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)