why thrift shopping is my activism

David and I went on a date last night to our favorite Ethiopian restaurant, Zemams. We order the vegetarian sampler and get out at $12 before tip. After dinner I remembered Bentley needs new shorts- it's total sale season in the stores. I know this because I have been a bargain shopper my whole life and also because I stopped at Target last week for dishwashing detergent and I saw the end caps filled with sale items. I love sale season because I can stop at a store quick or open up the laptop and go to some of my fav kid stores and buy shorts for $4- I know my Michigan friends aren't looking for shorts right now. :) Then I stopped. Even though we are on a tight budget- read my most blog if you missed it- I can still find cheap clothes new... but then I remember the fast fashion epidemic (read here and here and my blog here. And so I paused. "Let's go to the thrift," I said. So we did.

We found him 6 pairs of shorts and a pair of barely worn minion pajamas, and a pair of shoes and sun shirt for Lily. The price was under $14. I saved money and I took in some of the excess.

Sometimes I think to myself- my husband is a doctor and I'm working full time I don't need to shop at the thrift anymore- I can go to the store and buy new. Then I think- what a terrible thing to say- does money make someone worthy to buy new? It's embedded in our culture that if you work hard you deserve to buy yourself nice things- new things- or if you're poor that you deserve to use a tax return or other excess money to buy yourself something nice. There's a huge problem in this thinking... why is our worth tied to what we own or what we wear? Fast fashion is constantly changing which means our clothes are constantly going out of style- and because things are cheap we can constantly buy more and give away- and buy more and give away..... but the world doesn't need more clothes- more shoes- more stuff- the world needs us to cut back. Keep what you have- wear it for a decade. Cut back on gas and electricity. Cut back on processed foods.

Now that we are on this mission to pay back our debt in 3 years I am already seeing shifts in my thinking. It's so easy to have a bigger income and justify spending all over the place- and so to have the big income, but choose to pay off the debt fast means I am constantly evaluating if I need something or not- and it's not because I can't afford it- because I can- it's because affording it means I pay more in interest on a debt.

If we hadn't made this decision to pay off the debt I probably would be spending more on fair trade/organic- which btw is good because it gives someone a job that provides a life- but buying at the thrift means cutting down on the global impact of fast fashion, providing jobs in this country, and saving money to be able to help others and see the world.

So last night when I was wondering- why am I here sifting through all this stuff when I could just pop open the laptop and sit back with a glass of wine- I said quietly to myself- this is my activism. This is a small difference that I can make. 

entering austerity

David and first met in Cuba. We had educational visas to go for spring break and study art and politics. I never wrote the paper- I honestly went to swim in the Caribbean- David- the political historian went to learn and experience a new country. We both have been passionate about traveling since we were little. It's what drew us together. Most of our marriage has been geared towards getting him through medical school, residency, and through the first year of his job. This is the first fall I've worked in 9 years. We've been able to do some traveling over the years- more than many, but significantly less than we would like to do.

Medical school cost us $300,000. We are down to $287,000. If we pay over 29 years as we are set to do now we will pay close to $650,000 total. This was our plan- let's not stress- let's just live and pay it down over time.

Recently one of my friends moved with her 3 young children and her husband to Morocco. He is now the principal of an international school and she will continue homeschooling. Their plan is to stay for 2 years. I've been reading her blog and seeing her pictures on facebook and I am so jealous! They're experiencing the amazing Moroccan culture- from foods, to beaches, to sunsets, to markets, to a really fun life. I don't doubt the troubles and missing him and sacrifices- but I think the gain is well worth it. I started talking about how I'd love to travel more with the kids and David reminded me anytime we travel we have to consider the $3000/month payment we are making right now for student loans.

A few months ago David said he would like to pay down the debt and I said- nope. I want to buy a new house. No, actually make that 6 weeks in Costa Rica. Actually, no, let's just buy a house in Mexico. I know- I'm a dreamer. It comes from my dad. But hey- without some dreams he would've never made the 8,000 mile trek from Detroit to La Paz, Bolivia. I think dreams keep us moving- they keep me moving anyway. I enjoy thinking up things to do with this wild and crazy life. But every time I start dreaming I hit the wall of debt. I hate this wall.

The other thing the wall represents is less options for Bentley. We have to save and consider Bentley's needs. It's part of the diagnosis- part of the reality. Not every family can do that for their child, but I feel like we can- and given the choice we probably should. 

I honestly don't want to make 360 payments to pay back a debt with an additional $330,000 in interest. I want to be free.
David and I had to live really simply and frugally for most of our years in Detroit- we know how to do it. I think the challenge is going from not making a budget to having to follow a budget really closely.

So here's the plan:
39 payments (the first three will be Oct, Nov, Dec of 2016 and will be smaller because we have to get ready) followed by 36 payments of a lot of money/ month. (you can do the math). And we'll only end up paying $31,000 in interest- gulp.

Simple dinners:
Sun: church
Mon: pasta
Tues: beans and rice
Wed: quesadillas
Thurs: eggs and potatoes
Fri: pizza from costco
Sat: soup
2 x a month date night.

This will allow us to be debt free by December 2019. I'd like to document this journey for two reasons.
1. It's going to be really hard and I need support.
2. If you're in debt and you want the extra boost or encouragement- I'm here for you!


As I think about this decision I see our heads to the ground- not thinking about the extras, the luxuries, or even the small things that add up- it's a time to focus- heads down, feet moving and boom- get out of debt- move to freedom.

a boy and his horse

I was recently notified that Bentley and our family are invited to TROT's  (Therapeutic Riding of Tucson) annual gala on Saturday night. The news was a bit of a shock since we just moved to Tucson and started the program. Yet when I think about Bentley's progress it totally makes sense. The director also wrote a piece about Bentley in the spring newsletter.

Today as Bentley was preparing to ride his horse, Mr. T., Mary approached me to prep me for the questions she will ask me on stage. As I began to think about how I will answer the questions my eyes immediately filled with tears; and I realized that I want to document this story- Bentley's story- of a boy and his horse. 

When Bentley was 3 years old I found a wonderful preschool for him to attend. Lily had just been born and I was having a rough time- so he began his first full inclusive educational program. At the end of the spring the school took an annual trip to a place called Real Life Farm- located in Canton, MI. I found care for Clayton and Lillian- which was challenging and went on his first field trip. During this field trip Bentley rode a horse, held baby chicks, bunnies, kittens, and ducks. He fed baby goats and sheep. He milked a cow. I realized I had unlocked his heart. His love for animals and desire to be near them was not only obvious, but infectious. 

  

After the field trip I learned from the Down syndrome group that there was a therapy program called Great Strides located in Chelsea, MI that provided hippotherapy services for kids. Hippotherapy is basically doing speech or occupational or physical therapies while on a horse. This gives kids a chance to work on their skills in a new setting. Bentley loved his horse Bobbie at Great Strides. I used to drive him 75 minutes each way just for a 40 min session. It was tiring, but it was worth it. 

   

  

When we decided to move to Tucson I began searching horse therapy facilities so he could continue his love of riding. I found TROT online and drove over to meet the staff in person. I really like to meet people in person- it helps to get a feel for the facility and it helps avoid phone tag, etc.. They were able to find a riding time for Bentley and he began in September. 

It's hard to describe what happens when Bentley gets on his horse. He molds right to the saddle and sits straight up with a huge smile on his face. He listens carefully to the instructions given to him by his teacher and he just glows. For Bentley to be up safely on a horse it requires 1 instructor, 1 horse leader, and 2 side walkers to help with leg holding to make sure he doesn't fall off. The horse leader and side walkers are part of a large community of volunteers that make riding possible for Bentley and many others. 

This semester Bentley has learned two new skills- he has learned to guide Mr. T on his own through the cones. Yes, he has started riding independently. And he has started learning how to post- which is the up down motion a rider does in conjunction with the horse's trot stride. He sits up tall and he totally feels the rhythm of the horse. The first time I watched him do it my heart leapt with joy and my eyes poured out tears. 

What many people don't realize is that Bentley lives in a world of "can'ts" and "won'ts." 

He can't be left alone.

He can't ride a bike on his own.

He can't be on that team.

He can't fit in this group or that group.

He won't live on his own.

He won't drive a car. 

He won't be able to do that work.

He won't have a job- and if he does it'll be restaurant clean up or some other behind the scenes stereotypical job. 

I could probably go on for a long time. I could also say that the world of special needs advocates 

have reminded me of the important question, "Well why can't he?" I have learned to think creatively and out of the box. I have learned that getting Bentley what he wants takes work, but it pays off really well. I have also learned that there are organizations and people out in the world who don't see the can'ts, but they see the hows. How can we do this for a child or an adult with a disability? What will it take?

When Bentley was born I was flooded with information about concerns and can'ts and won'ts. I read books filled with statistics and challenges and what to watch out for and what to fight for. I remember during my postpartum season crying a. lot. I cannot describe the feeling of being simultaneously thankful and terrified of the future of my child. There was a time when I sat in the can'ts and won'ts. 

And then I slowly began to rewrite his future. And I wrote it my way- full of cans and wills. 

TROT is an organization that stands on cans and wills. Kids and adults in wheelchairs, with autism, or Down syndrome, or Cerebral Palsy, or Spina Bifida, and war veterans get up on horses and experience the therapeutic healing and joy that comes with riding. When Bentley arrives at the property he is loved and he is appreciated and he is told he can and will ride a horse. 

When we teach kids that they can do things it changes their expectations for themselves. Spring Hill camp was an excellent testimony and example to our family of what happens when we say, "YES!" At this Michigan camp, kids, regardless of their diagnosis and abilities- as long as something is medically possible- get to do whatever they want. From zip lining to wall climbing to swimming to horse back riding. In fact, Bentley was having a hard time doing the climbing wall once and his brother was moving with ease so one of the counselors put Bentley on his back and climbed the wall. What did this teach Bentley? It taught Bentley that he could climb a wall. Sure, he needed some assistance, but the lesson was in the opportunity; not in how it was executed. So one of the things TROT has continued to ingrain in Bentley's mind is another thing that he CAN do. The benefit of that belief transcends over time and over every aspect of his life. And the benefit of believing in himself- of trying new things- of succeeding in every day activities- paves the way for a bright and beautiful future. 

I have a lot of hopes and dreams for Bentley. I think it's important to dream big for him because it helps keep us all on course. I dream that one day he will live and work on some type of horse and/or animal farm. As he ages he may decide that he wants to do something else- which will be fine with me- but for now I want to take his passions and dream of how he can succeed in the future. I want to fill his life with cans and wills and not the can'ts and won'ts. I can't think of anyone who wants to live in the can'ts and won'ts- so why should he? I want to create spaces for successes and opportunities. 

I want him to be in a community that believes in him. I also want him to challenge the thinking of those who sit in the can'ts and won'ts. I want him to be a world view changer. 

Having a child with an intellectual disability is the most beautiful thing to have as I reflect on the world. To have a child that requires me to create, to dream, to hope, and to learn flexibility is to have the key to unlocking change in my own thinking. It has unlocked my narrow minded thinking from what once seemed so important- the American dream- the independent life- the traveling wanderer- to now thinking of others and considering ways for people of all abilities to live in community.

So now with my mind in the right thinking I can begin the journey of creatively thinking of ways that Bentley can drive- maybe a golf cart on the farm!

Ride a bike- covered now with the tandem!

Be on a team- call local sports groups to see who is inclusive- thanks Tucson Soccer Academy! 

Live on his own- with a roommate! 

Have a job- managing the farm! 

It seems like the world of cans is the kind of book Dr. Seuss would've written. It seems like living in the innocent imagination of a child- the kind that thinks up all kinds of creative ideas- and whether it's possible or not- you wouldn't dare crush that place. Let's hold on to that... yes, let's hold on to the innocent imagination of a child as we dream up the hopes and opportunities for a little boy in blue glasses who rides horses and expects the unexpected.

on grand adventures

Our dear friend Nate came into town this weekend. Generally we keep the kids involved when visitors arrive, but this time we decided to do an adult trip. I am so glad we did! With the kids being carefully taken care of by David’s family we are now almost through with our 5 hour drive up the canyon.We left Tucson at 6:50 this morning and the drive has been uneventful thus far. The Arizona landscape is stunningly beautiful. We started in the high desert and moved through the low desert of Phoenix through the arid and now we are climbing up in elevation. The horizon is vast and the sky is blue. I look forward to some time of exploring northern Arizona again. 

We arrived at the canyon around noon and couldn’t find any visitor parking so we proceeded to our campground, parked the van, grabbed what we needed to hike and took two shuttle buses to get to the South Kaibab Trailhead. 

The first look at over the canyon was breathtaking… as it always is. 

It’s so grand, so vast, so deep I really find it overwhelming. 

We started down the trail and there were lots of people walking… the beginning of the trail switchbacks down and then brings you out into the canyon a bit. 

At the first look many people stop and eat and take pictures- I assume that is the end of hiking for many and they trek back up. As we hiked down to the next big overlook where there is a bathroom we said left behind a slew of other hikers and continued down Skeleton Point. 

During this leg of the hike we passed very few people… a few came up after a 4 day trek and another group looked like they had hiked to the bottom earlier in the morning and were headed back up. We met a couple groups who were going to the point we were. The view was incredible at Skeleton Point. We saw our first and only look of the rushing Colorado River. 

We dreamed of returning back soon so we can have time to make it to the bottom and back. After we took in all the views we could we started our trek back up. It’s definitely an interesting experiencing to hike down and then hike up. They recommend expecting your hike back to take twice as long as your hike in. Without trouble we were able to hike out.  

Once we got to the top we took a bus to Yaki Point to watch the sunset. The sunset was beautiful and then we headed back to the camp to set up the tent, start a fire, and make some dinner. During the night it dropped down to 27 degrees- so cold! 

We woke up at 5:15 AM to drive out to Mather Point to watch the sunrise. It’s beautiful to watch the darkness fade and the bright sun rose from behind the canyon. It slowly illuminated the canyon and brought alive the faded reds and browns into brilliant colors. We took the rim trail to Yavapai Point.

As I reflect on our time at the Grand Canyon a couple things come to mind. First, I feel deep sorrow for what happened to the tribes and people who originally lived here. Sometimes the United States’ attempt at honoring first nation people is offensive at best. The Grand Canyon and the land near it is quite beautiful… so to know that the people who lived here and appreciated it’s beauty are now few and unable to live as they did before makes me sad. I experienced this same emotion as we drove through the United States summer. We started to read I Buried My Heart at Wounded Knee which is a book about the battles and betrayals of the United States government and the first nation people. There is two sides to every story and this book certainly challenges the traditional educational approach to knowing the history of that time period… 1850-1890’s. 

In addition to thinking about the history and uses and love of the canyon, I reflected on its overwhelming presence. I struggle to even find the words to describe it’s presence. Even as I ask David and Nate for statistics on how much you can see- or how to describe it- I am reminded that there is a reason that a book or an article or even a photo cannot allow you to fully appreciate- or really even come close- to what it’s like when you get that first look. The height of the rocks, the colors, the shadows, the peaks, the valleys, the changes… it’s all too great. I love to discover and I love to know- and I want to see the world- see all there is… yet the Grand Canyon is a reminder of my ability to see a great many things while realizing the great many things I’ll never see. There are so many mysteries in the natural world- and I while I love knowledge and experiences I also love mysteries. I think there is something sacred about a world in which not everything can be known. It is a reminder of my size- my place- in this world. 

After the sunrise we headed back to the campground to pack up our site. We then got in the car and took the 2 hour drive to Sedona. We stopped at Sugarloaf trail and took the quick 2 mile round trip hike to the summit and back. 

It was a great way to see the beauty of Sedona on our way back to Tucson. We had lunch at a quaint delicious sandwich shop and we are now headed back to Tucson.

Friendships take time and they take energy. It takes a lot of time to really get to know someone in an intimate way. To know the struggles, the hopes, the passions... that stuff doesn't come out in casual ways. We spent a lot time and energy building friendships in Michigan. It was a time when the kids were young and we had both time and energy to build community and friendships. I am so thankful for those times. The special thing about having visitors this year is that they are a reminder of the love and commitment we had to our friends in Michigan. It was really hard to move away because we truly had started growing roots in our communities. And when you leave a place you never know if your friends will be able to make it out for a visit. Recently Lily told me she was sad listening to a song that reminded her of Detroit. She told me she really missed Detroit. I told her I really miss Detroit too and that I have a divided heart- meaning some of my heart is in Tucson and some of it is in Detroit. She looked at me and said, "Mama, all my heart is in Detroit." Sweet girl. I know moving is really hard, but I also know she's getting settled. Having our friends visit is a reminder to our children that the connections we had will endure. We will take them back to Michigan to be reunited and visitors will continue to come. 

I am so thankful for family nearby to help us with the kids so we could get away. Being a parent is exhausting- constantly thinking of others and meeting their desires first. It's as it should be... however, those weekends when you get to drive 5 hours straight- without the questions, the complaints the needs... to look out over a canyon and hike in without worrying about their safety- and to just be an adult... it's a blessing- one I appreciate very much.

So this was a very special, much needed weekend to revive my soul.

We are so thankful for the gift of friendship, the gift of nature, and the gift of life. 

a case for empathy

I have been thinking a lot about consumerism as we approach another sacred holiday that has been bombarded with consumer markets selling things to help us celebrate. I have a really difficult time understanding the relationship between baskets and chocolate and bunnies and eggs and Jesus. If you celebrate all these things this weekend, please don't feel judged by me. I am not posting this to point towards any specific person or family- but I am just asking the questions.

I read a blog today about the importance of teaching kids the concept of earning things and not having things handed over. Things come at a cost, and we have entitled children. I appreciated the blogger's thoughts and I considered them for awhile...  I recently bought a book about teaching kids about money called The Opposite of Spoiled- I haven't finished so I won't write a review... but I'll just add that I have spent some time thinking about this.  Another note I'll add before I move on is that my children are 7,6, and 4- so I don't have this parenting thing figured out- I can help with some baby and toddler advice, but I certainly don't have the years of experience to reflect on how my parenting effected our children.

The other piece of important information before I go on is the idea of empathy. Recently we moved Clayton to a school called The Idea School. It's based on a philosophy of education that kids are intrinsic learners and the teacher only need guide the child. You can read more about it here . We have placed Clayton in this school because he needed a place that approached education gently, where the class sizes are small, and where he learns to love to learn. In addition, the school is an Ashoka school. This basically means that they are growing kids in their understanding of having empathy for one another. One example is that instead of teaching a child not to hit their friend because they'll have a consequence for their action, but to teach them not to hit their friend because their friend doesn't like it- because they love their friend and don't want to do things that a friend doesn't like. I've always carried "the gift of mercy" as they say- meaning I sense and empathize the burdens of those around me... However, we as a family have really grown in this area since the birth of Bentley. Teaching our children to have empathy for one another is a means of survival when dealing with a child with an intellectual disability. Yet the lesson that I've learned is that empathy is essential for all kids to learn how to care for one another- to understand where they're coming from...

So today as I was reflecting on an entitled generation- on the cheap cost of toys and things... I am reminded that it might not be the cost of things that will lead us not to purchase... I don't know if we as a culture have more money than a couple decades ago when my family was purchasing me gifts, but I am pretty sure that our outsourcing products to other countries lowered the cost allowing us to buy more. I don't know how and why people make the purchases they do... I don't read consumer reports. But I do know that we live in a global economy and everything is connected now. I also know that the workers' conditions in developing countries where our things are being made or dismal at best. I recognize the argument for their "job security" and "life opportunities" because of these products- but I also know that's not always the case- like when the huge factory collapsed in Bangladesh killing 1000 workers.

Here's what I do know... I know that teaching kids to care for someone else is possible. I know that teaching my kids to say hi to kids in wheelchairs and teach them how to play with kids in chairs, to play with kids with Down syndrome, and to befriend those with autism are steps towards empathy. I also know when we look at the pictures from our time in Burundi Clayton asks a lot of questions- and we try our best to describe what it was like to be in a place that didn't even have the litter of chip bags and bottles and toys because the people were far too poor to ever imagine such things. I know that if I showed the kids pictures of other children and adults working in factories for poor wages to make things for us they would be saddened by that.

I am not sure that our problems are in teaching kids that they must earn the things they want or that they must work hard in life or that they need to be thankful and not entitled... I think what our kids need is more opportunity to have empathy for their fellow brothers and sisters around the world. This week I was reminded in Colossians 3 this verse:

5 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.

What I am trying to say is that I don't think it's enough to teach kids to resist purchasing because of the cost in dollars, I think we have to teach kids the resist purchases because of the cost of life. 

We are one body. The children in Bangladesh and India and China and Haiti and Burundi are in the same Christian body as my children and we are called to peace. And we are called to gratitude. 

So whether you are a Christian and are remembering the sacred Good Friday and Easter Sunday or you follow or don't follow another religion I think this is a message we can all share. People matter. The important thing for me is that my children learn to not only want things, but that they don't want things if it is hurtful to another person... and so I'll continue to the conversation of empathy with them. 


And to my brothers and sister in Christ... may we reflect on the cost of the cross, our countless sins, and the beauty of salvation-- may we teach our children and those around us to truly love our brothers and sister and not just those who live in the boundaries of this country. 
May we love well.

(Note: The first part of Colossians 3 is full of passages that express my thoughts here.)

what am i mourning?

Recently my friend asked me how I was doing- I must have looked a little ragged. This mom of 3 little kids is never ragged, but always tired- or something like that. I began to tell her about the conference I have been attending. For the last 3 months I have driven to Phoenix for a weekend to learn about different facets of disability advocacy. The conference has been better than I expected. The people who they have come in to do the trainings are from around the country and on the front lines of progressive advocacy for and with people living with a disability. Apart from the long hours of inhaling information I am surrounded by 23 other people who love and fight for someone with a disability. We have shared some really intimate stories and poured our hearts out to one another in attempt to not only gain information, but to encourage one another to keep on fighting for our loved ones. I shared with my friend that it is exhausting for me to hear all those stories and learn so much information and then return to the normal life- so she was right to note my raggedness. I also shared with her some of the daily struggles I have in raising a child with an intellectual disability. She told me about a training she is doing on mourning. She is learning to mourn some specific things in her life- putting words and feelings to things that are out of her control so that she can grieve those things. She asked me if I have mourned over having a child with a disability. I really couldn't answer her question right away. I stared off into the distance at all the kids running up and down the play structure- laughing and screaming.

She proceeded, "You don't have to tell me, it's ok." 

I said, "I really don't know how to answer that question because he's alive and he's a joy. I don't know that I mourn his life." 

From there the kids needed me and our conversation was over- well between us it was... I have now spent the last 4 days constantly reflecting. 

I started with the question, "What am I mourning" Do I mourn the absence of perfection or do I mourn that I ever expected it?"

Like the majority of first time expectant moms I expected my baby would be without a genetic abnormality. I expected to carry my child for 9 months, give birth, and have a beautiful Crawford baby. I do remember a written prayer in a journal that I prayed for several months which pleaded that God would prepare me for the child born. Now I know that God was preparing my heart for Bentley- teaching me to pray for the unexpected, but like the abnormal ultra sound at 20 weeks I didn't actually believe I'd be faced with a child with a disability. 

As I reflect on my pregnancy with Bentley and on his life I do wonder if what I mourn is that I expected him to be the typical child and not whatever God gave me. Is it wrong to want a child that doesn't have a disability? Is having a child that requires more time or medicine or more of anything the unwanted child? What should the expectant mother long for? 

One of the greatest challenges I face raising a child with Down syndrome isn't my child, but the culture around me.  After Bentley was born many people would say things like, "I'm so sorry." I always questioned this... why are you sorry? I have a beautiful baby boy with a life ahead of him. Be sorry for loss of life, but not this life. The idea that I would bring a child into the world and you would offer an apology for his life is so painful. This experience paved the way for our culture's lack of acceptance and appreciation for those with disabilities.

The next challenge was finding a preschool for Bentley. I called all the preschools in Detroit and Grosse Pointe that I was interested in and they all said I needed to send him to the local classroom for kids with developmental disabilities. I refused this offer. I finally found a Reggio Emilia inspired preschool that not only accepted Bentley without him needing an aid or additional help, but loved and accepted him as a child with something to offer the world. 

Again I was faced with the same challenge entering the elementary years until I found the Boggs School. 

And again when we moved to Tucson I started the whole search over again. I called a local private school that has a wonderful curriculum and opportunities for kids and the receptionist on the phone said, "Well, we've never had anything like THAT before...." 

As a country we are failing our people. I'll never understand the reason to segregate people. My son was born into a family with a mom and a dad and a brother and a sister and he is part of our family. He does all the things we do- so why when it was time to start school is all the sudden expected to be segregated? How is that good for him or other kids? Studies show that the early elementary years need not be academic- it's all about social development. So if the early elementary years are based on social development why can't all kids be together? We know that segregating kids at young ages only leads to more segregation as years go on. How many friends do you have with a disability? I think a huge part of this gap is because we are segregated through our education- not because of our differences. I have made new friends along the way since Bentley's birth and I fully appreciate their contribution to my life.  Jean Vernier and Henri Nouwen have written some life changing books on their experiences in communities of people who live with and without disabilities. If you're wondering where to start, I'd start there. We must change our thinking before we change our hearts.... or maybe our hearts change our thinking. 

So when I think of mourning it's not my son that I mourn. I do not mourn the absence of his intellect. I do not mourn that he may live with us forever or that he may need more assistance in life. I mourn the labels- our culture's decision about the value of life.  I mourn that I have to fight to find him a school where he is with his peers. I mourn that people apologized to us when he was born. I mourn that our country has moved jobs oversees and into computers to save money and therefore his job opportunities are effected- along with millions of other people. I mourn the medical world who diagnose children on a daily base with grim expectations. I mourn the rejecting world in which I am trying to raise Bentley- but I do not mourn Bentley.

The struggle, the pain, the exhaustion lies in trying to help others see him as having a valuable life. Bentley's life is just as precious and hopeful and joyful as the life of his younger brother and sister. So the next time you see a person in a wheelchair, or with some tubes, or who has the facial appearances of Down syndrome or another chromosomal abnormality or who is behaving differently because they have autism- don't look over in sorrow, but look and smile- because you're looking into the eyes of a person who has value- a person who loves, laughs, and feels- and whether or not you can see those things in that moment doesn't determine their existence- and that life- whether it's like yours or different- is special and it has equal worth. So smile.

To answer your question, my dear friend, yes, I do need to mourn and I am learning how to mourn- but first I had to determine what I was mourning... and without your questions and pursuit of my heart I wouldn't have realized so clearly that it isn't my son and the absence of "perfection" that's a loss- however, it's a society that has put value on some lives and leaves others to suffer in isolation, a society that apologizes when it should celebrate, and instead of looking away, should smile. 

“And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”

Kiersten White, The Chaos of Stars

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