind the teacher. She marched us to the special ed class in front of everyone. My “friends” pointed at me while laughing because I was going to the “stupid” room.

That phrase gives me anxiety to this day.

I had to be kept in from recess because I wouldn’t do what they wanted me to do. Memorization of math facts in second grade was a nightmare. I had to miss fun outings, sit alone, and worse. I had my name at the bottom of the list of kids who hadn’t learned these facts. Everyone saw. Everyone made fun of me.

Things I struggle with

Telling time on an analog clock is one of those things. If the watch (I no longer wear a look) has no numbers or Roman numerals, then forget it. I can do it, but it takes me a hot minute to think about it.

Directions, just don’t even. I can tell you landmarks because I became an expert at knowing my surroundings. Cardinal directions, ordinal numbers, place numbers, Roman numerals. Hard pass.

My right from my left; nope. Luckily, God created me with this issue, so he gave me a mole on my right hand. Ask me to look to the right and then watch me look/feel for my mole on each hand.

When I have a series of numbers, I flip the two middle numbers. Always. I have messed up balancing checkbooks, appointments, phone numbers, etc. I must write it, say it, write it again, and clarify now.

To get through math, through all grades, I cheated a lot. My mom is a math teacher. She is brilliant, but I didn’t get it. I didn’t understand, and I felt stupid when I would ask. Seriously, I should know this stuff. She is brilliant and available, yet I would not ask because she would know my secret.

Do you know how long it took me to tie my shoe? Luckily, velcro came on the scene and saved me.

That’s what I thought it was

My secret. As long as I had my mole, knew landmarks, cheated, got a digital watch…no one would know. Sadly, I knew. I have no clue how I managed to do all that I did with my degrees. Pre-Vet has A LOT of math and calculations. I would have little tricks that would help me along the way.

Then Came a Little One

When my little one entered my life, this child was 2.5 yrs old and non-verbal. We knew this child had some issues, so I immediately got Little One into First Steps. Little One got tubes twice and finally learned to talk but with a speech impediment.

No biggie. After Little One graduated from First Steps, I got this child into Home Health. Little One worked hard on speech. Over time, I realized that due to FASD, the memory aspect was fresh every morning. No matter how hard this child worked or worked with Little One, this child would forget everything I taught.

Public School

While we were in the process of adopting another child, we had to put the kids in public school. Little One was in Kindergarten. Guess what? Little One was in the special ed classroom, but not an all-day thing. Just long enough to work on the alphabet and phonics.

Little One finally got it, but the writing was a no-go, and reading was not happening. The sadness of seeing this child struggle was palpable. It brought up many repressed memories I had to trudge through to help Little One.

MSU

I pulled this child out of school for many reasons, none of which I will go into because it is his story to tell one day. In doing that, I knew that I needed to get Little One back into speech. We had his hearing checked, and in doing that, Little One was checked for Sensory Processing Disorder. Luckily, all that was good.

Across the hall was the speech team. We met with Alison for a “get to know you” and see if this child qualifies for their program. Well, Little One did. She didn’t ask me how this child was at reading or spelling. There were questions like “does Little One know his right from his left” or “how long did it take Little One to tie his shoes?” I answered them all as honestly as I could.

Verdict

When it was all said and done, she said Little One qualified for their program’s speech aspect. Then she patted me on the back and said: “we do not diagnose, usually, dyslexia until a child is older.” I was like, alright, that ship didn’t even enter my harbor. She got really quiet and patted me on the back. Quietly, she said, “Your son has severe dyslexia. I knew within 5 minutes of meeting this child.”

I started laughing. Allison was startled at that response, so she kept on patting. While asking if I was okay, I said: “We just discovered my 6th child has single-sided deafness, so this diagnosis for D is just like a teardrop in the ocean.”

After that, I just stated that I thought it was me and could not teach this child. She said that is not the case, that this child learns differently. As we continued talking about the red flags of dyslexia (and dysgraphia), she asked me a few questions about myself.

Revelations

In a moment of clarity, she looked at me and smiled. She said you realize you are smart and have been able to overcome your learning disability. I must have had a blank moment because I did not comprehend what she even said. She asked me when I was diagnosed with Dyscalculia. I told her that I had never heard of that. That I just thought I was stupid in that area.

Cue emotions.

She explained what that was and that it was crystal clear that that was what I had. Back when I was younger, there was not a name for it. Now there is. I almost felt vindicated. It is what it is. I have compensated for my shortcomings and confusion. So has D.

New Lease

Now, we are armed with knowledge. Little One cannot spell worth a crap. Therefore, I got this child a pocket speller. Little One has all these ideas and thoughts but can’t get them on paper. I bought Dragon Speak so this child could speak out what needed to. Little One has written some awesome things through this program.

We bought an amplifier so Little One could hear what I was saying, and his speech was corrected. Also, we did many years of speech/reading/language therapy. I had this child write books from the Bible. His penmanship is meticulous because this child has worked incredibly hard. Cursive was something I thought this child would not be able to do, but guess what, though? Writing the book of Genesis in cursive has changed that too! We got a dry-erase cursive board, and Little One practiced until this child mastered it.

Little One loves to read, so we get any series that interests this child. Also, Librivox and Audible have been game-changers. Both of these programs have real-lived people (as opposed to the computer voices) reading stories. Little One gets to hear it all, but also gets to listen to their inflections. This has helped his speech tremendously.

Fear is a Liar

I lived in fear. Now, I am armed with Truth and knowledge. Being armed has given me clarity and understanding. Learn all you can about something you are afraid of. You are strong, brave, kind, and good. We no longer live in fear. We are empowered!

 

Depression, Medical Issues

Reflecting on Nesting Bird Wisdom

Reflecting on Nesting Bird Wisdom

Reflecting on Nesting Bird Wisdom

I was reflecting on Nesting Bird Wisdom from my sister a year ago. After a tough weekend, emotionally, I had my early Monday morning chat with my sister. We chit-chatted about nothing and everything. Then we moved into what my triggers were from the past weekend.

A statement swirls around in my head from another friend I told Tera. My friend said, “Brandi, you have to have a release. You have to find someone you can trust. Get this stuff off your chest. Cry if you need to cry.” My statement back to her was, “I had that person. She died. Now I don’t share or talk. I stuff it all down.”

Tera agreed with my friend. We talked about the stages of grief. Also, I have had no time to grieve anything over the past several years. I’ve gone from one hit to another. There has been little time to breathe. Sadly, no time to grieve. Sadly, there was no time to release the pain and emotion from everything that had happened.

Then, she took it one step further.

She said: “Brandi, it’s okay to have birds fly around your head (referring, of course, to grief, depression, anxiety, etc), but you can’t let them make a nest in your hair.”

I agreed. Then, I wiped my tears and got off the phone. Next, I went to the bathroom.

What I saw was a thing of fear and horror. My hair was straight up (circa 80-the 90s) in that great curly, let it be free, windblown hair.

I texted my sister and asked her to define “Nest in Hair.”

So, my birds have nested, and now it is time for them to fly south.

Bye, Bye Birdie. The bird has flown away!

 

Medical Issues, Opsoclonus Myoclonus Syndrome, Vacation Days

Make A Wish Foundation

Make A Wish Foundation

Make A Wish Foundation

Yesterday, my cell phone rang, and I didn’t answer it. I do not answer numbers I do not recognize, as I know it is probably a telemarketer, and I do not want to deal with that. If someone needs me that is not a telemarketer, I know they will leave me a message. Little did I know it was the coordinator for the Make A Wish Foundation.

Well, this time, this person left a message.

I checked my message and realized that I genuinely needed to speak to this person. Hesitantly, I called back because, on one side, I didn’t want to hear what she had to say. On the other hand, I did want to hear what she had to say. I’m sure I’m not the only person ever to think/feel that.

MAW Rep

This lady was from the MAKE A WISH foundation. I had, on a whim, filled out the info for this foundation to see if H qualified. Sadly, I thought that kids, who had cancer or were terminally ill, got to make a wish for a final trip for themselves and their families before Jesus called them home.

Times Have Changed

Times have changed. The Make A Wish foundation still does that for terminally ill kiddoes, but now (they may have always done this, but it is new to me), they extend this wish to kids with life-altering diseases. I had to check my pride and sanity and not admit that he has a life-altering illness to complete this paperwork. Sadly, I cried through the whole thing. Maybe he isn’t as bad as I think he is. Perhaps this is just an “it will pass” type thing.

Medically Fragile

Then I heard the words, “your son is medically fragile.” I listened to the words, “the longer he stays symptomatic, the more permanent brain damage is done.” Next was “we want to help him maintain and not lose any more abilities.” Then, my 3 yr old son looks at me and asks for his walker because it hurts to walk or he can’t do something. That gut punches me.

Mounds of Paperwork

I filled that paperwork out about a month ago. I didn’t forget about it, but I didn’t pursue it either. Then, I was facing it, and the phone rang. I did not answer it. There was a moment when I listened to my voicemail. Then, I felt the warmth of tears filling my eyes. I called. H was going to be granted a wish. I am humbled. I am sad. I’m excited for him to be allowed to be a kid without being surrounded by medical staff. I have all these emotions that I have a hard time processing.

Processing Emotions

I thanked them profusely. There was a point when I tried to explain to H that we would see Mickey Mouse. Also, I told my other kids, my husband, and my sister. I should have had a more exciting inflection in my voice. My kids should have been more excited. Yet, we all knew the magnitude of his condition and that his case was reviewed, and just by reading it on paper, he qualified.

We will get excited, eventually. I will plan things. We are SO grateful for the opportunity, and it will be nice to get away for a little bit without stressing about 5000 different things. I meet up with a couple of adoptive families I have come to love through Facebook. There are so many good things that will come out of this.

God is Still Good

God is good. I foresaw this ordeal before He created the Earth. He is showing us another bit of my rainbow, and I’m so thankful. But I’d rather see my son healthy than going on a vacation. Until then, we are heading to Disney.

Thank You, Make a Wish and Give Kids The World

Thank you, Make A Wish Foundation. Please know that you can donate your time, flight points, or volunteer your time for this excellent foundation. One day, when I get done raising kids, I foresee myself doing all I can to see other families in my situation have some joy during their hard times.