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.

Hunger Outreach

Can my hands help eliminate hunger throughout the world? That is a large, seemingly, impossible task. And yet, for approximately seven years, my family and I have been participating in a ministry to feed the hungry children of the world.

It began as an effort to find a volunteer opportunity for my grade school aged children. Many organizations and places required a minimum age of 14 or so. I had children in age range of 6 and 8. We had a desire as parents to teach our children to serve in our community. But where, how?

We learned of a local organization, Feed My Starving Children. Their goal is to eliminate hunger. We began volunteering immediately. My children were young but they had the opportunity to touch the lives of many, many children who did not have anything to eat but mud cakes and rocks. Even at this young age, they could assist in packaging a rice manna pack. We were hooked! That was seven years ago.

Throughout the years we have held birthday parties packaging food, gone with our 4-H club, with friends, with our church family, by ourselves, almost any opportunity to that arose to package food! We have donated monetarily to help buy the food to package, we promoted the ministry, we have prayed, we have quite simply fallen in love with this ministry.

Tonight we returned with our church family. We again packaged food for the starving children of Haiti. We prayed over the food. More special this time is the donation my 13 year old daughter (who started volunteering at about the age of 6) gave from the proceeds of the earrings she has made and sold. She has a deep passion for this ministry. I believe it breaks her heart to think of a child without any food.

As a parent, I could not be more proud of my child. She has seen a need, considered how to help, and came up with a way to help. I know I was not this selfless as a teenager. She is my hero. She gives her time and talent to minister to others. Wow.

For more information on this ministry that is growing please visit their web-site www.fmsc.org. Find out about them, consider supporting them with your hands and/or your wallet.

Bass Guitar Gift

Last year, I gave my husband a gift of an Bass Guitar. I had no idea, at the time, how much he would appreciate this musical instrument. I knew he was interested in the guitar, he seemed to have a keen interest in bass, but he had never played this instrument prior to this time. He does have piano and violin background from his childhood and a great appreciation of music. A most sought after 'sound guy' in our local church.

He has spent hours teaching himself this instrument. Picking it up quite quickly. Within in just about two months, he began playing with our local church worship team (we attend a small church). Our previous bass guy moved away and there was an opportunity for him to join. A prodigy? No, but passable in our small rural town church, absolutely. We now own amps, yes more than one, music stands, sheet music, fret chording sheets, apps on the iPad, compressor thingys, etc. I am always in awe at my husband's industriousness and dedication upon any task at hand.

One of the more recent purchases is a training video by a reknown bass player, Victor Wooten. I have patiently 'watched' this video with him. Okay watching is a bit of a stretch, I am usually reading, folding laundry, or otherwise distracted.

One day shortly thereafter, I received a phone call from hubby asking what I was doing on a particular evening. It was a Tuesday evening which is a complicated day in our home, one in which our two children are going in opposite directions, as well as it is a day that I watch our niece. What's going on, I asked, thinking I was in for a fun day of juggling children on my own. As it turned out, Victor Wooten was scheduled to appear in our metro area. Of course, he wanted to go, and as it turned out, wanted me to go with him. Awwwww.

I rearranged our schedule, called in favors to transport our teens, and told him to get the tickets. I really had no idea what I was attending, all I understood was I had a date with my man. I've done something similar before in our relationship... while dating he asked me if I would go to a season of college hockey games with him if he bought me the tickets. I said yes, not having really any knowledge of hockey. I just understood it was time with the guy I loved. I have a love of our local college hockey team as a result.

This particular evening was filled with Victor Wooten band and Stanley Clark band. I was out of my element, not really understanding the music entirely, but appreciating tremendous talent. Learning to appreciate jazz, enjoying an evening of fine dining, and a date with my guy. Nine months ago, I never would have imagined that my gift of a guitar would lead to a whole new experience, a new world of music appreciation, a new love of my husband who never ceases to amaze me.

It will be difficult to top this gift.

Newborns

When my heart is heavy is when I feel most like blogging. Isn't that interesting. This past week I ended a Bible Study, had an unfortunate confrontation over a mis-understanding, and hurt for the people of Japan experiencing the devastation of the earthquake and tsunami. So my heart is heavy.

In the midst of all this, I have something to share, unrelated to these items. And here I will share with you, those who are interested.

I am, admittedly, a baby lover. If there is a newborn in the room, that is likely where you will find me. I enjoy holding these precious children new to life. The are so trusting, warm, needy, and tiny. It is pure joy for me to hold these babies, admire their features, absorbed their warmth, in essence, snuggle.

On a recent Sunday morning, I had the privilege of holding such a baby. He is only about a month old. Tiny and new, and perfectly formed. The sermon of the morning was on Psalm 42&43. It was a good lesson from an knowledgeable teacher about the messianic message in these Psalms. Something I had not pondered previously.

However, during the sermon, holding this newborn, my attention had opportunity to wander to the newborn in my arms. And my thoughts went something like this, my own personal lesson of the morning:

This little guy is the third child in his family. He looks so much like his siblings, that I just know he belongs in their family. His pronounced chin is a family feature. When he screws up his face to yawn or to cry I see the same expression in his siblings, even at this young age, his mannerisms are the same... so many similarities.

We shifted positions from the arm cradle to chest-to-chest, he curled right in and fell asleep, secure and trusting. I must confess, my favorite snuggle position with a newborn. The ceiling fans had been turned on so I covered his little head with his blanket to protect him from the draft. However, his arm dangled leaving his hand for me to admire. Even looking at his hand, I could see the family resemblance. I often admired his mother's long fingers and this guy has the same long fingers. I thought, "Wow! Even his hand shows to whom he belongs."

My thoughts then shifted to an analogy... do others look at just 'my hand' and think "she belongs to Christ, I can see the family resemblence?" Do others see a facial expression or mannerism and see Jesus reflected? When one looks at me do they know to whom I belong? Am I so secure in the arms of Christ, that I turn into Him, relax, trust, and let Him carry and hold me, like this little guy, who doesn't know me, was doing?

These thoughts are overwhelming and deep. My own private lesson and challenge from my teacher, Jesus.