Social Media

I am, admittedly, addicted to Facebook. I am connect to it all the time, I feel compelled to check it frequently, keep up with my friends and activities. I find myself 'hanging out' there when bored.  I have been distracted by it and failed to get things done.  I have thought this addiction not very healthy and have seriously considered dropping my account. No one should be this 'attached' to an impersonal environment on the internet. 

Facebook has been accused of being impersonal and false. Yes, individuals pretend to be something they are not on-line. Real-life relationships are not the same as on-line relationships. For good and bad they are just not the same.  Words on a screen does not show voice inflection or body language. Some things are taken as offence when meant in jest. Hurt feelings run amok. Some fall in like or love with a personality only to meet in real-life the complete opposite. The internet is a mask that covers all body language and does not reveal truth or lies.

This past few weeks, I have seen the positive side of social media.  As a friend has fallen ill with a swift moving, fatal disease, the social media has allowed her friends to connect all around the world.  The internet has provided a way to share information on her condition, to share our concern with her and her family, to pay tribute to her.

I am watching as the concentric circles of her friends grow, take up the cry on heaven's doors on behalf of my friend and family.  I have gained some friends through this on-line connection.  We have shared each other's pain and encouraged one another.

It may be impersonal but so much less fatiguing that making many, many phone calls. Many more people are aware as the immediacy and the scope of the internet. In fact, people world wide are aware of the situation.


I have been able to connect with family who live around the world.  Find friends from my youth and of days gone.  Finding people has been one of my greatest thrills.  I have even met a few new people, through mutual friends.  I have shared joys, sorrows, achievements, and disappointments.  I have had the opportunity to respond to a friend's need and promote causes I believe are worthy.  I have seen pictures of places I have not been able to travel.  I have gotten advice - it is a perfect environment in which to ask, does anyone know.....?   In a moment, I can share with all my friends. 


Yes, there are pitfalls to social media, no doubt. I agree with some of the naysayers. But there are also positives. As with everything in life - - everything in moderation. It applies to nutritional diets as well as social media, television, or any other vice.  Now  to tame the addiction in my own life and bring it back into moderation.

Guilt of a normal life

It is a new day.  I almost feel guilty for going about my day in a normal way.  Everything seems to be alright, I am healthy, my family is healthy, we are not suffering any significant crisis.  Really, my biggest complaint is that weather isn't very spring-like today and my niece doesn't like to have her diaper changed.

Today I get to spend the day with my husband, DD#2, and baby niece.  DD#1 will return from school this afternoon.  Later in the evening we are scheduled to meet friends for a fish fry.  I'm sure it will be an enjoyable evening.   Soon it is Spring break for our family and we are looking forward to a few days together on mini-vacation, a break from the routine. 

It is not fair that everything is normal for me.  When nothing is okay or normal for M or her family.  They are facing the harsh reality that we are mortal beings.  It is so incredibly unfair. 

Today my heart is aching for her children.  How will they do in school today?  Can they focus?  Is their homework complete?  Did someone give them a hug on their way out the door?   Do they have a lunch?  Who's doing laundry?  All these 'Mom' concerns....  life will never be the same for these boys.  Makes me sad.

As I look forward with anticipation to the future, I know they are likely dreading the future.  The boys are young, but discerning.  I am certain they understand the gravity of the situation even if they don't understand what is happening.  After all, all the adults around them are sad.  People they haven't seen or never met are showing up. 

The boys were there as I visited the other day.  We all put on a face of being strong.  The 12 year old made us laugh at his technology prowess as we adults struggled with it.  The 8 year old found the candy and added decorations to the door.  Acting much like they should at those ages.  Yet, my mother's eye saw their confusion, their uncertainty, the anxiety of the unknown and lack of understanding.  They were so tender with their mom, hovering near her bed, stroking her arm, and probably wishing we, her friends, would leave so they could have time alone with her.  I know they were wishing she would be fine and return home with them.

I was touched by the beautiful flower in M's hair.  That was a gift of her youngest son.  It took away some of the austerity of the situation.  Such a thoughtful act for the mom he loves. 

I attempted to draw the older child out by asking him of school.  Even though M cannot communicate the way she use to, it was evident she was interested in what he had to say.  We discussed his studies and carried on a conversation.   

Each time one of the boys drew near, M would follow them, her facial features would soften, or sometimes have a look of consternation with something she so wanted to communicate.  She loves having them near her.  When she couldn't find them in the room later, she seemed to have a bit of anxiety but relaxed when we told her they went home so they could attend school the next day.

So, I feel guilty.  Guilty that I can hug my children while she can't any longer; guilty that I can continue to care for mine as she is losing the ability to care for hers.  Guilty that I can't do anything to make it better.  Guilty that I can look to the future and plan. 

I am resolving to make the most of moments as much as possible.  To tell my family that I love them, appreciate them, cherish them.  Share my "wisdom" that I want to share, now while I can... one never knows when that opportunity will vanish.

CJD is a cruel, wretched disease.  It is unfair.

CJD, Friendship, Compassion

Yesterday, I encountered Cruetzfeld-Jakob Disease face-to-face. My heart was already hurting for my friend M and knew she was suffering. I read about the disease on-line and I followed M through our mutual friend C who had been visiting and keeping in close contact with M's husband. Yet, nothing prepares you entirely for the personal encounter.

I approached her room rather timidly. In a few of the other rooms, a television was playing or people were visiting. But mostly the ward is quiet. Not sure who or exactly what I would find, I made my way down the hall. C had alerted me that M was no longer able to verbally communicate and easily startled. C had been with her most of the day so I knew I would find her.

I was, frankly, stunned. This disease has robbed M of her vibrancy, her motor functions, ... her voice. Just a few weeks ago she was running errands, caring for her family, can this really happen this rapidly? She entered the hospital a few days ago under her own power.

I had trepidation prior to my arrival as it has been some time since our last real life contact. It is not clear how much M understands or remembers. Would my presence bring confusion and anxiety or would it be appreciated? I certainly did not want to add to her level of anxiety. Honestly, if it were not for the fact that C was there, I likely would have stayed home.

At the room's threshold I found M's husband, two boys, C, and two other ladies. Everyone greeted my warmly and introductions were quickly made for all. Yet the picture that made the biggest impression was the picture of friendship and compassion. C was at M's bedside, holding M's hands which were balled up tight into fists and helping M to gently lower her arms. C quickly explained to me that M had just been moved from the chair into the bed. C was helping her relax to lower her arms.

This picture of compassion and friendship continued through my entire visit. M would look to C for assurance or explanation. M tried with telepathy, intense stares to communicate. C would quietly assure her and console her. She only stepped away from her bedside to eat and take a short break. Her acts of compassion stayed focused until M feel asleep. Holding her hand and keeping her attention on her until C was certain M was sleeping as peacefully as one with CJD is able.

I am humbled to have C as a friend. I admire her so much for her loyalty, compassion, and love for her dear friend. I came home to look up the word compassion:

• Definition of COMPASSION: sympathetic consciousness of others' distress together with a desire to alleviate it

This definition falls short of what I witnessed yesterday. A picture of C at M's bedside would give a much more complete definition.


God fashioned our days even before we existed (Ps. 139:16), and we exist now only because “the breath of the Almighty gives [us] life” (Job 33:4). Though we don’t know how many breaths we have left—we can rest in the knowledge that He does.

Cruel realities of CJD - It is NOT fair

So I am now on a new day of trying to 'wrap my head around' my friend's illness, Cruetzfeld-Jakob Disease - see previous post.

I still have such a strong feeling of injustice. As an acquaintance, my current socialization with M is primarily through Facebook. Our last encounter, at a mutual friend's home a few years ago. I am not at all sure, in her current condition if she will recognize or remember me. Certainly her young boys don't know me anymore. That being said, I have enjoyed her friendship and her funny wit. As we both consider our mutual friend a best friend, that makes the two of us friends by default.

My current position in this crisis in M's life is to be a friend of prayer and to support our mutual friend - C. C has a big role in M's life right now, being a point person of communication for family and friends, as well as handling details of her life as business owner. My own heart breaks for M and for C. Witnessing friends suffer is not a pleasurable experience.

So disturbing throughout this process, is the rapid deterioration of M. This has taken place at seemingly lightning speed. There hasn't been time discussion, for planning, for.... saying good-bye.

Other disturbing instances have occured, such as, her moments of clarity and ability to speak. She speaks in context and has indicated that she knows what is going on around her. I can think of very few things more undesirable than being trapped inside my mind. M is intelligent, creative, bold, vocal, articulate... oh to be trapped, what kind of cruel joke is this being played?

It makes me want to vent! The bottled up emotions, the sense of unfairness. It is all too close to home. She is in my peer group - could this happen to my family? But that is self thinking - - M, her family, and C need support right now.

My sense of empathy is strong so my mind races through questions. Things to the effect of: Why? Why now? What about her new dream home that she is suppose to move into this weekend? What of her boys - - can they understand, is there someone to hug them? Doesn't she deserve the opportunity to live out her dreams of a beautiful home, watching her children grow, being old with her husband, being a friend, cultivating memories?

A friend from highschool really helped me in assisting in putting things into perspective of the unfairness: Quoting "...the only thing that makes life "fair" is that the Savior suffered for all of us so that He would know what we are going through and can carry some of the pain as we allow Him to take it. Remember that he will be carrying your friend and her family when they are unable to walk. Keep the faith!"

Yes, it is completely unfair that Jesus, who lived a short perfect life as man. He was God and Man at the same time. Innocent and punished for the sins of all mankind that started in the Garden of Eden with the "fall of man". Nothing much more brutal than to be beaten beyond recognition, and to die a horrible, painful death on the cross. And for what crime? The sin of the world.

My hope, my inner joy, is that death could not conquer, could not hold Him down. He defeated death by rising from the grave. Bringing hope to all who believe in Him. That He, Jesus, God's son, lived, died, and rose again. If we are to believe in Him we can have the hope and assurance of living in eternity with Him in heaven.

We are not promised an easy road on earth. Reading the Bible is evident of that... biblical men and women suffered and toiled here on this earth. A commentary/study book I began reading this morning on the biblical book Ruth of affirmed this by stating:

An honest reading [of the Bible] also reveals a God who doesn't explain himself. He didn't tell Job about his earlier conversation with Satan and he didn't give Naomi three good reasons why her world fell apart. Both sufferers went to their graves with their whys unanswered and the ache of their losses still intact. But somehow, because they met God in their pain, both also gained a deeper kind of trust in him that weathers adversity and refuses to let go of God.

The Gospel of Ruth: Loving God Enough to Break the Rules by Carolyn Custis James.

It does not make the pain of these trying times any less painful. But the knowledge that God does infact have everything in control is comforting. I need to remember, He does not have any need to explain anything to me.

Continuing to pray....

Creutzfeldt-Jakob Disease

Until the other day, I had not previously heard of Creutzfeldt-Jakob disease. Ignorance is bliss according to an old adage. I wish I was still ignorant of this wretched disease. I have come familiar with it as an acquaintance-friend has received this as a diagnosis.

My friend M is an outgoing, bubbly, creative, vivacious lady with two young sons. A few weeks ago she started to behave out of the character. Finally she was brought in by her husband for an evaluation. Two hospital stays, several mis-diagnoses later, we are sadden to learn the realities of this horrible disease.

Some information from http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm:
Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. It affects about one person in every one million people per year worldwide; in the United States there are about 200 cases per year. CJD usually appears in later life and runs a rapid course. Typically, onset of symptoms occurs about age 60, and about 90 percent of individuals die within 1 year. In the early stages of disease, people may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.

M is not the same wonderful person we all know from just a few weeks past. She is now having coordination problems, personality changes, and losing the ability to communicate.

I want to scream: HOW IS THIS FAIR?!?! She is young, she has children, she is nice, she is my friend! How does one who lives in my community, live in my sphere of influence contract a rare and horrible disease? How can I, little ole me, know one person in a million with this disease? This is not right. Those young boys should remember their mom for who she was not what she is becoming. Dang it - they deserve their mother period.

I am angry, I am sad, I am praying. In these times, I am so thankful for my personal relationship with Jesus and my Heavenly Father God. I know that He hears my prayers, feels my pain, and walks beside me. I don't understand and then I am reminded... My ways not His ways; my thoughts are not His thoughts. [Isaiah 55:8 (NIV)“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD.] But still.... I want to understand, I want it to be fair, I want to bad things of this world to go away!

But I can pray - my God is a God of miracles. He is Almighty, the Great I Am, the Everlasting. As I struggle with my own sense of injustice I try to remind myself that I do not know the whole picture. I cannot see the past or the future or the other surrounding issues. Only God knows all these things - - He is the only one to weave these things together for His Righteousness and glory.

An easy pill to swallow - No! An act of faith - Yes!

My prayers are for M, for her family, for her friends...

My children's education

I am not the person that follows the crowd. Not sure that I have ever been that person. I remember as a teen desiring to have the "right" clothes, friends, talents. But I never did have those things due to budgets and personality. Maybe this is why today, I am still doing things in my own style.

I did not figure that my children's education would fall into this category. As I grew up everyone I knew went to the local public school. There were a few that attended the private school, but I met those students when they entered our highschool upon graduating 8th grade and the private school. Many of my peers continued their education in college. I did not follow that path. I did get a few credits but I began working full time to support myself and live on my own. I didn't know what I wanted to be when I grew up (still don't) and decided to wait upon college until I figured that out. I saved myself a large amount of debt.

I got married and had children. As where to send my precious little people to school as they approached kindergarten age came into question. I visited the local elementary school. The same elementary that I attended beginning in the 4th grade. I met the staff, teachers, and observed classroom learning. I visited the private school. I did some preliminary investigation into homeschooling. I prayed, I stewed, I worried, I discussed, and prayed some more. I wasn't very comfortable with the idea of sending my nearly 6 year old away for an entire day everyday. I didn't like the smell of the school (it hadn't changed from my childhood). Yet, DH and I came to the conclusion that the public school was the place my precious, oldest child should attend.

Why not the private school or homeschool? The private school is pricey. Our funds were limited and we decided the education wasn't significantly better than the elementary school which our taxes were already providing for our community. Homeschool was a rather new concept for both of us. Although my dear friend, matron of honor in our wedding, had been homeschooled, we just did not know enough nor understand the idea. Add to that our beloved, oldest child is rather ironed will and there was concern about the battles that would ensure over ABCs and 123s.

Off she went on the big, yellow bus. I cried, I sighed, I anxiously awaited her arrival home. The day was long. 8:30 - 4:45 including transportation time. She came home tired, a little ornery, and not learning much new. My oldest began reading at 4 years old. Kindergarten wasn't very interesting or challenging. I began picking her up from school to shorten her day. School ended at 3:30 (ish). Living 4.5 miles from the school, I failed to understand the 1+ hour bus ride. Just a few our beginning frustrations with "the system."

I won't go into all the details. Suffice it to say, we were dissatisfied and wanted better for our children. By the end of 1st grade, we made a decision to take on the responsibility to educate our children at home. Our youngest child never did attend the local elementary school.

During the next 8 years I have had the privilege of watching my children grow, learn, and discover. Step by step, I was there as they learned reading, writing, arithmetic and more. Such joy and yes, frustrations. We had great fun with field trips, less fun learning the fine art of writing. Math came easy for one and not quite easy for another. The sibling arguments were and are fatiguing. The sibling creative efforts were and are inspiring.

In another blog I will discuss our decision to re-enter the public school in highschool. Why and how we got there. But for now...

Is homeschooling for everyone? Is it the best option for everyone? Are all public schools ineffective or 'bad'? Some in of my homeschool peers would say yes to all of those questions. I have not felt that way.

For everyone? Homeschooling is challenging and takes dedication along with self-sacrifice. Not everyone is fortunate to be able to be stay home full-time to raise and educate their children. Not everyone has the desire or the dedication it takes to be a parent and teacher full time.

Best option? I would like to say yes. Typically, no one cares more for a child than the parent. To see the child succeed, learn, grow. But again, if you don't have the time and dedication to put into it, likely it is not the best option. 

All public schools 'bad'? No. I have met some fantastic teachers, heard of some amazing schoolings. Met some fabulous graduates of the public school system. In my neighborhood - that is not the case in my opinion. But elsewhere, yes, there are good tax-funded schools.

I do not care for the attitude of some of my peers that homeschooling is the best option and frankly the only option. The opinion that the instruction is full of fallacies, that the children are trained to be subversive to parents. I ask WHO is raising your children? You or the school. Stay involved with your children no matter their place of education. You, the parent, are the biggest influence - you'd be amazed.

How you ensure your children are educated is a personal and very private choice. There is not a proper way, each person and family is different. Once again, I am doing things in my own style. Public school followed with homeschool and back to public school via the charter school system.