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!

 

 

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.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Spotting the Zebra

Spotting the ZebraSpotting the Zebra

Here we are, Spotting the Zebra. Dr. Ehert has been so good to us. So thorough, and she even fielded questions from my sister, H’s grandma. She wanted us to be discharged to Frazier Rehab, across the street, for an indefinite time.

I want to go home, even for just a night.

I realized I needed to see my kids, my kids needed to see me and H. I needed my shower and my bed, even if it was just for a few hours. We had declined the offer to go to Frazier, and I set up speech (he had lost some of his speech), Occupational therapy, and physical therapy. If the doctors were not satisfied with his progress, we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had, B) there were no more tests to run C) I begged. So, without a diagnosis., we hustled and got out of that hospital. We drove for about 3 hrs and then my phone rang. It was Dr. Ehert. She said that we left without seeing her. I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then there was a pause.

She asked me how far out of Louisville we were. I told her I was about 3 hrs from there and a 1/2 hour from home. She explained so gingerly that one of his tests (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids. I asked her how urgent it was and if I could go home for a bit, and she was hesitant.

She said the sooner they start it, the sooner he could get better. The treatment was to last for five days. She never mentioned a diagnosis, but her voice had a definite concern. I told her that I was going home. There were things I needed to do like getting a shower, seeing my kids, and sleeping in my bed. Ultimately, I would be happy to leave in the morning as long as his life was not in danger. That is what I was going to do. I had to mentally prepare myself to be up there for that long again.

We got home, and it was sweet.

He was so excited to see everyone, and everyone was excited to see him. I jumped in the shower and blew off all that nasty hospital funk. It was glorious. I slept so well that night. About 9 am the following day; we headed out again. I felt more prepared. I knew what to pack and was mentally ready. We got up there, and we could bypass the ER and go to quick admitting. They were expecting us. We met up with the beloved IV team again, and we got an IV started for him and Superman 🙂 They told me they would give him high doses of steroids for the next five days.

Steroids are supposed to make you eat and make you a bit irritable. I could not get this child to eat anything. He wouldn’t even eat a cookie. He did sleep some, but it was restless. After three doses of steroids, he could stand on his own and maybe take a step or two. His tremors lessened. His voice was not as shaky, but his eyes were everywhere!

Phone Call from the Beach

Early the following day, at 1 is, I finally shut my eyes for a moment, and it comes to the nurse. She said that I had a phone call. I think, “who on earth is calling me, on a nurse’s cellphone, at 1 am.” It was Dr. Puri. He is a pediatric neurologist who was calling me from Myrtle Beach. I asked him why he was calling me while he was on vacation, and Dr. Puri said he wanted to ease my nerves.

He is a phenomenal doctor. I have been told that he is well-loved and well-educated and has seen some bizarre things. There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms. He said because no lesions were found anywhere. It is doubtful that he has this, he said he believed it to be another autoimmune disease, and he assured me that they, as a team, would figure it out.

New Neuro

In comes Dr. Sweeney. I came close to dismissing him because he looked at my son’s age. I thought that he was a youth volunteer. He said that the team had assembled and discussed our case. They wanted to run more tests but felt pretty confident in the diagnosis. He kicked every other doctor off the case because this was strictly a neuro case, and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need to.

We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for now. We did a follow-up urine test, and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood. At that point, I put my foot down and told them that if ANY IVs or blood draws were necessary, ONLY the IV team would do this for me.

All Tests Were Normal

Once all these tests came back (normal, I might add), Dr. Sweeney stopped the steroids (he had had eight doses of them), and he started him on IVIg (immunotherapy) for about 6 1/2 hrs. He said when that was finished, we could go home. There was nothing else for them to do or any more tests, at the moment, that they could do. I could do the same thing here as they could there.

They did want me to take him to Frazier for a couple of weeks. I explained that we already had therapy and equipment in place, and they were satisfied with that for now. We would readdress it when we came back for our follow-up appointment. All tests were clear except for high pressure with the spinal tap, and that test was positive for Oligoclonal Banding.

Spotting the Zebra

Dr. Sweeney captured the rogue zebra in a not kind of way. He thought that he had misdiagnosed him with OMS. Sadly, he felt he had Spinocerebellar Ataxia. SCA is confirmed through genetic testing. Whereas OMS is a clinical diagnosis. It turns out that he does not have SCA, and he does not have ATLD1. We are back to the OMS diagnosis.  

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

Is it a Rogue Zebra or Something Else

We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a lot of attention to us” moment and “oh crap.” Nurses were moving quickly. We were seeing attendings and not interns or residents. My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay, and they were overly attentive.

 

All Eyes Were On H

 

Without much of a blink, I had the ER attending, the neuro attending, the peds attending, and there was one other one, but I could not think of who that person was. They got him in a gown. I blinked, and the next thing I knew, they were putting in an IV, drawing vials of blood, and testing his urine. It all happened so fast.

 

Explaining the Last 2 ER Visits

 

When I talked to the attendings, I explained that we had just been to Vandy and what they had said. I told them I might be overly cautious, but it seemed H was getting worse. All I wanted was two doctors, two different hospitals, and two different states telling me the same thing. Once that was done, I would be good to go. The last thing I wanted to do was to stay.

 

Dancing Eyes

 

I blinked again, and when I looked up, H’s eyes were dancing all over his head. It reminded me of one of those reptiles with a third eyelid. Quickly, I got up and hung my head out the door for the attending. I stood, where my face was not visible to H. Before that moment, I was cool as a cucumber the whole time. Sadly, when that third eyelid thing had to be fixed, that scared me. That’s when things started moving a bit faster.

 

Not a Normal Mama

 

I am not the type of mama who always is at the hospital or doctor’s office for every snot rocket, complaint, bent finger or toe, or even blood gushing. I do not subscribe to that in my life. If mama is quiet and the kid is quiet, things can get done and assessed. I told these people that. I apologized for even taking their time because I was sure that everyone would agree.

 

They disagreed.

 

Not even in the slightest.

 

A 6-Day Stay

 

My previously healthy 3-year-old was poked, prodded, sedated, and infused. I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by doctors, residents, interns, students, and nurses. There was not one person who would give me a straight answer. I finally cornered one of the doctors, and I told her I was a nice person. I tolerate it a lot. I am also a forthright person, and I do not beat around the bush. The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.

 

I understand that they do not have all the test results. I know that they do not know, for sure, what this is. They know what tests they are running, why the people are running them, and what they are ruling out. That is the stuff I want to know. I will not lose my cool. There will not be a time when I will panic, faint, cry, or scream. My job is to be a student of whatever is going on.

 

Student Doctor

 

One sweet little student doctor, who looked like my son’s age, stepped out of his box. He got down on H’s level. This sweet man played with him, connected with him, and was genuinely concerned about him and me. There were days when he would stop by and ask random questions because he was going home and researching. Out of his graciousness, he made me a list of all the tests. Which tests were pending and which had results (and he gave me the results).

 

Also, he took the extra time to write down what disease each test was for, what was ruled out, and what they were looking for within the tests. That list became gold to me. Every time a nurse came in, she would check to see if a specific result had come in. This is what I needed. The list calmed my soul, and I felt empowered and in the loop.

 

The Hospitalist

 

There was another doctor; she was a pediatrician and was the hospitalist for the week. She slammed me between the eyes. This doctor said that he would not get better and that it was an autoimmune disease. They could not pin it down, but the fact that every single day, he was getting worse and much weaker. She said that I needed to see the gravity of the situation. I need to make adjustments at home. I needed to set up therapy. They wanted him in Frazier Rehab for an indefinite amount of time. I was going to be the one who had to feed him. We had to get him fitted for a wheelchair. What was happening was our new life, and I needed to prepare myself.

 

Time for a Meltdown

 

I believe that conversation was the first time I truly had a meltdown. Amazingly, I did not do so in front of all the doctors. I waited until they left. Before my moment, I got my son watching a movie. Then, I stepped into the bathroom and called my sister, H’s grandma. That is when I lost my composure. I could hear H in the other room sweetly saying, “mama, don’t cry. Come out of the bathroom and don’t cry.” I came out. Then I washed my face. Next, we watched Cars for the thousandth time.

 

Choosing Joy

 

I purposed not to let this dictate his life or mine. Adjustments? Fine. I can do that. Therapy? Fine. I can do that. When the doctors came to do rounds again, there were about 12. All of them were timid around me. They would not look me in the eye. I guess they thought I was going to break down. There was a moment, and now my moment was over. I told them that even in times like this, I choose joy. According to God, this would not defeat us. OMS was just a part of our story.

 

I explained that these doctors would see something similar in their future. When they do, they will remember H. Hopefully, they will know what tests to run and what to look for within his body. Also, to realize that God will be glorified. The tone in the room changed. They began to tell me they were praying for us and encouraging me, saying that God can still do miracles.

 

Next, we meet our Neurologist team. 

 

 

Faith Journey, Opsoclonus Myoclonus Syndrome

A Moment I Won’t Soon Forget

A Moment I Won't Soon Forget

A Moment I Won’t Soon Forget

A Moment I Won’t Soon Forget was this past Sunday, Big Daddy and I decided that we would go to church with my mama. See her Sunday School Class (the Empty Nesters), as she collected money from the past 2 Christmases and donated it to our fund for Louisville. We put ALL donated money in a plastic money bag and marked it Lville. We use this for gas, to and from, snacks, food, and hotel stays. I made last year’s donation stretch quite a bit. Honestly, we made it almost until the end of the year. This year, they surprised us and did it again. We are so humbled and grateful.

Saying Thank You

My days are short and busy, so getting to the store to buy a thank you card seemed an impossible task. I didn’t know if I could find one that could do justice in expressing ourselves. These people had never met us. They have never met my son, they know what my parents tell them, and it is hard for our parents to understand the ins and outs of this life-altering thing that H has been diagnosed with. I thought it would be best to personally go, introduce them to H and the rest of my family, answer some questions, and thank them.

Donnie

We got there, and their SS teacher, Donnie, stepped out into the hall. When my crew walked in (everyone but my oldest daughter), the look of surprise on my daddy’s face and my Martha’s was a good moment. After being introduced to everyone and them, so graciously feeding my kids. LOL. I looked over, and there stood my daddy with the fellas. He was drinking his coffee. See, the thing is that, growing up, my dad came for holidays and if one of us girls sang. That was it. I never knew him to go to SS, he would slip in for those brief moments in a big church, and then he would leave as quickly as he could.

Realization

In my adult life, I’m pretty sure I’ve never seen him in a church (except for weddings). My mom faithfully has always gone while dragging her kids behind her 🙂 I was overwhelmed by the sight of him standing there. He wasn’t there because he was forced. Amazingly, he was there because he wanted to be there. He was surrounded by men and women of God who love him. He CHOSE to go. He drives by himself.

It is cold outside, like bitterly cold, and since his medical issues (stroke 2 yrs ago and quadruple bypass earlier this year), he can hardly handle the cold. Yet, there he stood. With that grin on his face, he took it all in. He has been in church since God shook him to the core about 11 years ago. During that time, he fell in love with my mama again. Daddy fell in love with God again. His SS teacher is a retired cop. He knows the things my daddy has gone through. He can sympathize and empathize. They are like a little match made in heaven.

Jesus

I am in awe of the goodness of Jesus. I’m blessed to have parents who love each other. I saw my daddy….in a Sunday school class….because he wanted to be there. My heart. My parents had stood in front of me, protecting me from the world besides me as I made tough decisions, and behind me to hold me up when I started to fall. They have done anything that I’ve asked of them and then some. I can never repay them.

My rainbow is growing 🙂

 

Life or Something Like It

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical

Wonder From the Eyes of the Typical kid has inched into my brain. I use the words “typical” and “atypical” loosely. In my world, there are no “typical” kids or people. We are all a bit screwy from time to time. That is what makes the world an exciting place to live. Not being all alike, it gives areas flavor and personality.

My Reason

I used that terminology because of the movie “Wonder” that I watched last night. You can find a Christian review on this film at Plugged in Online to learn more about the different content of this movie.

They used the word “typical” in the film while referencing their oldest daughter, Via. Their youngest son, Auggie, was born with a deformity. He, too, was a biological child. For the most part, I enjoyed this movie, though it hurt my heart.

My Thoughts

This movie did not depict the strain that raising a medically fragile child can have on a marriage. The ‘parents’ seemed to get along great, and there didn’t seem to be underlying anger/hurt/resentment towards one another.

That, right there, is why this is a movie and not real life.

Raising children with special needs, whether mental, physical, life-altering, terminal, etc., have a great deal of strain on any couple. The pressure does not discriminate on whether the parents are married, co-parenting, etc. It isn’t easy. I know why people do not stay married. The all-consuming nature of special needs children is just that, all-consuming.

The Typical Child

What I feel they were pretty spot-on with is the feeling of the older daughter. The child in the shadows. The child you just let skate on and upward with because they know not to make waves. These children have learned to problem solve, maintain, and stay calm on the outside when their insides are screaming.

Guilt begins to permeate.

This movie made me think about my ‘typical’ kids and what they have seen/heard throughout the years. The pain is unbearable at the thought that I have swooshed them under the rug because I was busy putting out fires of my ‘atypical’ kids.

My kids’ needs range from minor to significant things. We have dealt with everything from Dyslexia to Mild Mental Deficit. Splash in Reactive Attachment Disorder, Fetal Alcohol Syndrome, Deafness, and Opsoclonus Myoclonus Syndrome. You will have my kids in a nutshell.

Be Careful Little Eyes What You See

My kids have seen SO much over the years. I’m so blessed that they are so aware of God and follow (mostly) in His forgiving ways. To think back, it makes me shudder to remember the looks on their faces when the violence would ensue.

I can still hear the still, small voices saying “mama stop” when I had had enough. The fear that would splash across their faces when one child would rage for hours on end. This child destroyed anything and anybody in the path of the tornado rage that was bearing down on us.

My kids didn’t have anyone over. It was not safe at times. They saw me cry more times than I could count. I have learned, over the years, to be mindful of catching my emotions before they run amuck.

Did I lose track of them in those years? Was there too long of a delay before I had had my belly full? Did my other children go unnoticed because of the acts/behaviors of one or two kids?

Be Careful Little Ears What You Hear

The things my kids have heard are horrible. The threats, the evil spewed out, the anger that flows like lava. They have listened to it all. One day, amid a storm (figurative, not literal), I noticed my son. God love him. He was corraling the other children to the back of the house.

I realized that day that he was moving them to safety. He wanted to protect their little eyes and ears from all that was going down. It was at that moment that I took control back.

No more was I going to let Satan rule my house. I was done, oh so done. Everything that I was “taught” to do by the so-called foster care rules, my church, my family, friends, other caregivers, therapists, and doctors…nothing worked.

It was time that I saw the other little faces, and I stopped the insanity that had ruled my home, mind, and heart for too long. I began to stop seeking approval from those that did not have my family’s best interest in mind. There were no more doctors, medications, or therapists. I was done.

James 4:7

Submit to God. Resist the devil. He will flee.”  James 4:7 This was the verse I would chant while the world raged around me. We made tough decisions in regards to one of our children. A decision that I tried to back out of, but my family and my physician said it was for the best. Tough decisions are sometimes the hardest ones to make but also necessary for survival.

Reflecting on our past is not all a bad thing. I must be mindful to capture the thoughts that are not of God and put them in the place they should be in my mind. From the beginning of time, he knew the children that I would have, and He has made perfect provisions for each of them. I’m so thankful that He has guarded the hearts of our typical and atypical kids from remembering everything.

Hang tough, fellow mamas in the trenches. God has our backs!

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

My Ache of Reality

Before He Got Sick

My Ache of Reality

 

My Ache of Reality

In My Ache of Reality, my heart physically hurts. There are moments when I see myself going about my day. Then, all of a sudden, tears begin to flow freely. I am not in control of this onset of emotions, sadly. If I were in control, I’d stifle those suckers instantly. It is uncontrollable and unexpected. I do not enjoy these moments.

 

H is better, for the most part. He is still walking most days. There are some foods that H can feed himself. There are days when he can hold a pencil (with assistance). On a good day, H can sit on the potty (almost by himself). All of these things, he can do part ways. Also, there are things he can do, all the way, occasionally. Every day is a day and every day is different. I never know what to expect day in and day out.

Remembering

What spurred these emotions on was sorting through my external hard drive one day. I organized the 10s of thousands of pictures I have had since 1994. Looking through my photos/videos of 2015 and 2016, I began to feel the heaviness. See, in November 2015, H moved in with our family.

 

He was “normal” that morning, on June 6, 2017. Then, after lunch, he took a nap, and our lives changed forever. I remember calling my sister (his Mamaw) and saying, “Kim, there is something wrong with the baby. He can’t walk. We are headed to the ER.” She met us there. From that moment on, it was a whirlwind for the next two weeks. I had almost two years of him being a healthy, typical little boy.

 

I Don’t Remember

 

Those healthy days, I don’t remember. How sad is that? He does not remember it either; that is even sadder to me. This realization cuts me to the core because I do not know what our future holds; on the flip side, I know Who has his future. It can be so scary to even think about. Will he ever walk without assistance? Will he ever feed himself? Dress? Do schoolwork? Go to college? Have a family? Hold a job? I know he is only 4.5 years old, but time marches on now, doesn’t it.

 

I find myself questioning God and the why’s of it all. H had already endured *so* much in his little life before coming to us. He saw so much hurt, pain, violence, neglect, and now this. Why can’t he be? Why can’t he live everyday life? What more does this baby have to go through?

 

Then, I hear this one question rolling through my mind, like on a carousel.

“If I never heal him, this side of heaven…will you still love me?”

 

That question is so easy, yet so hard. It is easy because, of course, I will still love Him. He is my Savior and my foundation. The knowledge that He is my Alpha and Omega is overwhelming. I want my son to be healed, this side of heaven, and to be okay. I desire to see him have a full, healthy future. The reality is, is I don’t know what his future holds, and it makes me angry.

 

Anger is secondary to fear and sadness. I fear that I will lose my son. There is a fear of people making fun of him, him getting hurt, or having to go back to the hospital. I am sad because there is no treatment. There is no medication, no protocol, no help, or knowledge available. Fear and sadness could overwhelm me if I allowed them to. In having a propensity to depression, I have to be mindful of my mental state in all of this.

 

Anger

 

I’ve been super angry with Jesus through all of this. My love for Him has not changed, but I am mad (remember, fear/sadness). Last night, we had a meeting…Jesus and me. This meeting happened after Big Daddy prayed over me, and I was fixing to go to bed. There was a lot of yelling, mainly (entirely) because I had to get this all out.

 

When I came out of the bathroom, I saw my still son, sleeping peacefully. I sat by his bed and held his little hand. There were no words spoken and no thoughts in my head. I sat there in silence, staring at him and holding his hand.

The Ache of Reality

There was so much said, so many tears that fell, and finally, peace. I can officially say, not just with head knowledge but heart knowledge, that I will still love my Jesus. Being alive has brought together our family in a way I never dreamed it would come together. Our tribe has come together and rallied.

 

There is a relationship between my brother and me. That never existed before. The love my brother has shown my baby is mind-blowing. My sister and I function as a unit instead of separately. That began before H even moved in with us but has grown stronger by the day. My other sister has faithfully helped by providing pull-ups to being a massive prayer warrior. My parents…I can’t even. The support and love that has been shown affect every fiber of my being.

 

H has shown people perseverance in the face of pain and uncertainty. It melts your heart when he smiles after IVs, chemo, IVIG, ACTH shots, traveling for hours/days, and extended hospital stays. There may be a moment when he cries, but then he tells whomever, “thank you.” Amazingly, he has shown grace through his misdiagnosis and tenacity in his ability to compensate for his deficits.

Hope

It has been prophesied over me, my family, and H’s healing. I have learned that, in Christ, H is completely healed. The power of my words and the words that surround H is just that, mighty. I can hear the medical truth yet still know that he is healed. The Holy Spirit, in me, allows me to pray and thank God for the healing He has already done for H. HOPE is the keyword in our journey. I have HOPE in the circumstances that we are going through. This HOPE can only be found in the arms of my Jesus.

 

I’m thankful for the people that speak that healing into existence. That healing is Truth from the Almighty. They remind me of what the Lord has shown them, and they tell me. These are the words that I need to hear because they come when I feel like hope is dwindling.

Snuggling

As we snuggled in bed last night, I asked him if he would be better. I didn’t allude to his illness or anything else. I thought he would respond according to his behavior because it has been less than stellar. He looked up at me and said, “Yes.” He said, “I’m going to stop shaking.”

 

H has hope. Therefore, I have hope. We know on Whom our HOPE is built.

My Hope is Built on Nothing Less

My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When darkness veils His lovely face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

His oath, His covenant, and blood
Support me in the whelming flood;
When every earthly prop gives way,
He then is all my Hope and Stay.
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

When He shall come with trumpet sound,
Oh, may I then in Him be found,
Clothed in His righteousness alone,
Faultless to stand before the throne!
On Christ, the solid Rock, I stand;
All other ground is sinking sand.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Time to Get Over Ourselves

Time to Get Over Ourselves

2 Day Hospital Stay

In this post, Time to Get Over Ourselves, H, A, and I have been at Vanderbilt Children’s Hospital for two days for his infusion. This is the hospital that misdiagnosed him the second time. Now, after 2 yrs, we have found a specialist who has seen his condition.

Now, she has not seen a lot of cases, but at least some. She is willing to learn as we go, and she talks WITH me, not AT me. The last time I checked, I was H’s expert. She respects that, and I appreciate that.

Infusion Time

This is our first infusion at this hospital. It is pretty different from the last three hospitals we have had infusions in. All three other places (Norton’s, UK Children’s, and UPMC) have done one full day of IVIG. We have always had a private room and meal services. That was nice.

Here, however, is a WAY different ball of wax. We are in the cancer infusion section. It is one large room with about 12 of those hospital reclining chairs. Each person comes in and grabs a seat. There are private rooms, but that is for different cases.

As I Look Around

As I look around, I see these children that have ranged from bitty babies to 18 yrs old—everyone here for chemo. I have seen entirely bald children, some with sporadic hair pieces, some with just thinning hair or bald spots, and some that have not lost their hair.

Parents, they are tired. They are overwhelmed. These parents have bags full of everything their child/ren could need/want during their infusion. I have seen a range of emotions, from irritation to anger to frustration to intense sadness. My heart aches as I wonder which of those categories I have fallen into.

Sweet Mama Precious Baby

This one sweet mama, her daughter, looked to be about 3. When we got here, the little girl was wallering in a chair that was too big for her. Then, mama got in the chair, and this baby melted into the warmth of her arms.

She slept until she didn’t. Once the meds hit, this little girl cried, screamed, thrashed, and more. The mama tried to get the daddy to hold her, and this little peach did not have it. She was angry at her father and did not want him to touch her. This blessed little person wanted her mama, but she didn’t.

Calm in the Storm

Finally, a nurse took them to a private room, where she continued to scream for 45 minutes. My heart ached for them all. Eventually, she fell asleep, and the mom quietly retreated out of the room for some untainted air.

I approached her with kind eyes and a warm tone when she came back in. She apologized if her daughter disrupted us. That is the last thing I wanted. I gave her tips on what we do when H rages. The things that worked for us during his hospital stays. We laughed together quietly. She was able to express herself freely because I got it. I understood. We are all in this together. Honestly, this is not where anyone in this room wants to be.

Macarena

At one point, the nurses started clapping and singing the Macarena song. It was something fun they made up to sing to a patient who had completed their chemo treatments. All patients sang, clapped, and smiled at this victory. A and I fought hard not to have a complete come apart. What a beautiful moment.

Emotions of the People

I’ve seen smiles, perseverance, tears, victories, triumphs, and frustration. The nurses work hard to do their job, and they do it well. My heart aches that we are even here. Yet I know that cancer is not what is attacking H’s little body, and for that, I am thankful.

Completely overwhelmed.

Stop complaining about things that are SO minor. Honestly, the mundane crap and trials of life are just that; mundane crap. It will not matter in a week or a month. Seriously, we all need to get over ourselves. These things we get irritated over are nothing compared to what I am looking at now.

Wanna see strength?

Sit in the cancer ward of the hospital. I just saw a 6’2″ man walking with his 18 mth old balding son. This tiny fry marched confidently to the toy cabinet. Daddy opened it and crouched down as he picked something to play with while he had his treatment. I could not hold back my tears.

Time to Get Over Ourselves

Love more. Forgive more. Hold your family close; even if you don’t like them, you must LOVE them. Stop being petty and snippy. It may take a while to absorb all I’ve seen fully. There is a lot that I need to say to people who have hurt me or whom I have hurt.

Stop talking about living a simpler life, loving more, not holding grudges, etc. Do it. People can say or “post” what they do all day and twice on Sunday. That does not mean they live the life they say they live.

Stop talking. Start doing.

This.

This place is where the rubber meets the road for me. Just as I think all people need to visit a developing country to make them appreciate life more and what they have. This place is somewhere everyone needs to see to humble themselves and be grateful.

Ideas

Donate your time, money, and gently used or new toys to a children’s cancer ward. They need it, and it brings them joy for the time they are here. Thank a nurse, dr, EMT, firefighter, police officer, or military person/family.

My heart is changed.