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.

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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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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.

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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

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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

 

 

 

 

 

 

Raging Storm

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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

 

 

 

 

 

 

Moving Slow in a Fast-Paced World

Philippians 4:11 New Living Translation (NLT)
11 Not that I was ever in need, for I have learned how to be content with whatever I have.

I used to walk relatively quickly when the need was there. Now my only hope is that I don’t trip or fall while walking. There is no quickness in my steps anymore. I miss that. I miss being able to take walks without being in pain and needing to sit down every 10 minutes or lean on a shopping cart if “my helper” is not with me. I totally dislike the fact that I require “my helper” more times than not. “My helper” is my rollator walker, with a built-in seat and storage basket. It weighs about 20-30 pounds and because it is made for a large person like myself, although it does fold, it still takes up precious cargo space and strength to haul it in and out of a vehicle.

I rarely go to the store alone anymore, not because I wouldn’t enjoy a break without family members going everywhere with me, but because if I have to purchase more than one or two things, I do require assistance. If there are no electric carts available, then I need “my helper” to maneuver through the store and be able to take multiple breaks to relieve the pain and pressure felt throughout my body, mainly in my lumbar (lower) spine area. Leaning on a shopping cart is the last resort, as it does not dimish the pain, but at least I have something to hold onto.

My husband has multiple names for “my helper”. And I truly do understand his frustration. When we travel anywhere, far or near, I need it. There are times I fool myself thinking I will be ok with just my cane, but if I were, to be honest, my cane doesn’t provide the same type of support the walker does. And can cause more pain because of instability; my muscles tense up which then lead to spasms, which are far more painful than if I had just chosen to use it.

Going shopping is always a planned event. Where are we going? Will “my helper” fit through the aisles. Yesterday we shopped at a local store, and I didn’t think we would make it through the store. It was busy. It’s that time of year, the aisle ways are only made for one person with a cart to go through, wall to wall people, stacks of merchandise everywhere, but we made it. Almost everywhere I go, that I will need assistance in maintaining my mobility requires planning.

Rollator Walker
My Helper on Hard Days

There were many sporting events and band events that our grandson participated in this year, that made it impossible for me to attend. That is when my heart breaks.  I want to be a grandmother that can support and cheer on my grandchildren and encourage them in all they do and some things I just can’t because of the disabling conditions I live with.

I’m thankful I had the foresight to purchase this before I retired due to my disability. It’s large and bulky and irritating that I must rely on it, but I am not ready to stop living and be relegated to my home for the rest of my life.

Even with this tool, I still move slowly. In my mind, I am walking at an amazingly fast pace and then I look over at family members I am with and realize I am still slower than most people because I have been left in the dust. I am always playing catch-up. But I am still moving. Ever so slowly.

The Lord has placed people in my life that remind me that I am very blessed. And while I need to work on being content with using a walker on a daily basis, I know that He will help me overcome the fear of what other’s think when I use it.

So are there areas in your life where contentment isn’t what you thought it would look like? Or areas you hope will be better one day.  Remember that while life may not turn out like we envisioned or dreamed, we are still living and breathing.

Jesus Loves You~right where you are~at this moment.

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

Until next time~blessings to you~Carlene

 

 

 

Giants

Jesus spoke to the people once more and said, “I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life.”

John 8:12 NLT

 

All of us have dark times in our lives, times that seem hopeless and we feel that no matter what else happens, we will stay stuck in that dark place. It’s easy to let feelings like that wear on you.  I have had those feelings lately.

And in the midst of those feelings of despair and depression that takes hold and doesn’t want to let go, Jesus is there. He is my Hope. He is the reason I don’t give up and I don’t quit.

There have been many days that I would rather, pull the covers over my head and go back to sleep than have to get up and face the day and all it holds and that is exactly what the devil wants. He wants me and you to believe that nothing will ever be better and the feelings of hopelessness will consume us and everything in our lives. That is why it is so important to stay in The Word; to spend time with the Creator of the Universe.

Jesus came to earth as a baby, born to man, to save us and give us everlasting life. This life we live here on earth is temporary. This is not our permanent home. I know sometime’s I forget that. He endured hardships, trials, struggles and yet even though he never sinned, not once, He died on a cross, bore the sins of the world so that once and for all, sin would be no more.  He shed His blood for me. For you. He did this so you and I could have life and that through Him we would live forever with Him in eternity.

There have been many times lately, that I have hoped for that eternal life. No more pain, no more tears, no more frustrating times. He has a plan for our lives. And in the midst of those plans, heartbreak happens. But if we put our faith in Jesus, He will see you through it all.

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For the past several weeks, in our home, we have battled with our grandson. He requires a lot of patience and understanding. Living with a child that is autistic, you never know from one moment to the next what will happen. The demands of a special needs parent/caregiver are great.  And until you go through it, and take that walk, you can never fully comprehend all it encompasses.  It’s not an easy road.  Teaching him requires thinking outside of the box. His learning styles are vastly different from other children his age.  He processes information more slowly than most.  And just when you think you have him all figured out, when you know what upsets him or throws him into a sensory overload, you are right back to where you don’t know as much as you thought.

We love him immensely, but there have been many times, I have asked God, “Why?” Why is he one of the many that have to have these struggles? Why couldn’t he be normal? Why do we have to keep the same routines, no spontaneity allowed in our life, because this will set him off? Why must he have sleepless nights, with night terrors? Why do bright lights and loud noises hurt him so much? And while there have been no concrete answers, I was reminded of the story of the man born blind who was healed by Jesus and saw for the first time (see John 9 for the details).

I know that God has a plan for Tyson and his life. I may not understand the plan, I may have a hard time coping with what he goes through each day, but I have a God that is bigger than any problem that comes our way.  Through Tyson, I see the world through different eyes. Even through the tears, I am reminded that Jesus is with us. And with him. And how much he lights up when I talk to him about Jesus. While I may never fully know how much Tyson understand or comprehends, I know he knows Jesus. Worship music soothes him. Going to church and learning about Jesus makes him smile.

Tyson reminded me, late Sunday afternoon, how much he loves being with others that love Jesus too.  My husband and I woke up early Sunday morning, and quietly prepared to leave the house to attend church. Usually, we wake Tyson and take him with us, but I was being selfish and I wanted a break.  A break from chasing him and fighting with him to get in his carseat and stay buckled in. A break from his mood swings and impulsivity; so we quietly got ready to leave, leaving him to sleep with his mother and left without him. Later in the day, as he sat on my lap, telling me over and over, “I love you mamaw,” he looked at me with a sad little face and said, “you go church?” When I replied, “yes, papaw and I went to church,” as his tiny little lip quivered, he exclaimed, “I go church!”And I had to tell him no, not this week. He cried. And I realized then, that my selfishness caused him pain. The last thing I ever want to do. And I also realized that this tiny 4-year-old has a love for the Lord and even though it may be a struggle getting there, I won’t withhold that from him anymore.

During the sermon Sunday, the pastor reminded me that all of us must have the sincere faith and love that a child has for Jesus. A child isn’t afraid to ask and make requests, no matter how outlandish they may seem as we grow older. Children aren’t cynical like most of us, mainly because they haven’t had the life experiences we have had and take Jesus at His Word. Isn’t that how we should all be? Jesus came so that we could have life, and have it abundantly! He died on a cross so we could have eternal life! We should have nothing to fear because we have Jesus!

Worry can consume us, which becomes fear of what may happen, but Jesus tells us that He will always be with us, He will never leave us; never forget about us.  What a promise to take hold of and help us as we go through our days! He is the living water, and we will thirst no more!

John 7:38 New Living Translation (NLT)
38 Anyone who believes in me may come and drink! For the Scriptures declare, ‘Rivers of living water will flow from his heart.’”

I am forever grateful that I have a Savior that loves me unconditionally and is always available to me, no matter the time of day.  He is available to you too!

Luke 11:8-9 New Living Translation (NLT)
8 But I tell you this—though he won’t do it for friendship’s sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.[a]

9 “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.

Trust in the Father. Have faith. Hope Always.

May you know how much Jesus Loves You~right where you are-in this moment!

Many blessings~Carlene

 

 

 

 

Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

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

Blessings until next time~Carlene