Category Archives: Health Conditions

Tender Mercies

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

 

 

 

 

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Acceptance Is Needed

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.

sample pecs

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

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

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.

art artistic black and white blank

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

 

 

 

 

 

 

 

 

 

HIS Peace

Proverbs 3:5 New Living Translation (NLT)
5 Trust in the Lord with all your heart;
do not depend on your own understanding.

I feel like I’ve been gnawing my way through tons of emotions this week to remember to trust in the Lord and realizing His ways I may not always understand, but He is in Control. Of EVERYTHING.

I love Jesus with all my heart. There is absolutely no doubt about that. I know HE is the God of Peace. I know He is Good. I know that many things happen in our lives and lately I have felt all alone, even when surrounded by those that love me.

I guess it’s some type of depression. I haven’t dealt with depression for me very much and so I have tried to banish it from my mind. I’ve lived with others that have depression and have lived with it for many years and I truly don’t know how they manage to make it through every single day, unscathed.

I know that I have always been able to turn to the Lord and He comforts me. He reminds me I am loved and no matter what I am in the midst of it is only temporary.  I cling to that hope. I hold on so tightly that sometime’s the tears don’t stop.  But no one sees the tears because I have learned to hide them. Even if they see tears, there is always an explanation of why. No one suspects anything. But hiding this depression isn’t helping me and it certainly isn’t helping anyone around me.

I am up late, usually alone, soaking in the silence and hanging on because once I go to bed, I don’t want to get up. I want to sleep.  Sleeping is easy because then I don’t have to face all the high stress in the house. High stress of living with a special needs child that creates stress for the rest of us. Stress, none of us, seem to be able to get a grip on. And as much as I don’t like to use the word worry, lots of concern over if our happy little guy will ever be back again. If his appetite will come back. If he will want to eat foods again that he used to love and were good for him. If he will learn how to control the sensory overload and not go on a rampage throwing toys, breaking objects, trying to hurt himself and hurt others. And while I pray about this and I think about it every single second I am awake, life goes on.

My friend Mary went to be with the Lord eight days ago. I grieve for knowing I can’t talk to her anymore, her children don’t have their mom to hug and hold, her husband must go on without her and all the people whose lives she has touched, have this deep sense of loss just as I do. But Mary knew her time was near. She had visions of being with Jesus. No matter how painful her last few days were, cancer could not destroy her spirit. She fought her short battle with so much grace and dignity, I can only hope I can go as peacefully when my time comes.  And I know I will gaze upon her face in the future. I know she is with our Lord and Savior, dancing and singing in Heaven showering Him with Praise and totally pain-free. And that gives me peace.

In 4 weeks, more or less, there will be a new life in our home. I am so excited to meet our newest granddaughter, but I am cautiously optimistic because I am concerned about how her brother will react when she cries. Will, he still gaze upon her as he does every other baby he sees with such awe and wonder? Or will he not understand and act out? Will he be gentle and kind, or will he………?

New therapy and new medications have started and I am believing this will be the missing pieces along with continued love and support to help our little guy gain some understanding of what works for self-regulation. For ways to cope when the noise becomes too much for his little body to handle all by itself. Sensory tools are being used in the home to help too. A new sensory swing that he now requests. A new “favorite game” he calls it. He lays on the couch and I lean back across him, applying pressure, for only a few seconds, several times in a row. And then he seems to feel better. And in those moments, we have peace.

blue sky clear sky cold fog

Photo by Bri Schneiter on Pexels.com

Even as I write this, I feel a peace settling in around my heart. A peace that only comes from God because, without Him, I would be a wreck of a human being.  I want this peace to become so much that nothing shakes me to the core. I used to have that peace and slowly, I let the distractions in my life, chip it away bit by bit. This last week has been proof of that. Thoughts that come to mind and I send them fleeing because they are not thoughts from my Lord. Words unspoken, because I realize we all deal with our emotions so differently and words hurt. Even well-meaning words can have an effect that nothing good can come from.

I consciously choose to love through it all. And I also consciously know without Jesus, His grace, His forgiveness, His love, and His mercy, I would be a jumbled up ball of emotions, shaking in a corner and wishing I could go home too.

I don’t like being depressed. Or even sad. I know the enemy would like nothing more for me to succumb to it. But the one thing satan seems to forget is I am a God girl and there is nothing he can do that will ever change my mind, my heart or my soul. I am a Princess of the King of Kings and I know my God is bigger than anything I will ever face.

Lord Jesus,

Thank you for loving me unconditionally, no matter what type of emotions or circumstances I find myself in, You are always there. You hold me up when I feel like I am falling. You strengthen me when my strength is gone. You give me peace where I can’t find any. You battle for me in the realms where I cannot go and Your love endures forever. Your peace no one can snatch from me. I hang onto the hope Father that you have plans for my life, plans to prosper me and not harm me, plans to give me hope and a future. You give me people to counsel me and share their testimonies of what a faithful father you are. You will never abandon me, or leave me. I love you, Lord! Father God, I ask that you forgive my unbelief when I doubt that you are working in my life. When I can’t see past the hurt and sorrow, when I weep, I know you are still working in and through me and on my behalf. In Your Mighty and Powerful name, Jesus. Amen

Jesus Loves You~right now and always. He can turn any mess you are in, into a message and any test you go through into a testimony! #HopeAlwaysHaveFaith

Blessings to all ~ Carlene

Living in a Battle Zone

Genesis 1:27 New American Standard Bible (NASB)

27 God created man in His own image, in the image of God He created him; male and female He created them.

 

Constantly aware. Ever vigilant. Exits secured. Dodging bullets (nerf bullets, toy trucks, sippy cups, shoes, metal toy cars, anything that can be used to target a person or glass screen, window or door). No bunker to run to for safety. No place to retreat to escape the torment. Physically or emotionally. The only place to retreat is Jesus, crying out for shelter and rest as tears tumble down your cheeks. Mentally trying to figure out your next battle plan, strategy to calm the attacks. Weeping because you are exhausted of this every single day.  Thankful that 28 days ago, there was a truce of sorts. No battles, no lashing out, no rage at all. A day of peace with quiet, but sad because that was a day he wasn’t feeling good and just wanted to be held and cuddled. Wouldn’t let you let go, because he feels most secure when he’s close and held tight.

Sounds and noises we cannot hear, whether we have tuned them out because we have the ability to filter out noise or because we aren’t gifted to hear such quiet noises he can hear. The moment the gas furnace comes on before we can hear it before we can feel the hot air coming through the floor vents, he rushes over and is fearful, asking “what’s that noise?” but I hear nothing out of the norm. A few seconds later, I hear it chug to life and feel the heat. I assure him it’s nothing to be afraid of, it’s just the furnace (in the basement far from where he hears it).

Investigator of all. The coffee pot full of HOT coffee. The toolbox with sharp tools, that can’t be locked. The dryer that is big enough to climb inside. The vacuum that might need a new belt or part. The stovetop where he can cook his play food.  The step stool he tries to stand on to reach something that has been put up high, out of his reach. The tablet or smartphone that he probably knows how to operate better than us. There is never a time we can let him out of our line of vision. Because no matter how many times we say, STOP or DANGER he will still reach for them or climb on it.

Constantly moving, sits for YouTube videos and when he is in his car seat with a locked chest clip and buckle guard, so he can’t escape while the vehicle is moving or in his specialty stroller with a built-in torso vest and extra fasteners. Activities that once held his attention painting, playdough, putting puzzles together, coloring, matching sequences, matching objects in a memory game, no longer appeal to him.

Body slams into people and walls, gates and furniture. Climbing and jumping off of anything he can. Sliding down the stairs on his stomach face or feet first. The faster and harder the surface the better. Hitting and punching, pulling your hair, grabbing your eyeglasses off your face, biting, throwing his body on the floor, banging his head. All the while, trying to stop him from doing things to hurt himself or you. Holding him tight, hugging him, playing music, counting out loud, letting him swing, offering his trampoline, suggesting he spins himself around or jumps up and down. Let’s make a tent so you can hide in the darkness.

 

Houdini wanna-be. Made it past adult the other day, out the back door wearing a pull-up only. No clothing/coat or shoes. Hates clothing. It was 34 degrees. He didn’t get far this time, I was in the driveway. Doors are secured with locks at the top, every single door in the home, but where there’s a will, he always seems to find a way.

Sleep is either totally out or restless. There is no in between. If he goes to sleep too early in the evening (9pm), he’s full-on awake by 1 a.m. If he waits to go to sleep later in the evening, he’s too tired to function in the morning hours. Night terrors since birth. Some doctors say he will outgrow them. Cannot sleep alone due to health conditions. He co-sleeps with his mommy or me, so at least every other night, we can get some rest. Sleep only comes with the help of prescribed medication, otherwise sleep is like that of a newborn baby, constantly up and down all night.

Psalm 139:13-14 New Living Translation (NLT)
13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.

Many prayers prayed throughout the day. Not to make him better, but to help him. Help him figure out why he acts the way he does, how to control his moods and impulses. Show us how to love him through it all in a calm manner. Help us figure out what sets off the explosions, the sensory overloads, the meltdowns, the anger. Help us know when he is in pain, help us to soothe the noise. Help us to respond and not react. Reactions are normally based on emotions and emotions ride very high when you feel like from the minute you wake up until you lay your head down for the night you live in a battle zone. Responding in love and compassion and words that lift up are always much better, even if it takes him a while to process it.

His brain is wired differently than ours. He sees the world differently. That’s okay. We need to learn how to teach in a way that he learns. In a way that he hears. Our expectations can’t be set so high that we set him up to fail before we even start. And we also can’t see our parenting skills as a failure. We know we are doing the best we can. He has one parent and two grandparents that care for him daily. That battle with him daily. That on occasion, we laugh and giggle with him daily.

We miss our happy-go-lucky boy. We miss the one that used to love to build block towers, play with toy cars on his toy race track, blow bubbles. We miss sitting and watching Paw Patrol and Blaze and the Stuart Little Movies over and over and over again.

We miss the child that used to love all types of food, raw vegetables, cooked ones, all types of meats, dairy products, foods that fueled our bodies. Now his main staples are chicken nuggets, chips, cookies, and juice. Occasionally a yogurt sneaks in. And cold cereal.  We miss the child that used to drink his liquids the right way and now we must watch him drink and make him swallow it or he will spit it out on himself, you or the floor, table, wherever he can.

We miss the child that didn’t seem angry and upset all the time.  We know he is still in there because we see glimpses of him.

We miss the days when he didn’t have to take medication unless he had a fever or an infection of some sort. Now he takes medications to prevent seizures from happening on a regular basis. Medication to help him fall asleep and stay asleep. Medication to help him focus and not be so aggressive. And I often wonder with all the medication he is taking, the constipation it causes him to have isn’t a source of the battles. We will find out more at the end of February when he goes to see a GI specialist.

When we are in public, we pray he will have a good time. No throwing himself on the floor. No knocking merchandise off the shelves. No meltdowns. But when he sees his developmental doctor, although we don’t want him to have problems, it would be nice if just once they could visualize the outbursts of aggression so they could understand it’s not just him having a bad day.  All of us have bad days from time to time.  Days we want to stay in bed, pull the covers over our heads and skip participating in life that day.

BUT, even with all of this, we are very grateful for how far he has come. Two 1/2 years ago there were no words. No way for him to communicate with us at all. And during this time he has had to endure extensive speech therapy every week. In-home therapies.

Soon, he will be starting ABA services. In hopes that they can reach him and help him and help us to live a little bit more of a peaceful existence.

We will continue to fight the battles and strategize the best way to live our lives with this amazing little boy. He is truly a blessing in our lives. We would never want to imagine him not with us, no matter how hard it can be.

Having a child with special needs requires a lot of perseverance and a whole lot of patience and never-ending unconditional love. And a grandma like me, that isn’t afraid to pray over him daily that Jesus will help him to understand the world around him and that the world will understand and love him just as much as we do.

In four days, his back to school will resume. The winter break has been brutal. His routines thrown out the window. And it will take him a couple of weeks to get back into that routine. Most families cherish winter and spring breaks, a time to refresh and rejuvenate and all I have been praying for is when the day comes to put him back on the bus and sit down with my feet up for a couple of hours and just rest in the peace and quiet.

animal army battle canine

Photo by Pixabay on Pexels.com

So, the next time you hear someone say that being a special needs parent is much the same as being a combat soldier, their not downplaying the role of a soldier in combat, but relating the stress levels are just as high. If you know of a family that has special needs individuals, ask if you can help. If you are a special needs family, don’t be afraid to ask for help and support.

Love one another, through the good, the bad and the ugly. Show grace when you feel like you’ve failed. You are doing the best you can. Seek the Lord and His guidance. PUSH-pray until something happens.

Mark 9:22-24 New Living Translation (NLT)
22 The spirit often throws him into the fire or into the water, trying to kill him. Have mercy on us and help us, if you can.”23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”

 

Tomorrow is a new day. A clean slate. I cling to Hope.

Jesus loves you more than you will ever know! Jesus can turn any mess into a message and any test into a testimony. #HopeAlways#HaveFaith

Blessings~Carlene

 

Faith Can Move Mountains

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

John 16:33 NLT

person on a bridge near a lake

Photo by Simon Migaj on Pexels.com

 

I read the above verse, and I am reminded that I have the  Holy Spirit with me. He dwells within me and I know that without Him, I wouldn’t have made it this far.  Each approaching new year, there are always goals/visions/hopes/dreams we each have. Some people make New Year’s Resolutions, others choose to make lifestyle changes, dietary changes, relationship changes, and some choose to just look at it as another day and keep putting one foot in front of the other.

I look back over the past 12 months and I have seen a lot of hard behaviors to cope with, on a daily basis. Keeping the peace of Jesus in my heart and alive in my life has been nothing short of a miracle; many days I wept inwardly, wondering where that Peace was. How had I went from being able to handle almost anything that required coping skills, to being in constant prayer and conversation with my Maker because I felt I was losing my grasp on His Peace. What had gone so awry that I felt lost and alone, in a room full of people? And then I realized that I was relying too much on my own strength and not relying on His.

In our home, we have many medical diagnoses. Four of us live here, soon to be five give or take 6-7 weeks if our soon to be (second) granddaughter waits until her due date to make her arrival.  I personally deal with fibromyalgia, chronic obstructive pulmonary disease, sleep apnea, degenerative disc disease in my lumbar spine with facetous arthritis, osteoarthritis in my hip/knee joints, carpal tunnel syndrome, thyroid disorder, high blood pressure. Plus I live with people who suffer from depression/anxiety/heart/stroke/language disorders, autism, adhd, sensory processing disorder, epilepsy, and mental illness.

Keeping track of medical appointments, therapy schedules, labs that need to be completed in a timely manner and pregnancy-related appointments, just about makes my head spin; dealing with IEP’s and developmental delays….the list goes on.  If only one of us is having a rough day, we can manage pretty good; if all of us are having an off day, it’s a true struggle.

It’s remembering that I was not created to do things in my own strength.  I have heard, as I am sure you have too, that God will not give you any more than you can handle and there have been days I have questioned that statement. But the Truth is, God doesn’t expect us to handle anything on our own, but to turn to Him and rely on Him.

And while in the midst of my cries to the Father, seeking guidance on how to proceed with this life He allows me to live, waiting on His answer is always the hardest part for me. In the past two years, since retiring early due to disability, I thought for sure I knew the path He would take me, but it has been such an amazing and frustrating journey, that He only gives me glimpses of what He has called me to do. Just enough to take that next step of faith. I can only imagine that if I were to see the entire picture of the plan He has for my life, it would be so all-consuming, overwhelming that I might crumble at the thought of it.

In His infinite wisdom, He knows what is best for each of us. He provides for every need. It may not be the provision we envisioned, or even hoped for, but He always gives us just the right words, at just the right moment. And yes, He answers prayers. Some days it’s “Yes, my child.” “No, not now.” or “Wait, it’s not time for you to know yet.” In His perfect timing. I have learned not to pray for patience because patience always requires testing of some kind; so I pray for peace to get through those times.

Every single solitary thing we go through in life refines us into the people God created us to be. Some are very exciting and mind-blowing, others are so sad and sorrowful, we want to skip that process, but every single second of our lives, He is working in us and for us. And the grass always seems greener on the other side of the fence.

I love my family more than my own life. I don’t like when we are nipping at one another, or being grumpier than normal, because it tears me up inside. I guess though, that since we are human, that is bound to happen from time to time.

I’ve been in my own world for weeks now. A close dear friend is fighting the battle of her life with a cancer diagnosis and no definitive results yet on exactly the type of or the best type of treatment for her. And when I think of all she has been through, what her family is going through daily, I give thanks because my problems don’t seem so out of control as they feel. The strength and courage that she has shown, in living out her faith and trusting in the Lord brings joy to my heart and encourages me to look for every single blessing I have or blessings I have overlooked.

1 Thessalonians 5:16-18 New Living Translation (NLT)
16 Always be joyful. 17 Never stop praying. 18 Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

Whatever mountain you are facing in your lives today, please know there is a Savior that would love to hear from you. He is always available. He is always listening.

Jesus can turn any mess into a message of hope and any test into a testimony.

May you know how much Jesus Loves You~right here-right now!

#HopeAlwaysHaveFaith

Blessings until next time~Carlene