Rodney

Earlier tonight, we said our final goodbyes to our beloved family member, Rodney.

We adopted Rodney when he was 4 years old, maybe even 5-the shelter really couldn’t give us a definitive age. He had been at two previous shelters and if he had not found his forever home with us, his days were numbered.

For the past 7 years, he had met us at the door with a wag of his tail and excitement as he ran circles around us, excited we were back home with him.

He was always underfoot, wanting to be as close to us as possible. The last years of his life, he always had a cone on, because of one “hot spot” that never healed. We attempted many times allowing him to go without the cone, but we never could get his problem fixed. A constant discomfort for him. He adapted. He loved belly rubs and being brushed and then this summer, he started to decline in health. He had multiple tumors, inoperable. Seizures throughout the night and fleas that never left. For the last few days, we wept not knowing how long his suffering would go on. We knew his time here on earth was coming to end. He refused to eat or drink. He stopped wanting to go outside to take care of his business and he no longer had the strength to stand on his own. Lifting his head was almost impossible. Thanks to three of our closest friends, he suffers no more. He is resting at Rainbow Bridge now and some day we will see him again and we look forward to running to greet him. Rubbing his belly and seeing all the pain gone from his body. Until then, he will be waiting with our beloved Sadie who made the journey before him.

We love you Rodney; our hearts and lives will be so different now, but we thank you for allowing us to be part of your life here on earth. Rest well buddy, rest well..

 

Your sun will never set again, and your moon will wane no more; the Lord will be your everlasting light, and your days of sorrow will end.
Isaiah 60:20 NIV

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

Jesus can turn any mess into a message.#HopeAlwaysHaveFaith

Blessings~Carlene

 

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Drowning

Psalm 143:6-8 New International Version (NIV)
6 I spread out my hands to you;
I thirst for you like a parched land.[a]

7 Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
8 Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to You, I entrust my life.

 

HelpMe

 

I am a strong person. I am told that all the time by my friends and family; even people I just met and have yet to form good relationships with. But what no one seems to realize is that I am strong, only because I allow Jesus to be my strength. My strength fails in comparison to that of Jesus.

I believe that all of us have an inner strength we are gifted through the Holy Spirit and it takes patience and requires a trust to tap into that inner strength.  It doesn’t come unless it is put to the test.  I know God will give me everything I need to succeed in every task I am given.  I know He will not set me up to fail. He is good. All the time.

Just as we can become physically exhausted and need rest and rejuvenation, I know my spirit can become emotionally and mentally exhausted and I also need to take time to rest and rejuvenate.  That type of rest and rejuvenation is different for everyone.  And I also know, for me personally, if I do not take the necessary time to rest and rejuvenate my spirit, I feel as if I am drowning and my Lifeguard walks on water, how insane is that? For me to feel as if I am drowning.

I am a “people” person. I am a nurturer, and if I must admit it, I want to be a “fixer” or “people pleaser”. Not in the sense that I have any skill or talent that I can fix anything because Jesus is the only one that changes the hearts and minds of people. I can only make suggestions based on my personal experience and observation.  I am much like my father, who loved being around other people and never met a stranger. I guess that qualifies me as an extrovert, personality wise. Striking up conversations with people, getting to know them, gaining a personal connection makes me come alive.

Knowing all of that, this morning hit me so hard, because as our sweet grandson wanted me to listen to him, about just one more vacuum and how cool they are, I became very frustrated and a little bit annoyed. I could care less, if I hear just one more thing about vacuums, truth be told.  I know I will hear about them though.  He can’t get enough, ever. And I know he can’t control those thoughts. Our brains are wired so differently. I only wanted to go back to bed and shut the world out for the day. Rest, listen to music and some podcasts, fuel up.

Taking time for myself, shouldn’t make me feel guilty or ashamed that I want some quiet. Some peace. And I shouldn’t have to feel bad if I don’t want to hear about it anymore. The guilt in my heart is from the world. Not God. It’s from the fixer in me, that says, “suck it up” you can make it through today, and tomorrow and the next day.

I wonder why we feel so guilty when we want to spend time with ourselves, no agenda or plan, just be. In the Word, God tells us to “be still and know that I am God”. Being still seems so unnatural now.  I used to love being still and days like today I miss those moments. Explaining that to anyone, usually brings a response of “what’s wrong?” And I want to know why does anything have to be wrong? Some days, everyone needs time to themselves, without having to leave the comfort and haven of their own home.

I feel guilty when I think of just me and my needs. How crazy is that? I know it is a very necessary need. I shouldn’t feel guilty, but I feel like I am letting people down if I am not doing everything considered necessary to keep life on an even keel, but I realized today that if I do not take the time for me, the ship will sink and we will all drown.

No one can be an effective teacher or role model in life if they don’t take time to just be.

So, as hard as it is for me, the person that likes to fix things, today I have to take time for me. Drowning, quitting, giving up these are not options. Resting should be the easiest task I have to do, but it’s so foreign to me, I am not sure what resting even looks like.  I guess I will have to keep working on the resting part.

Matthew 11:28 New International Version (NIV)
28 “Come to me, all you who are weary and burdened, and I will give you rest.

Lord Jesus, here I am. You know how weary I am right now. I claim rest in your name and praise you for being the Savior I need. Everyday. Thank you for taking my burdens and bearing them on the cross. Thank you for giving me life. Please help me find the balance I need to not feel so worn. In Jesus name, Amen.

May you know how much Jesus Loves You! Right where you are at this moment in time.

He is always here for you, always! #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

Broken Pieces

I’m trying hard to comprehend the need for Tyson to break and destroy objects that he comes in contact with. Is it because it’s the natural course in the life of a toddler? The curiosity of how things are made and assembled? Or simply the pure joy of seeing toys, priceless mementos of a lifetime ago break apart, or does his need for sensory input figure into the equation? love-1221444_640

I learned long ago as a younger parent to not ask the Lord for patience; inevitably that required walking out many trials involving the art of patience, only developed as you learn to maneuver the pitfalls and blessings of parenthood. In my 30’s, it seems I was more apt and skilled to tune out the chaos. As I’ve grown older and presumably wiser, my hope was I would be much more mellow than I am.

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Some things require ongoing instruction; He’s teaching me to live in the Peace only He can give. To seek wisdom and discernment in areas that although familiar to when our children were young; they never seemed to have this much high-strung energy that never stops!

And in the same instant that something has been quashed, there’s this ray of sunshine that gleams thru and says, “I wuv you.” And sees my sad frown turned upside down, leaps in my lap and hugs me tight.

I talk to him about the broken objects and try and explain why we don’t break things. Some days, he says,”sorry” other days there is no comprehension that a mistake was made.

And I forgive.

I think of the many times in my life, I have done or said something that grieved Jesus, and yet, He loves every broken piece of me and forgives all.

He doesn’t hold our sins over us but lovingly rebukes and corrects us and allows us to live under His mercy and grace.

At the end of my walk here on earth, I want to know that thru all the brokenness and struggles, I learned to love and forgive like Jesus. To overlook offenses and show mercy. To not be the one pointing the finger, but the one saying, things are just things. People matter more.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27 NIV

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

Blessings~Carlene

 

 

 

Keeping Afloat in Franklin Lakes

Abuse of children, at any age, disabled or not is wrong. Period. I am sharing this because she is my friend. I know the post is credible and I believe in standing up for what’s right. There is absolutely no excuse for the behavior of the trusted adults in this mess. And what angers me the most, is when the victim is unable to speak or communicate.

The Autistic Momma

We are a blended family with 7 children. We have 5 autistic children, 1 child with other diagnoses and a 1 year old. We believe in a world where people with disabilities can succeed and have a full life. We believe in equality and what is right. These beliefs are being shattered by a school district.

Our story begins 3 years ago when our 6th child was born. The changes caused our then 7 year old autistic child to experience anxiety and frustration. He began biting his hands as a way to cope. We documented each bite and the school was aware. We implemented in home services and within 2 months the biting stopped. We thought this was the end of the story but we would later realize that it was only the beginning.

Fast forward 3 years, our 3 year old autistic son starts preschool in the same school…

View original post 1,413 more words

Remembering Daddy

My father went home to the Lord on September 18, 2015. It seems like only yesterday that I heard the words, he’s gone. I miss him every single day and think about him all the time. Wishing I could pick up the phone or turn on my Skype and talk to him. But I have to say that out of all the holidays, Father’s Day is one of the most difficult. Our family is in several states and getting together for any holiday is difficult, so missing him at Christmastime, isn’t the same as missing him on a day set aside to honor him.

 

Constantly being reminded by marketing ads that Father’s Day is near and seeing all types of retail products to entice people to purchase gifts for their dads have made it even more difficult this year.  I have a hole in my heart, that will always be there.  As  my father’s life on earth was ending, he was ready. He knew he was going home to Jesus and he was at peace about it. And our entire family misses him something awful, but we too have peace in our hearts, it’s grief that comes at you from nowhere and knocks you down. There is no timeline for grief. I think the reason it hurts our hearts so much is that when you love someone so much, it’s hard to redirect that love when the person is no longer with you.

I had the privilege of having my father for 50 years. He was my superhero. He didn’t need a cape. He was a man of integrity, put others needs always above his own and he was always ready to help anyone in need, even if that meant the last dollar in his pocket or, literally, the shirt off of his back. His rules were simple. Lead by example. Honor and respect your elders. Be kind. Always be honest. Love unconditionally. Do as your told. No backtalk. Pick up after yourself, do your chores. He wasn’t a complicated person, although from time to time he did make things complicated because it seemed like he always had to have the last word.

I think of the many ways that my father and I are alike and there is no doubt I am his daughter. I pray daily that I honor him in how I live and in how I not only value honesty but will not tolerate people being dishonest. I have no room for it and dislike when I hear people say “it’s just a little white lie”… A lie is just that. Big or small, doesn’t matter.

Daddy & Tyson
Daddy and Tyson

He taught me about Jesus. He modeled a life of service to others. He taught me its ok to laugh and cry at life. Life isn’t fair, you do your best with what you have and you thank God for those blessings. He taught me parenting isn’t easy and you can’t be your child’s friend and parent all at the same time. He taught me that bias and prejudice create hate; love all. Let God deal with avenging.

He has always had my heart, loved me even when I wasn’t very loving and forgave much. We shared a special love of being there and helping others. That’s why its so sad that I have very few pictures of him and me together. I was usually behind the lens.

He lived his life his way and on his terms and he went out the same way.

Daddy, I miss you and love you so much, but  I know I will see you again.

Happy Fathers Day to all fathers!

 

But among you, it will be different. Whoever wants to be a leader among you must be your servant, and whoever wants to be first among you must become your slave. For even the Son of Man came not to be served but to serve others and to give his life as a ransom for many.”
Matthew 20:26‭-‬28 NLT

May you know how much Jesus loves you-right where you are in this moment! #HopeAlwayaHaveFaith

Blessings~Carlene