The God of All Comfort

Given that yesterday was Sunday, I did not get a chance to post anything new. Between attending church with my family and afternoon family nap time, I did not find much spare time to write.  Sundays are wonderful days to be with family, including church family, and taking afternoon naps. It is about the only time I can get my husband and son to rest.  I enjoy those leisurely reflective days very much.  I imagine Heaven will be an eternity full of Sundays, but only God knows for sure.  But I can imagine that we will be singing together praise and worship music also, and what an amazing eternity it will be.

I wanted to pass on the sermon from yesterday as preached by our Pastor of Student Ministries.  It spoke to my heart because I have been deeply effected by the subject matter. It is taken from II Corinthians 1:1-11 which states:

 1  Paul, an apostle of Christ Jesus by the will of God, and Timothy our brother,

To the church of God in Corinth, together with all the saints throughout Achaia:

 2 Grace and peace to you from God our Father and the Lord Jesus Christ.

 The God of All Comfort

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  5 For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.  6 If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.  7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

 8 We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life.  9 Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead.  10 He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us,  11 as you help us by your prayers. Then many will give thanks on oura behalf for the gracious favor granted us in answer to the prayers of many.

_____________________________________________________________________

I can truly say I have taken comfort and refuge in my faith in God with every sadness that has come my way.  I can say it has not been an easy road, but I have had my faith tested and know I would have rather had the sadness in my life than not, since it has given me total reliance on God.  Here are some verses that will speak about what has been produced in my life:

Romans 5:3-5

3 Not only so, but wec also rejoice in our sufferings, because we know that suffering produces perseverance;  4perseverance, character; and character, hope.  5 And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

James 1:2-5

2 Consider it pure joy, my brothers, whenever you face trials of many kinds,  3 because you know that the testing of your faith develops perseverance.  4 Perseverance must finish its work so that you may be mature and complete, not lacking anything.  5 If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.  

Not only have these sufferings have made me more mature and complete, they have enabled me to have more compassion and care towards others.  I can comfort others who are now walking where I have been.  One example I can think of is having been left out of things, and because of that my heart is burdened for others that get left out. I always tried to make friends in high school with those who were the odd man out.  I was really bothered by the popularity contests, and the cruelty towards other students that did not make the mold.  I was able to use that hurt and turn it around in a positive way.  I know with God this would not be possible at all.

 Enjoy the sermon as you will find some humorous parts as well.  We had some great laughs and lots to think about. Thank you Dave for that and some great scripture as well.  Here is the link:  

http://www.emmanuelburbank.org/2010/04/25/the-god-of-all-comfort/

Please email me if you have any questions or concerns.  I almost feel I should say more but given the time of night, I am off to sleep now.

Kari

What Is An Unsung Hero?

First, I have to mention I did not post a new blog yesterday. I was too exhausted to do so. But today am feeling much better after a nice afternoon nap. It is wonderful to be rejuvenated by a nap and thankfully my family gave me the time to do so. Thank you to my wonderful husband and beautiful son.

Today I am excited to be able to post an article that appeared in yesterday's Daily News Newspaper. This all came about when I was asked to write a letter thanking some wonderful people and organizations who supported the Muscular Dystrophy Association and families affected by neuromuscular disease. I was happy to do so because I am grateful for the money that is raised that will 'I hope and pray' help to find a cure for this 100% fatal genetic disease and the #1 killer of children. Parents of today that have children with neuromuscular disease are hoping and praying for this cure now. I very much want my son to not have to face the future that we know he is destined for with having Muscular Dystrophy.  For this generation of boys, we are running out of time, and it must be stopped and time is of the essence. However, we need your help, not only to raise awareness, but also to help raise money that will continue the all important work of the researchers who are working to make a cure possible. Please contact me by email at testingyourfaith@yahoo.com for further information of how to help.  Our family thanks you.

Here is the article:  http://www.dailynews.com/opinions/ci_14941054

As promised in Thursday's blog, I wanted to bring up mention of one of the many unsung heroes I have come to appreciate. This will be the first of several I will discuss over the next few days or weeks, however long it takes to get it done. This boys name is Darius and his laugh and love of life is infectious. Darius took a road trip from Atlanta to California for a very special purpose at the age of 15 therefore calling his documentary "Darius Goes West".  Darius wanted to spread awareness of Muscular Dystrophy to the younger generation that have no clue who Jerry Lewis is and what he has done for the Muscular Dystrophy families.  He tries to do that by setting out to get on the MTV show "Pimp My Ride" that millions of younger viewers watch. His efforts are worth watching. What struck me most about this movie is Darius' attitude about life and the community that rallies around him, as well as his crew of men that help him along on his journey. The bond is incredible to watch and no where else will you see grown men cry to be so heartfelt.

My hope for Jared and many other  boys like him, is that they will have friends that will rally around just like for Darius.  What I find so ironic in that hope, is that many boys just like my son Jared are being verbally attacked, left behind or ignored because of their disease.  This conversation has been happening on Facebook with us Muscular Dystrophy Moms because we are having to pick up the shattered pieces from our son's lives.  We are venting to each other and trying to figure more positive approaches at school and how to teach compassion so our sons don't keep reminding us how much they hate school or want to be home schooled. Our boys have every right to attend public school in safety and just like everyone else.  It is time we raised much more awareness for Muscular Dystrophy than in the past. It is time to find a cure.  Please take the time to watch "Darius Goes West" with your family and spread the message. Darius will warm your heart and compel you to "Pay It Forward". Look for the "Pay It Forward" area on the link to watch the entire movie for free and then get back to me about it: http://www.dariusgoeswest.org/

Thank you for your support.

Kari

What my son has in common with Weakling Willie . . .

Before I discuss the title topic, I would like to mention if you choose to buy the book I am talking about which is "Weakling Willie", do not buy from Amazon. Sorry Amazon but your price is more than double from the publishing price. Follow the link to get it for $19.95:  http://www.publishamerica.net/product22366.html.

I am sure you are asking who is weakling Willie and why would he have something in common with my son. Especially since Willie is a Rhino Beetle. What my son and Willie have in common is they both were born with weak muscles. Although we did not know my son was born with a genetic fatal disease called Becker Muscular Dystrophy until he was diagnosed at 6 years of age.  We also did not know I was a carrier of this disease until I was tested after he was diagnosed. There is no history in my family before me.

I came across this book when I was researching  the web for some ideas of books I could read to my son's class. I  felt the need to educate my son's class since he has been bullied, teased, and bugged at school about why he could not run in PE. He told me they also called him slowpoke.  It was difficult for him since he just wants to be a "normal" kid.  He also said he gets tired of being asked questions about it. I know that it is harder for people to understand since if you would see my son, you would  think absolutely nothing was wrong with him.  But there is a difference. We are taking a more proactive approach to his care in that we are trying to preserve his muscles as long as we possibly can. Muscular Dystrophy is a progressive muscle wasting disease that will eventually rob my son and others like him of being able to walk and then take his life from heart and/or respiratory distress at a young age.  Duchenne Muscular Dystrophy is the worst form and kids stop walking by 12 usually. Jared has the next form of Muscular Dystrophy which could buy him more time since it is slower progressing but it is variable so we just don't know how fast or how slow it may be.  What is most noticeable is that he cannot run as fast, nor keep up with kids, that for walking, he must ride in a wheelchair or mobility scooter to keep his energy up and preserve what he can. If he overdoes, he ends up not being able to walk until he rests and recovers. But in overdoing, he loses precious muscle that can never be regained.  His body lacks the protein dystrophin needed to repair and rebuild muscle that we all take for granted. Jared's heart is already working too hard also and this is shown in an abnormal EKG, but the cardiologists explain it best by telling us it is an abnormal normal for a Muscular Dystrophy boy.  MD affects the lungs as well. I could go in to more detail but I might lose some of you as this is a lot of information all at once but perhaps I will continue this topic another time.

So, several weeks ago I read this book to my son's class comprised of a little over 30 fourth graders. They were quiet and attentive and very interested in Willie and how he would be able to survive in the rainforest with his weak muscles.  After I read the story, we were able to discuss what Muscular Dystrophy is and how it affects my son. We had ankle weights that we put on a few kids to demonstrate weak and tired legs and of course they all wanted a turn, but we only had so much time allowed to do this. So,we had some disappointed kids but it was quite an experience for me, the teacher and the students.  I very much enjoy being able to raise awareness for Muscular Dystrophy and advocating for my son. There is so much to be done in that regard and it is time we find a treatment and/or cure to put an end to this disease that disables boys and shortens their lives.

In other exciting news today, I found out a letter I wrote on behalf of the Muscular Dystrophy Association's Albertson's Shamrocks for Jerry's kids will be published in the Los Angeles Daily News in tomorrow's addition. I am honored and privileged to have a voice that can make a difference.

I hope to continue this discussion further in tomorrow's blog about the special talents of those affected by neuromuscular disease.  There are a lot of special boys and girls out there to showcase.

By the way, Willie shows what he can do even though he lacks strong muscles at the end of the book and wins everyone over. It is a happy ending.

Thank you to my first two followers Marcia and Tammy. You are awesome.  Thanks again Katie for encouraging me and reading my blog.

Goodnight and sweet dreams.

Kari

Live Like You Were Dying

Today was a day to think about my own mortality, and that is easy to do on a day you don't feel so well.  I felt that today I would just like to give up on this wretched body and join my Heavenly Maker. Of course, not so easy to do with still needing to raise my 9 year old son and I am not sure he is ready for Momma to leave either. But alas, it really is not up to me anyway. God knows the day and time and I will have to persevere once again. Keep following my blog today as I promise, it will end on a positive note, not a sad one.

Anyway, I got word today that we lost one of our own on April 14. Okay, so I don't personally know William Dean Westerlund nor his family, but our family is connected with the Muscular Dystrophy family because my son has Muscular Dystrophy. We became and are a part of so many other families who have a son, grandson or relative affected by this fatal disease. Please read more about him in this wonderful article. He was only 31 years of age:

http://www.baltimoresun.com/news/obituaries/bs-md-ob-william-westerlund-20100421,0,2938921.story

The reason I mention all of this is in part in due to the fact that I ran across a post from my friend Karen C. (thank you once again) on Facebook of a song that I have not heard in quite some time. It is called "Live Like You Were Dying" by Tim McGraw. Here are the lyrics for you to read before I continue:

Live Like You Were Dying (lyrics and music by Tim McGraw)

He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?

An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:

"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?

"Sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And then I loved deeper and I spoke sweeter,
"And I watched Blue Eagle as it was flyin'."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'."
"To live like you were dyin'." 


The statement "to live like you were dying" I believe could be called a paradox. Because in truth we are all dying. It is easy to not think about dying. I remember when my Pop died. I was shocked because in truth I thought he was invincible. Never sick a day in his life. I faced my own mortality when faced with my mom's death. It scared me so that I made myself sick for many years. Not a good place to be for sure. I can admit death has been one of my biggest fears. It is not the being dead. It is the process of how I am going to die. Thankfully I have learned peace about it because I know where my soul is going. Interesting how I once again faced mortality when my son was diagnosed with Muscular Dystrophy three years ago. I was devastated and quite hysterical when I first realized what we faced with this disease.  But God prepared my heart between the time I knew there was a great possibility of him having it and getting the official phone call from the Dr. I knew God had a purpose and that He would give us the strength to go through life facing each progression in his disease. Has it been easy these last three years? No, and it won't be, but we can handle it, and of that I am sure because God entrusted us with Jared and his disease. He is a beautiful boy and has brought us so much joy. He is a gift from God and he and every other boy like him is not a mistake. We will learn how to walk this walk together.


What is the difference between us and every other family who have healthy children? The difference is we know our child's future. I believe it has given us the ability to not take anything for granted but to live each day like we were dying.  I personally would not choose to go skydiving as I am terrified of heights, but I know I will make sure I tell my son and husband that I love them many times throughout the day and enjoy each and every moment in my life that I possibly can. It has been a little difficult as of late, but this blog helps. It is something I have been wanting to do for months and I am glad I have finally have made it possible. This is my 3rd post and I love every moment of it.


So, the truth is we are all going to die some day, just some of us have more knowledge of not taking it for granted that we will live forever. Please, remember how special a gift each day is, and  stop and smell the roses, or dance, or sing or whatever it is that you can enjoy in the moment.  I can say I have much joy thankfully because of my faith that I have had in God since I was 12. All the hard times I have been given since I was born have prepared me for this moment, and I always say I prefer for Jesus to bring the rain since it has grown me so much more in character and wisdom and being who God wants me to be. 


I want to say a shout out to all the MD families out there, especially the Moms. I have been so blessed to have each of you as a friend on FB. You inspire me, help me through those times when no one else can understand what I am feeling, and I look forward to a time when I can meet each and every one of you. I have a dream and that would be to travel the world and meet all MD families, and those with other forms of neuromuscular disease. It may never come to fruition, but with FB we have been able to connect all over the world. Having the PPMD community also is wonderful although I have to admit I spend all my time on FB.

Moms, lets continue to fight the fight for a cure or treatment for our boys and never give up. I hope it will be soon so we can stop seeing our boys die way too young. I hope and pray in the next 10 years although I know time is of the essence for all of us. I pray that there will be a treatment or cure soon.

All others, please help us raise awareness and find a cure. Just contact me for ways to help if you need to know where to start.

Keep the faith and fight the good fight!

Much love.

Kari
John 11:26

Time for change . . . at least for our family.

I have been considering what to write about today. Then it became obvious when I was finally able to tune in to Jamie Oliver's Food Revolution that I started taping several weeks ago. I missed the premiere episode, but it was really easy to catch up on what Jamie has been trying to do for our nation by starting with the food that is cooked in our schools and fed to our children. Jamie wants to make a difference in the lives of Americans by teaching them how easy it is to cook simple, delicious and affordable meals. Why? He is very concerned with our children's health especially and with that in mind, he chose one of the most unhealthy cities in the nation. I have to say I am intrigued by his determination and enthusiasm. If anyone can do it, Jamie can. But I also wonder if people will become complacent in their newfound habits once he is gone from their city. I know how easy it is to become complacent. It seems almost too easy to slip back into old habits and old thoughts. But I also know change is never easy, and takes time to become habit. But Jamie will use antics to prove his point of which I was impressed. He showed to some young children how chicken nuggets were made from the chicken carcus (pretty disgusting) and they still chose it over the healthy parts of the chicken. He took a radio station DJ to a mortuary to see an oversized casket that would take two plots to fit it into. Seems the adults are easier to persuade.

I have to say I am impressed by this great sense of community that Jamie is building on his show. That has always been extremely important to me. I am also impressed by his ability to make a difference in the lives of everyone he comes across.

One of my new favorite movies is "The Blind Side" with Sandra Bullock. Why? Because I love seeing one person make quite a difference and impact in the life of another. I know if each person did that in this world, it would be a much different place to live in. Now don't get me wrong. There are people making a difference every day, but I believe we can all do so much more.  Pick a charity to volunteer at, serve food to homeless persons, read to a child or classroom, help clean up a park, or whatever else you can come up with. For more ideas, check out volunteermatch.org or serve.gov.

Back to my main point of time for change, which is I do believe we as a people need to be aware where are food comes from. We are allowing food that we eat to be processed and it is shortening our life span. I have done it myself since I was a little girl. I remember eating McDonalds and Pioneer Chicken on a regular basis and don't remember a home cooked meal. I have continued to eat this way my adult life and now causing my son to eat this way.  Ironically my son has a fatal disease that will shorten his life and I am just making it worse instead of giving him a step up with proper nutrition.

So, here is what I have decided to do:

     1) Avoid processed and fast food as much as possible
     2) Eat more wholesome, natural, raw food at the dinner table with my family
    
I will strive to feed my family simple, delicious and affordable meals by learning as much as I can from Jamie and anyone else who will share their tips and knowledge. I would like to help continue Jamie's Food Revolution and make a difference.

Hope that you will too if you are not already on the right track.

Thanks for reading.

Kari
Philippians 3:12-13

It has been a long time coming . . .

I wish I could describe to you what I am feeling right now . . . I have mixed feelings of a renewed sense of purpose, and joy along with a great big smile on my face. It is a great feeling . . . it has been a long time coming. Of course, I mean this blog has been a long time coming. I have to thank my neighbor Katie for encouraging me to do this. I have been talking about it but not taking action, which is unlike me. But I have more time it seems these days and I am tired of procrastinating. My husband just walked in and noticed I seemed happier and it is because of finally getting this off the ground. Yay me!

You may be asking what I hope to achieve with this site. Well, I am not quite sure where it will take me. But I do know that I intend to cover practically every subject that is family friendly. I want to keep it clean and positive. I also want to be able to help other people and myself along the way.

As far as being positive, I know that along the way there will be topics that one may not consider positive. Perhaps I shall say I will be upbeat instead of positive. After all, let's face it, life is not always positive. Life has its up and downs. However, I am proof positive that even when things are down, life can still be worth every moment. Enjoy every moment, don't take it for granted, and remember, life is a dance. Sometimes, it is fast, and sometimes it is slow.

I know that I may not always say things right, or may upset some, or perhaps my vocabulary or English is not fantastic, but I will always do my best and give my all. I would love feedback. I want this blog to be about us helping each other along the way. I love a sense of community whether it be in my neighborhood, church, or here. This blog will be a community that will bring us together. That is my hope and what I long to achieve. A place for community. You, my family and friends are dear to me and I am blessed to have each and every one of you in my life.

Signing off from my welcome post.

Kari