Author Archives: Carlene W.

About Carlene W.

I am a very optimistic person. I love Jesus with all my heart. I always try to extend grace whenever I can, help others in need and enjoy spending quality time with family and friends. I am also helping to raise my grandson with Autism and advocating for him as well.

The Half That Makes Me Whole

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I wrote this earlier this evening and posted it to my Facebook pages.

This Season I’m In

I want to scream and cry all at once
I want the fear and worry to cease
I want to know it will all be okay
I want the meltdowns to go away and never come back
I want healing and return to good health
I want peace without begging for it
I want the pain to end
I want one day to be perfect with no problems
I want the storms to pass and the dark valleys to become full of light again
I want to live and not just exist
I want to smile with my mouth and not just my heart
I want to walk with no more pain
I want to know my husband will never have another stroke or seizure again
I want to be all God calls me to be every day
I want to be a light to someone in their darkest times
I know this season I am will not last forever, this too shall pass
I know God will stretch me beyond what I think I can endure
I know God has a plan for my life
I know I may not understand His methods or His plan
I know part of growing is going through stuff
I know He is always with me
I know Jesus is my source of joy, never-ending love, strengthener of my faith
I know everything I go through, He will use for good
I know I am loved without conditions because I am HIS
I want the world to know that the Grace of God is enough to carry me when my eyes cannot see why we go through what we do. Jesus is enough.
I know how blessed I am and my wants are temporary, my love for Jesus is eternal.
©Carlene S. Wooddell/May 13, 2019

 

Hebrews 10:24 New Living Translation (NLT)
24 Let us think of ways to motivate one another to acts of love and good works.

 

This past week/weekend, our family had some very scary moments.  Where you stop and evaluate your life. Where you remember that it can all be gone in an instant. My husband suffered a stroke that led to a series or maybe just one seizure lasting over 30 minutes. Wires and monitors everywhere, in and out of consciousness, not remembering the episode or even the ride to the hospital, not knowing how close we came to not having him in our lives.

We both know when it is our time to leave this earth, we will return home to Jesus. There is no fear of dying. The fear comes in when you watch the love of your life, laying there motionless and unable to communicate or even aware you are there. As I worked to maintain control of my emotions, silent prayers were being said, calling and texting all prayer warriors to come to our aid again.

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He survived this time. He is home now. I am doing my best to not be the “helicopter wife”, hovering over him and treating him like a baby that needs to be watched over, just waiting for the pin to drop, but it has been difficult to not do that. It is hard to watch him realize he doesn’t know much of what happened and even after asking multiple times, he can’t remember and must ask again. The sorrow in his voice as he apologizes for something he had no control over. The concern on how long these effects of his memory will last and the sheer fatigue that is hard to comprehend when all he does is sleep.

While I do my best to reassure him that the rest his body needs is imperative and the short term memory loss is normal, it does nothing to help him feel better about it. And I don’t know if I were in his shoes, it would make me feel any better or not.

The fact he is required to take new medications to prevent future seizures and the possibility of not driving until he is approved to do so by his Neurologists is scary. Losing any type of independence at any age is daunting.

But we will get through this together, one day at a time.

Tell the people in your life how much they mean to you, show them by your actions, love them daily as if it is their last because when that time comes for them to pass on, don’t leave regrets of words and actions not being said because you always thought there would be time. Settle disagreements quickly. Life is so very short.

Trust that Jesus has a plan for your life and He loves you very much!

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings~Carlene

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**Defining Moments**

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And we are confident that he hears us whenever we ask for anything that pleases him. And since we know he hears us when we make our requests, we also know that he will give us what we ask for.

1 John 5:14-15 NLT

The past few weeks, our church sermons have been about defining moments in our lives where you knew they were orchestrated by the Lord. Times of trials and joys and what was it that made it a defining moment for you? Did this moment in time grow your faith? Show you how much Jesus listens to you, your cries, your prayers? And would you be willing to share your testimony of what those defining moments looked like in your life?

These sermons started me thinking. What have some of the most defining moments in my life been and there are two that stand out. Oh yes, I have had more than two and I am sure at some point I will share those also, but these really rooted my faith in the Father.

I gave up my life to follow Jesus at the age of 11. I have always been someone that loves Jesus. I had drifted away from talking to him all the time, but in 2006, after many hard times, and trying to do it all on my own, not leaning into Him or focusing on His strength, not mine, he showed up in a pretty big way. If you have heard this before, please forgive the repeat, but these moments were huge for me.

I used to work for a big box retailer and part of my job that day was to count products and make sure they were scanning correctly, fixing shelf labels and enter the data into our system if errors were found. This particular afternoon, I was in one of my least favorite sections of the store. The aisle that holds all the tiny travel sizes of shampoos, toothpaste, lotions, etc.  Those are always a nightmare to count and check, but in order to have accurate counts and correct pricing, like any other item, it had to be done.

I set to the task and started counting, scanning, making notations, printing labels and things were going fairly quickly and as customers appeared in the aisles, I would stop and greet them, ask if they needed help and then continue on with this exhaustive task. One customer kept reappearing in the aisle, but something was different about her. Although she had replied several times that she didn’t need help, I felt a nudge in my heart that not only did she need compassion more than ever, the Lord was telling me to pray for her.

At that moment in my life, I loved praying for others through texts and emails but wasn’t confident about praying out loud for anyone. I always felt I would mess it up somehow, or I wouldn’t know what to say. And if you know Jesus, he doesn’t let us stay in our comfort zone for very long. He is constantly working to stretch us beyond our abilities because this is when He is our strength. He is the wisdom we need in our lives. And as futile as it was, internally I was arguing with Him. I was struggling to offer to pray. But no matter how many times I tried to focus on my job, the Lord wasn’t having any part of it and so I stood from my kneeling position and I asked once again if I could help her.

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As she started to speak, tears gently rolled down her cheek. She told me that she had a brain tumor. She was told that without the surgery, to remove the tumor, she would die, but if she chose to have the surgery, there was a 50% chance she would recover and live a long life. It was scheduled for a few days away and her family didn’t believe in Jesus or God and that she was struggling in what to do. And then she apologized for burdening me with her problems.

I asked for her name. She told me her name was Robyn. I introduced myself to her, although clearly she already knew my name as my name badge was there for the world to see. And then, with a lot of trepidation and internal fear, I asked if I could pray for her. She said that would be great, she always welcomed prayers. But I wasn’t sure she understood my request. So, I went onto say, may I pray for you right now at this moment? Again, she agreed. I asked if I could place my hand on her shoulder and she said yes (by now a small crowd had gathered in this aisle, listening to every word) and I asked God to give me the words. I don’t recall what the words were, but I prayed with her and over her. We hugged and she cried. There were many tears that day. Before she left, she told me that earlier in the day, she had cried out to the Lord and said, Lord if you are in agreement with me having this surgery, I need a sign. I need to know I am doing what should be done. She told me she knew she would be okay and slowly walked away.

I never saw her again. But I know she is living her life to the fullest. And that was the day, I stopped letting fear take over and started listening to the nudges from the Holy Spirit. I think about that moment as if suspended in time. I can see her face, I can feel how I used to think – Why me? Why can’t someone else do it? – and I still remember the blessing of being able to walk in obedience and do what was asked of me, even if I did it with a little bit of fear.  As for my work that day, I did complete it, but with a lot more joy in my heart than when I had started.

The enemy will do everything in his power to squash us, our faith, our relationship with Jesus. He will create doubt within us if we let him. Don’t.  Trust that no matter what Jesus calls you to do, he will give you everything you need to accomplish it!

Christmas tree stand

 

The second most defining moment had to do with our Christmas tree. Our son, now 23, was 11 years old and he loved everything to do with Christmas, but especially putting up the tree. During this season in our lives, there were no extra funds for anything extra. Gifts were made for our children and maybe a few special items from a dollar store.

The night we drag the Christmas tree box out of storage, sort the branches by size and reach into the box to get the plastic tree stand out, his boyish grin, all excited with anticipation, falls to the floor and sadness overtakes his entire face. His shoulders are slumped down and he is about to give up because the plastic stand was old and somehow had broken in several pieces while in storage.  He knew our situation. He knew we didn’t have money to buy a new tree with a stand or a stand that we could use, but I have always believed duct tape is the only tool I need. His father and I were separated and his father lived far away, so coming up with a solution to mend this stand, was forming in my mind, but I knew this was a way to teach him about faith.

I assured him that not all hope was lost. I asked him to retrieve a small board from my closet and the roll of duct tape. I was sure we could fix it. He tried to be brave and not let me see his tears and said, “it’s okay mom, we don’t need a tree this year.” My heart sank. I asked if he believed in the power of prayer and if he believed that God could make this tree stand. He said maybe. So, as I begin to tape together the stand, I prayed to ask God to help me. I knew that for my child to believe, he needed something tangible that he could see. And God knew that too.

After several moments of attempting to tape it together and then fashioning it into something that resembled a tree stand, we secured it to the small wooden board. Again, I asked him, if you believe in your heart that Jesus is God and God can do anything, will you pray with me and let’s ask God to help us help our little tree stand, with all the ornaments and lights on it. With the star on top. For God to strengthen this heavy tree, so we could celebrate Jesus and His birthday. AND if the cat, went exploring, as she always did when the tree was put together, that the broken stand would hold her ground. So we bowed our heads and held onto that board and we prayed. We also thanked God for his love for his children and for his help.

I have no doubt it was all God. That little stand and that tree with heavy ceramic ornaments and many strands of light and a very inquisitive cat,  held up until the tree was finally tossed out as it had many years of use (approximately 10 total, 4 with the mended stand). And his faith grew. He knew that he could go to prayer to God about anything, anytime and God would listen.

As our son, has grown into a man, he knows that sometime’s God says yes, sometimes no and sometime’s wait. But I know as a mother, that was one of his defining moments and definitely one of mine; I am so blessed by the love Jesus shows every day to each of us.

These moments remind me in my darkest times, that God is always with me. That I don’t have to be perfect or have all the answers, because HE is and HE does. It is my responsibility to trust Him in everything and for everything.

May you know how much Jesus Loves You! You are His child. He is always listening. He can and will use any mess as a message to others and any test you go through as a testimony to His glory! #HopeAlwaysHaveFaith

Blessings~Carlene

 

Tender Mercies

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Mercies New Every Morning

Just as the Lord’s mercies are new every morning, I am finding my compassion and mercy must be just as new every day and the events from the previous day must be filed in the crevices of my brain as another day done.

It is so easy to hold onto hurts, hangups, and insecurities and let them fester in our minds. If we dwell on events that have happened days before or years before, we are not living as Jesus Christ wants us to.

Today was a difficult day in our home. For all of us. It didn’t start out that way, most days never do but throw in a child that can meltdown in a moment, and heated words and tempers flared toward one another and you usually have a recipe for disaster. I was reminded of this as my husband attempted to usher our grandson into the house after he climbed down the steps of his school bus with little success. He’s a runner and he loves being outside. After many months of  a cold winter, it’s understandable that he doesn’t want to come into the house, but not only is he not old enough to be outside alone, he has a tendency to run as soon as he can and chasing him around the house or down the street to catch him and encourage him to come inside is less than ideal. It usually requires one of us carrying him in, kicking and screaming, literally.  And as usual, if there are cars passing by or people they may think he is being hurt or abducted. In today’s world, there is always a fear that someone will think that.  And the stares are just as bad as if someone actually says something. Nothing was said, but there were stares and immediately you are on the defense. Even if you don’t want to be. No one, unless they live with an autistic child, can understand the stares or unspoken comments just lingering there.

While we try to calm him and explain why he can’t come outside, the person passing by makes her way to our front door. I opt to be the person to open the door and am ready to matter-of-factly let this person know, everything is ok; he lives here. When she just comes to tell me, I totally understand what you are going through. My child is autistic. At that moment all defensiveness subsides and I am so thankful she chose to come back and speak those words. She stood on my porch for many minutes and we talked about how difficult it is and shook hands knowing that she is not alone in this journey either.

That one event changed the course of our day for all of us. Everyone was on edge for the rest of the day. But we didn’t have to be. We could have chosen to let that moment go and continue with our day; however, no one told our grandson that it was over. He managed to stay in his defiant mood for most of the day. Nothing was going as he wanted, so, therefore, he did what he does. He screamed. He cried. He slammed himself into the wooden gates that separate rooms. He threw a tantrum in the vehicle because he wasn’t getting his way.  I’ll admit there are times like today that I cry inwardly because I know that some of it he can control and other moments the overload is just too much and that is the only way he can react because he is lost inside himself.

We go through this so much, that it is part of our normal. We don’t like to go through it, but some days we get through with showing mercy and grace.  And then there are days like today when a rough day seems to hit all at once and nothing said or done, makes a difference. So I pray, and I seek the Lord. I pray for wisdom and clarity, give me the right words Lord. Help me; help us.

His routine on Tuesday’s is so different from his other days of the week, that right now, Tuesday’s and the weekend days are the hardest. On Monday, Wednesday, Thursday and Friday, these are his days of joy. He goes to ABA therapy in the afternoon and he loves going and working on new things and learning new ways. But not on Tuesday. On Tuesday he goes to Speech Therapy. He has been going to speech therapy for over 2 1/2 years.  I know there are days he doesn’t want to go. He wants a break. And I will admit, there are days I don’t want to have to go to one more therapy session, but it has helped him so much to develop his language and speak, that we won’t quit or give up or give in.

Three years ago, he didn’t speak. He was nonverbal. He didn’t make eye contact or engage with others. He was in his own little world and very rarely were we let in. Now he wants us to play with him. He loves learning. Putting puzzles together. Counting and reciting his ABC’s. He loves school and although he is developmentally behind his peers, he is catching up. And one day he will get there. I cling to that hope. I cling to the day that his words will be clear and communication will no longer be a problem. The funniest thing is that when he is mad, his words are very concise and clear. It’s only when he gets in a hurry to tell us something, that we struggle with understanding his speech.

We were concerned about how he would react to his new baby sister. Would he hurt her? Would he understand that she is fragile? Would he love her or at least like her? We had nothing to worry about.  He worries when she cries and he tries to soothe her by talking to her or giving her a pacifier. He is so in love with her. And yes, we still have to watch him like a hawk, because there have been times he wants to pick her up from her bassinet and soothe her cries. He loves holding her and rocking her. I know he will always be a great big brother to her and how lucky she is.

As he became sleepy tonight, he made his way to each of us and in a small tearful voice told each one of us he loves us. And as we hugged him, we reassured him we love you too buddy.  Bless his heart. He doesn’t like having bad days either and at least he knows that our love will never change, no matter what his behavior is. He taught me a lot about forgiveness, by saying those three little words.

God’s mercies are new every morning. Ours should be too. We can’t change what happens in the past, whether it’s 5 minutes ago or 5 years ago, but we can change how we respond.

Now, as I sit here and I watch him sleeping, he looks so peaceful. The peace we had hoped would be part of our day, is, just not as we had thought it would be. He’s all boy. He wants to play outdoors, run wild and have fun. He likes picking up sticks and breaking them in half, He tries to help rake the yard and clear all the sticks that have fallen over the winter and early spring storms. Yes, it has made more work for us, but he tries. He hates being indoors, but being outdoors requires preparation. There has to be several of us with him as there are no fences or barriers from him going into the street and he still has no sense of danger.

My challenge to you is this: the next time you are out in your neighborhood or at the store or a local restaurant, don’t be the first to assume that a child is out of control and parents need to take care of that child. They may be doing the best they can with the situation they are given. And remember, God gives us grace daily. Not because we have earned it, but simply because He loves us.

Our charge by the Lord is to love Him and love others. My prayer is that I show the love of Jesus to all I meet and when I fail, grace and mercy will carry me through.

May you know how much Jesus Loves You ~ right now and always. Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

Acceptance Is Needed

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Genesis 1:27 New Living Translation (NLT)
27 So God created human beings[a] in his own image.
In the image of God he created them;
male and female he created them.

April is Autism Awareness Month, but what I propose is let’s change it to Autism Acceptance month!   Awareness is okay, but acceptance is what is needed.  There are so many autistic individuals that hear ‘there isn’t a cure’ or ‘we don’t know what causes autism’ and for many individuals on the autism spectrum, they don’t want to be cured; they want to be recognized as individuals who have neurological differences and their brains are wired differently, but there isn’t anything wrong with them.  And guess what, they’re right. autism symbol

Tyson is still the same boy we loved before he was diagnosed with Autism Spectrum Disorder. He has had many challenges and he will, most likely, face challenges as he grows older because of the autism, but having this neurological disorder doesn’t make him less than someone without it, it just means he needs extra help.

When Tyson was diagnosed in July of 2016, he was diagnosed as level 2, meaning he would require substantial support. He has made great strides through intensive home and outpatient therapy, preschool and has added ABA to his list of supports. He no longer needs PECS (Picture Exchange Communication System) or sign language to communicate as he has found his voice. We are so thankful for and happy for him that he has. Communication is a big component of Autism. Some people are nonverbal indefinitely, other’s use visual supports and sign language or ACC devices to communicate.

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Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.

Social cues is another big area where many autistic individuals have a difficult time. Depending on the individual they may learn how to ‘act’ like their peers and try to blend in; for others slang language or sarcasm is totally lost on them and they don’t understand why you can’t say what you mean, instead of ‘beating around the bush.’ Just be straight forward and say it! For Tyson, he is a very social person when he knows the people, but when we are in a waiting room or a store, he tends to hide and shy away from people. Too many people cause him to be afraid or have anxiety. Even places we go all the time, like outpatient speech therapy.

Sensory processing comes into play for a lot of individuals on the Autism Spectrum. Everyone is different. Bright lights, loud noises, the hum of fluorescent lights, hair dryers, vacuum cleaners, lots of people talking in a restaurant, too many people in one place –  these are just some of the things people can be overwhelmed by and if they become overstimulated or overloaded, a meltdown may occur.

Our Autism Home

Meltdowns are totally different than temper tantrums. A temper tantrum is a reaction to not getting something you want and a person throwing a fit looking for a reaction or response to it.  A meltdown is a neurological response to overload and they have no control over it happening. A meltdown looks different for every individual.

Stimming is a term that most people don’t understand or understand the reason why many autistic individuals stim. Lots of neurotypical people stim but usually in a more quiet way.  For instance, if you are the type of person that gets nervous in a meeting at work, you may tap your foot or click your pen. But most NT people know when to stop. For autistic individuals, stimming is a way to self-soothe when everything becomes too much to handle. Some people flap their hands, jump up and down, spin around, hum, make noises only known to them and their loved ones, dance and the list goes on. For every individual on the spectrum, there are just as many different ways to stim. The only time I have stopped Tyson from any particular stim is if he will hurt himself. Then redirection is necessary.

The one saying that holds true in the Autism community is “If you have met one person with autism, you have met one person with autism.” There are families with multiple people that have autism and not everyone in the family will deal with the same challenges or respond the same way.  Each case is individual.

The last thing I want to say about this today is please be aware that parents/grandparents/caregivers of children/adults of autism don’t have all the answers, they have the answers that work for their specific human. And sometime’s they don’t even have those. It is very exhausting to fight a system to get services, some due to long waiting lists or fighting with the insurance company to approve it or finding services that will be approved.

There are many different types of therapies that can help people on the spectrum, but not every person needs every therapy available and not every therapy available helps every person. To date, there are no medications for autism. There are many co-morbid conditions that some people with autism have, such as ADHD or anxiety/depression and there are medications for those; as well as many holistic approaches to help people.

The Lord God created all of us.  None of us are exactly alike. All of us are “wired” the way He chose for us to be. Please think about that the next time you meet an individual with who is Autistic.

I know I have only touched on the basics of Autism, but this is only the first of the month.

May you know how much Jesus Loves You! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHave Faith

Many blessings~Carlene

 

 

 

 

 

 

He Comforts Me

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Psalm 94:18-19 New Living Translation (NLT)
18 I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
19 When doubts filled my mind,
your comfort gave me renewed hope and cheer.

 

man kneeling in front of cross

Photo by Pixabay on Pexels.com

 

I am so thankful that Jesus Christ loves me enough to be there each and every time I cry out to Him. It doesn’t matter the hour or day, He is always with me. Guiding me by His Holy Spirit, teaching me to trust in the process of things in life and always holding me up when I don’t feel I can go on.

Our grandson, Tyson has come so far since he received his Autism Spectrum Disorder diagnosis in 2016 but he has also faced many other challenges along the way and we, too, have had to endure many sleepless nights and heartache over the needs he has. As most of you know, when he was diagnosed, he was nonverbal. He said two words. Ma and Da, not mama or dada, just those two single syllable words. Everything else was a guessing game and very frustrating for all of us. But with intense Speech Therapy and many hours poured out of learning sign language and initiating communication with pictures, he is on his way to becoming a great speaker some day.  We rarely use pictures to communicate his wants and needs.  Pictures are still used as visual supports to help him transition and prepare for what’s to come in our daily life. He still uses the sign for “more” when he wants something, along with asking for more.  I am not sure if he thinks using the sign language along with speaking will actually get him more snacks, etc., but his memory is amazing! If he has seen something once, maybe twice, then he can recall it. We are even beginning to realize that he can read some things. Now we just have to figure out how to teach him to read in a way he understands. We will get there, I have no doubt.

I was always under the assumption, like most people, I suspect that if a person has a diagnosis of ADHD (attention deficit hyperactivity disorder) that meant they were too hyper to be focused on any one thing for very long. Boy, was I wrong! Although that is a part of the disorder, there is so much more to it than the term can express. Many people with ADHD have not only a hard time focusing, but can be overwhelmed rather quickly if they are given too much information at once. Their brains are wired differently than someone who doesn’t have ADHD and it takes them longer to process the information. Breaking tasks into steps is one way to help. There’s a great article in ADDitude Magazine that explains how a person’s brain with ADHD functions. Tyson has a combined type of ADHD: inattentive, hyperactive and impulsive.  He loses his focus very quickly unless it is something he loves. Right now he is very obsessive about any type of vacuum cleaner and ceiling fans.  He can tell you almost anything about them. How to put them together or install one, along with how each part works, but his attention span for many other things only last for a few seconds to minutes.  He is working with an ABA therapist to work on his focus issues and well as learning new ways to regulate his emotions in a safe and positive manner. And yes, he also takes ADHD medication to help him level out his emotions so he isn’t as aggressive and having a meltdown that lasts for 5 hours or more.  There wasn’t much doubt, ADHD played a role in his behaviors, but until he started school and input could be given from their perspective, we had to wait for that diagnosis to be official.

The language delays have shown improvement as he learns to speak and listen to spoken word. He has delays in areas of receptive and expressive language. I think the most frustrating thing for him is that when he tries to express something to us, we do not always understand what he is trying to say and multiple times of repeating it, he becomes mad and then refuses to talk to us or allow us to explain why we aren’t understanding. He also has a difficult time processing what is said to him. We still need to use short, concise statements. “Pick up toys.” versus “You need to pick up your toys and put them away.”  His beginning and middle sounds there has been quite a bit of improvement and now we start working on ending sounds. That is where I am finding the most difficulty.  I know he doesn’t always want to keep repeating words over and over, and I know he gets frustrated, but I know I can’t give up on him doing it. I know he can, with everything else he has learned and will learn, it takes time.

Within the last week, I have really been praying and trying to understand God’s plan for Tyson. God knows everything that will happen in Tyson’s life and ours, too, but sometime’s I wish there was a guidebook or cheat sheet I could take a peek at to know what to do when the next thing we need to be concerned about crops up.

When he was diagnosed with Epilepsy, I was pretty upset with God. I couldn’t figure out how in the world, was it fair or right for this kindhearted child to have to deal with so much crap. But God reminded me that He is in control and that I have to trust Him. And I am not in control. I think for me, as a caregiver to a special needs child, I want to make life as easy as possible for him. I hate that he has seizures. I hate that we have to force him to take seizure medication every day because it doesn’t smell great and Tyson has said it doesn’t taste good either. I will be glad when he can swallow pills.

And just when I thought I could possibly know all there was to know about Epileptic seizures where he was concerned, in the past week, he has had two that were totally different from anything he has had before. So as I was jotting down notes in his seizure diary, and getting ready to let his medical team know so it could be noted in his chart; I had no idea what kind it was. He has had multiple tonic-clonic seizures in the past. Absence seizures. But these were different. They appeared to be absence but then progressed into another kind.

He was staring and zoned out, much like someone would be when they are “daydreaming”.  That is a typical absence seizure. However, those never last for more than 30  seconds and that’s a long time for those. But then, he dropped what he was holding as his hand went limp and fell backward onto the couch cushion. No convulsions or rigid stiffness as in a tonic-clonic. He wasn’t jerking so I knew it was a myoclonic seizure. And his awareness was different too. He was unresponsive, which is normal for an absence seizure, but when it was over, he went right on doing what he had been and didn’t miss a beat.

I have learned since these last two seizure events that it was most likely a focal seizure (absence) that progressed into a generalized seizure (atonic and tonic). Both of these lasted 2-3 minutes each. There is just so much to remember and learn about Epilepsy and trying to remember each classification is difficult. I had prayed I wouldn’t have to become an expert in this area, but when you have a child with many special medical needs, you realize how quickly your brain can learn new things.  According to my research, there are over 40 types of seizures. Some seizures can be a person fumbling or lip-smacking, acting as if they are drunk, stumbling around.

So, he went almost an entire year without a seizure. I was remarking to his mother how lucky he was to have medication that helps control them and then they happened. So in about five hours, we will be making a trip to our local children’s hospital for labs to be drawn so we can make sure his medication level in his system is where it needs to be. And if it is, and he still continues to have the seizure activity, we will have to meet with his medical team and determine if he needs another medication added to his already large group of meds daily, or if he needs to switch to something more effective. And there is no guarantee that will help or not.

He knows he takes medication for seizures, but he doesn’t really know what seizures are or what they might look like. When he’s ready, then we will show him videos but until then, we continue to pray that he will be lucky enough to outgrow them one day OR that they will find a cure.

He is resilient though. He still loves life. He doesn’t let anything get him down and if he can be positive with all he has to deal with and cope with, then so can I.

I know God will use everything Tyson goes through for His glory. And in reality, every struggle or trial we have in our lives, God can use for good. We may not understand why things happen the way they do and we may not always be happy about the circumstances we find ourselves in or our loved ones find themselves in, but we can be assured and know God will never leave us or abandon us. He created us. He loves us. He wants only the very best for us and with all things, His timing is always perfect.

Whatever you may be facing today, may I encourage you to turn to the One who gives you life and pray to him, asking for wisdom, discernment, and clarity to get through it all. He is always ready and waiting.

Jesus loves you! He can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

 

 

 

 

 

Reflections in My Mind

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Psalm 119:169-170 New Living Translation (NLT)
169 O Lord, listen to my cry;
give me the discerning mind you promised.
170 Listen to my prayer;
rescue me as you promised.

I miss working daily.  I don’t miss rising super early while it’s still dark outside, with little traffic to speak of, but I do miss the daily conversations with co-workers and vendors/customers.  I don’t miss working on holidays or funky schedules because of the type of job it was, but being an extrovert and conversationalist, it’s difficult day in and day out to not talk to people, other than your family members you live with. Don’t get me wrong, I love my family.

I don’t miss being in such severe pain that I would cry every day as I limped to my vehicle for the 10-minute ride home.  I often wished my drive home was longer because this was the only time I had to myself throughout my day. Being a people person; never meet a stranger type gal, I still need quiet time for me.  And since retiring with a disability, the only time I get for myself is when I sleep. (I did have one day over the weekend where my husband took the two children for the day to visit other family members and it was very appreciated!)

There is always someone with me. I am very thankful to have my husband with me, as we continue to grow older and blessed that I get to spend all day with two of our grandchildren and our daughter, but there are moments when you just need your own space. And if you are a parent, then you know even going to the bathroom usually means there will be someone following you in to talk with you or “hang” out.  I never fully understood until I had children of my own, what parents meant when they said they couldn’t even hide out in the bathroom. Our children are grown, but inquisitive toddlers don’t understand their presence is not needed every time.

I used to read three to four books at a time, and now I am lucky to get through one chapter of a book in an entire day!  I miss reading like that.  Just immersing myself in a story, envisioning the characters and the scenes, gripping the book in my hands with a feeling of ‘I know I should go to bed but I can’t put it down just yet’ or ‘I’ve got to see how this ends’ mentality. Now I just pray to make it through one chapter and hope that by the time I can pick the book up again, I won’t forget what I read and have to start it over.  It’s so frustrating how my brain has changed since I retired due to my fibromyalgia and other health conditions.

I look back at where I was in 2016, leaving a job of 16 years, with no plans except trusting God for everything, to where I am now and a whole lot has happened in the short amount of time, but Jesus has carried me through every single situation. He has been my strength, my provider in more ways than one, and continues to be available for me every single second of every day.

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Photo by Lynnelle Richardson on Pexels.com

*I was approved for my Social Security Disability within a few months of applying, for the first time on my own. No denial or a need to get an attorney to help me fight, which is all I heard from people when I said I was going to apply.

*Available to help our daughter with her son, after he was diagnosed with Autism Spectrum Disorder as he needed substantial support and constant supervision. Read everything I could get my hands on to learn about ASD and did my own type of “homeschool” to help him(this would not have been possible if I had been working full time).

*I wrote and self-published a book about the Jesus and His mercy and grace.

*Met others that live with the same type of health conditions I have so we can offer one another support and encouragement.

*My faith increased as I saw God’s hand in my life and the lives of those I love.

*Drew closer to the Lord through trials and tribulations of going from having an income to no income to a fixed income and thankful for pantries and organizations that help when you need it.

I’ve been blessed to witness so much in our grandson Tyson since his diagnosis in 2016. He was nonverbal. Now he is speaking. He made no eye contact or engaged with others, now he is doing better. He lived in his own world, and now he lets us in.  Every victory, big or small, is celebrated. And when I look back at to where he was at 26 months to now, I am so thankful God has placed the right therapists, doctors and medical support staff in our path.

I’ve sat with my husband at doctor appointments for myself and him, as we navigate the many health issues we have and I am thankful I was able to do that for him and not wonder what is going on, as his memory isn’t what it used to be.

I have seen our older grandchildren blossom into thinkers and doers. Always being kind and helpful to others. Moments that I would have missed had I not retired. But early retirement comes with a price. When it’s not planned and you have no life savings or retirement funds to look forward to, there is always the concern that what will happen if there is an emergency or a crisis.  Even in those moments, the Lord has seen us through.

I miss having a steady income stream. Or should I say I miss my hourly rate of pay? If I were to figure out my monthly disability income as an hourly wage, I would be making a lot less than the federal minimum wage.  And that 2% cost of living increase the federal government was so kind as to give people that receive social security doesn’t even begin to cover anything. But an increase is better than a decrease I guess. Receiving benefits once a month versus weekly or bi-weekly truly teaches the value of money and what you spend your money on.  Going to the movies, out to eat, bowling, museums, etc. that is a rarity. Trying to explain to children why they can’t have a $3 happy meal is difficult some days, but it is not the end of the world. Life goes on.

The one thing I despise is having a chronic condition and going to urgent care or emergency room because the pain you have is something out of the normal for you and if they know you have an autoimmune disorder, many tests/scans that might be done for a person without a chronic invisible illness, presenting with the same complaints and symptoms, isn’t even considered or done because of the chronic condition you have.  Why does the public or medical personnel think that every person with chronic pain related condition is seeking out drugs or medications for pain relief??? Sometime’s all you want is an answer to why you are feeling so poorly and wanting help.  You know it’s not the same kind of pain you live with day in and day out, but once they hear the F word (fibromyalgia) it’s chalked up to that and nothing is done. I know why, so you don’t need to tell me, it really was a rhetorical question.  Because there are many people that have cried wolf one too many times and makes it bad for the rest of us that truly do need help.  I don’t take any kind of pain medication that I can’t purchase over the counter from the pharmacy.  I can’t due to another health condition.

Prayer and focusing on Jesus and His Word carries me every day. I could complain all day long, but it won’t help me feel better.  It will actually suck the life out of me. Focusing on how blessed I am and how thankful and grateful I am makes me feel better, even on pain filled fatigued days.

Yesterday was a pain filled day. It didn’t start out that way, but as the day progressed, the severe muscle spasms that come when they feel like it and leave the same way, almost debilitated me yesterday.  As I was trying to reach something just out of my reach, they started in my abdomen, worked their way under my ribs on both sides and into my back and shoulders.  When these hit, there isn’t one thing that makes them better.  Lots of little things I try: stand up, bend over and hang in that position for a while, press firmly on my sides, try massage, ice packs, heating pads, a lot of breathing in and out slowly much like a woman having contractions in labor. I wish I could just walk them out similar to leg and foot cramps, but I am at the mercy of my body. And as they relaxed to a dull ache, and not a stabbing pain, I was finally able to lay down and rest. I hate when I have days like that. I’ve been dealing with these stupid spasms for over ten years. No one knows why they happen, or how to prevent them. I’m not low on magnesium or potassium, it’s not my heart, it’s just one minor inconvenience of having fibromyalgia.

I do take a supplement that helps with overall pain, but it’s not a cure-all for all my pain.  How I wish it was. But I am very thankful to have it as a tool that I use daily.

I am in the process of listening to the Lord and seeking guidance on writing another book. Not sure when it will happen, if it will happen but I feel a tugging on my heart to do it. I know God gives us the desires of our hearts and the gumption to achieve them.  I am still waiting to discern the topic for the book. My thoughts are jumbled and my spirit believes it has to do with His might and our worth in Him, but forming the words into sentences that make sense and will help others know Him more intimately, are still randomly bouncing around in my mind.

Our homelife recently changed, as our granddaughter Emmalin made her presence known. We are adjusting to having a baby in the house again and loving the fact we can see her daily, but how easy we forget the demands of a new babe and they have no sleep routine yet. They are more powerful than they realize. It’s all good.

As for reading, I am currently reading a book called The Autism Answer by Dr. Frank Lawlis. I will let you know what I think if I finish it.The Autism Answer by Dr Frank Lawlis

It’s only 122 pages long and years ago, I could have read that in a few hours. I have had it since last Friday and only have made it to page 11! So, maybe if the stars align, and Tyson is having a good day, and health problems don’t arise, maybe I will finish it before summer time.

I know this post has been all over the place, but that’s where my mind is today. My husband is having some health issues without any kind of answers and I will not say I am worried because worry gets you nowhere.  I am concerned that no answers of any kind seem to be attainable right now, but I will continue to press into the Lord and seek his guidance and wisdom.

May you know how much Jesus Loves You~right now and always. Jesus can turn any mess into a message and any test into a testimony. #HopeAlwaysHaveFaith

Blessings ~ Carlene

 

 

 

 

 

 

 

 

 

JOY

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1 Thessalonians 5:15-19 New International Version (NIV)
15 Make sure that nobody pays back wrong for wrong, but always strive to do what is good for each other and for everyone else.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

19 Do not quench the Spirit.

Joy comes from the Lord. Joy does not come or happen because of our circumstances and thank the Heavens for that.  If we depended on life’s circumstances to provide Joy in our lives, most times we would be sadly disappointed.

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Joy is a fruit of the Holy Spirit.  It is not something you can turn on and off at will. It is a gift from the Holy Spirit.  I hear so many people say that they can’t find their joy or have no idea what joy looks like because their lives are so hard or difficult.  Joy has nothing to do with any of that.

It took me many years of prayerful time with the Lord and leaning on more mature Christians who know the Word and could counsel me in Godly ways to understand Joy isn’t something that happens.  It is just a part of who we are. If you are a believer in Jesus and profess to be a Christian and live, walk, eat and breathe a Christ-like existence, you have Joy. Period.  There will be times you can’t seem to grasp it. Times you don’t feel very joyful at all, but it’s there.

If I depended on life to grant me the gift of joy, I would be hard pressed to find it most days.  Happiness comes and goes but the Joy of the Lord is forever.

The past few weeks have been blessings and blessings with challenges or opportunities, I guess if I am being my optimistic, positive self. Our fifth grandchild, our second granddaughter blessed our lives. I call her my little peanut.  She is so tiny and precious. Just weighing a little over 7 pounds. She came into this world, with a good set of lungs and even a little bit of stubbornness. She loves when its time to eat; a little bit of a guzzler, can’t seem to get enough, but refuses to burp, which has been quite a challenge. But she doesn’t cry unless she’s hungry or needs to be changed. She has bright eyes and loves to scoot around on her back when lying in her bassinet. She almost reminds me of a “game-spinner”.  It doesn’t matter what position you lay her on her back, as she gets settled, she usually ends up facing the other way and she is just two weeks old today!

Being able to be in the delivery room, while our daughter gave birth, was so joyous of an occasion. The first time around with her son, Tyson, my other little buddy, that you have read about, I was banished out of her sight. Because I am a crier. I can cry at the drop of a hat. It can be something as simple as a cute commercial on television or something that isn’t even real.  With Tyson, for me, seeing my first-born child giving birth, I was so overcome with emotions, tears were streaming down my face and she couldn’t handle seeing those tears and I was given strict instructions, “Mom, if you are going to cry, you’re going have to back up, I don’t want to see you crying!” So, even though I was in the room to witness his birth, I wasn’t right by her side.

With our tiny Emmalin, I sat and held her hand, bound and determined, that no matter what, I would not let the tears spill out. And I held them at bay.  This time it was watching a miracle.  The miracle of watching our daughter give birth naturally (all the while, observing the epidural not work, pain meds do nothing to alleviate her pain of the harrowing back labor she was experiencing) with pure love, sheer grit, and determination to bring her daughter into view, was one of the most beautiful sights, this grandma’s eyes have ever seen! Praying and thanking Jesus for allowing me to watch and helping me to conceal my tears of joy. And realizing what a strong woman our daughter is. Even though she usually disagrees on being strong, this time she was strong and earned the respect of her parents, her older sisters, and her brother.

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Big brother holding baby sister/Ty & Emma

As our family is growing, and we are learning new routines, Tyson is doing is best to be a good big brother. There are many challenges that go along with bringing a baby home to a home with a toddler that has had the rule of the territory for four and a half years. And while he proclaims to everyone and anyone, that’s “his baby”, he doesn’t understand why she can’t get on the floor and play with him or why he isn’t allowed to carry her around like a rag doll or why it’s not a good idea to poke her with his fingers in her face.

As we are ever vigilant, hyper-vigilance has become our new norm when he is awake as we have no idea what he may or may not do next. The jealousy of a new baby isn’t as noticeable as I thought it might be, because his mom and my husband and I are making special times for him too and there are many days you will find the baby in her arms, while she is sitting on the couch and him right beside them as close as he can get.  As with everything new for him, it will take some time for him to realize how “babies” actually work. He doesn’t comprehend why she can’t share goldfish crackers with him, but I think it’s great that he wants to share with her, just the same.

I am doing my best to hope and pray that the similarities I notice with Emmalin and Tyson are because they are siblings and not for any other reason, but it has always been on the forefront of my mind if she too will have some or all of the special needs he has and I continually pray that whatever needs she has, God, will continue to equip us to care for them as they need.

As an update for Tyson, he is thriving at his ABA (applied behavior analysis) therapy sessions. He loves going and right now he is attending 3 afternoons a week after he gets home from school.  On days when the weather closes the center, he is sad and doesn’t understand why he can’t go. As we continue to add more structure to his day, his aggressive behaviors and sensory meltdowns are not as bad. Instead of 6 hours a day dealing with them, some days it may only be a couple of hours to only 30 minutes. What a lifesaver this has been for all of us; as well as changing to ADHD medications that are working better for him than the ones he was previously taking.  We have also found, that playing with dominoes that his great-grandmother gifted him last year, can usually keep him focused and entertained for a while, without bouts of throwing or screaming.

Galatians 5:22 New Living Translation (NLT)
22 But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness,

May you know how much Jesus Loves you~right now and always! He can turn any mess into a message and any test into a testimony.  #HopeAlwaysHaveFaith

Blessings until next time~Carlene