Faith Journey

Perspective on the Last Few Months

Perspective on the Last Few Months

Perspective on the Last Few Months

Perspective. That is a loaded word for me. Honestly, it will be my next tattoo once I pick a design. According to Webster’s Dictionary, Perspective means “a particular attitude toward or way of regarding something; a point of view.” So much has happened this year that it is hard to think about sometimes. Granted, some have been good. I have a new grandson to add to my brood of kids and my sweet C girl. Yet there has been a lot of loss, pain, and uncertainty. He never promised that the cross would not be heavy and that the hill would not be hard to climb! The cross has been heavy, and this hill…good grief is all I have to say! 

The year started with the loss of a dear friend. Hot on the heels of my parents’ devastation rocked us all to our core. My daughter gave birth early, and we almost lost her and her son. Co-Vid. The loss of my other mom on Mother’s Day. Some family stuff that sucked pondwater (as my M.O.M. would say). Uncertainty. OMS flare. Medical things for me. You know…just some gross stuff that was not fun.  

I do not want to focus on the negative, so let us get into a better mindset. My grandson is here, chubby and the happiest thing ever. My granddaughter is a small but mighty force to be reckoned with. We have added a daughter-in-law to the family. My oldest is amazing. She is a phenomenal mommy and truly gifted in her profession. She loves big and is so talented. My second child is soaking up mommy hood and it is just beyond my expectation. She is so gifted and focused and is just beyond incredible. My third child is okay, I guess…I hope and pray for reunification. My oldest son is finishing college, writing brilliantly, and enjoying a new marriage. He is leading well and loving well. My next son is working hard at school. His teacher called me just to tell me how talented and natural he was at what his trade was at school. He is a light in a very dark place. My other son is getting all As and Bs in school, playing basketball all the time (on JV and Varsity), and his smile is infectious. My little one is everything a typical 8 yr old boy is…busy, loud, inventive, talkative, and doing the best he can in school. I am so proud of my kids. The Lord has truly blessed me, and I know that we will all be together again one day. Forgiveness, mercy, strength, and grace will abound on that day. I believe it now and forever.  

My husband…I cannot even. He does not complete me. He enhances me, and I enhance him. We are one in our minds, goals, and beliefs. He believes in me, encourages me, and loves me so completely. He is everything to me and then some. With his encouragement, I have embarked back into the world of school. Lord help me, LOL. I turned 50 this year and went back to school. What was I thinking? In a quick moment, I applied for a therapist position and got hired. Upon trying to finish my complete licensure application, I realized that I was about 12 hours shy of meeting my state’s requirements. I have my master’s, and that was not enough. So, here I am… back…writing papers. I have some great cheerleaders in my corner, even when I doubt myself. I am almost done (again) and will soon apply for my licensure again and begin work in January (I hope). 

I have read a lot, watched Friends, cleaned more than the average human, freezer-cooked a lot, and learned a lot about myself this year. I have learned that the glass is only 1/2 empty when it is a glass of coke…otherwise, it is half full. People are not all bad and out to just be horrible humans. There are nice people out there, but I sure have learned how to distinguish between sheep and wolves in sheep’s clothing. I have eliminated a lot of negativities in my life. Some people mean harm to my family and me…to those people…I have read the last page of the book. God wins. He has my back, and He will continue to protect us. You cannot harm us anymore. 

One thing that has changed is that music is now permeating my home again. For years, we could not listen to anything due to some issues within our family. My grandchildren love music! I am pleased to say that Bocelli, Beethoven, Pavarotti, 50s & 60s rock, Elvis, praise music, hymns…we are listening to it all! I had forgotten how fun it is and how it evokes such emotion. Bart and I were listening to songs we listened to in our early years…we were giggly, dancing, and just enjoying it all. We ran our kids out of the room, LOL. My parents came over, and Unchained Melodies was playing. Immediately, they started dancing in my kitchen. My parents are 76 & 78 years old and have been married for 60 years. My children have had a front-row seat to their marriage, and they had the pleasure of just sitting back and watching this unfold before their eyes. It was beautiful. I love dancing with my grandchildren. Love, love, love it! 

Over the past few months, I have been reading Bible with a friend. We message daily, holding each other accountable. It all started with a bad night on my part. She asked how often I had been in the Word. I told her not at all. She challenged me, and here we are, loving each other, praying for each other, and reading the Word together. We have castrated animals but never have we done this. It has been so good to be back in the Word and to see it through her eyes. 

We are laughing again, playing cards, swimming as a family, and loving each other well. There will always be valleys. Always. That is just what it is. I do not want to be in the valley, but it is a part of life. God is in the valley and on the top of the hill. It is all about perspective. Valleys are opportunities for Him to shine even brighter. That is what I need to teach my pessimistic self. He can be in both places; even when I do not feel Him, He is there. I pray that 2023 brings many joys, more peace, reunification, and healing for my family. Yet there will be valleys, and they will be low and painful. I pray that I can keep the perspective of giving thanks on the hills and those valleys. I want to remember that He is with me throughout it all. There is no fear or condemnation for me. I want to have more vulnerability with those I love and know to love me, a new job possibility, spiritual growth in my family, incredible celebrations, and joy. Happiness is circumstantial, but joy, well, friends, joy comes from the Lord. You can have joy on the mountaintops and the valleys. 

 

Faith Journey

Setting Boundaries VS Putting Up Walls

Setting Boundaries VS Putting Up Walls

Setting Boundaries VS Putting Up Walls

Setting Boundaries VS Putting Up walls is something I struggle with because I sometimes live in fear. I am choosing not to live in fear because fear is a liar. Honestly, I am so tired of living under the judgment of others. Let me tell you something, friends, oh my word. I’m fixing to use my words and all of them. My words may not be pretty, but sometimes you must let it out.

I will have to take a few minutes and watch a Chopped episode. My brain moves faster than my fingers, and the emotions are strong. Let’s say I am completely and totally over it. A change is coming, and it may take till Jesus returns, but I am done!

Let’s Try This Again

I am not a people person. Yet, I’m empathetic (so I’ve been told), and I have the heart to help others. Those people who are unseen. People that other people snub their noses at because they don’t dress/live/act “appropriately.” I’m just saying that those are my people. I see them, I feel them, I understand them.

Their problems, I feel deep within my soul. The look in their eyes can tell a thousand stories, and they want to share that story. They want to be loved, accepted, and NOT judged. I CHOOSE to love, take, and not pass judgment on them. Honestly, I want to meet them where they are currently and walk into their world. It is an honor to step into their stories.

Hard Realization

What a brutal realization that most people in this world do not think the same way. I just don’t get it. How can you not love and SEE the people around you? The unseen, the less than, the “you are not in my circle. Therefore, you do not exist” people.

For the love of all that is holy, Jesus’ second greatest commandment is to LOVE OTHERS. Matthew 22: 36-40 clearly states, “Teacher, which is the greatest commandment in the Law?” Jesus replied: ‘ Love the Lord your God with all your heart and with all your soul and with all your mind. The first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself. All the Law and the Prophets hang on these two commandments.’

The Things That Have Happened

I cannot and will not detail the struggles we have had this summer. It has hit me hard that not everyone thinks like this. Love as Jesus says to love. What they want is to steal, kill, and destroy my joy. My joy is my family. They are all I think of and commit to 100% every minute of every day.

So Much Loss and Pain

The loss and pain were entirely preventable. Let’s try something radical. If you think something is wrong with a friend or their family, then TALK TO THEM. Ask how you can help them, pray for them without details, and listen to their cry. Clean their house, run an errand, cook a meal. Be the hands and feet of Jesus.

Radical, you think?

Outcome

Well, our outcome has been standing on Exodus 14:14 “The Lord will fight your battle. You have to be quiet.” I was quiet. There were lots of tears, lots of reflection. There was a period of hiding, a valley of severe depression and anxiety, another medical condition for a child due to the STRESS so-called “friends” put us through. Thank you for that, honestly. It’s been the most fun.

My Oak

This woman. She blew in like a whirlwind. Then, she ironed out all the people in my house. Next, she found me. With that hug, I melted into her arm. I felt her love permeate every single molecule of my body.

She gently walked me upstairs, and we both lay down and talked. I cried, and she sat in silence and rubbed my hair like when I was a little girl. She permitted me to wallow for a day, but tomorrow I have to get up and wash my face and face the day. There will be no hiding for her little girl.

She loves me. Unconditionally. She sees me. Truthfully. She knows all that has happened, yet she loves those who hurt her baby so profoundly. My kids will be blessed if I am 1/2 the mama she is when I grow up. She blesses me.

A Few True Friends

We discovered those who would stand by us and those who judge us. Prayer warriors surrounded us and kept us safe. We stood before God clean. Our family came out on the other side with no truth coming from the claims and lies.

For Now

I choose self-care. Pet a cat (or 12), bake, eat candy, smile more, block people on social media, keep loving on the “less of these” people, wash my hands, wear a mask, parent my kids, love my husband, and love my God. My enemies cannot hurt me because God goes before me, after me, and stands on each side of me. If you want to get to my family or me, you must go through Him first.

Good luck to you.

 

 

 

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.

 

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 🙂

 

Faith Journey, Medical Issues, Opsoclonus Myoclonus Syndrome

A Journey of Healing

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A Journey of Healing

I will only discuss this last leg of our journey as we step out of our finite “reasonable” box and into infinite faith.

Hope

Our journey is hard to explain without sounding like I live on another planet. So trust that God is good even when we don’t understand. That with Christ, all things are possible. HOPE. Here is a taste of what the Lord has been showing me.

Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place, this whack-a-doo treatment, and faith saved her daughter’s life. She tried to explain it to me, but I had no clue what she was talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.

I have mentioned this place to several friends, who struggle with autoimmune issues, and I just put a bug in their ear, and then I give them Les’ number. Take the middle man out of it. I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than traditional medicine.

June 6, 2017

When H woke up from his nap on June 6, 2017, our lives changed forever. Our first dx was from a local hospital. In reality, a chigger should not EVER go there, but whatever. They diagnosed H with Strep, though he tested negative. “Give him these antibiotics, and he will be fine in 10 days.”

Uhm, did you get your degree from a Cracker Jack Box?

He cannot walk.

Hospital 2

We left and immediately drove to a children’s hospital out of state. We stayed there for several hours and then got the second dx. They said he had Cerebellitis. It is a common diagnosis when a child presents with the symptoms he presented with when we got there. The dr said it would run its course (virus type thing), and he should be better in 10 days.

Yep. That did not sit well with me.

 So, we made some calls to a friend who worked for a Neuro. Another friend has boatloads of experience with Neuros because her daughter has TM. Also, we talked to our parents and my sister (H’s Mamaw). Then we decided to take him to a different children’s hospital and see if that neuro agreed with the first neuro.

Hospital 3

We came home, spent the night, and then I got up early with H and headed to another hospital, alone, genuinely thinking this neuro would agree with the last neuro. Yep, that didn’t happen.

That was the beginning of our worst nightmare.

It is so easy to praise God when all is good in the world. When things are running smoothly, and all things are moving and grooving in a good flow. I picture my family and me sitting around a campfire singing Kumbaya. Then, you see your fire starting to go out, and it is getting cold outside, and you are frantically searching for anything and everything you can burn to get that fire back.

Before you know it, a bird flies overhead and pees on your ember. Your flame is gone, and you are sitting there, cold and in the dark. You think it can’t get much worse but have eaten that last s’more. Now you have no heat, light, or food. It is doable, sucky, but doable. Then the monsoon hits, and you feel like you will never be out of this space, and your fire will never come back.

Offical “Clinical” Diagnosis

Our official clinical diagnosis was made at another hospital. Sadly, there is no definitive test you can do. There is no amount of MRIs, LPs, blood work, X-rays, or EEGs. Nothing can officially say this is what you have. It is a combination of symptoms and what they equal up to after you test for everything else on the planet.

Opsoclonus Myoclonus Syndrome was 1 in 10 million. Once this diagnosis took hold, I did TONS of research. I joined a wonderful online support group and received encouragement and a wealth of information.

Protocol by Dr. Frank Pranzetelli

We started high-dose steroids while hospitalized. We also started our first of many IVIG treatments. IVIG was done monthly. Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo). The total on that was about four treatments. Since those were not working, we moved to add in ACTH. Acthar (ACTH) is a shot that we give him daily. It is another type of steroid. We did this for about three mths. All this did was to MAGNIFY his rage, insomnia, and severe OCD tendencies. My sweet little boy was not there anymore. He was like a raging animal that always stayed in a fight or flight mode.

Second Opinion

I was getting a second opinion without permission! Dr. Lightner answered so many of my questions. She was open, honest, and forthright, and in-my-face wording helped me immensely. Dr. Lightner was a breath of fresh air, though I did not care what she said.

 She stated that H’s condition was more progressive. Dr. Lightner did not see the ocular flutter, which, to her, ruled out OMS. She wanted to run all the tests again. The previous test had been a year ago. Note that she was wrong. He did have OMS. H was assessed correctly and diagnosed at UPMC in Pittsburgh by the amazing Dr. Kavita Thakkar.

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 All tests returned the same, and while he was at the hospital, the ocular flutter reappeared, making her believe that it was OMS (confusing, I know). So, in the end, we felt confident in this “clinical” diagnosis. She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was confirming a diagnosis.

Zebra versus Okapi

In the medical field, a ZEBRA means an unlikely diagnostic possibility. It comes from an old saying used in teaching medical students. These students are taught how to think logically regarding the differential diagnosis: ‘When you hear hoofbeats, think of horses, not zebras.’ H was not a horse. We THOUGHT he was a zebra. Then, we discovered that he is NOT a zebra. He is an Okapi (incidentally my all-time favorite animal). They are incredibly rare.

 Unconventional Treatment

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite—SonRidge Health and Healing Center in St. Augustine, Florida. Dr. Marty Monahan took over the business with Jack Garvy retired.  

I have 11 people in my immediate family. Everyone is going in a different direction. We have one struggling with depression, one planning her life, and one who can’t keep her head above the waves. There is one who is ready to launch, one whose deficit and valley get larger and larger, and one who is stepping into puberty. Then there is the one who can either walk or not walk based on any given day and circumstances.

Add that to a mentally exhausted mama, an overworked daddy, and a strained marriage, and you see that we all needed new scenery.  5 Days After my Son’s Treatment.  

This Happened: My Boy is WALKING

My Boy is WALKING after three intensive days of therapy. I can’t even adequately verbalize my emotions. Amazingly, I watched him stand up by himself. As a result, this was a moment I will never forget. Then, because He is incredible, he RUNS to the ocean. I’m so thankful that I caught that on my camera. I got the best video; ironically, my camera attached a still shot. Yes, it is framed in my house. H, running to the ocean, carrying a stick. Fearless, confident, and strong. I’m amazed at God’s goodness. We still have a long road to go. Realistically, this is an unknown condition. God has healed him. We are just waiting for the complete manifestation of that healing in his little body.

Let’s Absorb

My Boy is WALKING!!!!!!!!!!! He is still shaky, but he is out of that damned wheelchair. Honestly, he does not even need the gait walker. He gets tired quickly, but when he is up, he runs. It is a miracle from God. I know that the stripes of Jesus have already healed him. Today, I have seen with my eyes instead of hearing with my ears.

Meet My Okapi Miracle

What a miraculous moment. God is always good, yet when you see your son walk unassisted for the first time in MONTHS.  You CHOOSE to give God the glory because He is the only one who deserves it.  God is writing H’s story. He has been writing since before He created the Earth.  I get to sit on the sidelines and enjoy the view.

He has all the provisions in place for H. For what he is dealing with and all trials that he is currently going through.  God is good. He is faithful.  Our family will heal. Our son WILL heal.  He is strong, kind, brave, and good. I will hold onto this moment for the rest of my life. My heart almost explodes every single time I see it.

He just got up, running to the ocean. The ocean is his haven and his safe place. The bathtub, not so much. The shower, not on your life. He is not even fond of the swimming pool.  When you see the ocean’s vastness, one would think he would be afraid. 

Fear. It is not in this boy’s vocabulary regarding the ocean.

He is simply fearless.

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.

 

Faith Journey

Just Be Held

Just Be Held

Just Be Held. I am having a come apart right now. It has been a week, month, and year, just a lot. Here are the lyrics to this song.

Just Be Held

Hold it all together

Everybody needs you strong

But life hits you out of nowhere

And barely leaves you holding on

And when you’re tired of fighting

Chained by your control

There’s freedom in surrender

Lay it down and let it go

Thoughts

As a mom, we all know this. We are the Superman to all the issues of life. We put things back together with superglue and a tampon. My son has told me that if I cry, that is like Superman with a broken arm. Honestly, moms do not cry. I have chosen my life, or maybe I am living the life God chose for me; hmmm, I need to ponder that.

My life is one giant complication. Marriage is not easy. Parenting at any stage is not easy. Throw in control issues, have special needs kids that were out of your control, a medically fragile child, aging parents, death, poor choices, and you have a mess.

But God

So when you’re on your knees and answers seem so far away

You’re not alone, stop holding on and just be held

Your world’s not falling apart, it’s falling into place

I’m on the throne, stop holding on and just be held

Just be held, just be held

If your eyes are on the storm

You’ll wonder if I love you still

But if your eyes are on the cross

You’ll know I always have and I always will

Thoughts

Right here. These words. They pierce my soul. I do see things falling apart. In 8 weeks, I’ve had two sons bullied by students and administration. The suspension has happened twice for one son. We’ve had a flare-up with another son. One son is spreading his wings. Daughters who are dealing with the hardships of lost relationships, a new marriage, jobs, and school. Just so much.

Yet, He is not upon the throne biting his nails or eating popcorn, wondering what will happen next. He has already created the perfect provisions for all these issues. Then there is control. Me. Free-will. If I would take my eyes off the storm and gaze them upward. Frankly, how would my perspective change?

No Tears Wasted

And not a tear is wasted

In time, you’ll understand

I’m painting beauty with the ashes

Your life is in My hands

Thoughts

Honestly, I love those verses in the Word so much that I have Isaiah 61:3 tattooed on my body. Frankly, the other verse may also need to go on my person. For instance, He has captured EVERY tear of mine (and yours) and placed it in a bottle. This is how much He cares for you. Furthermore, it is like you are the only person on Earth whose sole job is to love and comfort you.

Chorus

So when you’re on your knees and answers seem so far away

You’re not alone, stop holding on and just be held

Your world’s not falling apart, it’s falling into place

I’m on the throne, stop holding on and just be held

Just be held, just be held

 

In the Midst

Lift your hands, lift your eyes

In the storm is where you’ll find Me

And where you are, I’ll hold your heart

I’ll hold your heart

Come to Me, find your rest

In the arms of the God who won’t let go

So when you’re on your knees and answers seem so far away

You’re not alone, stop holding on and just be held

Your world’s not falling apart, it’s falling into place

I’m on the throne, stop holding on and just be held

Thoughts

Amid the storm, however, lift your hands. Furthermore, gaze your eyes above the waves. God is there, holding your heart in His hands. In Him, He has already fixed the problem. I pray that I will never forget that truth.

 

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 🙂

 

Adoption, Faith Journey

It is Time to Let Go and be Free

  1. It is Time to Let Go and be Free

It is Time to Let Go and be Free

What a phrase that is. Val Kilmer typed that to Tom Cruise in the new movie Maverick. I have been praying a lot. Primarily for clarity in a few situations that are ongoing in our family. God speaks in a variety of ways. I guess speaking through a film is one way to do it.  

At some point in my life, I have to stop torturing myself so much. It is constant. I torture myself daily. I am the kind of wife, mother, daughter, and sister that owns all the things. I question my motives, intentions, desires, and thoughts. Where things go wrong, regardless of who is at its root, I torture myself. Torturing myself has gone on for years. I can’t just let it roll off my back, it absorbs in my soul, and I wear the wrongs like a cloak.

I believe it is time to torture myself a little bit less. Today is a good day. I can believe everything I’m typing. Tomorrow may be different.

As I was floating in our pool, listening to H play, I thought of everything I “own.” Running through my list, I went through all our children, my siblings, parents, marriage, etc. Then, it hit me. 99% of what I torture myself about has nothing to do with me. I didn’t cause it, and I can’t fix it. Let’s jump back into our adoption years.

Life Just Isn’t Always so Tidy.

God’s plan isn’t always so easy to understand. Our first plan was international when we decided to expand our family through adoption. I knew Ethiopia was in our future at a young age. Yet God had other plans.  

He brought in our first set of kids for a season, reuniting them within about a month with their birth mom.  When the left, I thought I had done something wrong.

For some reason, I believed it was my fault that they returned to their mother. I was so young and inexperienced in foster care and adoption through the foster care system.

I know now that reunification is always the first thing to do, if possible. What a beautiful thing that they got to go back to the one that gave them life. It was a short season with her, but I know that they are safe and loved with the family they are with now. I can let that go. My love for those kids will always be powerful. Yet, God had other plans. Now, I can be happy and thankful I was a safe haven for them. They were loved by us and loved by so many people.

Release.

Sometimes Reunification is Not a Possibility.

When we got the call for our second set of kids, I allowed fear to creep into my heart. Sadly, I had not healed from the loss of the previous two children. Again, I wore a cloak and tortured myself for something that wasn’t mine to wear.  

Reunification was not in the cards for our second placement. We met these kids so full of tentative smiles and lots of hyperactivity. We were eager to expand our family. Yet, we tried to do everything right to reunify them with their birth mom. Sadly, that didn’t work, and trauma was prevalent.

Coming from Foster Care is a Tricky Thing

These kids were coming from multiple foster homes. Living in numerous homes was due to behavior, PTSD, and more. We were so ill-equipped to handle the needs of one of the children and we had no help or resources from the state.

Looking back, almost 16 years later, we see all the signs. Then, we just wanted to heal, love, and show this child Christ. One of my kids has written some powerful things about foster care and abuse. Those things are very well-spoken.

Now, this young person is someone I don’t even know. A lot of damage has been done, and bridges have been burned. However, my (our) love for this child will always remain steadfast, though we have to protect the other kids in our home.

I hope that one day, we can all be reunited. Forgiveness can take place, and healing can happen. Healing and forgiveness can only be orchestrated by the One that loves us all.

Right now, that isn’t what is going to happen. For years, I thought I was crazy. Hindsight is 20/20.

Now, I see where I was at fault, and I’ve apologized and made peace with it, for the most part. Again, I’m wearing a giant cloak that is not mine.  

I am not responsible for the decisions being made now. The things in the past I’ve owned, asked forgiveness for, and tried to remedy within myself. Sadly, I have no control over what is going on now. I pray that help is sought, proper medication, therapy, nutrition, sleep, and a lot of Jesus will permeate this child’s life.  

In my life, I choose to continue with therapy, confide in those closest to me, seek the face of Jesus, and prepare for rain. Preparing for rain looks different for everyone. In our case, we have cameras up, people who need to know are made aware of things, an attorney if things go in a way they shouldn’t, authorities are on alert, and documents are gathered. Preparing and doing these things are not indicative of anything other than protecting my other kids. My hope and prayer are still that the Lord reunites my whole family.

Release.

Things are Looking Up

Our pool is working, the air conditioning is cooking (though it is limping), we are all healthy, and great things are on the horizon. I have introduced my grandkids to music! Music is one thing that we missed in those years. We had to limit it due to some obsessions. Now, my home is flooded with music and dancing. My grands love opera! We listen to blues, the 60s, classical, praise and worship, old hymns, Frank Sinatra, and much more. Then there is J & D’s music. I’m not sure what you classify that as, LOL. It is so joyful and peaceful (most of the time).  

I have plants that are still alive. That is a fantastic thing! We are slowly redoing the things that need to be renovated in our house. Thankfully, I’m not obsessing over those little things. I’m reveling in the fact that we can and are making progress. H has made great strides and improvements with his OMS and behavior. J is thriving. D is succeeding, and his growth astounds me. Our relationship has improved a 1000%. We talk every night. I mean, honestly, what teenage boy wants to talk to his mom every night. Yet, he calls like clockwork, and we have the best conversations. My bigs are healthy, grandbabies are healthy, and my son is having an event in March. My parents are here often, and I love that so much.

Release.

In All the Thanks for the Above

I still miss my one. Still, I want that one here enjoying everything and being a part of our life. Yet, that isn’t going to happen right now. It can happen, and I pray that it will. For now, I continue to pray for healing. I revel in peace. Slowly, I take off the cloaks that are not mine. I’m giving them back to whom they belong while owning what I need to own. I’m prepared for the rain. I am not afraid. We are good, safe, loved, and healthy.   

Release.