My Weeds.

We bought our first house six months ago.

It's a simple four bedroom, two bathroom, split-level home from the 1970's that has been completely remodeled and updated on the inside. It's located in a peaceful neighborhood just half a mile from my sister. To the typical guest, everything is lovely and perfect.

But take one honest look out the windows and you will see that the backyard is full of weeds and the fence is falling down.

I'm not talking about dandelions and clover kind of weeds. After we moved in I confronted: buckthorn, a forest of 5 foot high thistles, creeping charlie (ground ivy), and wild grape vines --to name a few varieties that I could identify. My goal was to remove at least half of the weeds before the first snow fall.

So I pulled and dug; yanked and hacked at the roots of those noxious weeds daily until my back ached and my hands blistered.

Day after day, I chose this activity.

Nobody was telling me to pull the weeds. I wasn't volunteering to pull weeds belonging to someone else. I wasn't being paid in exchange for my labor.

I was merely choosing not to ignore the weeds in my own backyard.

My weeds.

I named them: "mine". And then I pulled, dug, chopped, and yanked them out and observed their stories.

Some of the weeds came out easily, especially after it rained. Fresh moisture always created less resistance to change and it was a relief to successfully remove an entire plant by the roots.

Some of the weeds refused to budge.  So we faced off in the mud: deep roots against my own feet firmly planted. I will likely see them again.

Most of the weeds in my yard are layered and complex. When pulling one, it frequently leads to pulling 3, 4, 5, 6 more; their roots entangled and enmeshed. Especially the wild grape vines which ironically yield no grapes.

A few of the weeds taunted me with their beauty. One in particular, with its glossy, green leaves and bright red berries. It wanted to stay, but I said no.

Many of the weeds I encountered this summer were familiar and connected. The birds all seemed to know them and love their seeds.

The weeds amazed me with the ways they had perfectly adapted for the amounts of sun, rain, and nitrogen they received. 

They were thriving.

And now they are mine.

I bought them: they came with my house.

My house is part of a yard.

My yard is important to me. I get to choose what grows here.

My yard is part of a neighborhood. My choices effect those around me.

So, I honor the contributions these weeds made individually and collectively to the birds and the soil, and how they used the resources available to the best of their ability.

The weeds will always be part of my yard's story. And they are important. They served a purpose, they were more than a nuisance. But now their time is done, and they have to go. I want my yard to be a place of peace. They can grow somewhere else. 

I recognize their resilience and resistance.

And I match it with my own.

To make way for new growth.

To make way for plants that give life and don't merely take it.

For that is the difference between a plant of value and a noxious weed.

Dirty White Shirts

"Alright, we'll see you on Monday, remember our dress code is dark jeans with a white, button down, collared shirt. Make sure it's clean and ironed." 

I left my interview feeling confident and excited. I was 15 and had just landed a part-time job to fuel my adventure fund.

The new restaurant in town was popular and hiring. I got hired on the spot to fill the position of "hostess" and my anxiety about the interview quickly dissipated.

My parents weren't thrilled with the news about my new job. It was after all very secular: they served alcohol and played rock music and they speculated that most of the servers worked there to get fast cash for their drug and sex addictions. With heavy sighs, I was instructed to be "salt and light".

I bought two brand new white shirts from the boy's section (so that they would be baggy and long enough to tuck into my jeans) and two white tank tops (so that they would not be see-through) to wear under them. At my mom's insistence, I buttoned all but the very top button.

My first shift: the manager complimented my hair, examined my carefully ironed shirt, and suggested that I unbutton one or two more buttons and buy shirts that were more form fitting since I am the first impression for customers.

My second shift: the manager picked up pieces of trash to put in the breast pocket of my clean, white shirt and informed me that wearing a shirt with a pocket on my breast was silly.

My third shift: the manager told me that he needed a hug because the song on the radio reminded him of his ex-girlfriend. When I refused, he made up a story about customers complaining about my attitude and threatened to fire me.

My fourth shift: the manager told me to smile more and loosen up. I was supposed to be joking around with him more. Also, my white shirt was wrinkled.

My fifth shift: the manager was waiting for me to arrive to work and wanted me to wash all the dirty tables and pick up the trash under them because he was expanding the role of hostess. He watched me with his arms crossed the entire time.

I wasn't sleeping well. The inside of my mouth hurt from biting it. I developed chronic hiccups. I didn't have anyone to talk to about this. I felt like I was going crazy. I felt like this was somehow my fault. I was taught to respect men unconditionally because they are the natural authority. This was my first "real" job. I was fifteen.

At the time, my parents viewed any harassment/rape/molestation to be the victim's fault. I heard them talk about situations like this all the time. I was anxious that I would be blamed for causing this unwanted attention and being labeled by them as a "flirt" or a "slut" or being told "we told you so" about the job I chose. So I said nothing to them. My anxieties about what might happen to me if I continued working there increased as the rest of the male staff followed the managers example in their treatment of female coworkers.

I did not feel safe.

My white shirt felt dirty.

I decided to write.

I dedicated a page in one of my high school notebooks to document and date the specific examples of what this manager was saying and doing to me that made me feel so uncomfortable and dirty.

When I had a full page of dates and specific examples I decided that was enough.

I came in before my shift started on a day that I knew the General Manager would be in the office and I brought my notebook. I handed it to him and told him how uncomfortable I was working my shifts at the restaurant. I told him that I didn't want to be scheduled on the same days as the other manager.

Turns out: I WAS NOT THE FIRST COMPLAINT.

The manager was fired.

He became a manager at a different restaurant in town.

To this day, I don't like wearing white, button-down, collared shirts.

They will always look dirty to me.

Stepping Into A Dream

"YOU ARE SO LUCKY MOM! YOU GET TO START SCHOOL BEFORE ME!" - Said my four-year old with a sigh as I tucked him in for bed last night. 

With a kiss on his cheek and warmth in my heart, I wished him sweet dreams, and prayed for restful sleep. 

This morning I stepped into my dream. Not just somebody else's dream, or somebody else's dream for my life, or somebody else's idea for my own dream. I've been doing all those kinds of dreams for the last two decades. Today --I stepped into MY own dream. 

And it felt so good. 

Simon Sinek says, "success is when reality looks like what's in our imagination."

Today I began my graduate studies at St. Catherine University's Occupational Therapy program. The pursuit of a fulfilling career, and doing something meaningful with my life has been a lifelong dream of mine. And it has been a wild journey.

A few of you know my whole story,  some of you know a few bits and pieces, and most of you know only what social media reveals. The same goes for me in regards to most of you who are reading these words. We all make so many assumptions about each other based on a few strands of context. And that is why I am writing now, because I want to remember the context of where I am, how I got here, and the immense privilege that it is to be sitting in the plush purple chairs of St. Catherine University. 

I still don't feel comfortable discussing the painful implications of my fundamental upbringing on this open platform, but I can say that wrestling with my pain and slowly finding peace with my past has brought me to this place of purple chairs and cheery professors. Simon Sinek succinctly states, "Fulfillment is not born of the dream. Fulfillment is born of the journey."

Ah! The journey! Yes. It really is all about the journey. 

I was nearly giddy with excitement and joy today - and half the time teetering on the verge of tears. I literally had to pinch myself. To know that I am HERE and this is ME - here - fully present - TODAY - with MY DREAM. Together at last. 

"First the pain, then the rising." (Thank you for those wise words, Glennon Doyle-Melton, they have become a cherished mantra.)

Today felt like the beginning of my rising. Some of my classmates felt like it was the beginning of their three years of expensive, self-imposed tyranny, and tutelage --we were all a bit overwhelmed with the reality of it all-- but to me, it felt like the beginning of something very beautiful and precious, like the conception of one of my babies.

I am excited because I am here - but more importantly, I am fulfilled because of the struggle that it took to get here. I may look like your average OT student: white, middle class, female, late twenties -- but that does not make me average.  This is just the beginning, and I am so very grateful to have a beginning. 

"A vision is like a dream --it will disappear unless we do something with it. Do something big or do something small. But stop wondering and go on an adventure." Simon Sinek

Falling Forward

WE DID IT 

Three years of dedication, focus, sacrifice, and perseverance. 

We are so grateful. 

I am primarily sharing pictures from this momentous day, because I currently have no words to describe what this journey has been, and what this day means to us. 

So instead of my own narrative, I want to share the words of Denzel Washington from his commencement address to Penn University in 2011. His words ring true to both our struggles and successes over these past three years, and inspire us to keep on persevering as we prepare to move to Minnesota so that we can begin the next phase of graduate school with myself as the scholar. 

Enjoy and be inspired!

____________________________________

Excerpts from Denzel Washington's commencement speech:

"I’ve found that nothing in life is worthwhile unless you take risks.

Nothing.

Nelson Mandela said:

“There is no passion to be found playing small—in settling for a life that’s less than the one you’re capable of living.” 

I’m sure in your experiences—in school… in applying to college… in picking your major… in deciding what you want to do with life—people have told you to make sure you have something to “fall back on.” 

But I’ve never understood that concept, having something to fall back on. 

If I’m going to fall, I don’t want to fall back on anything, except my faith. I want to fall… forward.  

At least I figure that way I’ll see what I’m about to hit.

Fall forward.

First… you will fail at some point in your life. Accept it. You will lose.  You will embarrass yourself. You will suck at something. There is no doubt about it.

That’s probably not a traditional message for a graduation ceremony.  But, hey, I’m telling you—embrace it. 

Because it’s inevitable. 

If you don’t fail… you’re not even trying.

My wife told me this expression: “To get something you never had, you have to do something you never did.”

(The result of asking a kind stranger to take our family picture.)

Les Brown, a motivational speaker, made an analogy about this. 

Imagine you’re on your deathbed—and standing around your bed are the ghosts representing your unfilled potential.

The ghosts of the ideas you never acted on. The ghosts of the talents you didn’t use. 

And they’re standing around your bed. Angry. Disappointed. Upset. 

“We came to you because you could have brought us to life,” they say.  “And now we go to the grave together.”

So I ask you today: How many ghosts are going to be around your bed when your time comes? 

Whatever it is… what are you going to do with what you have?

Now here’s my last point about failure: 

Sometimes it’s the best way to figure out where you’re going. 

Your life will never be a straight path.

 

Because taking a risk is not just about going for a job.  

It’s also about knowing what you know and what you don’t know. It’s about being open to people and ideas.

 I can’t think of a better message as we send you off today.

To not only take risks, but to be open to life.

To accept new views and to be open to new opinions.

To be willing to speak at commencement at one of the country’s best universities… even though you’re scared stiff.

While it may be frightening, it will also be rewarding.

Because the chances you take… the people you meet… the people you love...the faith that you have—that’s what’s going to define your life."

(you can find the full transcript of Denzel Washington's speech here  and a video of it here. )

Congratulations Jesse! 

WE DID IT!

The Satisfaction of a Job Well Done

I just finished my job.

And I breathe a breath of fresh confusion.

I'm feeling relieved and grateful, but also exhausted. I'm feeling accomplished and satisfied, while simultaneously sensing that I didn't do enough. I'm feeling eager and excited to move towards the pursuit of my dreams and start graduate school, and yet there's also a keen sense of loss of the identity that I have formed around my work over the past four years. Is this the push-pull of the elusive work-life identity struggle?

For four years I have been a caregiver in some all-encompassing capacity. First for my own child, and then adding two women with developmental disabilities with whom we shared a lovely home and all the complexities of life. And then I slowly started collecting caregivers who needed support and encouragement. And then another child. And for one wild, brief, chaotic, moment --I tried to be a super-hero caregiver for my clients, my children, and a couple of other caregivers. I discovered I wasn't Wonder Woman. Without having any notable support or space for myself, I found myself drowning in the bottomless ocean of giving care.

So I drafted a proposal to develop a caregiver support program (because I needed support).

It was approved!

I took a couple of steps back before I began moving forward again. The heat of burnout was hot in my face, and I desperately had to start saying no. In order to do that I needed to implement boundaries. Not as a way to keep others distant - but as a way to authentically care for myself. In order to care for myself, I had to know what I wanted and needed.

So, after my daughter was born, we moved out of Shared Living. I set my own work hours, goals, and limits, and I respected them. I asked for help, and hired a part-time nanny. I did the very best that I could, and then told myself that it was enough. I showed up to meetings with my whole self, and brought all my ideas and passion. I dreamed up a vision of what a community of healthy caregivers could look like and committed to developing and modeling those practices in my own life. I listened and learned and initiated collaborations. I soon began attracting incredible people with amazing capacity to contribute to a vibrant new culture. But what has been most surprising of all is: I set out to change the caregiver culture in our organization, but ended up primarily succeeding in changing myself.

This is the type of work without intrinsic camaraderie or accolades and the culture is not easily changed. Everyone has their own agendas. There is a web of interdependent and discombobulated checks and balances. There isn't ever enough of anything or anyone. It's similar to the culture that can be found in; parenting, teaching, education, public service, non-profits, care-giving, ministry, social work ---all the black hole arenas of giving that offer little in return.  It's the work that is mundane, chaotic, and never ending. The work that is based on survival and fueled by crisis. The "work" that will eat you alive and spit you out if you let it. The giving isn't ever enough, the crises are a constant, gratitude is scarce, and you are rarely given the satisfaction of finishing well.

So yes, today, all of that is still true as I hit "send" on my final email. The broader work culture didn't change. But I did.

My job is now done, my program has been handed off, my goodbyes and thank you's have been spoken and written. And here I am. I didn't drown this time. I pinch myself to make sure. I find that I have learned how to float with a full heart and great confidence in my spirit. Buoyed by boundaries, and leveling my limits. This ending actually feels really good. I did what I could, when I could and preserved some space for the places that really matter to me.

Of course it's my hope to have sparked a lasting difference, but that is beyond my control. Even if my program is redeveloped or thrown out the window, or proven to be insufficient - my deepest satisfaction is not in what I have or have not done - but in who I am becoming through this whole process.

For those lessons of becoming more of my true self: I am grateful.

Another deep breath, and slowly letting go.

This time full of satisfaction.

The Land of the Free

The first time we sat at a table together, I admit -- it was painfully awkward. They were so tall and so very black. From my perspective, it looked like their heads could hit the top of our door frames if they weren't careful.  Their faces had strange scars in distinct patterns and it took all of my precocious twelve-year-old-self to keep from blurting out; "WHAT ARE THOSE FROM?" while my fingers were itching to see if they felt anything like my prepubescent zits.

My sister had invited her class of English Learner students over for a dinner and game night at our parents house in rural South Dakota. I was homeschooled and accustomed to only seeing people who matched my parents beliefs. This household invasion of Africans was entirely new and foreign and exciting! I didn't know what to do or say at first. But then I remembered: I had read somewhere that the game of mancala originated in Africa, so I asked them if they knew how to play. Turns out - I was the one playing it wrong! They taught me the right way to play their native game and it was a far more complex and interesting version than the boring one printed on the white paper with instructions in english only.

I was twelve. My memories with these guests are only ones of playing games, laughing a lot, feeling awkward, and learning that the capital city in their country is Darfur and a few Sudanese words they taught me. I quickly forgot about the scars adorning their faces, and the fact that we were so different. I remember thinking that my sister had the coolest students ever. At the time, I knew nothing about the Darfur Genocide that they survived.

My sister introduced me to many more of her students over the next several years...incredible people from places I didn't know anything about: Sudan, Kenya, Ethiopia, Ukraine, Russia, Uzbekistan --to name a few that I distinctly recollect.

Fast forward ten years to my life in Chicago. My brother worked with World Relief in assimilating new refugees. One day, he brought one of his clients to my apartment because they both needed hair-cuts and since his client had a job interview,  my brother thought I could help. So I said, "okay" and gave them both hair cuts.  I learned that this young man who looked no older than me --had a wife and a young son with severe disabilities. They had fled the genocide in Burma. They left behind all their family members. And his wife was now pregnant again and scared. He was learning English, his wife spoke only a few words. He was so grateful for the haircut that I gave him in my living room, that he invited me and my brother over for dinner. We went. We sat on the floor of their teeny-tiny one bedroom apartment off the Argyle stop on the redline. They served us a rice dish on a paper plate with "other stuff." I didn't ask about the contents in the "other stuff." There were large cock-roaches running across the floor in daylight. They were so happy to host us in their home. They were so grateful to be living in freedom. They offered me seconds to fill the empty spots on my plate. They made me tea. I invited them to our home for dinner the next week. I made spaghetti and meatballs. We became friends. At the time I knew nothing about the ongoing Genocide in Burma that they survived.

The stories of the women have inspired me most of all. I have shared meals with two different women who have survived similar horrors in their respective countries of Somalia and Rwanda. I have learned that to be a woman in the midst of a genocide is a curse in itself. Their stories of survival, assimilation, and resilience in Chicago and Seattle have influenced me deeply. They lost their husbands, their sons, and risked their own lives - but never lost their internal dignity or purpose. They both now work as caregivers for the elderly and developmentally disabled. And they fully embody what it means to give care. They are unglorified saints. They work the long shifts and the late nights - primarily with joy. They genuinely love their clients. They are grateful. They are free. Until recent years, I knew nothing about the genocides they survived in Somalia and Rwanda.

I cannot imagine the realities that any of these brave people I have mentioned continue to face with the traumatic history they have survived and the resources they continue to lack. My worst nightmares have been their realities.  When I have faced brief seasons of hardship and grief in my own life,  their resilience has inspired me to keep going and to keep perspective. They are my real life Hebrews 11 heroes, and they shape my faith in God because their very lives are miracles.  I have always been grateful and proud of the fact that they are a welcome part of our nations fabric.

Until this week.

This week: I am not proud to be an American. It is my personal opinion that we as a nation are no longer the "land of the free". We are now the land of "America First" as our new leader has so brazenly declared.

To Be First - or - To Be Free? Those two just don't go together. They are mutually exclusive agendas. History keeps the score.  To be first, somebody else has to be last, and in that economy there is not room for "liberty and justice for all."

My thoughts this week have been consumed - NOT WITH HYSTERIA - but with real relationships and stories of the incredible people who have sought refuge here.   I  don't know what else I can do, so I sit here and write. I write and call my local legislators and I write this blog.  I feel compelled because I have the PRIVILEGE of white skin, immigrant blood, and a voice on this little blog that gets read by several hundred people.

The vulnerable and the oppressed are not heard in a society that values an "America First " agenda. And so I write while I have this freedom. It's not the preservation or power of my voice I'm concerned about here. You are welcome to disagree with my personal opinions, those are minor.

But the people who I mentioned here are not minor. And neither are the lives of millions of refugees worldwide. I plead with you to please hear the voices of those who are different from yourself. Just listen to their stories and open your heart to their perspective. It's greater than America can ever be.

Please hear their voices.

The resilient survivors who have so much to teach us about values and priorities.

Please hear their voices.

A Double-Dipping of Grace

She double fisted the communion loaf again today. And when she turned around, her contagious smile couldn't have been more full of joy.

I watched her like I have nearly every Sunday for the past three years, while the words of my pastor echo in my heart, "Come empty handed and receive the body and blood of Christ."

And so she filled her two empty hands with the body of Christ. And her face was full of joy.

Some weeks she takes half of the communion loaf in one bulging grasp.

My pastor says, "This table is for you. In a world that tells you that you are not enough - this table is a tangible reminder that God is enough. Come as you are and take what you need."

And so she comes as she is and she takes half of the communion loaf. And her face is full of joy.

Once or twice I have even seen her double-dip her ginormous chunk of communion bread in both the chalice of wine and the chalice of juice.

My pastor boldly declares that everything we truly need to live a transformed life can be found right here at the communion table.  It's a reminder to receive the gifts of unconditional love and salvation that are available every moment of every day through God's amazing grace.

And so she soaks her huge hunk of communion in both the wine and the juice. And her face is full of joy.

My turn comes. I pinch off a small corner of bread from the communion loaf and dip it daintly in the wine. It's less than I need, but to take more would feel shameful or wasteful or selfish. My hands were already full. I take just enough. Nothing more. And I head back to my seat.

But then I pass her. She's already sitting in her pew, with her legs crossed, and looking up at the right hand corner of the ceiling with a huge smile, thoroughly enjoying her huge chunk of communion.

Her joy is so beautiful, so pure, and so compelling.

The reality is: She takes SO much. More than anybody else in our congregation. But not in a greedy or exploitive way. She takes what she needs. She is hungry. And she is honest. More honest than me and my dainty little pinch of neediness.

The reality is: She receives SO much. She receives the gifts that are available to her with open and outstretched hands. And she is satisfied. She doesn't have an agenda of personal advancement or arrogance holding her back. She receives communion with gratitude and doesn't hold back her joy.

She comes empty handed and walks away so full. I come with full hands and leave about the same.

Her joy and gratitude are so transparent and on display, while mine is often buried somewhere much deeper.

Her joy inspires me to be a receiver of gifts - not just a giver.

Because you know what? In all honesty: I need a double fisting and a double dipping of grace every day too.

 ** I've known my lovely friend Sarah for a little over three years. First as her full time caregiver for 2.5 years, and now as her friend and fellow parishioner at Grace Church in Seattle, WA. It's hard to capture her joy in a picture, but not in person. If you were there, you'd be smiling too.

Growing Pains

There is so much to say since I last updated this blog. 

So much life has been lived, shared, and enjoyed in the past 6 months that I have scarcely had time to think about it - much less write about it. Living one day at a time has been my all consuming purpose. The weight of additional responsibilities and challenges this year has kept me grounded and focused.

But today I'm intentionally stopping in the midst of the chaos swirling around me to acknowledge this season for what it is. 

It's been a season defined by growing pains. Inward, outward, and environmental growing pains.

I cling to the belief that the best kind of growth comes through pain. And therefore "pain" becomes not a negative concept to be avoided at all costs, but rather a gift to be embraced. Ask any wise person in your life where they learned their wisdom, and you will likely find the answer to have the same source: Pain. Hardship. Difficulty. 

Why this is - I don't yet know. All I know is that I'm growing - and its painful.

This year, I've purposed to face some of the inward realities of my past through counseling and have been learning to focus on who I am in the present. I'm leaning into who I am created to be, who God really is, and am slowly finding my way from endless striving to please others --towards finding rest and comfort in the sacred space within. It's been painful. Turns out there's a lot of accumulated shit in the spaces that were originally created sacred. And letting go of that shit is --well, a strangely freeing yet difficult thing to do. And so worth it. 

Outwardly, I've also experienced quite the growing pains this year. The growth of a beautiful new soul to share life with and the physical transformation associated with her arrival is perhaps the most beautiful analogy of growth through pain. Pregnancy, birth, sleep deprivation, and so many emotions. So much pain and joy and chaotic upheaval. And so worth it. 

Our shared living environment has also experienced growing pains.  

At this time, we are preparing to move out of our Shared Living home. The home we have shared with two women with developmental disabilities for the past two years and eight months. It's a bittersweet transition. We have no regrets from our time spent sharing life with Sarah, Jodi, and Acacia. It's been a deeply grounding and enlightening experience for us as a family and we will forever cherish these years, "the ladies", and all the memories we have formed together. It's been an even ratio of experiences ranging from challenging to joyous, mundane to exciting, and frustrating to hilarious. And so worth it. 

We are grateful to be leaving Sarah and Acacia in the loving hands of our good friends, Michelle and Chris Jones. They will be replacing us as caregivers starting August 1st. We are moving at the end of July into our own space in the nearby town of Issaquah. We are excited for this new season for all of us.  

Looking ahead, I am primarily excited about spending more time focusing on my two amazing children. I will continue to work with Community Homes on a part time basis as the coordinator of our five shared living homes in King County. I'm eager to stay involved with this housing model and help develop it further. Recruiting, training, and supporting caregivers will be my primary responsibilities - so if you know of any good candidates please send them my way! 

Meanwhile, Jesse has one year left in his graduate MBA program at Seattle University, and is thriving in his work at a local marketing firm. In his spare time he likes to write business plans for his dreams. As a family, we are looking forward to many more camping trips, soccer matches, and Pacific North West adventures in the days to come. In the next few months I will also be submitting my applications to graduate schools for fall of 2017. Stay tuned...the growth has only just begun! 

Caregiving as a Lifestyle

It's been a full two years since my little family of three adapted our lifestyle to make room for sharing life 24/7 with adults who have developmental disabilities.

Two years ago we had no concept how this process would change all of us. We were aware of the obvious challenges and restrictions that becoming 24/7 live-in caregivers would likely bring. We were aware of how little we knew about people with disabilities. We were aware of our fears and the likelihood of being stretched beyond our limitations. We were expecting that this lifestyle would stretch us, grow us, and change us. We were expecting to give a lot.

But one thing that we were not expecting was how much we ourselves would receive and gain through this process.

Recognizing everything we have received has been the greatest surprise over the past two years.  In previous posts, I've written about some of the struggles and challenges of Shared Living. But right now --at the beginning of year three, I want to take some time to reflect on what we have gained as a caregiving family who provide 24/7, live-in care for adults with developmental disabilities.

Part of our original motivation for signing up for this lifestyle job was to stabilize our finances. In 2012, we moved across the country, our first child was born, and we made the painful adjustment to one income and a higher cost of living --needless to say, all of this was brutal on our bank account. Savings quickly drained. It seemed impossible to make ends meet with one paycheck. I was desperately searching for a job that would pay enough to cover the outrageous cost of childcare for an infant. Jesse felt stuck in a dead-end job full of empty promises and poor compensation. We quickly realized that we both needed and desired more education in order to reach for our dreams and provide for our family.  

But how do you go back to school when you are barely able to pay bills at the end of each month?

We first needed to reduce our expenses, pay off our debts, and stabilize our income. So when a woman at our church told us about her three year experience of providing live-in care for adults with developmental disabilities through Community Homes, we thought that this could be a possible solution for our immediate needs. We asked her to connect us and everything quickly came together from there. 

Financially, this job has been a huge blessing. Although it doesn't pay much considering that we technically work seven days a week; it does offer free housing in a desirable neighborhood, free health insurance, no need for childcare, paid time off, and enough paycheck to cover the rest of our needs. With Jesse also working full-time, we have been able to live comfortably off one income, pay off all of our debts, and save the rest. I don't know many other young families who have this privilege. We are grateful to be on both the giving and receiving end of benefits for sharing life. Our lives enable Sarah and Acacia to experience integrated and vibrant lives in the context of community, and their lives enable us to experience financial stability, a simple lifestyle, and meaningful work while pursuing our dreams. 

Don't get me wrong - it hasn't been a cake walk. Getting to this point has taken a lot of discipline, grit, and hard work. Shared Living is no multi-level-marketing gimmick nor fast-track to big bucks. It is a simple, all-consuming lifestyle that has immensely helped us prioritize what is really important in life and forget about competing with everything else. 

Our housemates are inspiring in this area. They don't need a lot to be happy. They need to know that they are safe, they need to know what's for dinner, and they need to know that they are loved and cared for unconditionally. And sometimes an occasional soda. Everything else is pure joy. The simplicity of their lives and their routines have been oddly refreshing to live with. Odd, because simplicity is counter-intuitive to my busy and distracted nature, but refreshing in the way that only the simple things are. Contentment comes from the acceptance of who we are and what we have. Believing that we are enough and that we have enough. Everything else is pure joy. 

The evidence of pure joy can be seen in the shared life of our three year old son. Caden learned how to talk and walk in this home, and I believe that our years with the ladies are having a profound impact on his young life. Although my eyes might be mom-biased, I see a depth to his precious soul that I don't think he'd have without the influence of sharing life with people who are different than him. While he is a completely normal three year old with melt-downs, moods, and misbehaviors, he also has an amazing capacity for empathy, understanding, and concern for others. He lives a primarily joyful life with lots of freedom to imagine beautiful things. It's every parents desire to give their child the absolute best that they can, and its been a beautiful surprise to see that this lifestyle has been a really good thing for everyone in this home. 

Shared living is a beautiful, new model of care that gives me hope for future options for people with disabilities. And beyond that, it has given me hope for my own future and my family's future! Caregiving as a lifestyle has been one of my families best choices. It has taught us that life is best lived as an equal exchange - all giving with no receiving is a recipe for co-dependent disaster. We as caregivers cannot do all the giving while the ladies do all the living. Our household thrives on shared living and shared giving. It is a mutually beneficial dynamic.

I'm grateful to be supported in my caregiving efforts by Community Homes, an organization who cares about my personal thriving as well as the residents in their homes. This year, they have a big dream which is to see the number of their Shared Living homes triple --from four to twelve! As they are expanding this housing model, I am stepping into a new part-time role as the coordinator for their new Shared Living homes. As a coordinator, part of my expanded responsibilities include recruiting, training, and supporting new caregivers. 

The need for housing and care options for adults with disabilities in Washington State is immense. The reality is that there are are very few options. And there are literally thousands of people on waiting lists. The greatest need in this gradual movement away from institutionalized care is YOU. We need more awareness of the need, we need more financial partners, and most of all we need more amazing people for the hands-on work of respite and live-in caregiving. We aren't looking for mediocre, half-hearted, laissez faire people who kind of care. We want people who are passionate, eager to give and receive, ready to teach and learn. We want people who desire to make a difference and be part of something that is greater than themselves. Consider this an open invitation to explore the possibilities of beginning a journey towards the simple, rewarding lifestyle of caregiving. 

It might just change your life in ways you don't expect. 

We need your help to reach our goal of 12 Shared Living Homes in 2016! Here are some simple ways that you can be involved:

* Share this information with anybody who you think could help us achieve our dream of opening 8 new homes in 2016

* Watch this 4 minute video about the story of Community Homes

* Email me directly with any questions or to schedule a meeting: ruth@community-homes.org

Stillness

BE Still

even in the most full days of life 

                            and KNOW that I AM GOD

BE Still

even in the smallest joys of everyday 

                            and KNOW that I AM GOD

BE Still 

even in the places between difficult and impossible

                             and KNOW that I AM GOD

BE Still

even in the most gut wrenching anguish

                             and KNOW that I AM GOD

BE Still

even in the loneliest places that no friend can fill

                             and KNOW that I AM GOD

BE Still 

even in the chaos of change and uncertainty 

                             and KNOW that I AM GOD

BE Still

even in the tiniest glimpse of curious wonder

                              and KNOW that I AM GOD

BE Still

even in the sight of breathtaking beauty

                               and KNOW that I AM GOD

BE Still

even in the presence of those who have lost your trust

                              and KNOW that I AM GOD

BE Still

even in the funeral that doesn't feel fair

                               and KNOW that I AM GOD

BE Still

even in and among the flowers that mark the grave

                                and KNOW that I AM GOD

BE Still

even in the reality that looks very different from the plan

                                and KNOW that I AM GOD

BE Still 

even in the routines that become most mundane

                                 and KNOW that I AM GOD

BE Still

even in the rare moments of rest and reprieve

                                  and KNOW that I AM GOD

BE Still

even in the loss of another, of one who loved you well

                                   and KNOW that I AM GOD

BE Still

even in the flooding of memories that are all you have left

                                    and KNOW that I AM GOD

BE Still

even in the rain that won't relent

                                   and KNOW that I AM GOD

BE Still 

even in the pain in the present

                                   and KNOW that I AM GOD

BE Still

even in the shortness of your own breath

                                    and KNOW that I AM GOD

BE Still 

even in the burning heat of anger with nowhere to go

                                    and KNOW that I AM GOD

BE Still

even in the experience of injustice and delusion

                                    and KNOW that I AM GOD

BE Still

even in the heavy silence that no words can fill

                                    and KNOW that I AM GOD

BE Still

even in the yearning ache of longings unfulfilled

                                    and KNOW that I AM GOD

BE Still

even in the miracle of new life emerging from within

                                    and KNOW that I AM GOD

BE Still

even in the faintest glimmer of hope

                                    and KNOW that I AM GOD

BE Still

even in the embrace of the one who loves you intimately

                                    and KNOW that I AM GOD

BE Still

even in the worries and fears that can consume your being 

                                    and KNOW that I AM GOD

BE Still

even in the nights of restless tossing and turning

                                    and KNOW that I AM GOD

BE Still

even in the elusive places of peace

                                    and KNOW that I AM GOD

BE Still
even in the pursuit of growth, healing, and change
                                    and KNOW that I AM GOD

BE Still

even in the waiting of promises yet to be fulfilled

                                    and KNOW that I AM GOD

Be still and know that I am God.

Psalms 46:10

This Shared Life. Year Two.

It's been two years since our lives merged with the lives of two women who have complex developmental disabilities. 

We began this journey with little experience with adults who have developmental disabilities; but with open hearts, willing hands, and a commitment to share life for at least two years. 

Two years ago we didn't know what was going to happen when we put five people with different backgrounds, ages, abilities, and personalities together in the same house. 

It's been an adventure.

In these two short years, both Sarah and Jodi have impacted us in ways that we still don't have words for, but will forever remember. 

  

These two ladies are truly remarkable people. 

They are people who live with resilience, grit, and joy in the midst of daily challenges and struggles. 

Their resilience has become an inspiration for Jesse and I in the face of our own challenges.  We have collectively come to depend on the routines and structured life we have built together.

 

In one sentence, I would sum up these two years of sharing life with Sarah and Jodi as "an amazing learning opportunity full of unexpected life lessons." 

Lessons in both giving and receiving patience, grace, and love to each other and from each other. None of the five of us will ever be the same. Lives change when they are shared with people who are different from yourself. 

Pictures are worth a thousand words, but there are always a thousand unspoken words behind the pictures. Although full of lessons and growth, these two years have by no means been easy. We weren't expecting easy. Honestly, we didn't know what to expect. Our time with Sarah and Jodi has been a strange mixture of joys and challenges, laughter and frustration, routines and flexibility. The first year was really unique. Full of new discoveries, new joys, and new growth. 

Hearts full. Hands full. 

This second year has been more defined by struggle. The novelty has worn off. Routines have set in. Grieving of losses in our personal lives. The development of dementia's rapid digression. 

Hearts heavy, and hands heavy.

Dementia is no joke. Two years ago, it was apparent, but not incredibly severe for Jodi. She still had her job at the recycling center, and she still had a lot of independent skills for daily living. But dementia is an unpredictable and progressive disease with a mind of its own. 

  

 

This has been a really tough year for Jodi.  Her story is worth telling. 

As a younger woman with Down Syndrome, she used to enjoy a lot of independence. She used to take public metro buses all over King County. She relished having this freedom and endless amounts of soda. She's always had a strong work ethic and has taken a lot of pride in having a job. One of her more prestigious jobs included working for King County Council delivering mail, but her all-time favorite was handing out programs at the Mariners games. Like most adults, she's always enjoyed seeing her bi-weekly paycheck with her name on it. Being a contributing member of society has given her a lot of strength and dignity as a person. 

In recent years, she has been diagnosed with early onset dementia, and has seen a rapid decline in her ability to make wise decisions, be safe, and care for herself. This was recently accelerated by losing her job earlier this year at a recycling center where she had been employed for the past eleven years. Jodi doesn't like change, doesn't like being unemployed, and she does not like receiving care from others. Her dementia has continued to digress rapidly and she has become increasingly challenging to care for, especially in this past year.

Dementia is becoming a  prevalent issue for the aging population of people with Down Syndrome. According to the National Alzheimers Organization this is what some of the early symptoms of dementia with down syndrome can look like:

In people with Down syndrome, changes in overall function, personality and behavior may be more common early signs of Alzheimer's than memory loss and forgetfulness. 

Early Symptoms may include:

• Reduced interest in being sociable, conversing or expressing thoughts

• Decreased enthusiasm for usual activities

• Decline in ability to pay attention

• Sadness, fearfulness or anxiety 

• Irritability, uncooperativeness or aggression

• Restlessness or sleep disturbances

• Seizures that begin in adulthood

• Changes in coordination and walking

• Increased noisiness or excitability

• (other sources also include increased anger and depression)

With the exception of seizures, and the addition of many other challenging symptoms not listed, this is what life with Jodi has come to look like this year. Her increasing need for attention and care and the challenges that come with providing her care, have been intense. Especially intense when her increasing needs are so evident to those who live with her, and yet the computerized assessment that determines her eligibility for services recognizes no need to increase her personal care hours. 

People with disabilities need a small army of strong advocates in order to receive the appropriate level of care and services. Their own voices are not well heard or understood. Even with her incredible and involved step-mom, and a team of influential people advocating on Jodi's behalf for well over a year, the necessary increases to compensate for her increasing care needs were not approved. The current DSHS system in the state of Washington is grossly inadequate for the aging population of people with disabilities. For example, according to Jodi's most recent assessment, she is approved for receiving only three and a half hours of paid care per day. If you know anyone with dementia you know this is ridiculous. If you know anyone with both Down Syndrome and Dementia - you know this is absurd. 

This is a big issue for our generation to be aware of. To know and consider the needs of our fellow human beings who are most often overlooked in our society. 

State operated mental health institutions are thankfully becoming increasingly scarce, but what isn't as commonly known is that good housing and care alternatives are equally as scarce. Funding ongoing services for adults with disabilities is a struggle. Parents need good options for their adult kids who have disabilities, and frankly in 2015 the options are few. Adults with disabilities want to - and have equal rights to - live independently in our communities. Independence gives their lives added meaning, value, and worth. More caregivers and advocates are needed in addition to changes in legislation if real change is going to be seen in our lifetime. 

I want to see this change happen. My passion is partially born out of love for my three nieces and nephews who have developmental disabilities. I want to see a different future with better options for them as they grow up. I haven't stood passively by the side-lines as Jodi has struggled this year. I've written pages of appeals, I've documented in very specific spreadsheets the amount of actual hands-on care that Jodi requires --which is three times greater than the amount she is currently approved for. I've spoken with case-mangers, supervisors, psychologists, and anyone who will listen or offer guidance. But the results always return the same: on paper she looks "healthy" and you can't change the assessment. The assessment is the tool used to define the need for services. End of story.

Sadly, this has become the end of the story for Jodi in the context of our Shared Living Home.

 

The weight of Jodi's complex dementia and the ongoing struggle against her assessment has become to much for us to bear in the setting of 24/7 live-in care with five people to think about. We are completing our two-year commitment with Jodi this month, and then she is moving on to hopefully find housing in a different setting with rotating caregivers. 

The rest of us are staying for at least one more year. A third year with Jesse, Ruth, Caden, Sarah and a new housemate who will be joining us in December.  Stay tuned for more adventures yet to come.