Do not grieve (JAF Camp 2016)

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I just recently finished serving a week at Joni and Friends Southern Oregon Twin Rocks Family Retreat. This is my fourth year serving at this camp that caters to family with disabilities. These are families who fight for their loved ones so they can get proper medical treatment, education, and spiritual care.

These families travel across the nation to participate in four days of camp on the Oregon Coast, because there isn’t something like it where they live. While more Joni and Friends retreats are being set up, the need is so great that the demand overtaxes the supply. There are families who plan their whole year around these four days, that is how important it is to them.

This camp is a place where the campers can be kids, and families can focus on just loving each other rather than being on the defense against other people’s curiosity and advice. Here they are eagerly anticipated and accepted. They are not considered ‘other’ or ‘different,’ they are simply seen as someone to love.

Short-Term Missionaries (STMS) are volunteers who come and serve these families. They are all age ranges, from 10-80 at least, who are so eager to love on these campers that they save up all year to attend. This is not a camp where volunteers put in a few hours of work in the kitchen to have a free fun time. No, this is a place where STMS are paired with a single camper and their duty is to be their friend for the week. It’s a place where they are truly missionaries whose mission is to show these campers that they are deeply loved, exactly for who they are. We have STMS who do bake sales, garage sales, mow lawns, build birdhouses, and numerous other things, to raise money, because this retreat is that important to them. $450 is a lot of money for a 13 year old to raise, but they do! And now many of them are raising about that much money again, so they can serve in the next week of camp as well. The STMs love it just as much as the families do.

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All of our camp volunteers (STMS) Nearly a 100 kind spirited people giving of their time and money to serve

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Our whole family camp! Campers and STMS together

This year our camp verse could be found in Nehemiah 8:10, “The joy of the Lord is your strength.” But, the verse is right in the middle of a sentence. What the actual sentence says is, “Nehemiah said, “Go and enjoy choice food and sweet drinks, and send some to those who have nothing prepared. This day is holy to our Lord. Do not grieve, for the joy of the Lord is your strength.”” 

Nehemiah is an amazing book full of God’s mercies and work. It’s about the Israelites getting to go back to the Promised Land, after being put into the chains of slavery due to their sinfulness. It’s about a pagan king who listened to the voice of God and allowed his cup-bearer to leave and build the walls of Jerusalem once again. It’s about the eagerness of the God’s people hearing the words of the Lord once more. It’s about the joy of finding God after years of silence (on the side of the people).

In this section of Scripture, we find the people hearing the Word of the Lord for the first time in years. They were weeping because they hadn’t heard it for so long. But, this was a time to celebrate. The Word was available once more. It was being read from early morning till midday. And the people stood to hear it.

Do not be grieved. Don’t be grieved that before you didn’t understand the Word. Do not be grieved over the past deeds, because now you have the way to make your slate clean. Do not be grieved.

It is a time to rejoice! To revel in what the Lord has done! He has done the unimaginable and it must be savored. He has brought the Israelite nation out of slavery and out of their sin and has brought them back to their forefathers’ Promised Land. The pagan king funded the rebuilding of Jerusalem! How amazing would it have been to be there, to walk back into that land that was your father’s and know that you could come home.

Nehemiah is telling these people who were weeping over the loss of time and of the Word, to not grieve, to rejoice, because that joy of the Lord is your strength. The joy of the Lord is your strength. Rejoicing and reveling in the Lord gives you strength.

These families with disabilities know what it is like to grieve. Some days, it may feel like they can never find anything to rejoice, but then the joy of the Lord strengthens them. And this camp gives them that strength.

But, at the same time, these families know how to rejoice over the little things. Things that might seem inconsequential to us, but are major milestones for their loved one. And this camp helps them rejoice over them.

Joni and Friends Family Retreat is an experience like no other. It is hard to use words to describe it adequately, because there isn’t one thing similar to pull from to compare. It is often compared to Disney, as being the happiest place on Earth, because at camp, the campers can just be kids. No expectations to fit into any mold that one may insist on being the perfect one. No trying to remember the arbitrary rules of society so that one can be accepted. No acting a certain way so that you won’t be laughed at. No explaining why you do things differently than others, why you walk the way you do, or why you can’t speak.

These people at camp, they understand. They look at you, and see simply, you. You. The one God declares Beloved. You, who God created with great love. You, whose beauty can be seen as God intended, rather than as a mark against the plastic perfection of society. You, whose talents are marveled at, whether you can sing or draw, or throw a ball, or take your first walks on screen. You, you are celebrated for being you.

Here your ticks are accepted. Here sounds that are voiced are cheered. Here you can run because its just so much, and we will run with you, rather than force you to stop. Here your mask can be left at home, and the real you can be let out to enjoy the world as it was meant to be. Here people rush to meet you. Here hesitation and fear have no place as you are loved. Here people will share their food and their space. Here the need for quiet is understood, but so is noise, and what a joyful noise to the Lord we make together! Here miracles happen on a regular basis, voices are found, friendships are made, love is given. Here, angels tread and God blesses those he calls his.

God’s love for you is your strength. He knew you when he placed you in that womb. He knew your life would be difficult, but he knew he wanted you. You were not a mistake. He rejoices in you, every minute of every day. He knows you and loves you just as you are. He gave you spiritual gifts to bless this world, don’t let anyone get between you and worshiping your Father. Share your gifts!

I know a camp where we are eagerly awaiting to celebrate them…

I highly recommend Joni Eareckson Tada’s biography if you have never heard about this ministry. Joni- An Unforgettable Story

http://www.joniandfriends.org/store/product/joni-unforgettable-story-discount/

You can also follow her radio/video series, many of which can be found here:

http://www.joniandfriends.org/jonis-corner/

For more information about Family Retreat, please see:  http://www.joniandfriends.org/family-retreats/

For more information about volunteering at a Family retreat, please see:

http://www.joniandfriends.org/family-retreats/for-volunteers/

The Art of Losing (Memories)

I finally got the opportunity to watch the recently released film “Still Alice.” I highly recommend this film, as it may give you the ability to understand some of the sheer terror that people face when diagnosed with Alzheimer’s.

As a caregiver, I have worked with clients in various stages of this horrid disease. It was remarkably well displayed in “Still Alice.” The film follows a renowned linguistics professor as she discovers that she has Early Onset Familial Alzheimer’s Disease at just the age of 50. Alice is a very intelligent, hardworking woman whose very life is defined by words, but she slowly starts to lose the ability to speak her beloved words. It follows Alice and her family for a year, and you can see the quick progression of the disease to the point where she can barely talk.

What I love about this film is not only the amazing portrayal that Julianne Moore does, but how they show the range of emotions that the family members have regarding the ‘loss’ of their mother and wife. You have the denial in the husband as well as distancing, the fixer in the son, one daughter wants to remember for her, while the other daughter accepts it and learns to live in it. There is so much emotion displayed in this film; the fear, the acceptance, the fight for a life that is familiar.

At the beginning, when the diagnoses is given, Alice says something to the effect that she wished she had cancer. Cancer is acceptable, people will put on ribbons, run in marathons, and do fundraisers for you. You become a vision of inspiration. But, Alzheimer’s? It’s shameful, something to be hidden. No one wants to discuss it and friends start to fade away.

We fear mortality. We fear the loss of self. And in our fear, we distance ourselves from those who are in the midst of something we dread. Think about it. You know someone with a loved one who is becoming forgetful, they are worried about the outcome of tests and meetings with caretakers. In their stress, they stop contacting you, or whenever you do talk to them, it’s all about the struggles they are going through. You start dreading the phone call. You don’t want to hear about it.

Your grandma starts forgetting the stories she has told you, just 30 minutes ago. You start to ‘correct’ her, but it makes her worried. She stops talking. Because you always say, “You’ve already told me that.”

Dementia and Alzheimer’s are diseases that erase self. They make you forget who you were, who you are now, and who you could have been in the future. It makes you forget the ones you love, and the very ability to make your body work. Some people call it the “Second Childhood.” You become dependent on others for the very things that you once took care of for your children.

Your children take care of your intimate needs as your mind forgets the ability to do certain movements. Your spouse who looked forward to an exciting retirement with you instead has to keep track of your wanderings and pills. You become the dreaded burden you always feared.

Alzheimer’s is a demeaning disease. It’s full of angst and fear. As well as intimate demands.

But.

Alzheimer’s can also be an awakening for your family. Personalities can be changed because of this disease. One of my clients whom numerous people attested to be a very hard woman, became extremely sweet in the midst of the disease. Family members were able to connect to her in a way that they were never able to before. Forgiveness was found as untold stories came to the light.

There can be a beauty in the midst of losing.

“Still Alice” uses a quote from the poet Elizabeth Bishop who said: “The Art of Losing isn’t hard to master: so many things seem filled with the intent to be lost, that their loss is no disaster.” I encourage you to live in the losing with your loved one. Do not put upon them the fear of remembering, by correcting them thirty times a day about the things they forget. Many of them already know they are forgetting. Reminding them does no good. 

Follow the meandering stories the best you can. It won’t be easy, but remember, what you are going through is nothing compared to the labyrinth in their minds.

Don’t hide them away as if they are a shameful secret. There will be times that too much stimulation will be hard for them, but hold their hand, read them stories. Engage them in life. Life may look differently for them, but they are still a part of it. Don’t remove them from the time they have among your family.

See things anew through their eyes. Sometimes the simplistic beauty of a flower becomes enrapturing. Looking at each individual petal can take all day, enter into that discovery with them. Maybe this is the time God has given you both to smell the roses they were too busy to see before.

Remember, if you meet one person with Alzheimer’s, you have only met one person with Alzheimer’s. The disease reacts differently to every brain it inhabits. Learn what is best for each person differently. Remember, that they are not the disease, they are people who still dream and hope, acknowledge that desire in them.

I have worked in private homes, adult foster homes, as well as retirement centers. No matter where I go, I see a person who deserves my respect and their dignity. It’s easy to get caught in the ‘doing’ stage and think they are moving too slow, that you have things to do. So you start shoving them into clothes, quickly scrubbing them in the shower, making them eat quicker, etc… When there is a lot to do, it’s easy to see a person as an object and move them where they need to be, rather than see them for a scared nervous man or woman who is uncertain of the next step.

I always think, how would I want to be taken care of? Like no matter what is wrong with me, I’m still someone of worth. I am still me. My self-hood is not contingent on my ability to remember your name or how to put on my pants. If I breathe and my heart still beats, I am still me. Treat me as human and worthy of your respect.

 On my good days, I can, you know, almost pass for a normal person. But on my bad days, I feel like I can’t find myself.-Dr. Alice Howland

There will be bad days. But, there will be sweet moments as well. As the disease runs it’s course, and the memories it eats run dry, there will be come a time, a week or a few days before their eyes close for good, that clarity is found. For a few hours, you will have your loved one back. The one you remember from years past. Cherish that time. It is the final goodbye.

Caregiving for someone with Alzheimer’s is a hard job. It’s even harder when that person is someone you know and love. It will make you weep and make you scream. But, if you allow love to guide you through it, it can be very rewarding as well. Find support groups, make your family get involved, and take moments in the day to remember who you are. Take a walk outside, or read a book. Take a breather. You will love them better when you take care of yourself.

I highly recommend the movie “Still Alice.” I just got the book, but I’m sure I will be recommending it as well.

Why Are There So Many More Disabled People Now?

Why Are There So Many More Disabled People Now?.

A wonderful article looking at the hard history of asylums and the entrance of those with disabilities into the public experience.

His Language is Spoken

I had the extreme pleasure of attending Joni and Friends’ first ever Global Access Conference recently. I am still struggling to put into words what I learned and to describe who I had the joy of breaking bread with while learning about their ministries around the world.

One thing that I can say with all certainty though, is that God is moving mightily among these people whom the world considers worthless.

I’ll be talking about it for some time, I am sure. I’d love for you to enter into the conversation with me, and perhaps it might get you thinking about your own church as well as your own interactions with those who are disabled.

The first topic we will look at can be found in the panel session I attended called “Learning to Speak Their Language,” which was about how to interact with children and adults with developmental disabilities and mental illness.

One of the attendees asked a question that is a common query in churches: “What if they can’t understand the Gospel?”

The panelist, who was a mother of a child who is non-verbal due to autism, said something that really struck me: “The Holy Spirit knows his (her son’s) language.

What a beautiful response! It totally wiped away any scientific, theological, or medical argumentation regarding what is human knowledge (in my mind). It brings it down to the most basic of beliefs–God knows my heart.

Theologically, we have decided that there has to be a ‘Sinner’s Prayer’ where we verbally recognize that we are sinners and are in need of God’s forgiveness. In many instances, when someone says they want to believe, we tell them that they need to repeat after me, an example of such a pray can be found on The Blessing House website: Lord Jesus, I come before you and confess that I am a sinner. Jesus, I believe that you died on the cross, and that Almighty God raised you from the dead. I pray that you forgive me of my sin, and be my Lord and Savior. In the name of Christ Jesus I pray this request. Amen

This is based off of verses such as Romans 10:9 Because, if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved.

We must first acknowledge that while having a ‘Sinner’s Prayer’ is not wrong, it is not Scripture based. The only prayer that we are told to pray is the Lord’s Prayer found in Matthew 6 and Luke 11. There is no description of the prayer that we are supposed to say in repentance and acceptance of God’s forgiveness. There are no motions that we are supposed to do, no assigned person we are to do it in front of, nothing we are told to do but: Confess and believe.

Now, it does say to confess with your mouth. This can be a hang up for those who are non-verbal due to illness, or some form of disability. But, it doesn’t have to be! Because, as God tells Moses, who is attempting to get out of the duty that God has set before him, in Exodus 4: The LORD said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the LORD?”

To echo the mother at the panel session: God made you and he knows your language. He knows your language even if you have never spoken before. No matter the language your heart speaks, God created it: Sign Language, Hiri Motu, Korean, Inuktitut, and English or the roughly 6,500 other languages in the world. The story of Pentecost in Acts 2 is proof of that:  There were Jews living in Jerusalem, devout men from every nation under heaven. When this sound occurred, a crowd came together and was confused because each one heard them speaking in his own language.

Why do we put human limitations on what God can do? Why do we make rituals take the place of the beauty of God’s encompassing love and forgiveness?

God knows your heart.

No matter your ability, God knows you. If you in your heart of hearts ask for God’s love and forgiveness, I cannot deny your salvation because you didn’t come to him the way I did. It is not my place to deny your salvation. It is my job to love you as a beloved child of God, and teach you the Gospel so you can know him.

Even if I believe that you might not understand, I am still tasked with the duty to tell you of God’s love and sacrifice to save YOU. Because when you stand before God’s throne, you will be judged just as I will, no matter the limitations that humans have placed on you. God will judge your heart to see if you have been made clean by his Son’s blood.

The Holy Spirit speaks your language and it is love.

So, to all the Christian believers out there, I urge you: Do not hesitate to reach out and speak God’s love to all you meet. No matter if you think they might or might not understand, God knows their heart. Do your duty with love and tell of God’s sacrificial love.

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Global Access–For All

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In a week’s time, I will have the privilege of attending the Joni and Friends’ Global Access Conference in California. It is the first of its kind and they are expecting a thousand attendees from 44 countries.
A thousand people who are in the midst of working to change the church in regards to disability ministries.
A thousand people who understand the importance of spreading the Gospel to all people, no matter their ‘ability.’
I look forward to the opportunity of talking to these men and women who have caught the vision already. Men and women I won’t have to try and convince of the importance of ministering to the disabled. I look forward to the opportunity to learn from these veterans.
I’ll get the chance to sit in workshops like, “Christ, Demons, Disability,” “Disability and Bioethics,” and “Using Every Spiritual Gift: People with Disabilities Ministering in the Church.” I get to hear Joni Eareckson Tada and Nick Vujicic, two influential people in my faith as well as my passion for this topic, not to mention being able to hear three authors whose books were literally Godsends when I was working on my thesis.
The beauty of being able to worship with men and women who the world decrees different, and being able to join with them to create a difference is staggering. I am so excited to be able to participate in this learning experience and be able to add my voice.
God has given me the amazing gift to be able to go to this conference. I can’t wait to see what comes from attending.
God has blessed me greatly.

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Disabilities and Justice

In under two weeks I will have the honor of speaking at a workshop during the Justice Conference of Portland. While the actual Justice Conference is being held in LA, Portland will be streaming it along with having a breakout session the day before. To be asked to come to my former school (Multnomah University) by a former professor to talk about something I have researched and studied for the last seven years is a great honor and an amazing step forward. My workshop will be called “The Disabled: A Forgotten Minority.”
The Justice Conference is a great opportunity to speak to active members of the church as well as extraordinary workers of many ministries. To have the chance to bring their attention to the topic of the disabled in the church and talk with such knowledgeably engaged people will be a tremendous learning curve. I am so eager to have the chance to learn from their experiences.
I am no expert. To quote Albert Einstein, “I have no special talent, I am only passionately curious.” I am a firm believer that I will never know everything about this very important topic. But I can’t wait to be part of the conversation.
It has been so wonderful to see the theologians finally bending their considerable minds to how the church needs to interact with those who are disabled. It is a very long time in coming, and it has a far way to go.
So PLEASE keep me in your prayers as I work on my lecture and on the 21st when I am in front of so many amazing people to share my heart.  Pray that God will hijack my mouth and just use that time to make his plan shine.
So excited and nervous about this opportunity!  

Team Hoyt & Apostle Paul run the race

This last Sunday, I was leading my Ladies group in a study of Philippians 3:12-21. I was suddenly struck by the beauty of Paul’s words in verse 14  I pursue as my goal the prize promised by God’s heavenly call in Christ Jesus (HCSB).
We tend to recognize that racing, reaching the prize, pursuing the goal, as favorite metaphors of Paul. One of the most well known being found in Hebrews 12:1-2 (bold) Therefore, since we also have such a large cloud of witnesses surrounding us, let us lay aside every weight and the sin that so easily ensnares us. Let us run with endurance the race that lies before us, keeping our eyes on Jesus, the source and perfecter of our faith, who for the joy that lay before Him endured a cross and despised the shame and has sat down at the right hand of God’s throne.
I realized while reading it with my class, that I had the wrong vision of what Paul’s race might look like. I admire Olympiad athletes who can run full out in quick sprints and break records of the fastest run in so many seconds, but it never truly echoed in my life.
Christian life is not a sprint. It is a marathon race where we do not get to pass off the baton to someone who can do that scary obstacle course right in the middle of the race. Reading the various race metaphors before, did tug a little on the heartstrings, but it never sank in in regards to the enduring dedication that is needed to continually run when your energy is flagging.
My life has been more of a marathon. It has never been a sprint. Racing round a track in under 4 minutes is an amazing feat, but the energy is gone. I have had to see some people race ahead of me in life while others fall behind, and still I must doggedly continue to race towards the goal of my life- complete humble perfection in Christ Jesus. The prize that will hopefully await me upon entering the heavenly kingdom of God.
The vision I now carry with me is the idea that the marathon race that I am in the midst of is closer to what the amazing Team Hoyt might go through.
Team Hoyt is a father son duo who have ran in various races since 1977. The duo officially ran their 1077th race as of April 2012.
What is so amazing about Team Hoyt?
Dick Hoyt, the father, is now in his 70s and races for the benefit of his son Rick, who was diagnosed with spastic quadriplegia. Rick had told his dad after their first run together, “Dad, when I’m running, it feels like I’m not handicapped.” Since that moment, Dick has done whatever he could so that his son could feel freedom.
They have raced in marathons, triathlons, and the difficult Ironman competitions. They have also biked and run across the United States in 45 days.
Throughout the races, Dick carries his son. Depending on the competition, Rick is either placed on the front of the bike in a special chair, pulled behind his father on a small boat, or pushed in a specially designed racing wheelchair. He is in the midst of the race. And he always finishes before his father.
So why did reading Paul’s “pursue as my goal the prize before me” suddenly make me think of Team Hoyt? I’ve known about Team Hoyt for years. I’ve always greatly admired the duo and follow them on Facebook. I remember praying that they weren’t near the horrible tragedy at the Boston Marathon, which happens to be the duo’s favorite race.
So why now?
Perhaps my last year of life has focused my attention more on the fact that I cannot face this race as a sprint. Becoming mature in Christ is not a quick one-two thing that happens. It is something we must struggle with. We must sweat, cry, and bleed over our spiritual life.
Dick Hoyt shows how important his son is to him by continually bleeding and sweating over that which makes his son feel free. I’m sure he has shed more than his share of tears over the years as exhaustion and illness plague him, but still he continues to strive towards the goal of the finish line. His focus is totally on that which is in front of him- Rick, his son.
It is not about the ‘prize.’ It is about the growth of his son’s sense of freedom.
Applying this to Paul’s metaphor might seem like a stretch, but stick with me.
Paul, throughout his letters has mentioned that that he has shed blood, sweat, and tears in the service of Christ. He praises that that which is behind him (the old him who despised the salvation of the cross) no longer has the power to sway him from his goal. He has beaten his body into submission and is wholly focused on coming perfection at the end of the race. He encourages those he writes too, to bring their own bodies into submission and run with endurance towards the prize, to not be swayed by the world’s glitter, but focused on the true reward.
I’m sure that Dick Hoyt has wanted to just collapse in the middle of the Ironman competition more than once (or any of the races), due to the exhaustion of going from biking, to swimming, to running. But, rather than give into his flesh, he puts one foot in front of another, his eye on his prize- his son’s joy.
Paul was not a sprinter. If he was a sprinter, I believe he might have renounced Christ rather than go through torture at the brutal hands of the Romans. A sprinter would not have the fortitude to withstand his faith being questioned. Sprinters in the faith burn brilliantly and quickly. The first time there is a small bump in the track they will fall away, unable to handle the difficulty of the race.
Marathon racers on the other hand, will conserve their faith in the midst of the race. It is for when those hiccups come their way, they have the knowledge and strength they built up during the calm moments that will help carry them through the tough moments.
Christian marathon racers should not be trying to leave everyone in their dust, but rather be helping our fellow racers finish their race well. We all are striving for the same goal.
The beauty of racing for the prize of fellowship with Christ, is that there is enough of him to go around to all the winners!

hoyt12You can read about the amazing Team Hoyt here on their website