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

 

 

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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

My Catherine the Great

Proverbs 31:11-31 English Standard Version (ESV)
11 The heart of her husband trusts in her,
and he will have no lack of gain.
12 She does him good, and not harm,
all the days of her life.
13 She seeks wool and flax,
and works with willing hands.
14 She is like the ships of the merchant;
she brings her food from afar.
15 She rises while it is yet night
and provides food for her household
and portions for her maidens.
16 She considers a field and buys it;
with the fruit of her hands she plants a vineyard.
17 She dresses herself[a] with strength
and makes her arms strong.
18 She perceives that her merchandise is profitable.
Her lamp does not go out at night.
19 She puts her hands to the distaff,
and her hands hold the spindle.
20 She opens her hand to the poor
and reaches out her hands to the needy.
21 She is not afraid of snow for her household,
for all her household are clothed in scarlet.[b]
22 She makes bed coverings for herself;
her clothing is fine linen and purple.
23 Her husband is known in the gates
when he sits among the elders of the land.
24 She makes linen garments and sells them;
she delivers sashes to the merchant.
25 Strength and dignity are her clothing,
and she laughs at the time to come.
26 She opens her mouth with wisdom,
and the teaching of kindness is on her tongue.
27 She looks well to the ways of her household
and does not eat the bread of idleness.
28 Her children rise up and call her blessed;
her husband also, and he praises her:
29 “Many women have done excellently,
but you surpass them all.”
30 Charm is deceitful, and beauty is vain,
but a woman who fears the Lord is to be praised.
31 Give her of the fruit of her hands,
and let her works praise her in the gates

She is beautiful inside and out.

She is loving and caring.

She is kind and compassionate.

She is fiercely protective of those she loves and cares about.

She is full of passion for what she believes in and always stands up for her beliefs.

She is strong and does not easily back down.

She is determined and does not quit, that is not an option and she will find her way around any obstacle in her path.

She is an artist with a flair for repurposing items that people see no value in. She brings old things back to life.

She is a great listener and works toward a solution, rather than complain about a problem.

She is an amazing mom of three college graduates who are changing the world around them.

She is a wife, a mom,  an aunt, a sister, and a daughter.

She is an emergency 911 dispatcher who works more hours than should be humanly possible. The first voice you might hear, full of calm and reserve as she manages 500 things at once.

She is a former school bus driver that loved her riders as if they were her own children.

She is an animal lover and considers them family, not just pets.

She never has enough time to take care of herself, she is always caring for others and burning the candle at both ends.

She is wise beyond her years and has seen many things most people will never have to see.

She is faithful and will celebrate 29 years of marriage this month to her loving husband.

She was a cheerleading mom and advisor when her daughter was school age.

She loves her community and has a great tribe that she holds dear and close to her heart.

But one of the best things she is…..she is my sister. And I love her with all my heart and soul. Today is her birthday. I don’t see her as often as I would like, but I hope she knows how very proud I am of her, her accomplishments, which are too many to mention. I know she is always a phone call away. Our family is very blessed indeed!

Cathy

Catherine, I love you sis and I pray that today your birthday will be all you hope for and more! You deserve it! Much love~Carlene

 

May you know how much Jesus Loves You-right in this moment-right where you are! Jesus can turn any mess into a message of hope. #HopeAlwaysHaveFaith

Blessings to all!

 

 

 

 

Blessed to be a Mom

Proverbs 6:20-23 The Message (MSG)

20-23 Good friend, follow your father’s good advice;
don’t wander off from your mother’s teachings.
Wrap yourself in them from head to foot;
wear them like a scarf around your neck.
Wherever you walk, they’ll guide you;
whenever you rest, they’ll guard you;
when you wake up, they’ll tell you what’s next.
For sound advice is a beacon,
good teaching is a light,
moral discipline is a life path.

 

Motherhood does not come with a manual, but a plethora of advice from those who have been in the trenches of raising children.  Some advice is not only helpful but lifesaving in moments of chaos and distress. Much of the advice is not helpful because it applies to certain children with special circumstances.  The best advice I ever received was when your child is happy or sad, mad or hurting, love them. Don’t be afraid that rocking them to sleep will spoil them. Children cannot begin to understand what love is if they don’t see it in their own lives. They can learn, but oh to be able to experience it first hand is so much better than being taught what love looks like.

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This beautiful woman is my mother.

My children, who are adults now, used to exasperate me when it came to school projects. I am sure many reading this can relate. They are given an assignment, in which a visual presentation must take place, along with a report or speech. Many times this counts for a large portion of their grade. Educators know that in order for them to complete these projects, they are given ample time to accomplish them. Several weeks time, usually. However, my children would always wait until the very last-minute to spring these projects on me ~ usually one to two days before they were due!  And as they feverishly rushed to finish them, I would comment on how lucky they were to live in this day and age.

“Google” in my day meant making a trip to the library, searching the card catalog for reference materials and books to read and research. We didn’t have the luxury of the internet or typewriters/word processors that had self correction included. If we made a mistake, we had to start over. Long before “white out” was invented or “correction tape” was available. And many times you could tell by the details, the projects were rushed. Long nights of gluing and pasting pictures cut out of magazines or printed materials, with the hopes they would pass their class. Loving them also meant that if they didn’t complete it to the teacher’s satisfaction, it was on them. Learning to realize that there was a solution always in front of them, using their time wisely and not waiting.

It would have been easy for me to do their homework, but they wouldn’t have learned anything by doing that. Life is full of lessons.  Working on school projects and homework helps to prepare them for the real world with a real job and performing many tasks that may seem mundane, but so important.

I wish I would have taught them about why a budget is so very important. If they had money to spend, as a child, the thought of saving it was lost on them until they saw something they wanted and didn’t have the funds to get it and I was a “mean” mom. If they didn’t need it, chances are they weren’t getting it without working for it. I believe it’s important for children to understand that not everything in life is free. Earning funds to pay for something teaches the value of hard work and feeling accomplished in by the success of reaching a goal. Goals are important in life. Creating plans on how to accomplish goals takes perseverance and a willingness to “get it done” attitude. Lofty goals can be accomplished, but you have to be willing to put the work in to get to where you want to be. And there is nothing that can stop you, except the limits you place on yourself.  There is still a sign, hanging in our home that reads “Just because something is difficult, doesn’t mean you shouldn’t try, it means you should just try harder.”  I firmly believe that. I also believe that “giving up is not an option”. Something my parents taught me from a young age.

Mother's Poem

I have tried my best to model love and kindness to my children. To show them that even though they may not have everything they want, they have everything they need. To teach them that they need to exhibit kindness to others and stand up for the downtrodden. Be a friend, offer a hand up, listen, don’t judge someone by their appearance or circumstance. Be thankful for all you have. And if you want more than you have, do what you need to do to make it a reality.

I never had to wonder if my mom loved me. I was lucky. I am still blessed. I made many choices my mother did not agree with and I know many times she was disappointed, but never once did I have to wonder if she loved me. Never. I pray that my children will always be able to say that with confidence and mean it.

I am not blind to the fact that there are many people in this world that did not have a mother that loved unconditionally or even cared what was happening in their lives. And that breaks my heart. My response to those who haven’t had a  life where they had a mom or had a mother that loved them in spite of their faults, remember this no matter the type of parent she was-she loved you enough to give you life. And I imagine that may seem a cliché thing to say, but it is a fact. If you are reading this, then at some point, a woman decided you were worth it. Even if you were given up at birth, you were worth the love of being allowed to be born. Jesus will always love you, even when you feel unworthy of love.

I also think of the women that don’t have children, the ones that would give anything to have a child, to hear the words “I love you mommy.” And, I don’t know why God allows some women to have children that aren’t wanted and those who want them, for whatever reason, can’t conceive. But know this, there are many motherless children in the world that need your love. If you have a deep need to be a mom, and can’t do it naturally, please look into adopting or fostering a child. God will always make a way.

If you have played a role in a child’s life, through mentoring, teaching and making them feel special, regardless if you are their mom or not, you have shown love.

It is my prayer that if you are mother that you have a very blessed Mother’s Day this weekend. If you have lost a child, please accept my condolences. I too have a child in Heaven and I think about her every single day. One day we will be reunited.

May you know how much Jesus Loves You~every single moment of every day!

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

Four Years Already!

Romans 12:11-13 New International Version (NIV)
11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality.

Three days ago, Tyson turned 4. It amazes me how time seems to go so fast the older I get. I remember the moment he entered the world and what great joy he brought to our hearts! To hear his first cry and to hold him close and think of all the great things he would accomplish in his life, dreams you have for your grandchild; the same kinds of dreams you have for your children. Dreams they will be healthy and happy and know how much they are loved. That adversity and obstacles will not cross their path and if it does, they will be able to cope with those and continue forward.  I remember thinking how perfect he was as I held him that very first time in my arms and thanked God for this beautiful life he was entrusting to our daughter and us to nurture and love and teach. Little did I know that not only would he face many challenges near the early part of his life, but that they would also change the way I viewed the world and allow me to see pure and simple joys in so many things I had taken for granted for so many years.

At birth, he was almost 10 pounds. He didn’t look like a brand new newborn, more like the size of a 2-3 month old and most of his newborn outfits he didn’t even fit into, but that didn’t matter because he was healthy, and appeared happy and slept through the night. Yes, we had to wake him to actually get him to do his feedings. He loved being swaddled in a blanket; the tighter the better, on one condition though, his arms could not be trapped in that wrapping.  They had to be free. He still loves to be wrapped tightly in a blanket or sheet. He loves the deep pressure that he needs for his sensory needs.

Four years ago, I had no idea what terms like sensory needs or sensory seeker/avoider meant. but I do now.  And stimming, I thought that had to do with floral arrangements, not something that a child with autism does to calm themselves. And what the heck was PECS? Did that have something to do with bodybuilding??? Nope. PECS is a picture exchange communication system for people that do not speak or can’t speak clearly enough for you to know what they want or need.

When you have a special needs child, there are so many terms that seem so foreign and so overwhelming that you wonder if you will ever make sense of them. You wonder how in the world am I supposed to remember all this and how do I help him make sense of it all. But God knows what we need and he places people in our lives to help us make sense of it and get us through our journeys. No matter what our journey looks like, He always makes a way.

At 26 months, Tyson was diagnosed with Autism Spectrum Disorder, Level 2.  I had no idea there was such a thing as Levels for individuals with ASD and was level 2 a good or bad thing? Click here to read the difference in the levels and what type of supports need to be in place to help each person. There are three levels of ASD. Level 2 under the DSM5-Diagnostic Manual means he would require substantial support. He was non verbal. Made very little eye contact; and did not play appropriately with many toys. He was happy doing things on his own without interacting with others, but has always been very empathetic and loving, especially if he noticed a family member was teary eyed or not feeling well. He would hug you and pat you on the back, as if to say, it will be okay.

As the months progressed, after his diagnosis, we had many other evaluations done to determine if the reason he wasn’t verbal was because of a hearing disability or a speech impairment. His hearing was fine, so that meant either he didn’t know how to form words to speak or he didn’t have a voice, but that didn’t deter us. He has been in Speech Therapy for almost two years (in August we will hit the two year mark). And it has been amazing to see him learn how to tell us what he wants through the use of PECS, simple sign language and short to the point words. Most recently he has been putting 4-5 words together to express himself! His utterances may not be grammatically correct, but it is music to our ears!!

For him, his sensory needs are many. Some we are still navigating through and learning. He received a diagnosis of Sensory Processing Disorder in October of 2016 from an Occupational Therapist that observed him and listened to our concerns/more questionnaires to fill out and he is definitely a sensory seeker.  Seeking out ways to get the input his body needs in ways that aren’t always safe or acceptable. He will climb on anything he thinks he can, even if it is not something any neurotypical child would consider doing. He plays hard. Danger and unsafe don’t mean a thing to him. He knows that my coffee cup is hot, but doesn’t understand that if he spills it, he could get burnt. No comprehension between what hot is and how it can hurt. He loves to bang his head on the floor, into the wall, on the back of a chair and even though he cries, the tears only last for a few seconds and he will do it again. And he has always done this for as long as I can remember. He LOVES water. But water is always a danger, because he doesn’t understand that you can’t go under the water and stay there. The street to him is a big place to run and be free, and the list goes on.

As a sensory avoider, he covers his ears when there are loud noises such as a vacuum cleaner or hair dryer turned on, but he can watch videos cranked at full blast, at a spring concert for our granddaughter the singing did not bother him, but the band instruments made him bury his head, because they were too loud. Every day is an adventure, because you never know what noises will bother him and which will soothe him. And bright lights or a very sunny day and he will cover his eyes, but he doesn’t like it totally dark either.  He has learned the difference between the sun and the moon. When we can’t see the sun anymore that means the sun has gone to bed and the moon lights the night sky. When the clouds are out at night and the moon is hidden, he searches to see where it is and he doesn’t like the explanation that the moon is hiding. Sometimes this alone can cause him to have a meltdown.

Stimming for him is a way for him to release when everything becomes too much in his brain. And just as ASD is different for everyone, stimming is different for everyone too. He loves to spin in circles until he gets dizzy which can seem like that will never happen. And when he finally stops spinning, he will start all over again. He laughs and smiles when he does this. And he loves to jump. On his indoor trampoline or a mat on the floor or when he grasps your hands and wants you to hold them while he jumps up and down over and over again.  Occasionally he will walk on his tip toes for a while and I have yet to determine if this is a form of stimming or just a part of who he is.

In July of 2017, he received an official diagnosis of MERLD. Mixed Expressive Receptive Language Disorder.  

Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her. Follow the link above to learn more in depth information. Being in Speech Therapy, once a week for the past two years have helped him to expand his understanding, but there is still so much more for him to learn and understand. He also receives speech services through our local school district once a week as part of his IEP (Individualized Education Plan) for the integrated preschool program he is a part of.

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He relies on visual supports at school and home to help him understand what tasks he needs to be doing and how to accomplish them. Or when we need to prepare him for appointments or outings, we can show him with pictures and he gets it, but tell him and he may or may not understand. And some of the visual supports need to be broken down into steps until he learns them.  It doesn’t seem like it would be a big deal, until you try to teach him something new and he just wants to try and figure it out on his own, but has no clue how to do it. Steps are important. For example let’s say we want him to wash his hands. When he first learned to do this independently, he thought you just got your hands wet and that was it.  So Step 1 – turn on the water (with supervision or the bathroom will be flooded in no time-no joke) Step2 –  test the water-is it too hot or cold?? Step 3 – put your hands under the faucet and get them wet. Step 4 – put soap on your hands. Step 5 – rub your hands together so the soap gets all over them. Step 6 – Rinse the soap off your hands with the water.  Step 7 – turn the water off. Step 8 – dry your hands. Step 9 – put the towel back. Step 10 – all done. (No more playing in the water!)  Now for you and I we just simply wash our hands. But until he learned those steps he had no idea what it meant to wash his hands.  And the school and us, here at home, still have to remind him that he cannot play in the water or turn it on without help. We will continue to work on that and he may get it one day or he may not, because as I said before he LOVES playing in water.  Imagine having to do that for everything you want to teach him, that’s  just one part of his MERLD. A very small part, but with huge skill set learning.

In October of 2017, after having two unprovoked seizures, he was officially diagnosed with Epilepsy. Since then he’s had many seizures and we’re hoping the anti-convulsant meds he is on will hold the seizure activity at bay. His meds are in liquid form which he gets three times a day in his juice or milk. Sometime’s he is wise to it and will comment how “yucky” it tastes; and I will suggest that we just need to shake it up and mix the juice. The power of suggestion has been enough so far and he will take it. Out hope is as he becomes older he will be able to transition to tablet form of the medications.

Each time he has had a tonic-clonic seizure (formally known as grand mal seizure) he has no idea what has happened only that he is extremely tired and sleeps a lot. He also has absence seizures, where he appears zoned out or staring at something no one else can see. The staring episodes have happened since infancy,but EEGs never showed any seizure activity so we had no idea to be worried or concerned. And the EEG/MRI done in September did not show any activity during the testing. There is no rhyme or reason to his seizure activity. He is not left alone because it is not safe for many reasons, epilepsy being one of those reasons.

And yes, there are many days I’ve thought how much more, Lord? How many more trials will he face, but I know that Jesus loves Tyson as much as he loves all His children.

Right now, Ty doesn’t understand and comprehend all of his medical and developmental delays, only that he goes to the hospital to see his doctors.

When he first went on the medications for his seizure activity, we noticed a shift in his happy carefree self. His meltdowns increased and his behavior became more aggressive and for lack of a better term, angry. His appetite that had once been healthy and hearty became almost birdlike. It turns out that many of the AED (anti epileptic drugs) medications used can have side effects such as the ones we’ve been experiencing and thru trial and error, it may take several different ones to find the right one.

He’s always been hyper, but never so bad that he would be too busy to eat or sleep and bouncing off the walls or invading others personal space such as his peers at school. And because he just started preschool this year, a baseline of data needed to be established before seeing if ADHD played a role in the hyperactivity. After consulting with his teachers and medical specialists, ADHD was confirmed in March of 2018. The seizure meds had seemed to exacerbate the symptoms.

Even through all 5 diagnoses, he is still  full of wonder and adventure, our little blessing.  Yes, some days are very challenging and difficult to find joy when looking on the surface, but if you take the time to get to know him and see  the joy in his eyes and the love he has to offer, he isn’t any different than any other toddler. He is pretty amazing that he holds it together so well and many days when I get tired and wish he didn’t have to follow a medication schedule or have extra therapy to help him learn and blossom, I am forever grateful he has treatments that help.

Two years ago, he was nonverbal and. we had no idea how much he understood and/or if he ever would. Now he plucks dandelions out of the yard and with beaming pride brings them to me to smell and keep!

I will continue to advocate for him. I will continue to educate myself, our family and friends on every special need he has, but most of all, I will continue to thank God that HE blessed our family with this bright eyed babe four years ago. Our life is so much richer.

Thank you for continuing to follow our journey and being so supportive and encouraging!

May you always know how much Jesus loves you~right where you are in this moment.

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith

 

 

 

 

Easter

I posted this on my Facebook page earlier, but wanted to share these thoughts with all of you.

Praying everyone will have a Blessed Easter weekend. After spending the middle of the night hours in the emergency department with Tyson for breathing treatments that couldn’t wait and very little sleep, it made me think how weary Jesus must have been today, knowing that on Friday he would take the weight of the world’s sins upon His shoulders for us. For me and you to be reconciled with The Father.

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The story of Easter isn’t about Bunny Rabbits and candy and egg hunts, but about a loving God that doesn’t want any of his children to perish and I know he’s okay with Easter Egg hunts because He loves to see joy in the hearts of His beloved and for practical ways for the church, again you and me, if you are a believer to love one another and share the love He gives everyday.

Maybe, I’ll see you at the Egg Hunt or in the church building or at the grocery store, but know this one thing, Jesus Loves You very much!

However you and your loved ones choose to celebrate or observe this holiday weekend,may you know Jesus Loves You So very much!

#HopeAlwaysHaveFaith

Blessings!

 

 

Love Beckons

When our daughter announced on January 1st of this year that she had become engaged, I thought things were moving way too fast and her boyfriend and her needed to slow down. They had dated over four years ago, and although I do not have anything personal against him, I didn’t feel only dating for a few months would be enough to accept a marriage proposal.  It took me some time to realize that they were serious and I could get on board or not. And then I realized that our baby girl wasn’t a baby anymore.

She has a child of her own. And many couples get married in their twenty’s so why was this so hard for me? I have many reasons, but I know the biggest reason is I want to make sure she is ready. It’s one thing to date someone and fall in love with them, it’s a whole other thing to commit to be married to them for the remainder of your life and since her father and I have struggled with that in our own marriages, you hope and pray better for your children, that they won’t face the same struggles.

Last week our daughter and future son in law informed us that they don’t want to wait to get married. They want to get married this summer, nothing big or fancy, but they don’t want to wait. Life is too short. When you know what you want, go for it. And once again I am bowled over by all of this. I can’t stop them and I can’t blame them, but I can say I am more frazzled than I have been in a long time. I’ve always dreamed of planning her wedding with her, but I had assumed I would have more than 4 months to do so. And since they are living with us and have not planned on a place of their own or have the budget for that, that is another concern. How much will their life change and how much will stay the same?Katlyn and Chris

Whilst we do not need to worry about a wedding gown, as she is not a frills type woman, there are still many things that must be figured out. A shelter has already been reserved for  a reception/party for after the nuptials, a theme for the party, and a very rough draft menu decided on, but that’s it. And now as we get ready to spring our clocks forward later tonight, I am reminded that time is of the essence.

His parents live in Florida and will be coming up and his mother will be officiating the ceremony as she holds a license for marriages in our state, but trying to plan things and coordinate details has been a little difficult. Our daughter knows what she wants, but can be very indecisive if given too many choices. Her fiance has had some input, but is leaving the details up to the bride to be and myself.

Today as we sat down to determine a rough menu of the types of foods, and planning on how to pull it off without a huge expense, I will say Pinterest has many helpful ideas and suggestions. I want this day to be a day she will look back on and smile, holding in her heart the memories of friends and family gathering to celebrate the love of two very special people.

RM DRAKE LOVE QUOTE

Lord, I ask that you grant clarity and wisdom as we move forward with these plans and that you will bless this couple and strengthen them as they move forward towards the next step of their journey. Allow the love they have to continue to blossom and give me the patience needed and peace to help them in any way I am able in making their dreams come true. In Jesus Name, Amen.

Life is short. Savor every moment you are given. Love extravagantly. Be thankful for the blessings in your life, no matter how small they may seem. Jesus Loves you~right where you are in this moment and always.

#HopeAlwaysHaveFaith

Blessings~Carlene