If I could tell my son....

 I have seen a lot of things of late that I would say are discouraging to most people, Christians especially.  Things that are self-servant, hateful, personal ladder climbing, degrading talk, speaking to people as though they are unvalued.  When covid was over, and we came out of hiding and we started talking, something was really different.  It was like you either were on one side or the other, divisiveness set in HARD, about even just day to day things.  Its really appalling to me that we just allow turmoil to separate people, when I know people can be, and should be better.  It's also baffling to me how some people call themselves Christians but they don't try to obey God.  We all mess up, we all deserve death for our sins.  It's not about you and me- it's about JESUS. None of us are good or right without GOD.  Period. We have to teach others that God is the TRUTH and is RIGHT. And it's up to us to do His will, not ours.  

And that's when I started thinking about this season of life that I am in. Almost to empty nest, and I am seeing my daughters grow up, and look for godly men to start a family with.  And then I started thinking about my Caleb, he would be 22. The age I married his daddy. If he had been healthy, he would be seeking a wife too I'd imagine, he was a handsome little man, so I'm sure that it wouldn't be too hard for him to find a good match for him.  

I think the thing I've seen the most, in my marriage, in my life, in my daughters search for good young men, that there is one answer to finding the perfect person:  none of us are.  A dear friend said "Marriage is not for happiness, marriage is for holiness" - and that couldn't be more true.  We are not going to be happy all the time, but we can be in a relationship with someone who HELPS us to be closer to God, challenges us when we are wrong, helps us when we aren't strong, and leads us in the Word for the answers when things get tough. 

The truth is that if our HOPE lies in GOD, then we are seeking to serve Him, worship Him, obey Him, and love Him. When it comes to who they marry, I want them to find someone who is going die in Christ. And that's what I would tell my son.  The world, all lies.  The truth is Christ.  I would ask him to be the Ephesians 5 kind of husband - who would love her so much, that he would love her like Christ loved the church and "sanctify her, by the washing of the word...that she might be holy and without blemish".  Wow. That is a job. That is being the SPIRITUAL leader of a home. That is taking God's word and delivering it in the tough times, in the joyous times, in the times of illness and times of prosperity and delivering it to each other to encourage, to be thankful, to be prayerful and to be grateful in all the seasons of life.  

I would ask him to be that man for someone, to rise and pray in all of those times. To read the Word for answers and Truth.  To obey God. To serve God together.  You can have great jobs, and success, and not have happiness- because you're not looking for holiness. You can choose to be lazy, and allow apathy and the "appearance of happiness" be what drives you instead of living - you aren't looking for holiness there either.  God's plan for holiness in the world was bringing us Christ to die, so we might obey and bring our husband/wife to obey and serve together in our home, raising our children to LOVE GOD and serve Him.  

Caleb never had to make those choices, or worry with that part of life, but if he had, I would have soaked him in those words, so he could wash his future wife in them. Soak your children in the Word.  Read it every day to them. Prepare them for life with the HOPE of Heaven.  

It's Been A While...

 Hi to all.  It's been a long while.  My last post was about CHANGE.  And through the last several years, there has been a great deal of that.  It's been 4 years, and I have been working in Youth Service at our High School for that time.  It's been rewarding, and challenging and exhausting, but there has been an opportunity to do good work and show teenagers the love of God. That alone is one thing many of them do not see at home. I am feeling I need a change in life again, and here I am waiting for that change - but having complete trust that God will guide my steps.

We have been through a pandemic, who would have ever thought?  I think Caleb would have won the award for "adapting best" during all that, but I'm sure glad he didn't have to go through all the things he would have with testing and protocols just to deal with all his other health issues. I miss him every day.  

 Wherever you are in life, I just wanted to take a moment to encourage you to pray, and know that God will direct you when you have faith in Him. His path for us, his WILL for us is to be in Heaven with Him in the end.  Whatever path he leads me down, I know it is the right one, every time. He knows best, and He wants us to be in the places to be able to do the most good for Him and His Kingdom.  Know that. He has you, just lean on His understanding when we don't understand ourselves the "why's" that eat at us sometimes. 

I leave for a Mission trip tomorrow to New Mexico to help with Manuelito Children's Home.  They are doing great work and caring for precious kids and I am thankful for the opportunity.  Look for ways to do good and look for the good in all - it's always there.  

Blessings, (and a promise to write more often)

Beth

Change

Change is not my favorite thing.  But life is change from the very beginning.  The most trouble I have with change is with our kids.  They are growing up so quickly.  We even have a beautiful granddaughter now, Lucy, who is a busy little bee and such a joy!  Her mama, Cheyenne, does a great job with her and is getting ready for that transition from baby to little girl!  Our Peyton is finishing her Junior year at Freed Hardeman University, and is going to be an amazing Elementary school teacher.  She has wanted to be a teacher as long as I can remember, and does a great job at Bible teaching too!  Her love and understanding for special needs kids is so needed in an inclusive classroom, and I'm sure she will find that change from college student to teacher a very quick one!  Our Camille is studying Psychology at WKCTC, and is finishing her Freshman year.  She is very studious and although this last year has been a difficult one for her with her health, she is strong and resilient and making great grades! Chad, my husband has taken on a new job, and we really love it, he travels but is home much more than any of his previous jobs, and it's a blessing. 

Change is tough when the house is empty.  It's tough when things that were once a common day occasion are now the rarity, i.e. a family meal with everyone here!  But with that change, there are opportunities for things that can be more meaningful as we age.  I miss the day to day running, getting kids to school, therapies, activities, school extracurriculars.  That was certainly an age of meeting myself coming while I was going!! Now, things are much more purposeful.  A visit from my kids is much more special, a weekend where all are home together is planned well in advance.  How to spend my day is much more specific, more planned, much slower paced. 

So what do you do when things have changed so much?  What do you spend your time in?  It is a blessing to me to be able to study the Bible more.  I am involved in the Digging Deep Bible Study by Cindy Colley, it is a true challenge to be in the Word each month. If you don't participate in it, you should!  Also, preparing for VBS and our regular Ladies Bible Class study, and other extra reading that goes along with the sermon series at our congregation, it keeps me busy and in the Bible regularly.  It's a good change, to have more time to devote to that. 

When you are a mama with little ones, just being a worship alone is a great feat.  But it's enough, your children understand the value of worship, they know God is more important than a school activity or a ball game, or a TV show, because you stopped everything, and dressed them, and wiped their faces clean and took them to sing and pray and give and listen to His Word.  That in this day in time is an admirable mama.  Things will change, but when you've grounded them in the truth, they will grow to appreciate those times to worship.  Wednesday nights are a break for the soul from this world, and you will see your babies grow into teens that can sit there, and be refreshed by their teachers, and by participating in worship.  Its good. 

And when they grow up, and your time away from them grows bigger and they sit next to you in worship and sing with you and you see them love God...the change is all worth it.  The growth they have in the Lord is awesome.  You will draw strength from them, yes the same ones you had to feed cheerios to non-stop to keep them quiet.  They will remind you of the importance you placed in worshiping God, by the words they choose to encourage, by their meeting you there at worship, by their strength in difficult times, and those babies will be your Sisters in Christ who are helping you on your journey. 

I am blessed with my girls and my husband, and by having more time to study.  Change can be very good. In the years to come, I hope my time in the Word can help them through difficult times, and I know there will be great times too.  It's all part of being the older helping the younger, all through life's journey.  Titus 2:3-5. God is Good.

WORDS

There are a LOT of people who have a LOT to say, nowadays it seems as though the most words are said by our televisions and not by people.  I myself am guilty of liking peace and quiet, and go some days all day long without saying very many words at all.  But what happened to conversation?  Most people walk around (or even drive) with a phone in their hands without saying one word out loud to an individual on the other end of the line.  Nope, we Text, we Snap, we Instant Message, Tweet, Facebook, Instagram, each other.  There are words, but they are not expressed.  Emoji's have evolved to try to help deliver our true angst, delight, sadness, disgust, happiness, or how hard we laugh.  And I have to wonder what our future is going to be like for our children.

You can order everything you need online.  You never have to walk outside your door.  You can work from home. You can bank from home.  You can pay your bills online.  You can go to school online.  So outside of your home, there is very little you would HAVE to do, if you'd rather set your life up to be at home.

Yet, the Word says, "love your neighbor" Mark 12:31
and, "let him speak as the oracles of God" 1 Peter 4:11
and "let your speech be always with grace.." Colossians 4:6

So how many words do you speak that show love?  Do you know your neighbors?  Do you speak to them or visit them or do you even speak to or visit your friends?

How about speaking as the oracles of God?  Do you share the Word with others?  Do you talk to people about Christ? Do you read your Bible so you can share it?

Speaking with grace is tough sometimes, especially when people are hateful, or rude, or don't understand.  Yet, can you speak with grace to others?  Do you even spend any part of your day showing your appreciation for God and his grace to those around you?  Did you say ANYTHING to anyone today?

Sometimes I wonder what Emoji God would like to text us sometimes.  One thing is for sure, there is no excuse not to speak and engage and invest time in others.  Lots of times in our lives, family or friends consume and demand our time and attention.  That's understandable, I've been in that spot for a long time.  But when we have the opportunity to talk to others, show our love for others, share the Word with others and show God's grace through our actions and our words and we embrace that opportunity- think of what an IMPACT that can have on others.

People of the world these days are wrapped up in technology, tv, work, success, entertainment, etc.

THINK of how shocked and grateful, and impressed they could be if we just reached out and used the right WORDS.

What Our Future Requires

Today, with all the unrest in our country, the killings, the hatred, the rioting, the belittling of those who are different- (including Christians) it is time that we look at the root of all these things.  What causes people to disregard others feelings to be ugly to them?  What causes people to feel it is okay to destroy others property?  What causes people to hate other people? What causes people to think that killing an innocent person is okay?

One thing is lacking.  The RESPECT of others.  If you respect someone, you VALUE them.

Think about that.

If you value humanity, if you are taught to respect others:

• You will strive to love others.  God tells us to love others.  He gave His Son to die for EVERYONE.  Everyone is worthy of His death, His sacrifice, His love.  We should love others as Christ loved us.  You know those people who run to save others, even at risk of their own lives, that's the kind of people we all should be.  We should find the good in every person, it's there- no matter how hard you have to look- we are all made in the image of God (Gen. 1:27)- GOOD is in there.  

• We will value what we are given.  Things are temporal, they are all blessings.  God gives us everything of which we have need.  Matthew 6:26, He cares about us, he provides for us  When we understand this we would never destroy others property, steal, or complain about what we have.  We know God gives us all that is necessary to live a good, godly life.  (2 Peter 1:3-4).

• You will value words.  You won't text hateful things. You won't use curse words, or take God's name in vain.  You won't attack people for believing in God, you won't attack people who don't.  You will show concern, you should share HIS WORD.  You will apologize if you hurt someones feelings, and you will try not to ever do it again.  You will forgive people when they hurt you.  You will strive to uplift, encourage and show other Christians that you appreciate them.  God gave us his written Word, it's important, words are important.  Choose wisely.

• You will value life.  You will live in a way that shows that you understand the great creation of life.  You will understand that God gives life.  Job 33:4 "The Spirit of God has made me, and the breath of the Almighty gives me life."  He made each and every one of us.  

God gives us all the option to choose.  We don't have to live a good life of service to Him.  We don't have to read his Word.

We can hate, fill our lives with ugly words, look out for ourselves and no one else, cry and pout when we don't get our way, we can destroy others' property, we can steal, cheat, lie and kill.  We can, we can do all that and you know what?  God still loved our dirty terrible sinful selves enough to let his child DIE for us. The big problem most have is, they don't want to quit doing for themselves, they serve self.  They serve what "feels" good to them.  IF you serve God - you don't "DO YOU" you "SERVE HIM" - that requires you obeying His Word.

He DIED for you.  He valued YOU.  He respected YOU.  Turn away from hate.  Turn away from words that are vile.  Look to do for others.  Learn to cope with disappointment.  Take care of what God has given you. Share that with others.  Tell the truth.  Value LIFE.

 LIVE IT FOR THE ONE WHO DIED FOR YOU.

Be the Blessing.
Beth

It's been a really long time.  Things in life have a way of consuming your time and your energy.  Our lives are so busy these days.  I started this blog back in 2011 when we lost Caleb, it was a means of therapy for me, and was great for that.  I continued it into 2012.  Then I shifted my focus to my family, our girls, and working with special needs kids at school.  I am still substitute teaching currently.  However, I am slowing things down in life as best I can.  I am trying to make more time for studying God's word.  I am first His child, and I want my blog to share that with this world.  So, from time to time, I may write about family, or hopefully something encouraging to you to help you in your life journey. Most of the time, I will focus on a part of the Word.  I hope you will follow my blog.  If you ever have questions or comments, please share.  I am leaving the title of my blog "Caleb's Mom"  because I'm still his mama, and it reminds me of the journey I'm still living here, and the goal I have to see him again in Heaven.  I hope that your goal in life is Heaven too.  And that's where this blog will begin its new focus.

Hebrews 13:14 "For here have we no continuing city, but we seek one to come."

11 in Heaven

Tommorrow.  Tommorrow is Caleb's 11th birthday.  It pains me that he is not here. But I am in the same turn so grateful that he is at peace and not suffering- God has my little boy in His hands. I know many families who right now are going through similar circumstances of taking care of their beautiful children who they will lose at an early age.  Some of them are already on Hospice, some are being treated still, but the options are minimal.  Children with epilepsy who are dying need comfort, help, reassurance, love.  Their families are giving constantly to keep the child as happy as possible and to keep the symptoms, and seizures specifically under as much control as possible.  THAT IS A DAUNTING TASK. 
Being in that place, where you are bridging your child from this world to Heaven.  It is overwhelming. There are the daily tasks that keep you busy from sun up to sun down, and throughout the night at times.  There are the emotions that you push aside just so you can get through the day.  There is the rest of the family that needs your attention, not to mention clean clothes. 
Please reach out, if you are family--do whatever it takes to HELP your family through the day.  If you are a neighbor, cook a meal, come over and do the laundry.  If you live out of town, send them pizza one night, send them Walmart cards, or just a card saying you are praying for them.  Be a friend.  Be an encouragement.  And above all, if you can't lift them up- get out of the way.
To parents who are in this position, don't let anyone affect your focus.  Your purpose is to help your child, and if anyone keeps you from staying the course or emotionally is taxing on you--kindly tell them to move on.
Remember in the Bible where Moses grew weary in battle, and as long as his hands were raised they would triumph?  Aaron and Hur in Exodus 17 held up his arms.  I always said when taking care of our Caleb "If you can't hold up my arms, get out of my way!" 

I miss him, every moment of every day.  I hurt for him so much it makes me physically sick.  But is is whole, seizure free, and in the best place of all, with God in Heaven.  I hope that I can live my life in a way that "For to me to live is Christ, and to die is gain".  Phil. 1:21.  Caleb was perfect other than his illness.  He made many want to live a life as Christ would have them.  He brought out the best in all of us.  He gained Heaven.  One day I will get to be there too.  Until then, fight on.  Live and show Christ to others.  Live and Be The Blessing.  Love, Beth

Helping Patients Healing Families

It is tough.  Having a child with special needs is.  Knowing that their life on this earth will be shorter than yours as a parent is overwhelming. 

Below is the link to a recent presentation I gave in Paducah, KY.

I had the privilege of sharing our story and giving insight to the lives of families with children with chronic illness at West Kentucky Community and Technical College on August 20th.  I was overwhelmed with the interest, attendance, caring and concern of the students.  Many of them were nursing students and staff, or students working toward other degrees, perhaps in social work or psychology.  My first audience contained community members, staff and some students.  There were around 60 there, it was nice to speak to them, and many had really great questions.  The second speaking event had community members, friends, staff and students, I estimated around 200 in attendance.  I was encouraged again by the kind attention and insightful questions asked.  I always say there is no question that is "off limits."  I received a standing ovation at the end of that presentation.  My heart was overwhelmed with joy--for my beautiful child and precious family that have walked the journey and carried me with them.  I AM SO BLESSED.  Caleb continues to touch the lives of families walking similar paths, impacting the hearts of parents, influencing the care of future health professionals.  His life continues to bless me, every day, to live life with LOVE at the center. 

Blessings,
Beth

It's Been A While....

Dear followers,

It's been a while since I've posted.  After my Addison's disease catching up with me in February of this year, and about a month of recouperating, I decided it was God's way of telling me to slow down, so I have.  Our lives have been changed so much since Caleb's passing, that I think most of last year I tried to keep very busy just to keep from feeling lost.  After caring for him 24/7 for the majority of his 9 years here with us, I am still at a loss of what to do with me.  I am still a mom to our 2 beautiful girls, who I feel that I have missed out on a majority of their "growing up".  And finding them at 15, and 13, is overwhelming.  My husband, Chad, took a new job in July last year, when Goodyear closed.  It has been a blessing for him to have a job, but the financial adjustment and his travel has been another big change for us.  We had our home for sale, and that didn't work out.  So, along the way of change, the last year and 1/2 has been full of it, and things still seem uncertain. 

However, all in all, we are happy.  Caleb is in God's hands, and as much as it pains me, it still comforts me to know that.  I am greeted most every week by someone reaching out to us either in a letter or comment or post that reminds me of how he touched the lives of others and continues to, and that is a blessing.

The most important reflecting I've done over the last few months is finding that time spent here sharing moments with our family and friends is worth more than anything this world has to offer.  And, that Heaven is the only thing in this life worth working toward.  There are things that have to be done to sustain us here, but throughout all this change in our lives, there is one thing that remains constant, God.  And for that I am so grateful.

I have considered many opportunities over the last several months, jobs, new ventures, but none of these will bring happiness, they will just bring "things" to our lives, and that is a change that this family doesn't need.  There have been years of stress, fear, anxiety and worry in our house, and for now, with Caleb at peace, I want that for the rest of our family.  We have the struggles of everyday life, but all in all, if our focus is in the right place, all of those little things will be taken care of.  God was with us through all the good days and difficult days with our sweet boy, and He will be with us now.

I am writing a book now that is a study through the Bible in Grief.  It has helped me a great deal to apply what I learn from reading to my own personal grief and to share that with others.  When it is finished this summer, I will be turning it into an interested publisher and hope that it can help others through grief.  It truly is universal and can cause so much heartache if people don't allow themselves to grieve. 

Life is change and uncertainty, but in the same hand, joy and love and hope.  Regardless of where you are in life, find the joy.  Caleb had epilepsy, but not one day of his life did it define who he was.  He was brave, kind, loving, content - every day.  Though the days are sometimes tough without him here- I will continue to try to be brave, kind, loving and content- everyday.

Blessings to each of you,
Beth

Talking About Real Life

Today I am embedding 4 You Tube Videos.  All of these were hosted by GBN in Chattanooga, TN.  It is a series of "Shelter in the Time of Storm".  If you have a child/family member that has been through health problems, it can benefit you to watch.

 The first 2 episodes are about my book, "Giving Him Back To God"- but specifically focuses on my journey with Caleb as a mom. 

Episode 1

Episode 2

The 3rd episode is about our marriage, 80% of marriages of families with special needs children end in divorce- we hope that sharing our experience will in some way help others. 

http://www.youtube.com/watch?v=vDtbjHpOBQw&list=UUiazR2SxWKAUF39SyuNHcTQ&index=2&feature=plcp

Episode 3

The 4th episode is about our TEAM, Team Caleb, and my sister- my "extra hands" who was such a support to me and our 2 beautiful girls- Peyton and Camille- share their experiences with their brother as only siblings can. 

http://www.youtube.com/watch?v=H6lAwAksdnQ&list=UUiazR2SxWKAUF39SyuNHcTQ&index=1&feature=plcp

Episode 4

FOR MORE INFORMATION ABOUT:

Epilepsy

These Programs

Beth's Book: "Giving Him Back To God"

Speaking Engagements

Visit: WWW.CALEBSMOM.COM



The Notebook

Finding a way to make sense out of a day in the life of a person with Epilepsy can sometimes be a challenge--why the increase in seizures today? what did we do differently? what have we changed? All of those questions become the most important questions in caring for your loved one.

There are many ways to go about organizing yourself, but clearly- keeping good records can do multiple things:

1. Give a caregiver a sense of direction in where the loved ones' baseline really is.
2. Allow better communication between the patient and doctor.
3. Increase the neurologists knowledge of the patient.
4. Better quality of care for the person with Epilepsy.

I have seen each of these things be true in our life with our son, Caleb.  In a sea of seizures, it is very difficult to see a pattern without knowing where a true "baseline" of daily activity really lies.  Sometimes 100 a day was the norm, but there were days when 1 seizure alone lasting TOO long was enough to know THIS IS NOT NORMAL.

Keeping good records let us better communicate with the doctor what was going on, what medications we had started/stopped/increased/decreased.  This is imperative on the part of the patient.  Many doctors are dealing with many, many patients--reminding them where you are, what medications you have been on, etc. is extremely important.  You may need to record Ketones, temperature, input/output, as well as seizure activity.  Also, you may need to record illnesses, runny nose, anything that can set off seizure activity.  If you know when it started, a doctor can better know how to treat the patient.

A neurologist is a doctor, an epileptologist is a doctor, both with TREMENDOUS amounts of knowledge and expertise when it comes to seizures.  However, NO ONE knows the child/patient better than the caregiver. Period.  You are the expert when it comes to your child/loved one.  So, if you are keeping good records- it is a win/win situation.  The Doctors get a better sense of the patient, they know quickly what you know- because you have recorded it.  There are no more "When did he have his last seizure?" questions that are responded to with "I don't know."  That should never happen.  If you keep records, you know, and when you are educating others about your loved one, they learn invaluable lessons.

The child/patient with Epilepsy can have better overall care because of good records.  For us, our Caleb shared many extra years with us because of good record keeping, great doctors who checked on us weekly, and because they understood Caleb, and became experts on his care just like me.  Our efforts kept him as safe and happy as long as possible.

My method of recording information was a simple notebook, each month/half month we started a new one.  I logged monthly totals in the back in a chart.  Now, a year later I have found a remarkable FREE website that assists you in record keeping and logging other medication changes, increases, decreases and the overall feel of the patients day.  The site is : http://www.seizuretracker.com/  It is an amazing tool, and some day I hope to log all of Caleb's information there just to have.  There are charts/printouts that you can take with you to the Dr.'s appointment and it is forever saved online! 

A Notebook, Log, Online, whatever method you choose, keeping GOOD records can be of GREAT benefit to any caregiver.

Best wishes to each of you on your journey,
Remember each day to:

Be The Blessing,
Beth

GIVING HIM BACK TO GOD

Sunday, January 15th, will be one year since our precious Caleb left this earth and opened his beautiful brown eyes to see the face of our Lord in Heaven.  What was the worst day I have ever experienced here in my life, was the most wonderful day of his.  His life, his spirit, his love will carry me through the rest of my life- determined to be the kind and patient person that he taught me to be. 

What started out as a book about raising children with special needs in 2008, changed to a journey through his life- after he passed away Jan. 15th, 2011.  The journey was overwhelming for me to even write at times...I would have to stop, and regroup and then start again.  Writing about REAL life isn't easy.  But it was therapy for me.  I realized while writing, that we learned many things from Caleb, that we'd never have learned so early on in our lives had he not been with us.

I am amazed at how he exhibited all the fruits of the spirit:  love, joy, peace, longsuffering, gentleness, goodness, faith, meekness, temperance- at 9 years old.  Especially since he'd suffered for years, been in pain, was unable to communicate with words, lost numerous abilities...things that normally would drive a person into despair, depression, and turn them away from Faith. 

Grief is something we all experience, or will in this lifetime.  How to live with grief is something we learned to do when Caleb lost ability, we grieved a little at a time.  When faced with losing him forever, I knew this grief would continue the  rest of my life, but rather than crippling us, it has made us as a family, more determined- to LIVE.



God blessed us for 9 years, with the most precious child, and now, his story, and the journey of our family with him is now able to be shared with the world. 

My book, Giving Him Back To God is available at Amazon.com in paperback and Kindle.  I hope that you read it and learn that no matter where you are on life's journey, no matter what struggles you face, there is a way- to Be The Blessing.

Love to all of you,
Beth
http://www.calebsmom.com/
(please also check out my new website)

Little Things that make a BIG difference

Most every day I follow up with families I have met who have children with ASD/Epilepsy.  I wish sometimes I had a jet and could just fly over to wherever you are and help out for a few days...but in the real world, that isn't possible.  So, I thought I would make a list of the little things that always helped me make it through --and especially during busy months.

1.  Keep a bag at the door.  This bag should contain anything you need on a regular basis for your child, a days worth of meds, picture cards, sensory toys, favorite items, a change of clothes, diaper, wipes, and a favorite DVD or two.  If you have to rush to the ER, you're ready, if there is another emergency- you have enough for a day- and the rest can be brought to you later...if you make a trip to a family members home, there are things for your child that they enjoy that will keep them happy.

2.  Keep two copies of a list of your child's CURRENT medications in your purse.  You'd be surprised how that in an emergency it comes in handy.  Or if you are at the doctors office, you can just hand them the list to attach to your file--it saves time and you don't have to sit and spell them out for the nurses who are unfamiliar with Anticonvulsants.

3.  Make a Procedure bag.  Get a gallon ziploc bag and put the following in it:
*EEG wire (save some when they have one done)this is a great visual for kids so they know if they are going to be "plugged in". 
*A "No No" - this is a small splint that covers the whole arm and velcros together-if they've had an IV, they've probably had one on- keep it. (some hospitals don't keep them and it comes in handy) 
*Children's Anbesol (night time) you can put this on the area prior to a stick and it "numbs" it some to keep it from hurting quite so bad.
*Take pictures of your child in hospital situations and then keep them in this bag---when they see themselves in a hospital bed, they know what to expect.  This is especially important for nonverbal children. (Also take pictures of their regular physicians, so they can anticipate a visit.)
*Anything that can help you and your child get through a particularly difficult procedure, put it in there ( favorite band-aids, a special toy, stickers they really like)
PUT THE PROCEDURE BAG IN YOUR BAG AT THE DOOR.

4.  Keep a list of your child's daily schedule inside the door of your medicine cabinet.  If something were to happen to you as a caregiver--somebody needs to be able to look at the schedule and be able to care for your child.  This should include all med times and doses, any other medical therapies, nap schedule, and bedtime schedule.

5. Daily record.  It is important for you to keep a log of your child's successes, changes in behavior, seizures, bowel changes, illnesses, and any medication changes.  With epilepsy, when your child has breakthrough seizures the first question a doctor will ask you is "What has changed?"  If you don't keep a record, you will have no idea.

These are just a few ideas, but were some of the most helpful to me in dealing with a chronically ill child.  You never know where you will end up in a day, so being ready at a moments notice, will give you peace of mind and allow you to BREATHE.  Taking a moment every day, just to yourself, even if it's just 5 minutes, can also make a big difference and can help you recharge.

Little things, and a little organization can make a big difference, for you and your child.  Take the time to implement them and then you will be prepared for anything!!

Blessings,
Beth

Food for Thought

November is National Epilepsy Awareness month, and on the 7th of this month, the birthday of our precious Caleb.  Many are aware of Epilepsy, of its existence, but beyond that- to really be compassionate towards those families dealing with Epilepsy, to help them, to be supportive of them- that is an even bigger goal.

During this season, it is difficult for many with Epilepsy or other disabilities who have food restrictions.

So many get togethers and holiday celebrations rotate around FOOD. 

For those with allergies, make sure and remove all ingredients from your home that could be a problem for any guests.  Reading labels is important.  And make sure you let others who are bringing foods to your gathering about any allergies.  This makes it so much easier for small gatherings.

For larger gatherings it is easier to make foods ahead of time and place them in serving size portions and freeze them individually.  Then you can take out SAFE FOODS as you need to in an individual size.

Our Caleb was on a gluten/dairy/yeast free diet as well as the Ketogenic diet (a modified dairy free version) for his health.  This was extremely difficult to follow but it was necessary to follow for Caleb's well being.  It was difficult to be part of Thanksgiving and Christmas...but I made ahead foods for him and always put them on the same plates that everyone else had. 

The hardest part was when we moved to tube feeds, for me. For the first several months we didn't eat anything around him and then later we were diligent at making sure his favorites were no longer in the house.  He adapted so well.  During holiday times we always made a quiet safe place for him to be with his favorite things.  Just being with him was the most rewarding time...so think of that if you have a loved one who is unable to eat.  Just spending time with them is a blessing for them and for yourself.

Make the most of the holidays with your family and while the mountains of food will be present--don't let that keep you from being with each other and enjoying togetherness.

Those moments are the things to be most THANKFUL for.

Blessings,
Beth

Special Show On Seizure Dogs

Please check out this link:  http://www.everydayhealth.com/tv
 and find your local listings for a story today about Seizure Dogs from Canine Assistants.  Locally it will be on WSIL at 9 am in the Paducah area.  Please see a previous post about seizure dogs here on my blog Archive from September. 

Different

We're all different.  That is what makes us unique.  So when many will say just that, and how beautiful different is, then why are there so many stereotypes, social stigmas and generalizations made about people with disabilities? 

If you are reading this blog, you likely have a connection to a person with epilepsy.  Our son, Caleb, dealt with the sterotyping of "Autism" when he was first diagnosed with that, and then we dealt with seizures and Epilepsy.  Once he was too weak, and we had to use a wheelchair for him- most people were kind, but they talked as though he weren't there.  Before the wheelchair days, I'm not sure what they thought...I usually focused on Caleb and helping him- instead of dealing with the looks, and negativity.  I am a pretty thick skinned person- however, it is difficult to deal with glaring eyes, sighs, and "deal with your child" looks when things aren't going well.  But, I quickly decided to not care about what others thought, and do what I needed to do- which was take care of Caleb.  His needs came first- regardless of where we were, what was going on, or who was around.  We did not restrict what we did with others, as long as he could tolerate it physically.  We in fact did as much as possible with him for as long as we could- just not putting his health at risk. 

Different is okay, in fact in our experience, without different, without Epilepsy we would not have met some very beautiful people that helped us through our journey.  Caleb's journey was full of difficulties, but he taught us so much from his short life.  Learning to live, to find joy in simple things, to smile and cherish it, to be grateful for all we are so bountifully blessed with, to find hope in the darkness and to believe that different really is beautiful- these are just some of the many lessons we have been so blessed to make a part of our every day living.

Epilepsy should not claim you, it should not define you or your loved one-- no disability should.  Hold up the hands of the child or family member with disabilities, treat them with love and respect, insist that others around them treat them with love and respect.  Teach others about Epilepsy, find ways to share information.  Be the Blessing.

- Beth

Seizure Dogs

While we never had a trained seizure dog, I can tell you from experience, that our sweet dog, Abby, knew when Caleb (our son) was seizing.  She knew he was different from the start.  He didn't know how to play, so when we'd go outside, she'd gently take his hand in her mouth and lead him around the yard.  He loved her, and would just smile and laugh.  When his seizures started, she would lay quietly on the floor wherever he was, and she would stay until they quit.  When Caleb passed away, she sat on his place on the loveseat and whined for him, she knew he was gone.

Dogs are intuitive, they understand words, they have heightened senses that we aren't in tune with.  When people have seizures there are chemicals in your body that are released that some dogs pick up on, there are also visual cues that many people are not aware of that dogs pick up on.  And a seizure is an electrical discharge, another thing dogs could potentially pick up on.

Many people with epilepsy also have other co-morbidities, such as developmental delay, or Autism.  Dogs can be trained to address whatever specific disability that a person has.  Dogs are social, and can be extremely beneficial to children who are at risk of falling or wandering.

There are long waiting lists, but Seizure Dogs can be obtained free of charge through some great providers:

Canine Assistants
www.canineassistants.org

Other Links (some of them providing for free):
www.autismservicedogsofamerica.com
www.PALSwithPawz.org
www.4pawsforability.org
www.protraindog.com
www.autism.wilderwood.org

For more information on benefits of Seizure Dogs, follow this link: http://www.epilepsyadvocate.com/resources/seizure-response-dogs.aspx?src=UCB-VMP-CNS-GOO-2010-0-PS-0&utm_source=Google&utm_medium=Paid%20Search&utm_term=dogs%20for%20epilepsy&utm_content=Canine%20Assistance&utm_campaign=VMP
Dogs are wonderful companions, and can be trained to truly be a help in the uncertainty of Epilepsy.  One of the biggest struggles and "disabilities" about epilepsy is not knowing when a seizure will occur, having a dog to be able to warn families, or to warn the individual is an amazing blessing. 

Blessings to each of you on your journey.

Beth 

Epilepsy and VNS Therapy

Refractory Epilepsy simply means that seizures (one or more)continue to occur although the patient is being treated with more than two antiepileptic drug (AED) during an 18 month period.

An option for refractory patients is Vagus Nerve Stimulation therapy (VNS).  This is a simple device that is placed in a pocket of tissue in the chest.  A wire leading from it to the left Vagus nerve in the neck is then placed and it sends an electrical impulse to the brain to "reset" it.  It functions similar to a  pacemaker. VNS Therapy is not a drug and does not interact with other medications. The VNS sends periodic stimulations to the brain which help to prevent sychronus neuron firings that cause seizures. Treatment is delivered at regular intervals all day, by settings programmed into the device by your epileptologist. 

Our Caleb had a VNS implanted in May of 2008.  While his response was not as dramatic as we had hoped in stopping his Tonic seizures, he did have his Myoclonic seizure numbers to go from 300+ daily, to around 100 daily.  That in itself was a blessing.

A magnet is worn by a caregiver or by the patient that is able to be placed over the VNS device when a breakthrough seizure occurs.  This "wand" is capable of delivering an elevated stimulation to the brain to try to interrupt the seizure.

I can remember at first making sure and timing every time the VNS would send a stimulation, but eventually Caleb's settings were advanced so that it was "on" more than it was "off".   The most dramatic thing we saw was during one Tonic seizure after he'd first started VNS therapy, while placing the magnet over the device- his seizure stopped.  Although this did not happen regularly for him, even being able to stop one large seizure was a glimmer of hope for improvement.

VNS Therapy should be viewed by the family/patient as a medication.  Although it has no typical side effects that medications can have, it is a treatment that has potential benefit.  Many are concerned that it involves surgery, but I can attest that it is minimally invasive. 

Over 60,000 patients have begun VNS Therapy.  Those who benefit from VNS Therapy can achieve seizure reduction and in some cases eliminate seizures completely.  The positive effects of VNS Therapy actually improve over time, sometimes taking a few months to a year or two to reach optimum performance levels.  Medications may be able to be weaned as a result of positive VNS Therapy.

Many anxieties exist with any surgery.  However, when a patient is refractory, VNS Therapy should be carefully considered.  For more information on VNS Therapy click here :  Cyberonics

Thinking of Caleb, and the many procedures he went through in his short life, I remember his VNS experience as one of hope.

Blessings,

Beth

Epilepsy Awareness

Talking about Epilepsy is easy for me to do.  As a parent of a child who suffered with intractable epilepsy, I wanted anyone who came into contact with our Caleb to understand his seizures.  I always talked to his classmates about seizures and autism.  And most importantly, I trained his teachers, aides, therapists, anyone who helped him through his day, about seizures. 

It is so important to share that you have Epilepsy with others.  If you are an individual with Epilepsy, creating awareness by sharing about your Epilepsy can save your life.  If you are a parent with a child who has Epilepsy, sharing their condition with teachers, administrators, coaches, is vital. 

There are so many misconceptions about Epilepsy, some people may react incorrectly.  You may need DiaStat, sublingual medication or extra medication in an emergency.  Do the people that you have daily contact with know what to do?  Many people with Epilepsy may have a seizure that stops on its' own.  Going to the hospital is most of the time not necessary.  Would those around you "overreact"?  Would they respond correctly? 

Being an advocate for yourself and teaching those around you about appropriate response to your seizures is necessary.  Don't be afraid to talk about Epilepsy.  Your local Epilepsy Foundation can advocate for you and can also educate employers, teachers, therapists, classmates and first responders on proper seizure response.  These programs are free. 

Caleb never finished his Kindergarten year of school.  He became too ill, and contracted illness that exasperated his seizures.  His last day at school, he went into Status Epilepticus (prolonged seizures) and his teacher called me.  She knew that he needed DiaStat and I told her to administer it as I drove to the school.  I had trained her at the beginning of the school year, and she knew just what to do.  Her being able to do that allowed his seizure to slow.  It was a blessing to have trained staff who cared so much about our sweet Caleb. 

Knowledge corrects improper stigmas about Epilepsy.  Knowledge allows proper response.  Knowledge creates compassion.  Teach others about Epilepsy, or ask for a free presentation from your local Epilepsy Foundation for your support team. 

To truly be "aware" of Epilepsy, educating others is important.  If you don't know proper response for Seizures- see the Seizure First Aid blog entry on the right. 

If you or a loved one has Epilepsy - make those around you Aware.

Grief

Grief is a difficult emotion to "work through".  Mainly, because many people, including myself, don't want to not grieve...because the grief is the feeling in your heart, that hole, that void, that place where the memory of your loved one now lives. 

However, along our journey with Caleb, one thing was apparent to me, we grieved him as he lived.  With each loss, we grieved.  We grieved with the diagnosis of PDD-NOS (Autism).  We grieved when he had his first seizure.  We grieved when his seizures continued to persist.  We grieved when he lost speech, when he lost his ability to walk, when I had to buy his first wheelchair, when his seizures became 100's every day, when he lost his ability to eat, when his stomach would not handle his feeds, when he had to have a GJ-tube placed, when his feeds had to be continual-and he lost weight.  We grieved terribly when he developed aplastic anemia, and yet during all this....during the grief, through the grief, we chose to help him live.  We hurt for him more than for ourselves.  We hurt for his quality of life, we wanted him to be happy and not to hurt.  Grief is loss. And you can grieve the living. 

If you have a child with special needs, you grieve.  Many days are filled with happiness, and through the everyday struggles you learn to appreciate the little things- the real things in life that matter.  But in the back of your mind, there is that hope as a parent, that somehow things could be better, somehow things could improve for your child, and you grieve that loss for them.

Caleb never grieved.  He didn't feel loss- he adapted.  I was so upset when he couldn't eat that for 2 months we did not eat where he could see us.  I didn't want him to "miss" it.  I would give him an empty tube to hold as I would bolus in his formula.  One day, he crawled to the kitchen and pulled up to the counter and instead of standing in front of the microwave (his indication that he wanted microwaved bacon) he grabbed the empty tube.  I cried.  He knew that this was his was of being fed- and he was right, it was time for his feeding. 

Children are so amazing.  They are stronger than we are as adults.  They adapt to situations when we ourselves are grimacing in anxiety and hurt for them.  It is okay to grieve the losses for them, that is what parents do.  However, finding a way to help them live in whatever way they can, a day at a time, that is the job of a parent of a child with special needs. 

Find a way to get through each day.  Find at least one moment, one special time with your child to just be "mama" or "daddy" and share joy with your child.  I know some days for us it was watching Caleb's beloved Barney video for the 5th time- but if it brought a smile to his precious face, it was worth it.  Some days a swing (one of the adapted swings) at the park would bring a smile, and some days the hour long pack up/drive/unload only made him agitated-but it was worth the try. 

Loss happens to everyone in life.  Along the way we all grieve something or someone.  Finding a way to overcome that loss and to be determined to find a way to make the most of life- there is the key to overcoming the feelings of despair. 

This Friday marks 6 months on earth without our Caleb.  We no longer grieve for his losses, for he has gained the glory of Heaven, the riches of health, and his spirit is no longer trapped in an ill body.  We know that the grief now is purely for ourselves.  The loss in our hearts, we fill with our memories of Caleb and our love for him that will continue to help us - to live.