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

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Raging Storm

lightning and gray clouds
Photo by Andre Furtado on Pexels.com

I love our grandson Tyson. I will do anything for him. Today, I did a whole lot more praying over him and crying out to my Lord, Jesus Christ seeking guidance and peace.

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

I am worn out. We all are. One minute the day is going well and the next we are trying to figure out what sets him off into a crying, screaming, angry little guy. These meltdowns use to be sporadic, now they’re daily, off and on all day until he falls off into dreamland. Whatever is triggering these meltdowns is also affecting his speech therapy at school and in the outpatient setting. Maybe he’s tired of going all the time and just needs a break; we really have no idea.

The few times I’ve seen him focus on anything here at home lasts only for 5-10 minutes. He has combined type ADHD. Not only is he very hyperactive, he also struggles with focusing on tasks and is very impulsive. His Developmental Pediatrician says it could be attributed to being autistic while also dealing with adhd and seeking sensory input or wanting to avoid sensory overload. While we are trying medication to help in those areas, we are also waiting to start ABA services.

I wonder when these raging times happen if he’s in pain we don’t know about or he believes we know why and wonders why we aren’t helping him.

We have had one day this month where we saw a glimpse of our happy loving child. In our eyes nothing was different than any other day, but for him it was. He laughed and played and not one angry outburst or meltdown. I actually marked that on my calendar; as a reminder he did have a good day. Something to hold onto. Hope if you will.

My heart breaks for him. To live a life where he can’t express the noise within except by lashing out. He kicks, body slams into walls and doors, hits, bites, pulls our hair, throws toys, cups, plates full of food. I fear he is regressing in some way and I don’t know how to stop it.

Being 4, he is very inquisitive and like most children, special needs or not, he still investigates tools and their uses, tries to help fix things he thinks needs fixing or breaking something so he can fix it. And in his mind if something breaks, we can just go to the store and buy another.

Up until this behavior became an everyday thing, I would hear from other parents of the struggles they were going through and thank God we weren’t. Now I understand the sheer exhaustion of it all.

His baby sister will be arriving in a couple of months and as much as I don’t like to worry, because it only causes more unnecessary stress, I wonder what our life will be like then.

I know God is in control. I know He has great plans for Tyson. My prayer is that we will figure out how to help him in regulating his moods so we can live in our home without tears daily. For all of us.

As I sit here and gaze upon this sleeping child, there is a sense of peace that I haven’t seen across his face for a very long time.

I don’t know what our future holds, but I know The One who holds our future.

Father God, Help us help him. Help us be the light in the darkness of these storms. Strengthen us and pour out your peace upon us all. In Jesus Mighty name. Amen

May you know how much Jesus Loves You…right here…right now.

Jesus can turn any mess in our lives into a message and any test into a testimony. #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

 

 

 

 

If You Could Do Anything, What would it Be?

The other night in a women’s Bible Study group, the question was posed ” If you could do anything you wanted, financially there was no limit and God had paved the way and gone before you, what would you do??

Serve only the Lord your God and fear him alone. Obey his commands, listen to his voice, and cling to him.- Deuteronomy 13:4 NLT

There were a lot of great answers and I selfishly said, I would want to go away and take a break! And at that moment, I meant it.

But I have been giving that question a lot of thought since that night because we all have hopes and dreams, things that we think are way too big or too impossible and I realize that with God, NOTHING is impossible.

27 And Jesus, looking upon them, said, “With men it is impossible, but not with God; for with God all things are possible.” – Mark 10:27 21st Century King James Version (KJ21)

I believe that sometime’s we get so caught up in the day to day busyness of our lives, no matter what that busyness looks like and we store away our hopes and dreams for ‘when the time is right’ or ‘when I have enough money’ or ‘when our kids are grown’ or ‘once I get that promotion’ and I know that is not how God intended for us to live.  Always thinking that we have to wait until everything is perfect before we try something new, fulfill a lifelong dream, reach for an unreachable desire in our hearts.

I love ministering to others by sharing my story, here, and in person of how my life has been touched by Jesus Christ. I love encouraging others and sharing what it is like to walk by faith and not by sight. My heart is full when friends ask me to pray for them or a situation or share the Word with them.

Follow Your Heart

God will use anyone how He chooses.  The fact is we have to be willing and we have to be obedient to His call. Many people hear from the Lord in a number of ways, and those ways are just as different as there are people to hear Him. I feel a nudge in my spirit to share a message or word He gives. And sometime’s I understand what I am to do and I don’t always obey because fear sets in.  Fear is a tool of the enemy.  The devil will use any tool in his power to stop me in my tracks. Doubt may creep in and I worry more about how I will look, and what people will think, more than caring about The One that nudges me to go and do His work. Sometimes it doesn’t have to make any sense to me.  But I still need to do it.  Walking in obedience to the Lord should be the easiest thing for any of us to do, but many times the chaos of our lives shuts out His voice.  Until we think we need Him and then we wonder why we can’t hear Him. He is always with us and always waiting to connect with us through every part of our lives and always listening.

I still don’t have a solid answer for what would I do if money was no object and God had blessed my vision for what my lifelong dream would be, so I will be still in the waiting and seek his guidance. I do have thoughts, but nothing concrete. I can say, without a doubt it would be geared toward people that have special needs due to a medical/disability diagnosis, but exactly what they type of ministry would it be, I don’t have all the details yet, just a burning fire within me to help these groups of people and it really isn’t any wonder since I love and care for someone that is very special to me and has very special needs.

I would like to encourage you to pursue your dreams. Find something you love and go do it! Because God will give you all the tools you need to fulfill your wildest and crazy dreams; He places those desires in your heart.  It will take grit, determination, and perseverance and there may be times you think you got it all wrong, but this is where your faith comes in.  Faith is believing even when you can’t see!

I do know from my own point of view, I’ve had a tugging at my heart to do something for Special Needs Individuals, that isn’t out there yet-I just have no idea what it is at the moment. And more than just the little guy in our lives that requires so much.

I learned a long time ago, that if you are doing what you love, you will excel at it; if you are working just to earn a paycheck and you hate it; it’s not where you are supposed to land forever.  It may just be a stopping point along your path, to help you grow in an area that needs growth.  God doesn’t have us anywhere to waste our time.  There is always a purpose. And when the time is right, God will have you move and go.  Don’t fear the going. Trust in your Creator.  He knows everything about you.  Everything.

Ministry-serving others can happen anywhere. In our homes, the grocery store, a foreign land, in our day to day with others. We are called to spread the Good News of Jesus Christ and His story.

May you know how much Jesus Loves You ~ right where you are ~ in every moment of your lives! #HopeAlwaysHaveFaith

Blessings ~ Carlene

He is Lost

Psalm 56:8 New Living Translation (NLT)
8 You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.

 

I’ve shed many tears in the past several months. We all have. And I cry out to Jesus a hundred times a day seeking guidance, wisdom, clarity, and discernment. I cry because the once happy child we love that lives in our home and most definitely in our hearts is missing in action. And the child that can’t tell us what’s wrong, has become angrier by the minute. We don’t know why, but he has. It’s so difficult to watch the decline in his moods and behaviors.

Tyson and Me
A moment of rest for T and Me

The words, “No!”, “That’s not okay!”, “That’s not acceptable.”, “We don’t do that.” fall on deaf ears. The constant repetition of trying to explain to this beautiful boy that it is not okay to hit, kick, scratch, punch, bite and be mean to others  or throw toys, plates, cups or any item he chooses to use as a weapon to hurt someone or break windows, electronic items; it’s not okay and he can’t do that. Trying to explain to him, once you have his attention (looking into each other’s eyes and asking him to stop, let’s calm down, dry his tears) that not only do we not want to be hurt, but we don’t want him to get hurt either is an everyday task.

He has always been hyper, ever since he started walking at ten months. He went from scooting to pulling himself up to standing and walking. He totally skipped out on crawling.  Even now, if he is playing on the floor, he rolls or scoots or somersaults his way through the room, unless he’s walking on his tiptoes or running at breakneck speed.  He has one speed and it’s all or nothing. And the nothing only happens when he is given medications to help him sleep.  Even when he is beyond exhaustion, sleep does not come without prescribed medications. His brain never shuts down.

Some friends, suggest putting him in timeout. That would be amazing if we could get him to sit still long enough to accomplish that. Today, I put myself in timeout. Sitting on the opposite side of the safety gate on the steps. He was still being supervised, but I needed a good cry. Trying to remain strong all the time, and not knowing when an outburst will occur is heartwrenching. The child that used to love to play with blocks, legos, cars flying down his racetrack, counting and having fun, I don’t know where he is. The child that loved to paint with watercolors, scribble all over the papers and practice using his scissors to cut, he’s lost.  I see him stand in front of me, but he’s not the same. The little boy that I could scoop up in my arms, squeeze him tight and we could count or recite the alphabet and talk to one another, I don’t see him much anymore. I see a child full of anger, aggression and for lack of another way to describe it totally overloaded in his mind all the time. Shutting down the television, turning off video devices, taking toys away and never giving them back, doesn’t seem to faze him. The music that used to lull him to sleep, while being rocked, he cries and doesn’t want the music very often.

The night terrors are not as bad as they used to be, now we deal with daytime terrors. Fully awake, but he can’t tell us what’s wrong. Yes, he has amassed many words, but unless he wants something, answering questions is still yes and no for the most part. He can answer to what his name is, the street he lives on, sometime’s the city and who lives with him.

He has been up, five times since being put to sleep tonight. Whimpering.  “Please hold me.” So I hold him, we sway back and forth. As he falls back asleep, and I think it’s okay to lie him down. Sleep eludes. The minute I laid him down, whimpers, “please hold me maw.” I’ve decided sleep will come for me once he boards the bus to preschool in the morning.

And as  I ruminate about all the changes in the past year for him, I often wonder what happened? Have all the seizures he has had, accompanied by medications known to cause aggressive behaviors and irritability caused this drastic change in my little buddy? Is it the medication he is prescribed for the aggressiveness with the autism? Is it a combination of the medications? But which is worse, having multiple seizures often or living with the behaviors? I have no answers and the specialists don’t seem to know either.

I’m considering everything and planning on going back to Essential Oil use to help relax and calm him down. It worked when he was younger, maybe that is a missing link. I know there are supplements that have been used to help and maybe it’s just possible that is what he is missing.  The developmental pediatrician and his neurologist ask if I can videotape his behavior, but when you are the target of the behavior, grabbing your smartphone and turning on video doesn’t occur to me. Keeping him safe and others safe is my first priority.

It has been recommended to talk to an ABA (Applied Behavior Analysis) therapist and see if that will help. I didn’t want to face that fact. But now, I must. We have to for him. Not knowing if his insurance will help with the cost or if we have to cut more corners than we have to pay for it, one more stress to be strong for. I do know, as tears stream down my face, I will do as much as I possibly can to help him. Loving him is the easy part. Knowing what to do next, and figuring everything out by trial and error is the worst. For him, as well as us.

I sit and wonder daily how difficult it must be that the only way that he can cope is to exhibit the behaviors he has. I wonder if the noise, lack of noise, the lights on and off, what is it that makes turn his world and our’s upside down? Can we reach him? I have faith and belief that God would not have let him come this far, only to lose it all and have to start over again.

Two years ago, there were two words. Very little interaction with others and the playtime was limited to large blocks his tiny hands could hold. His vocabulary has increased. He does engage with others, he can hold your gaze for more than a mere second, but the joy of playing, it’s lost. If he can’t throw a toy, he has no desire to play with it.

A  year ago, he was flourishing in his preschool class. Following a visual schedule, completing tasks, using listening skills and then midway through the year, it all changed. Once he started having his seizures and had to go on medications, he changed or they changed him.

And now, I look for glimpses of that little boy that laughed and giggled, would jump and spin for the pure joy of doing it. I miss him terribly.

My good friend asked if I know what causes all this. I don’t. I know that he lives every day with many Neurological disorders and maybe right now he is doing the best he can. I remind myself that Autism Spectrum Disorder has many challenges. I’m learning that Attention Deficit Hyperactivity Disorder isn’t just about focus, there are many symptoms I never knew were linked to ADHD. His Sensory Processing Disorder seems heightened more than ever and although his tonic-clonic (formerly grand mal) seizures are held at bay by the AED’s (Anti-Epileptic Drugs) he still has absence seizures, and as much as I would love to say he is just daydreaming as suggested by his Neurologist, I am not sure T even knows what daydreaming is or what it means. He’s 4 with a language disorder.

The one and the only area that his language is truly understood is when he talks to you about vacuum cleaners. That is what he fixates on. He has had toy ones, they don’t last very long. He’s rough on them. Two “real” vacuums in our home have succumbed to his mighty strength. He sweeps for a short period and then while pretending, he picks this heavy appliance up as if it was a feather and tosses it a few feet from him. And when he starts to do that, it is put away. He clings to it and has to be pried away from it kicking and screaming, “my sweep”.  Of all the things that he could fixate on, that was the farthest thing from my mind.

I’ve been silent about this. Not wanting to face that we have to find a way to help him. We have to teach him that the way he reacts and acts is not the best way for him. And we have to learn how to do that in his world. Because in our world, we are lost, too.

Lord Jesus, you know the struggles we are facing. Please help T and help us help him. We know how blessed we are to have him with us. We thank you for giving us the gift of this young child and trusting us to guide him. Guide us. Lead us. We want to see him bloom in only ways you know he can. Forgive us when we become frustrated and upset. Remind us that he too is frustrated. Thank you, God. In Your Name Jesus. Amen.

James 1:2-4 New Living Translation (NLT)

2 Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

May you know how much Jesus Loves You~right at this moment~as you are!

#HopeAlwaysHaveFaith

Until next time~blessings, Carlene

 

 

 

I Often Wonder……

Isaiah 44:3 New Living Translation (NLT) 3 For I will pour out water to quench your thirst and to irrigate your parched fields. And I will pour out my Spirit on your descendants, and my blessing on your children.

I often wonder if the answers will ever come. I often wonder what goes on in your mind that keeps certain things just out of your grasp and I often wonder what you see that makes you gaze off in the distance as if something has caught your attention that only you can see.

I wonder why music makes you happy, but instruments playing cause you to cover your ears and bury your head.

I wonder what happens when everything becomes too much and what is the one trigger that sends you into a meltdown. Is it something I can control or remove from your environment or is there any rhyme or reason as to why it happens at all?

I wonder why spinning around and around brings you the most amazing release and joy, but makes me swoon almost to the point of collapse.

I wonder what it was like at the beginning of your life when you couldn’t communicate, did you think we didn’t care? I hope not.

I wonder what it feels like in your head; do you hear everything in the same tone? Do you hear all the noises at once, because I know that processing information for people diagnosed with autism spectrum disorder, many have a difficult time processing information or input you hear and you may need more time than most people to answer questions or respond appropriately.

I wonder what is happening within you when you run and jump and slam toys and objects into the floor; when you throw things without thought as to what can happen. Someone may be hurt or something may become broken, but all you seem to know is you have to throw it, you need to do it to make you feel better.

I wonder what happens when everything becomes too much, and you cry and whimper, because they are no words to describe or explain the overwhelming feelings you have and sometimes no amount of hugs or deep pressure helps you feel better, only crying yourself to sleep helps.

I wonder what happens to you and how your brain is affected when you have a seizure. Will those seizures change who you are? Will they affect your thinking processes? No one seems to have an answer.

I wonder why vacuums and ceiling fans are your obsession. I can’t begin to understand, but I know they are. I have heard this is normal for people with autism, just like when you line things up. You can be so rigid with that, but you love the chaos of toys strewn everywhere and it drives me crazy.

I wonder if you will ever understand the danger of running into the street or running toward water without one of us with you.

I wonder if you ever get tired of me asking you to repeat the same word you just said and if you understand I am only trying to help you communicate more clearly.

I wonder if you know who Jesus is. I wonder if you like going to church because you get to spend time with other children, your age and learn about Jesus, or if you just like getting out of the house and have some freedom.

I wonder why you bang your head, and even though it hurts, you do it again and again.

I wonder if you will ever to be able to read on your own. Or if you will always rely on pictures to understand.

I wonder if you will ever be able to live on your own, or if you will always need the support of family.

I wonder why you have night terrors. I wonder what causes them and why you must experience them because you already deal with so much and you are only four years old.

I wonder if you will ever be able to be outside without wearing a safety harness as we go shopping or to appointments. I wonder if you know we only do that so you can have a little bit of freedom, but we can keep you safe.

I wonder if you will ever take your Epilepsy and ADHD medications independently or if we will always have to hide them inside your liquids and foods. I wonder if you will always have to take medications to keep your brain from misfiring and your hyperactivity under some sort of control.

And while I wonder all of these things, there are many ways that you amaze me every single day.Tyson Vacuum image

I am amazed at how much your ability to communicate has improved over the last couple of years and how you work over and over to learn new sounds and words.

I am amazed that when you started preschool last year, you were considered nonverbal and only had 24 words under your belt, but by the end of the school year, you were speaking in 5 Word utterances.

I am amazed that you love with such a huge heart and tell me every day, without prompting, that you “wuv” me.

I am amazed that at times, you can sit still and remain calm, if even for five minutes. That’s a huge success.

I am amazed that if we show you pictures marked on a calendar you understand how many days you have to wait for something to happen.

I am amazed that you know how to use the potty when you want. It isn’t every day, but someday it will be.

I am amazed that you go to Speech Therapy every week and you improve on what you learned the week before. And this is part of our routine. Every week for two years.

I am amazed that you try to write the first two letters of your name but recognize all of them.

I am amazed that you know how to count from 1-10 on your own and are learning how to go onto 20.

I am amazed that you can recite the alphabet and can also recognize letters, even if they are not in any particular order.

I am amazed that you know what it means to put things in a sequence and you do it without error.

I am amazed that you love foods that are good for you. Tomatoes, cucumbers, strawberries, watermelon, bananas, apples, vegetables, yogurt and cottage cheese.

I am amazed that you can name almost every vacuum made by simply knowing how they look and are designed and how impressive it is when we are out in a store and you can point them out to me.

I am amazed that you like the taste of my coffee, once it has cooled off.

I am amazed that you never give up when you want something. You are almost relentless in asking for it, even when the answer is no.

I am amazed that you are willing to share your toys, even if you don’t want to.

I am amazed at how much you love animals and are not afraid of them. I shouldn’t be amazed by this, because your mom loves animals too.

I am amazed that you are always willing to try and you don’t give up easily.

I am amazed that when someone doesn’t want to do something, you gently remind them to try.

I am amazed that you can watch ceiling fans and fidget spinners spin for hours and you love this. Who knew something so simple could bring such joy?

I am truly blessed that you are in my life, Tyson. You have taught me many things. Some I have learned by trial and error; in many ways, I have a ways to go. But you never give up on me. You bring such joy to my life. I cannot imagine my life without you in it.

Every condition and disorder you have been diagnosed with, one would be more than enough for anyone to handle, but you deal with five. So no matter how many times, I want to cry and feel sorry for what you have been dealt, I look at how resilient you are and I know that because you live with these, I do too. I’ve learned to look at life just a little bit differently and realize that although these disabilities may afford you some extra help, that they do not mean you can’t. You just do things differently.

I love you; I love you more; I love you the most; I love you forever! This is what we say to each other before bedtime. He repeats much of what he hears but will say I love you too, on his own.

*I wrote this for our grandson, Tyson. He is four years old. Someday he may be able to read it or have it read to him, but I want him to know that although we never expected to have a Special Needs grandson living with us and being a part of our everyday life, challenging us to think outside the box of “normal parenting” if there is such a thing, that without a doubt, he has opened my eyes to the world around me. He has taught me so much in these last four years, more than I could have ever learned in a book.

I am thankful to our Heavenly Father that he felt he could entrust Tyson to our care, along with his mom. And I pray daily that we utilize every opportunity to help him learn and thrive in the world we live in.

May you know that Jesus loves you~right where you are right now and always.

Blessings, Carlene

Family Time

This past week, we loaded up our Yukon and drove 989 miles in searing heat with no air, except for the wind whipping around in the truck with our windows down. As humid and hot as it was, and all the perspiring going on, we should have melted the pounds away.

When you travel with a child that has special needs and an adult with respiratory problems, you feel like you’re packing the entire house for a weekly excursion. Loading the truck with suitcases, a medicine bag for several people, mobility devices and a bag of toys/books to keep everyone satisfied….checking lists off twice, it’is not as easy as it sounds. It takes almost an hour to load everything and then you pray you didn’t forget anything.

Our family, except for our daughter and fiancee, secured in our seatbelts and car seats made the normal 15-18 hour trip in 21 hours. Longest 21 hours of my life so far.

I love the state of Florida and someday when I’m old and gray, I hope we can call Florida home again. Ok, I’m old and I do have some gray strands peeking through, but Tyson is doing so well in Ohio and is all set up with his therapists and specialists that moving is very daunting. I’m not sure I could talk his mom into leaving her friends in Ohio and I know I couldn’t handle being too far away from him or our other grandchildren.

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Tyson loved the pool and we tried to go every day while there. At first, he was hesitant, but once in, getting him out was almost impossible. His Uncle Mike made it fun, taught him to close his eyes and hold his nose to go under the water. He loved jumping from the steps with his swim vest on and spinning in the water. This was a great way to expend his energy before our nightly dinners and almost always ensured he would drift off to dreamland.

When your only living parent lives almost a thousand miles away, you cherish the time you have and if you are even a little bit emotional like me, find it hard to say goodbye. I kept my tears inside and thought about how blessed I am to still have our mother here and so very thankful to have spent the 7 days with her. Great memories were made and all of her neighbors doted and loved on Ty. Providing him with toys to use while there and yummy snacks any toddler would love.

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We visited a great Thai rolled ice cream shop in downtown St. Petersburg called Ice Burg. We watched as they made the specialty treats. It was worth the drive downtown just to try it out! Very filling for low prices.

We ventured to a fenced in play area near Gulfport beach in Pinellas County and Ty was able to access a small beach area with sand and shells. For the past few months all he has talked about was going to the beach and building sand castles but as it turned out, that was the only beach he would visit. He didn’t want anymore to do with beaches only the pool. Maybe one day he will relish the sand and surf.

You never realize how much you miss your mom’s home cooking until you are eating it. We ate out twice while there..the rest of the time was savoring the smells wafting in the air as she prepared meals. My mom is an amazing chef!

As we embark on the road trip home, I’m so very thankful to Jesus for keeping us safe. We’ve been on the road for over 8 hours now and thankful my husband and sweetheart is good at driving and navigation; he used to drive for a living.

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The biggest takeaway from this post. Enjoy the time you have with your family. Love one another, laugh and cherish each moment you are blessed to have.

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Don’t just pretend to love others. Really love them. Hate what is wrong. Hold tightly to what is good.
Romans 12:9 NLT

May you know how much Jesus Loves You~right now wherever you are!

Blessings~Carlene

#HopeAlwaysHaveFaith

Keeping it Real

For the Lord, your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”

Zephaniah 3:17 NLT

 

 

I am encouraged by reading the above passage of Scripture.  Yes, Jesus is living among us. His Holy Spirit lives within me. He is Mighty and Powerful. He delights in me! He calms my fears with a love like no other and He rejoices over me with joyful songs.  This verse reminds me that no matter how things may appear to me, my Heavenly Father rejoices over me and my life!

I firmly believe that everything that we go through in life is for a greater purpose than we can see or imagine. I know that God is in control and when you have a personality like mine that wants to fix all the problems around and ease burdens, it’s easy to think you’re on your own.

HAHF

I love the Lord with an everlasting love. One that cannot be diminished by my circumstances. I know there is nothing I will ever face that he can’t possibly understand or hasn’t overcome.

I’ve been feeling out of sorts of late and I cannot pinpoint why.  I can think of many reasons but not specifically pinpoint it. Two years ago, when an invisible chronic illness forced me to reevaluate my life and retire early at the age of 51, I wasn’t sure what would happen or how our family would make it without my income, but I knew God would provide a way.  It was scary.  I had worked since I was 16 and being someone who typically fixes problems, I really had no idea how to fix this. I knew though, that if I didn’t start taking care of myself, I wouldn’t be good for anyone else.

I have never been the type of person that puts my needs above others. I am not wired that way, so trusting God and the Peace He imparted to me, made the decision, although scary, so much easier to make.

Three months after taking early retirement, my daughter and I sat inside a small exam room of our local Children’s hospital Developmental Pediatrics clinic finding out her son, our youngest grandchild, had Autism Spectrum Disorder and that opened up a whole new set of scary challenges. He was nonverbal. That was in 2016. He has found his voice but doesn’t answer many questions yet, unless they are specific questions he can answer.

No matter how much pain I was in, every day I would research and work with him to help him understand, teach him simple signs so he could make his requests known and try to bridge the gap between his mind and the world. His favorite phrase, now is “I love you too.”  He climbs up on my lap, wraps his arms around my neck and repeats that phrase over and over. Melts my heart.

Living within our means was a challenge when I was working full-time and bringing home a paycheck every other week. Living on a fixed income and having enough to last from month to month is nothing less than a miracle from God. And there are some months, there isn’t enough, but God always provides for our needs. We have found hope through food pantry programs and installment plans on bills to carry us through and the love of family and friends.

Somewhere along the way, dreams changed, priorities shifted and I feel like a failure. I know I should not feel this way, but deep down, if we are keeping it real, I do. I can’t be on my feet for very long periods, or my legs go numb all the way to my feet, the searing back pain makes me want to sit down and cry, but I hold the tears back.  The widespread pain I used to experience throughout my body is held at bay by all natural supplements I use and I thank God every day that I found those.  However, they don’t help with the searing pain in my back. It’s the type of pain you learn to live with and you adapt. Pain changes a person, even if you try your best not to let it.

I had hopes of working til actual retirement age and retiring to a warmer state with no snow and no cold weather.  But I don’t see that in my sights anymore. Now I see therapies, medical appointments and helping our grandson thrive in his life. And I truly am not trying to sound like I am complaining, because I love this little guy and would do anything within my power to help him succeed.

I don’t like clutter anymore. At one time, it didn’t bother me as much as it does now. I would guess the fact that I see it 24 hours a day 7 days a week probably has a lot to do with that. When I was working, and then coming home to a mess, wasn’t as important as sitting down and relaxing before cooking dinner, bathtime, and bedtime. Now everywhere I turn, there is a mess. Yes, having a toddler in the home is a tiny part of the problem, but the biggest reason, is I have become too complacent in keeping the house in order. For the past two years, I have been saying the clutter has to go, and yet as I view the room around me, it seems not only has it not gone anywhere, but it has increased! My answer is simple, rent a dumpster, and start tossing. It sounds like an amazing idea until you figure the costs and realize the budget you live on will never work with the idea.

A year ago, my physician encouraged me to consider having a bariatric surgical procedure to help me feel better. And I did consider it but knew there was no way that I would be able to have the allotted time for recovering from such a procedure available to me, so I gave up on those plans. I have been considered morbidly obese for years and no amount of changing the way I eat, ever seemed to help. Exercising is so difficult because of the searing back pain that I have become resigned to being the size I am. And that is scary because I know that if I don’t lose some weight and get down to a healthier weight, I am not only putting my health at risk, I am shortening my lifespan.

This depression in me has rendered me “stuck”.  I want to do more with my life. I want to be a light to others. I want to be healthy. I want to be around for at least another 40 years or so, God willing, but I know that if I don’t find a way to get moving, more than I am now, I may end up more disabled than I already am.

Since 2005, I have struggled with a thyroid problem. I was diagnosed with Graves disease that year, because not only did I have a thyroid disorder, but I also had an autoimmune disorder. I have been without a thyroid gland since 2006 when it was eradicated by radioactive iodine treatments and have had to remain on medications that replicate the production of thyroid hormones that control the organs in my body.  I have been struggling with keeping my TSH levels in the normal range and finally some good news that the dose they have me on is finally showing good results.

Living with obstructive sleep apnea requires me to wear a CPAP (continuous positive airway pressure) mask every night and the machine forces air into my throat and keeps my airway open. About a year ago, I found out that even though my CPAP equipment was working properly, my cells and organs were not getting enough oxygen to live well. So, supplemental nighttime oxygen became part of my routine as well. When someone lives with OBSA, if they sleep for 12 hours or 2 without equipment to help keep their airway open, they will always feel fatigued and may suffer from headaches, leg cramps, falling asleep the moment they stop moving or talking. I never realized how important oxygen saturation in our bodies was until I was lacking it. I felt like a zombie and couldn’t comprehend why I was feeling so horrible, until I was informed, after testing, that even though my airway was remaining open during sleep with the CPAP, my oxygen saturation levels were dangerously low nearing 60%, not the recommended 90% or higher. For me, sleeping without my CPAP/Oxygen is not optional. The only way I can sleep without it is in an upright position and then I am still lacking the proper oxygen my body needs.

As my husband, grandson and I prepare to take a vacation, that has meant putting aside money we really don’t have, so we can get away and relax, I have come to realize this may be what I  need to get back into the right frame of mind. A change of scenery and climate, along with being able to visit a loved one that I miss deeply, might just boost my energy levels again. I am counting down the weeks until this becomes a reality.

Every morning as I sit with God and pray, I see the clutter in my home and I don’t want my heart to remain in a cluttered state. I need to embrace the purpose in my days. Seeing the same four walls and facing the same daily challenges in raising a special needs child can make anyone feel isolated and alone. I know it has for me. I have always been a “people person”. I love being around others and engaging in conversations and somehow, I have got to find a way to do that again. As far as the clutter, I know that many experts suggest starting off small, working on a small area at a time and not looking at the big picture. It’s just so hard when you see the entire picture daily. There is no shutting it off.

I know our lives are always a work in progress. Growth can’t come if we are not willing to change or try things in different ways. I know that for every failure I have ever experienced in my life, there has been a lesson learned and life always looks better when you get through the testing than when you are going through it.

And I know, that the feelings of failure and sadness that have been holding my heart hostage, they too shall pass. I know this because I am loved. I am worthy. I am enough.

Thank you for listening to the ramblings of someone who knows that I have much to be thankful and grateful for and that no amount of “feeling sorry for myself” will help. I guess I need to see the words and read them to realize that. And I owe it to all of my readers. Without readers, there would be no blog and no reason to realize that God will allow many events in our lives to take place as He works on molding and shaping us into the person He created us to be.

May you know how much Jesus Loves You~right now, wherever you are and He is always available to you! #HopeAlwaysHaveFaith

Blessings~Carlene