Adoption, Medical Issues, Opsoclonus Myoclonus Syndrome

Trudging Through the Muck

Trudging Through the Muck

Trudging Through the Muck. It is so challenging to parent a special needs child. Parenting, alone, is challenging. My child has a very rare condition called Opsoclonus Myoclonus Syndrome. Typically, a child with OMS, they will have neuroblastoma in their chest cavity. However, some cases are idiopathic, like ours. Idiopathic means there is no real reason for something to happen. In short, we have no clue what brought OMS along in our child’s life and body.

One day, my child was completely developmentally on target and perfectly “normal” and then the next day, he isn’t. He went from fine to newborn status with a side of extreme shaking, much like Parkinson’s. My child had to relearn all the things. He had to learn how to sit up, hold his head up, walk, talk, feed himself, etc. It has been one of the most challenging journeys of my life.

Support System

I do have a great support system (with the exception of 98% of any doctors). He has grandparents, great-grandparents, siblings, therapists, church, etc. However, no one really knows how it has all played out except those of us who have lived it, daily, with him.

My husband, 6 of my children, my son, and me. We are the ones who have walked it day in and day out. There have been many times I have had people at church pray over us, come to our home to pray, family, friends, who have all loved us well. Truly, they have filled in the gaps in so many ways from encouragement to prayers to food to just listening to me cry.

Yet, there is so much they do not know. There is so much I hold close to my heart because it is hard…sacred…forever changing. I have had to share more of these sacred moments to his therapist because my child is remembering some of the darker moments of his illness. Moments I thought he wouldn’t remember, that I prayed he wouldn’t remember, but he does and we have to deal with it.

Nowadays

When I talk to people about things that are just a part of our life, I realize it isn’t normal. The looks on their faces are shocked, saddened, horrified, and I am just chatting away. Oblivious. This is our normal but when I mention something or someone notices an odd behavior, they are dumbfounded because I speak of this so matter-of-factly.

In the beginning, for several years, our goal was to keep him alive. He lost 3 years of his life doing a massive reboot of relearning everything. Time stood still and we had start over. He had so many hurdles, doctors appointments, therapists, etc. that that is all we did. It is the physicality of the disease that we had to address. Now that the physicality is not so much an issue (barring when he gets sick), now it is the backend of OMS that is kicking our ass. The backend is behaviors, learning disabilities, developmental delays, sleep issues (for some OMS kids), etc.

All the Things and Then Some

This past week, my son has struggled with impulsivity, anger, sadness, sitting still, and listening. The bus monitor had to come to our door to address and issue. We all met Jesus on my front porch. I am going to have to call her and share with her about our kid because she doesn’t know him. To her, he looks normal and should act normal. That simply isn’t the case. Without sharing too much, I intend on shining some light on our rare gem of a child.

He struggles with sitting, on the bus and not listening to simple instructions. The bus monitor was at her wit’s end and I get that but does she ‘get’ him? She doesn’t. That isn’t her fault. My son “looks” like a typical 9 yr old but what she doesn’t see is that he is developmentally about 6 yrs old.

Our son will argue with a tree stump, so he is game on and ready when it comes to anyone in authority. I think he takes after our third and possibly sixth child. Good grief they would argue with anything whether they are right or wrong. The arguing, alone, would make a grown man yield just to make them stop speaking. Our son is the exact same way. He may have a future as a lawyer.

On A Typical Day

I don’t even notice the difference. The age difference between my 6th and 7th child is 8 years. That is a huge gap. In my mind, he is on target until he is with other kids who are his age or even younger. That is when I mourn the loss of what is “normal” and have to readjust to what is in front of me.

It is hard. I am not going to lie. His challenges are steep but everyday we are trying new things but this past week, I was just tired. I get so tired of trying to explain it all away. He is like this because “blah blah blah.” All I get in return is the look of pity or a blank stare of confusion.

We are addressing all of this in therapy. That isn’t going well but we still do it every single week. He has a teacher that loves him and sees him even in the midst of chaos. We have a family that is supportive and a church that is faithful to pray. He is constantly seeing doctors, we have gone gluten free, and so it is an ever revolving door of learning.

Emotions

Last night, we tackled some hard things that have happened and attached them to emotions. He and I spent about 45 minutes working on identifying emotions and understanding them. My son has a lot of medical trauma, birth trauma, acute trauma, and more. We sat and talked about specific things (lying, stealing, and fit throwing). Each scenario, he chose an emotion card and made a statement “I feel sad because kids at school won’t play with me.” We work on how he can approach these kids and did a little role-playing.

In situations like one of our children not seeing him or his birth mom, we pick the scenario and he makes the “I feel” statement with the emotion with it. I come alongside him and I make an “I feel” statement and we talk about it until he doesn’t have anything left to say. When he is done with the topic, he simply says “let’s move on” and we move on.

I am hoping this helps. The emotion cards are in his room, on the fridge, and I am going to laminate some and put them on his backpack. We have also started giving him some primrose and some all natural calming things to help with the impulsivity and rage.

In The End

I am not giving up on him but I am really tired. The thought of being on easy street sounds so good right now. Yet, everyday is a new challenge. I try to tell myself that he really is on target, even though he is behind developmentally. Honestly, I would chose him over and over even knowing what I know now. I love him and I know that he is meant to be my son, even on the hard days.

However, I would love for a concept to sink in with him. I would love for him ‘get’ it. My fear is that he will be labeled without people understanding who he is and what is behind the behavior. It’s hard to explain. If you are out and about and see a tired mama with a raging kid, show her and her kid grace. You have no idea what is going on behind the scenes. Honestly, you are seeing a fraction of what life is like in an isolated moment. Offer a smile without advice. Prayers are always welcome and you can definitely say a breath prayer as you walk by them.

Love. Be kind. Don’t scream at a kid who might be screaming at you. Even if they look “normal” most diseases are invisible. Grace upon grace.

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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

My Oak My Mama

My Oak My Mama

My Oak My Mama

When I think of an Oak Tree, I think of being little and standing next to the giant oak tree in our yard. It was so big that I could not wrap my arms around it.

I remember looking up at it and seeing it touch the clouds. The giant limbs stand firm in the wind while the little limbs sway back and forth.

I can still see the beautiful leaves that protect me from the sun. I also vividly remember the life living on and around it. The ants and critters crawled up the massive trunk of this tree.

Then, when I look down, I am standing on the roots. These roots are so big that they are bulging out of the ground. I can follow the roots from the tree’s base for as far as they reach.

Many days, I stood in awe of the beauty of this massive living thing that God created.

This mighty tree may bend, but it never breaks.

Our oak tree provides shade in the summer. It loses its leaves in the fall, and the old things pass away. The leaves dying allows the sun to shine through the branches and provide heat on a cold day. In the spring, new life forms, and it begins again.

The circle of life in this tree.

My favorite tree is a tree of strength, honor, and consistency. An oak tree to lean on in hard times. This oak tree brings me joy at the sight or the rustle of the leaves.

I would like to introduce to you my Oak, my Mama.

Thank you, Mama, for loving me without abandon and giving me solid roots.

Thank you for being that big, sturdy branch while I flopped in the wind.

You led me to Christ through your faithfulness in your walk.

Also, for guiding me back to Christ when I wandered off and got lost.

You have always loved my husband and my children.

Thankful that you have never judged but were consistent with your faithfulness.

For showing me love when I was unlovable.

You have taught me values and stood up for me.

Mama, you rescued me, rocked me, and baked with me.

More importantly, mashed potatoes, macaroni & cheese, green beans & potatoes, and lima beans for your fried chicken.

You, my Marth, have been a living, breathing example of a Proverbs 31 woman.

You, my sweet Martha, are Oak Tree.

 

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.

 

Guest Blogger

I Wonder What I Will Be Like

 

I Wonder What I Will Be Like

I Wonder What I Will Be Like

I wonder what kind of mom I will be

{I} get anxious thinking about it

I wanted this for so long

But now that it is here, I am scared

 

Love and Fear

I love you more than life itself

But you scare me 

I don’t want to blink and you will be gone

The thought of losing you is unbearable

And you aren’t even here yet

 

My Desire

I want to be a good mom

But I know I will make mistakes

I want to admit to you when I make a mistake

So you know that it’s ok to make mistakes

As long as we learn from them

 

What I See

I see so many families

Hurting, every day

Because of poor choices, the parents made

I can’t be that kind of mom

You don’t deserve that

 

What You Deserve

{You} deserve everything

You deserve the world

I want to preserve your innocence

Shield you from this world

 

Will I?

I wonder if I will be good enough

That is the theme of my life

It has always been there

It always will be

 

Love

I love you more than life itself

But I wonder if I will be a good mom

You deserve a good mom

I want to be that for you