This Shared Life.

"Life is not a possession to be defended, but a gift to be shared." -Henri Nouwen

Life.

A gift to be shared.

That pretty much sums up my year. This year. 2014. Our year. One year of sharing life together with two women who have disabilities. 

The Chase family + Jodi + Sarah. #sharedliving

Twelve months of 24/7 care and responsibility. 

An in-depth life study in Down Syndrome, Autism, Mental Health,  Dementia, and Two-Year-Olds.

A crash course in learning about the fragility and frustrations of a life dependent upon government funding. Assessments. Appeals. Advocacy. 

The privilege to be paid to work at home and invest precious time with my son. 

The opportunity for Jesse to pursue grad school and begin a new career.

Endless opportunities to create positive solutions. Or at the very least - to try something new. 

Showers. Toenails. Toothbrushes. Toilets. Cleaning. Observing. Prompting. Cueing. Helping. 

Planting. Planning. Cooking. Canning. Healthy food. Delicious food. Plenty of food. 

Challenging days. Joyful days. Discouraging days. Hopeful days. Long days. Short years.

Shared living is constant. Never ending. Exhausting. Demanding. 

---And yet strangely.... fulfilling. Yes. It is fulfilling.

To share life. To live a little differently. A little more openly. 

To embrace the challenges and choose joy. To count the blessings. To see the gifts. To cherish the memories as they are being made. To love others. To create new possibilities. 

To find inspiration in unlikely places and people. 

To learn from the parents who have spent decades faithfully loving their children unconditionally and who continuously advocate for their quality of life.

To see Sarah and Jodi thrive. 

To see my son Caden thrive and live without fear of those who are different than him.

To share life fully IS filling. 

Fulfilling. 

People often ask me: "How is it going?" and "How are you doing?" Honestly, I don't always have a well-thought out response, but don't let that deceive you. You need to understand: my days are a blur. If you catch me on an especially challenging day, I might just burst into tears if you ask how I'm doing - but don't be scared, I'm just so happy that you asked! I always carry with me the weight of responsibility for the three people in my care. My stress levels are higher than the general population. Research has shown that caregiving - in any capacity (typical parenting and other "helping" professions included) is the single most stressful job out there. And if the people in need of care have any additional health issues, disabilities, cognitive delays, or emotional trauma; pounds of stress are added to the backs of those who provide care. 

It's a heavy load. It's a precious load. 

So - How IS it going??? Well, we all have enough to eat. We all get enough sleep. We all have enough money. We all have enough possessions - and we definitely have enough Disney Movies. We have a warm and cozy home with a roof over head. We have great neighbors. We have supportive friends and family. We hug tightly and laugh deeply whenever we can.  I can say with full integrity that it is going well. We are ready to begin year number two fully engaged and grateful. 

Finally - How am I doing??? I am learning. I am changing. I am persevering. Don't ask me how or what or why - I don't know that part yet. All I know is that I need to focus on one day at a time - while continuing to reach for my dreams and purposing to keep my spirit alive. I am intentionally not allowing "care-giving" or even "being a mom" to become my sole identity. I am still me. Ruth Chase. I'm just sharing parts of me with parts of others for parts of time. Sharing life. Because I believe that my life IS a gift to be shared. And I don't resent sharing it. Because - their lives are gifts as well. 

The Only Gift I Have

"Self-Care is never a Self-ish act. It is simply good stewardship of THE ONLY GIFT I HAVE. 

The GIFT I was put on earth to offer to others.

Anytime I can listen to my true self and GIVE IT the CARE it requires, I do so not only for myself, but for the many others whose lives I touch. "

- Parker Palmer (paraphrased from his book "Let Your Life Speak") 

 Self-care is becoming an increasing passion of mine. It is a new passion. Only recently have I come to the realization that having the ability to care for yourself is actually one of the greatest privileges in a healthy life.

Self care isn't something that I often hear affirmed outside of the flippant, "Take care of yourself!" phrase that is frequently thrown around in conversation amongst friends. But what does that really mean? To take care of yourself? To take care of My Self? Is there a sincere challenge calling out in those seemingly simple words? I seem to have spent most of my life equating that statement to be on equal terms with, "Have a nice day!" and "See you later!"

 Maybe some of you are better at this than I am. Historically, I have not been strongly suited in this regard.  Those who knew me through my college days bore witness to the peculiar way in which I tended to run myself straight into the arms of mono and hospital beds. Pure physical and mental exhaustion brought on by complete lack of self care. It used to take me about one year to run through a whole cycle of crazy busy-to-crazy sick. 

This summer I continuously heard the phrase "take care of yourself" earnestly and lovingly spoken to me from numerous friends who were urging me to not burn out. Friends who genuinely cared for my well-being. It was a statement that I needed to deeply hear and find a deeper understanding of its meaning.  I don't want to continue on the unhealthy cycles of crazy busy-crazy sick, and yet at times life just demands so much that adequate "taking care of yourself" seems utterly impossible. Trust me. I know. My passion for living life to its fullest often curtails the essential and life giving need of -STOPPING - to take time for personal rest and renewal.

It's been two years since my last episode of crazy-sick...which I recall as being my recovery after Caden was born. It took me a long time - several months - to bounce back after our major move, his birth, our second move, and all of the changes that came with all of that. I spent most of those months feeling like I was on the verge of a major breakdown either physically or mentally. I clung desperately to simple things like running in the rain, my infant son's smile, the natural beauty of the Pacific North West, and simple prayers like, "it is enough" and "thank you Lord" to get me through those dark days. Simple things that I used to overlook, take for granted, and pass by --- when I was too busy to stop.  The best thing that emerged out of that dark time was that I couldn't be nearly as busy as I was accustomed to. Having a baby greatly reduced what I could commit to and accomplish in a day. I had to learn to be satisfied with living life less busy, and along the way I discovered the gifts of beauty in the everyday ordinary.

And so that is how it was for awhile. Looking back now, I can see what a sweet spot that first year of transitioning into parenthood was. I kind of love the way a newborn made me slow down and gave me time to evaluate my life and enjoy the scenery more. However, since then, I have been noticing that slowly but surely I've been ramping back up to my previous levels of crazy-busy. I really do love it. You know --the adrenaline rush that comes when you commit to tasks that you hypothetically don't even have enough time in a day or a week to accomplish. Busyness is an addictive force in my life. The thought of possibly doing it ALL is just so exhilarating...until that actual day comes and the anxiety of trying to figure out how to get it all done nearly crushes me. Ah! Welcome to my summer! 

I confess: I did bite off more than I could chew this summer.  It was a busy season. The details don't matter and aren't the point; it will suffice to merely say that I am not actually superwoman, and I do have limits. It was a busy season. I felt myself pushing right up against those limits all summer. But I'm proud of myself for recognizing this summer as just a busy-season, it's no longer my life goal or life style to just be busy for the sake of being busy. I am purposing to take a more active responsibility for myself and am seeking to be a good steward of my gift of life. That is the only way I have life to share with others. 

After a two-week vacation spent camping with my family throughout the Olympic National Park and surrounding area, I feel refreshed and rejuvenated. Grateful and gifted. Ready to share life with others once again. 

This summer gave me ample opportunities to be the recipient of grace from others, which is both humbling and beautiful to experience.  This post would not be complete without a sincere thanks to the many dear friends (and husband!) who extended grace to me this summer and supported me through this busy season - even in the midst of their own busy seasons. You know who you are friends, thanks for helping me see who I am. And for that gift, I am truly grateful.

  

Ups and Downs and All Arounds.

I can't believe its been nearly SIX months since we began our shared living adventure. Half of a year (which is one-fourth of our two year minimum commitment) has already passed. The rate at which our days go by has definitely increased over the past six months and reminiscing on it feels like taming a whirlwind. Similar to becoming new parents, this lifestyle change has been transformative and overwhelming and joyous all at the same time. In some ways it feels like we've been doing this for years, and in other ways it feels like we just started yesterday.

The best analogy that I have come up with to help friends and family understand what our shared living life is like is that of a ferris wheel. 

Not a roller coaster mind you - just a ferris wheel - please don't get the amusement park apparatus confused. Life with Sarah and Jodi is NOT a roller coaster - it's not fast, it's not extreme, it's not scary, and it's not incredibly thrilling. It's really just about as up and down and round and round and slow as a ferris wheel.  We have high days and we have low days, and we have many days that just feel like we went round and round and round. The view looks pretty much the same day to day, but when the skies are clear the view has the potential to be quite remarkable and inspiring. For the most part it is fair for me to say that our shared life is rather monotonous and tends towards mundanity.

I must take a moment here to pause and confess that I am actually a *bit* of an adrenaline junkie. My skin tingles just thinking about spending a day at six flags, sky diving (bucket list), or snowboarding down some real mountains. I'm a thrill seeker, a risk taker, a "skys-the-limit" kind of dreamer; a free spirited spunky girl who really does not like being confined. It's no surprise that I have never before in my life been excited about ferris wheels in the least.

And yet here I am. Riding the same ferris wheel for at least two years - maybe more. And I can't help but laugh! And most of the time I laugh with genuine joy! Ferris wheels are actually A-MAZING! (And, ok, at times a little boring) But who would have known? I finally get why people love ferris wheels. They are slow, but there is a rhythm. They go in circles, but you get a well rounded perspective. You sit without safety harnesses, but you are safe. They start and end low to the ground, but you discover a higher perspective somewhere in the middle. You share the car with others who are often strangers, but through the ride you share an uplifting experience.

As with everything, much of the enjoyment comes from perspective. In comparison to death-defying roller coasters named things such as "Steel Venom" and the "Wild Thing" poor little ferris wheels don't offer much. But one powerful and life changing lesson I'm learning is that joy does not equal excitement. Joy is something much deeper than that. I'm realizing that up until now, much of my life has been about chasing excitement and adventure and neglecting the joy available to me in each moment. Roller coasters definitely give an intense rush of joy through the surge of adrenaline, but they don't leave any leftovers. Living for exciting moments makes for a lot of depressing moments when you're in-between thrills. Ferris wheels are much more subtle, they are more simple, and they are more stable. You don't get a big rush of anything from them - unless you are scared of heights (and in that case you might have an accident in your pants like some of us do - but don't worry, I'll clean you up ;).  Ferris wheels have a unique ability to provide space for joy.

Our lives are very full. Being the primary caregivers for three people - two of whom are adults with constant need for supervision and support is no small task. It's actually a lot of work. Keeping mental and emotional space available for learning, personal growth, relationships, really is a discipline. We have much to be grateful for. However, it is a challenge to live out of gratitude on a daily basis. It's a temptation to let the ferris wheel go through its rotations without allowing ourselves to be amazed. I mean - we've seen it all now...right?? Sometimes its just difficult. It's that moment when you are on the ferris wheel and its going around the same circle for the 15th time and you see those happy people at the other end of the park with their arms flailing, screaming their lungs out, going down a 400ft 90 degree drop --and you just feel a pang of jealousy that you aren't there instead. Does anybody else out there have that problem??? When I stop embracing where I AM  -is precisely when I lose sight of joy and only see the confines of my monotonous life.

Thankfully, we are provided with ample resources to take time off. However, it requires much more detailed planning than simply packing up and leaving. I'm still fully responsible for my ferris wheel when I'm not on it. Every aspect of the ladies daily routines needs to be communicated and written out and the house needs to be fully stocked for a respite caregiver to live with Sarah and Jodi while we are away. In April we enjoyed a road trip vacation that took us through Oregon and Northern California where we spent most of our time in San Francisco with some dear friends. Jesse and I have always treasured road trip conversations and the opportunity to just be with each other and explore new places. This trip was so refreshing and needed. Caden is proving himself to be quite the compatible and delightful traveling companion as well. We are amazed at his patience with us and thirty hours in the car! In May we were able to get away again for several days to visit family back in the Midwest.

These brief respites help us re-enter the ferris wheel with renewed purpose and joy. We actually miss the dear ladies when we are away! They have become a huge part of our lives and we love them like family. Caden calls them collectively "WADIES" and individually "BOO" and "SEERAH". He thinks their bedrooms are the most coolest places in the entire house and a good chunk of my daily ferris wheel life is pulling him out of their spaces and attempting to teach an almost 2 year old something about boundaries.  At least we all enjoy bubbles, slides, picnics, teeter-totters, dogs, and disney movies. It's really quite a circus most of the time.

Somewhere in the midst of our circus/ferris wheel life we are amazed to look back and see the progress in our educational and personal goals during this time. Jesse and I both took the GRE (the test that is required for grad school admittance) which meant four months of grueling late nights with one of us caring for the ladies and Caden so the other could study. It's been exhausting but so worth it. Jesse was accepted to Seattle University to go back for his Masters in Business Administration with a focus in marketing and sustainability and will be starting this September. I am SO so proud of him. He's worked unbelievably hard for this. I'm also so grateful for the way that he encourages, respects, and breathes life into my dreams of further education while pursuing his own path. He's a rare and incredible man. We're both taking statistics this summer and then my studies will be put on hold until he finishes.

Meanwhile the ferris wheel goes up and down and round and round...up and down and round and round...up and down and round and round....

Motivation

ABILITY is what you're capable of doing.

MOTIVATION determines what you do.

ATTITUDE determines how well you do it. 

-Lou Holtz-

Oh my dear Motivation! How strong and courageous I feel when you are by my side. 

My undergraduate studies in psychology and social work equipped me in a lot of unique ways - but the current most useful tool I gained from my studies -and my time in chess club- are the basic principles I learned about human motivation.

This is something that I continuously evaluate - both in myself and in my rambunctious household. Why do we do what we do?? It's good to take a moment to stop and evaluate the underlying motivations of our decisions. Motivation is something that we all share in common.  It takes many forms, but common to the five of us in this house is a wild range of curiosity, ridiculous stubbornness, unique obsessions, and conflicting plans for tomorrow --and dinner. Under the surface of these attributes dwells deep creativity,  ongoing learning, a declaration of personhood, and the ability to hope and dream. Motivation is a beautiful thing.

The blending of our differing motivations has been perhaps my most challenging learning curve thus far. Especially because Sarah and Jodi and Caden aren't easily able to articulate what they are capable of or motivated by. I have to learn. They have to teach me. And the process is continuously changing and evolving. There is constant give and take as we live in this life-giving tension of shared space. So the question is daily begged: why? Why do we do this? What is my motivation? Why do we choose to "share life" with two women who have disabilities?

There are four primary reasons why we are here. I want to put these reasons in writing so on the days when I lack motivation I can remember. The first two are extremely practical. The last two are extremely personal.

//Finances//

Simply put, we need a secondary income. We highly value living in an urban area and this means the cost of living is also higher. Having a child also raises our cost of living. I started my own massage practice last year (www.momssage.com) and I am continuing to maintain it in addition to this new job. It takes years to build a steady clientele so while Momssäge slowly builds momentum it is an enjoyable outlet for me, but its not a sufficient financial contributor. It was last February that we heard about the opportunity to work with Community Homes through a connection from our church. After a few months of praying about it we decided to accept this opportunity as a blessing that provides a second income, secure housing, and eliminates the need for excessive childcare costs.

We are grateful to have the financial stability to make our dreams a reality.

//Education//

Jesse and I both have dreams of completing graduate school.  In order to reach these educational goals, we first needed to find financial stability. We are thrilled to finally be taking steps towards these bigger dreams! Jesse is in the process of applying to an MBA program that will *hopefully* start this fall.  Somewhere down the road, I also will be going to grad school for Occupational Therapy. In the meantime, while I work on finishing my pre-requisites; this job provides me with solid, hands-on experience that helps prepare me for the kind of work that I dream of someday doing as an OT.

The future work that I dream of doing involves motivating others to see the value of their lives.

//Family//

Until your life personally engages with someone with disabilities you don't quite understand the value of their lives. --At least this was true for me. Don't get me wrong - I've always been taught to be kind to  people who have disabilities and to treat them with respect- but I never really understood the VALUE of their lives until my twin nephews Isaac and Caleb were born (almost) two years ago. Their lives have deeply impacted mine. I don't know if there are even words to describe just how this impact happened. It just happened. Maybe it was the first time I met them - when they were just 3 days old and the doctors didn't think they were going to make it. Their tiny little hands the size of my pinky. Their skin so delicate it was almost translucent. Their lungs struggling with each inhale. The massive machinery that kept them alive. Or maybe it was the first time I held Caleb in my arms when he was 5 months old. The weight of his warm body on my belly. His beautiful, trusting, blue blue eyes. His feeding tube, trachea, and g-tube suddenly fading to just inanimate pieces of plastic when compared with the beauty of who he is. Or maybe its been in those moments that I've had the privilege to just hold Isaac's pudgy little hand. With stiff fingers that don't bend. His quiet determination to make the wrist twitch just enough to say "hello".  Or maybe it was in watching their parents over the past two years pour out every ounce of life-love-blood they can muster every single day as they fight-weep-rejoice to give to their precious sons even just ONE more day of life. I don't have the words I want to describe just how deeply Isaac and Caleb have impacted me. I just know that they have.

I realize that not everybody who has the opportunity "chooses" to share life with a child with disabilities.

Maybe its something you have to open yourself up to.

//Faith//

Isn't this what its all about? Faith? I've been on a bit of a quest to understand what it really means to live a life of faith. The black and white answers of my fundamental past just don't cut it in real life. Especially when faced with hardship, confusion, pain, and suffering. Contrary to such black and white beliefs -I'm learning that faith isn't so much about changing these circumstances as it is about changing me.  I like how Richard Rohr describes it: "Faith always invites us to a new and unfamiliar place." In the new and unfamiliar - that's where faith comes to life and motivates and inspires me.

//To take risks.
//To open myself up.
//To let myself be vulnerable to the touch of God and others.

I must admit its a scary thing at times. To let myself be touched. Scary because it exposes me to potential for greater hurt and pain. Scary because through this process it forces me to face my own fragility and imperfections. Scary, yet motivating. Motivating because it gives my time here with Sarah and Jodi a purpose. They are not just a job - they are beautiful souls created in the image of God and I have a lot to learn from them. I'm learning about a deeper kind of faith that is rooted in acceptance of life's hardships and sorrows and joys and imperfections.

It's in the life of the vulnerable that I see the Christian gospel most clearly. Faith somehow finally makes sense in the colorful and grey. The simplicity of acceptance. Accepting that which I do not understand. Accepting those who are different from me. Finding our differences to be not so different after all. Curiosity. Stubbornness. Obsessions. Plans. Hopes. Dreams. In a word, faith is my ultimate MOTIVATION.

//To keep going.
//To keep trusting.
//To keep learning and growing and changing.


//PS// It's been really encouraging to hear positive feedback from so many people who have heard about our new beginnings. We really weren't expecting to receive so much encouragement. I really truly want to thank you if you are taking the time to read our updates and look at our pictures or share your support for us. It means a lot to know there are people out there cheering for us, loving Sarah and Jodi, and also sharing life with people who have disabilities.

New Beginnings

We're at the beginning of something new. And we are SO grateful to be here. 2013 was a challenging year for our family as we struggled to find our feet after having moved across country, made the ongoing adjustment to parenthood, searched endlessly for better career options, and experienced some painful relationship breakdowns. We are hopeful that 2014 is a year of recovering and rebuilding. We are moving forward.

Forward movement has brought us to this point in our most recent adventure. Sharing life with two women who have down syndrome: Sarah and Jodi. They have beautiful souls, huge hugs, contagious laughter, and the most stubborn eyebrows you've ever met. My own surprisingly strong -and sometimes furrowed- brow has definitely found its soul-mate in these two. 

It's been another whirlwind of a transition and I haven't had much down-time outside of a grocery store to reflect on what has all transpired in the past month. I've had a lot of friends asking what our new life is like so I want to take some time to answer that as honestly as possible while also aiding in my own processing. This is a brief summary of what we've been up to over the past couple of months. Perhaps someday I will have more insightful reflections of what I am learning and how I am changing through this, but for now, all I have are the raw facts.

We moved into our new home in the Seattle suburb of Bellevue on the first of December. Jesse was ridiculously busy at work that month due to being in retail during the holidays, but he somehow managed to do an incredible job of going above and beyond his work goals and help with this move. One step at a time was our inner monologue for this month. We really had to pull together as a team to get the massive amounts of work done that were before both of us. Setting up a home for people with disabilities is no small thing. Even after obtaining the proper certifications and licensing there is a ton of paperwork, various inspections, and endless communication needed with their case-workers, supervisors, job coaches, transportation, pharmacists, care-givers, and parents. All of this was pretty overwhelming at first.

Two weeks later, Sarah moved in. We had 5 days off for Christmas, during which we also celebrated our 6 year wedding anniversary in Victoria BC: a timely respite.  Jodi moved in December 31st. Since then - and up until now - we have all been sick at one point or another. We shared a viral cold that put a couple of us on antibiotics. I think the stress of this major change plus the individual stresses we brought with us really did a number to our immune systems. I'm hopeful that we are at the end of this as the antibiotics near their end and Sarah and Jodi return to their regular work schedules.

Thankfully, both Sarah and Jodi's parents live nearby and are very helpful and supportive and do an INSPIRING  job of loving their daughters well. We have felt very well supported and embraced as part of the broader family of Sarah and Jodi.

Now that the sickness has *mostly* passed, we are hoping to settle into a new routine and rhythm. On typical weeks - Sarah and Jodi leave home for 7 hours M-F for their work and day programs. The state of Washington is one of the most progressive in their care for people with disabilities and it thrills me to learn of so many AMAZING opportunities for people to work and have the worth of their existence validated in this way.

Sarah and Jodi have lived semi-independently in Adult Family Homes for the past 7 and 14 years respectively. They are now in their mid 30's and 40's and each have unique complications in addition to their Down Syndrome. Because of their increasing needs, their parents have chosen to arrange this housing model which provides more focused, one-on-one care and enables them to still live as independently as their abilities allow. They do need almost constant monitoring for health and safety and can't be left home alone. As their full time care-givers we do get time off and respite care - and have given a 2 year minimum commitment to this job/lifestyle.

We're doing something very different - my brave little family of three. We hope and pray that it is the good sort of different. We'd appreciate your thoughts and prayers as well! We have A LOT to learn. Caden is loving his new housemates and its a joy to watch him bond with Sarah and Jodi.

My prayer is that this "job" brings about the kind of "different" in us that makes our hearts bigger. The kind of adventure that makes us more grounded and content - regardless of where we are or who we are with. And the kind of work that knits us closer together as we learn to create a space that values vulnerability.

My hope is that this is a season in our lives that makes us more aware of our own needs for forgiveness, grace, and patience from others as we learn about living in this tension of giving and receiving love from our two new housemates.

More to come...