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.

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

- 

what do you see?

It's 9:30 in Tucson and I have the dog on my lap and millions of thoughts running through my head- David is cleaning the kitchen and we are bouncing back and forth various events from our days. Me- the stay at home mom that catches moments around the city, making new mom friends, watching the hilarious and sometimes trying moments of our children. Him- the doctor who sees patient after patient with the most complex, interesting, heart wrenching stories I've ever heard. Music plays. Lily continually gets out of bed trying to be with us... it's life. it's normal.

Every once in a while a moment happens- a story is shared and laughs abound, or the instantaneous tears roll down my face- or we just pause and take in all that is happening.

Tonight a moment happened. A moment I'd like to record.

Bentley was recently accepted in the Department of Developmental Disabilities (DDD) and also into the program ALTCS (Apply for Long Term Care). These programs offer additional medical services, home services, and funding for camps and various other things for those with a disability. Down syndrome is not a sufficient diagnosis for these programs. So I had to fill out a ton of paperwork, go to several interviews, and allow people to come into our home and observe Bentley to see if he qualifies for these services. As it turns out: he does qualify.

David's father is a family doctor and familiar with the medical aspects of those with a disability. He was here tonight when I told him Bentley was accepted. I said to David, "Your dad seemed surprised that Bentley was eligible for ALTCS."

David said, "That's because those who know and love Bentley don't see his disability. They don't see his struggles as a disability."

"Right," I said, "They just see Bentley. That's because when you know and love someone with a disability you don't see the disability as clearly."

His response, " That's the prejudice we all have in the word disability. We think of disabled as a negatively inherent thing. So when we are confronted with a person we know and love with a 'disability'- except we perceive it as a strength we have a hard time labeling them as disabled. We immediately think: disabled is = less than. so when we see something positive- or see something as 'more than' we have a hard time using the word disabled."

This conversation is so important. It's so important for me to process as a mother and so important for me to articulate to those I love.

I often say, "You know- I didn't ask  for Bentley- I didn't choose him. But he's my son now- and so out of that I find it my calling- my opportunity- to be part of something huge- something I would have NEVER chosen on my own terms." But there he sits. And I'm in love.

This moment David and I shared is so huge- because there's this awkward balance of wanting people to love and adore Bentley because he is Bentley- and wanting them to fully appreciate what it must mean for us to be his parents. There are public moments when being his mom is very vulnerable- when he's crying on a public floor- or throwing things- or not able to communicate what he wants- or getting his dirty face print on your expensive clothes- or any number of things when I think to myself- please don't look at us right now- this is NOT who he is. He is AMAZING. Look away, please. And then there's the moments when he's everything that we adore- the gentle, giving, humble, funny, soft, sweet child that wins hearts. And I think- yes- THIS. This is a child with Down syndrome. See isn't it wonderful?

At 33 years old I feel like my life is just beginning- I'm just realizing the long term things I am passionate about. My desire to know and love others with disabilities is just beginning, but I know it won't fade- not now. Meeting the kids at Children's Clinics and connecting with the families feels so natural- feels so right.

One of the things I think about a lot is the fact that I didn't know anyone with a disability as a child. In HS kids with disabilities were separate. I didn't have any exposure to the community of special needs... but as I grow and learn this must change and here's why.... I firmly believe that Bentley has something to offer his peers and they have something to offer him- and I believe this is true for the trajectory of his life. Unfortunately our country separates people. We are separated by wealth, by race, by abilities, by all sorts of things... But inclusion as a model draws us in to celebrate our differences and unify our similarities. Inclusion is so important because it changes what you see. Living in Detroit changed us. It changed how we view opportunities, families, skin color, poverty, wealth, and the list goes on... Having Bentley has changed us... oh. it. has. changed. us.

It has been said, "Politics are what you see when you look out your window." When the view out your window is the injustices of those who have a disability- the segregation- the ostracization of the weakest- that changes how we see the world- and the things we value. When the view out your window is the injustice of race in this country- it changes your politics. But you have to see these things... and inclusion is an avenue for that view.

So as I think about Bentley- and I think about our family- I think about what we see. We see a child. A child with blue glasses and blonde hair. He's 7 years old. He loves loves loves horses. He'll give you whatever you want if you cry hard enough for it. He loves to help cook. He loves to build houses which means tearing apart mine to do it. He cares for people. He loves food. But he also has a disability- something that will effect his opportunities in education and in life. But that doesn't equal less. In fact, it might equal more. Cause he's not fighting you for the so called "American Dream." He's just trying to make a friend and eat some food. :) But he is also one of many. Many many others who get stared at and ignored and forgotten.

I don't know how to tell you to get to know someone with a disability. I think the fact that our churches and schools aren't giving others ample opportunities is a sign that there's a great challenge there... so you can start by making sure the places you are part of are welcoming others in to that space regardless of challenges... and then out of that you'll certainly get to know people.
And people change you.

So go, be changed.





Lily set up a medical clinic with a receptionist, ultra sound tech, people waiting in line, etc... so David took a pic cause it's so cute...




Bentley would have nothing of it... he need some horses in there. And all the attention. :) Not only the attention- but he took the picture just to be sure.

on your seventh birthday, my dear son...

I spent months preparing to have the perfect all natural all peaceful all perfect day of your birth! But what I have spent years training myself to do- prepare and plan and perfect- all proved itself in perfect meaningless on that special day! I did experience the labor and birth that I had planned for- it's just everything that came after changed me. But son, the thing I've learned is that is true with the other two as well! In fact, I spent a year planning a big party when your dad and I decided to get married- and the wedding was all I planned for- but then life happens.... and it unfolds in ways you will never imagine. I can promise you that, son. Ok back to you...

So you were born in the early morning of August 14, 2008- 11 days early. We didn't call anyone to say we were going in to the hospital... After 2 hours of pushing you finally came out! The doctor said, "It's a boy!!" We all smiled! They wrapped you in up and placed you in my arms for a photo- then they said you were too blue- so they wheeled you away. Here's the only photo I have immediately after you were born: 

Two hours later they brought you back. They told me you probably had Down syndrome. "No, I don't have any questions- I just want my son," I said.

It was love at first sight. Oh man- I just scooped you up- and I never wanted to put you down. You rarely cried and always cuddled. 

I did have to put you down- for adequate "tummy time" of course. The therapists wanted you strong! So down you went... 

And then you started growing...

And you were always such a happy kid! Here daddy and I hiked Sleeping Bear Dunes all the way to Lake Michigan. I was pregnant with your brother- 

 

Then you got glasses- and they made your cute little face even cuter! 

And then your sweet brother was born... 

you loved him right from the start

 

then you had to learn to walk... that was a lot of hard work!

you made a friend in Africa! 

 

and you always love to be helpful

and then we brought your sister home! 

you have quite the personality! 

we had the most amazing summer! 

Having you as our son has pushed us to change our perspective on life and people and even God. I am constantly learning new lessons- and I am always working on my patience! You have this way of making people laugh and smile and fall in love with you. I have seen the sad and the broken turn to your joyful face and watched their mouth lines move to experience joy with you. Even at the young age of two you crawled into my lap when I was crying at the loss of a friend and you wiped away my tears... which only made me cry more.

You have also unrolled countless toilet paper rolls, broken some of my favorite things, spilled things daily for the last 7 years, thrown your glasses out of car windows never to be found again, colored on walls, and ran every other direction than the one I wanted you to go. But it's the reflections of these moments that make me ponder what really matters. What is the purpose of life and how do I teach it to you? Why did God give you to us? Are you knit perfectly or are you to be made new in heaven? In essence- we are all imperfect- but we are able to mock perfection a little easier. 

Bentley, your joy is contagious, your smile igniting, your heart pure, and your life a reward. You have taught me many many things.... and I look forward to the many many many more adventures, challenges, and joys that lie ahead...

seatbelt moments

As westerners we have this idea that we can control our lives which then controls our fears. So when something unexplainable happens- something like the birth of a child with a genetic abnormality that has no scientific explanation- it can really rock our reality as we know it. Science can actually prevent even this human experience now; with 90% of women aborting a child with a diagnosis of Down syndrome- and even higher rates when caring a child with Edward syndrome or the numerous other things that can be picked up through pre natal screening and ultra sounds... it just shows our desire to control our lives. Carrying a child that has a less than perfect future is now "incompatible with life". We want to avoid the pain and struggles of having a child with a medical or developmental disability. This is only a magnified example based on my personal experience- we actually control our lives in hundreds of other ways that we are unwilling or unable to acknowledge.

  




When Bentley was born and the diagnosis was delivered I was out of control. I had this beautiful infant that I had just birthed. I immediately felt bonded to his weak body, and yet there was a painful reality that all that was to come was out of my control. His heart condition, his need for glasses, his need for ear tubes, and a tonsillectomy, and his inability to use the toilet until just under 5, his frequent messes, his inability to make decisions based on safety, his overall frustrating nature that I deal with every single day- all of those things are out. of. my. control. And let me tell you- I am constantly trying to gain control.

Much of my life is yielded by my ability to control. I eat healthy foods and exercise so I can stay fit and healthy. I read the news so I can contribute to conversations and know about the world. I do laundry and dishes and clean up so I live in a clean environment. I went to school so I could get a good job. I read to my children so they will get smart. I take them to see things so they can have a nice experiential childhood. I look for good schools for the kids so they will enjoy school and learn. My list could go on and on and on. I love control.

Bentley has thrown my system of control into chaos. He is not predictable and not controllable.



According to Skye Jethani in his book, With,  Christians are constantly seeking control of their lives to avoid their fears. Yet the Bible is quite clear that as Christians we have no reason to fear. Though there is no manual for raising a child with Down syndrome and everything about him causes me to seek the answers of anything around me- there are really no answers. I am left fully relying on God to help through any given moment- yet I often don't.

 Lethani suggests we seek to mitigate fear by taking control in four different ways.

1. We seek to control the world by securing God's blessings via rituals and/or morality. In other words: We can control the world by controlling God. So we become focused on behaviors. So everything on the outside looks good- I have a job, I got to church, I give things to people - and because of things God will help me. He is on my side.



2. We seek control by following life's principles and natural law. Want to avoid catastrophe? Then take control of your own life. With the best doctor or the best medication and the best school and the best job... you can have the life you want. You choose the outcome of your life. Eat good foods- avoid cancer. Get cancer: find the best oncologist in the country and still eat the best foods... control control control...



3. We seek control by placing comforts around ourselves so we don't have to experience pain. So God's value is determined by His usefulness. Religion is a means to an end. It's all about consuming. We have comfortable things and live comfortable lives and God is a comforting God as he gives us what we need. Essentially we put ourselves at the center and ask God to orbit around us. In practice this is us filling our lives with possessions and experiences in an attempt to distract us from the fears and pains of life.



4.  We seek control- God's favor- through faithful service. The false belief is "God is disappointed with me because of my ongoing struggles with some behavior. He expects more from me. And he cannot use me to accomplish his work in the world until I clean up my act."  Or this is also displayed when Christians value missionary work at a higher standard than their "secular" professional friends. We believe this service will be more effective for God's kingdom- but is that true?  We begin to see ourselves entirely based on what we are able to accomplish on God's behalf. Even sin in our life is seen through this lens- how effective can I actually be for God? We cannot put mission above God himself. My value is not determined by what I do. My value was already determined when Christ gave himself up for me.

These forms of control are easy to be masked over long periods of time- especially when they work. The more we control our lives, the less we see the control as an actual problem. It is when our desire to control ocean wave collides into the rocky banks of shore that we begin to see our faulty beliefs.

I was exposed at my inability to control with 1,2, and 3 early on. From a failed adoption when everything was right on paper, to a "failed healthy baby" and going back to a childhood when I couldn't control my parents' decisions- I have been well aware of my inability to control. Yet even though I know I can't control I am still constantly trying to gain more of it! Number 4 was exposed in the past couple years with a traumatic church experience. I was firmly rooted in the fact that what I did gave me purpose. The more I could do the more purpose I had. When everything was stripped away and I was only left with my little family my purpose fell into the depths. It was during that time that I fell into a deep depression followed by a really challenging year. It has taken many many conversations, and books, and sermons, and prayer for me to really come to the point where I believe my purpose is being loved by my Creator. And I don't have to do a thing. This is something that words really cannot express, but it is a life changing belief system.

The problem with control is that even when you can explain it and understand it- you can't stop trying to have it. At least I can't.

The problem with Bentley is that he is teaching me how out of control I am every. single. day.



This morning we got in the van to rush off to church. Clayton gets in his seat- seatbelt on- no problem. Lily is in her seat- I strap her in. Good to go. Enter Bentley. Not in his seat. Finally in his seat. Refuses to put his seat belt on. I certainly could put it on for him- but I see this is a life lesson. I am not going to do things for him that he can do himself. It's my line. I've drawn it in the sand. Yeah- draw lines in the sand for a child with a disability and we will have laughs for days. It doesn't work. This experience- this small example of what goes on all day every day is a constant reminder of my inability to control my son and often my temper. I want to yell, "PUT ON YOUR DAMN SEATBELT. IT'S NOT THAT HARD!" Of course I don't swear at my children out loud. But I know I shouldn't be anger and short of temper either. But it's not today and it's not the seatbelt. It's everyday for the last 6.5 years. And it gets old. And my patience is not getting longer.

So this morning- before the sermon, but after the book- I was reminded that it's not about getting to church. No, Bentley doesn't care about arriving on time. It's about that moment. The moment the seatbelt became an opportunity for me to get out the pent up anger because my son is a constant reminder that A+B doesn't equal C. But it's also the moment that God was a quiet presence in my car reminding me that He loves me. And it's not about getting the kids dressed and in the building and to the Sunday school where they'll learn about Jesus and grow up to be God loving Christians... because life doesn't do that. And it isn't the moment where I use my ability to control my response for the sake of controlling the response. But it's the moment where I felt the presence of God with me and for me. The moment where I felt like I get to to be a frustrated mom of an unexpected child that I so deeply love. The moment where I recognize my out of control circumstances that bring me closer to the heart and need for God.



As I reflect on the things I am trying to control and release them I see so much freedom ahead. Sending the kids to the best school I can get them into doesn't promise their happiness or their success. So I can stop controlling- and ultimately stop from being afraid. Not worrying about if I am late or not because Bentley is taking too long frees me to be patient and kind instead of short tempered and frustrated- I don't have to be afraid of what others think if I am late- or worse- what I think of me if I am late. Reminding David of every stop sign and pot hole and curve in the road does not control if we get in a car accident- it feeds my fear of life- and I don't have control of it. Reading my Bible and and praying and doing everything right doesn't control God's response- it doesn't control if I have all the right answers- and it doesn't control my behavior. It's helpful- it's freeing- but it can't control my outcomes nor how much I am loved.



And so I come back to the center where I am reminded that I am loved. I don't have the answers and I don't have control. I am trying to enter more into faith and out of fear. I don't have answers, only experiences. But I do know that it is a lot better to live in the freedom of knowing that I can let it all go then it was when I thought I could mold my life as I desired. The unplanned life- it's an adventure worth living. Keep that in your back pocket and remind me- cause I'm gonna forget in the morning.

Peace.


This post could only be written because of the inspiration from the book With by Skye Jethani, our pastor Kevin Butcher and his sermon this morning, as well as from the daily life lessons from Bentley John Crawford. (and with much thanks to Loud Harp's new album: Asaph).

the invitation

Dear friends and loved ones,

One of the struggles I have with injustices is that I don't know how to do anything to help change them. Living in Detroit has forced me to see the many injustices in this country that I may not have otherwise seen. While David is able to tangibly try to help his patients as a doctor- listening, advocating, finding places for people to go, and offering medical services, etc...  I often feel useless.
I want to help, but I just don't know how in a lot of ways. This feeling is exacerbated by the fact that I am a mom to 3 little children and I don't have a lot of time beyond what I am trying to do for them- especially the numerous therapies and appointments and focus that Bentley requires. So if you're feeling similar to this- you aren't alone.

A friend of ours who is an infectious disease physician recently wrote this on her Facebook, "I am now seeing my third mentally ill, homeless patient with frostbite getting an amputation this week. It makes me so sad how mentally ill are treated in our society- left out in the cold. I don't know what the solution is, but this is really just not right". Her bringing light to this issue is the beginning of caring about it enough to advocate for it. I read this and it reminded me that this is happening a lot. And like her, I don't know how to change it- other than donating to the local shelters and offering warm clothes... but if someone told me something else I could do- I'd consider that as well! 

I want to invite you into the struggles that we face with Bentley. I know you're busy- so remember- this is an invitation- not a demand or an expectation. :)

In order to invite you into the world of having Bentley I must give you some tools to help you along the way. :)

First, get educated on Down syndrome. This website is a good start. Don't read anything that hasn't been published in the last 5 years- research is only getting better!

Second, get educated on inclusion. Find out what I am talking about when I say inclusion. You can watch these short videos. Also, this website is a great way to learn about inclusion: two. They offer conferences and seminars, etc...

Third, learn some things about advocating here: one.

Fourth, participate in your local Buddy Walk! We love the Buddy Walk in Ann Arbor- they raise enough money to offer extra special services like Bentley's horse therapy! We also went to the one in West Linn, Oregon and had a WONDERFUL time!!! So go- wear a shirt- and makes some friends!
Heck, I'll make you a Bentley button if you go!

Fifth, let's have a conversation! I recently read this quote in a book and it was so helpful because I know that people have a hard time talking to me about Bentley because they're afraid they're gonna say something wrong. Let me just say this- if you are for Bentley and you use a word I don't like- I'll tell you. So don't worry about screwing up- I am just thankful you're engaging!

Finally and probably the greatest thing you can do to PARTICIPATE. Ask the school you're looking at for your children where they have children with special needs. Are they in the classroom all day? some of the day ? not accepted? If you as a parent who doesn't have a child with a disability engages a school in this area- imagine what we can accomplish together! There are way more of you than me! Consider the school that doesn't accept children with disabilities. I am not saying I am gonna judge you for choosing this school- we all get to make our choices. I am just asking you to consider it. I think diversity in education is essential. I want my kids to be part of a multi ethnic, economically diverse school that includes kids with disabilities in the classroom. And I don't think all of this would've been a priority before I moved to Detroit or before I had Bentley- so I am just inviting you in on the journey. You could also write out a pro and con list for schools you're considering and keep inclusion on the PRO list and special education as separate on the CON.

I'll close with this sweet edited email from a friend and her family's experience in inclusion from a different perspective: 

Oh I love the words in that book and how she described it, because I often feel that way too (as in, I don't want to say the wrong thing, or how should I phrase this, etc). I just want you to know that I know that we don't get to see each other a lot, but you need to know that you are lifted up in prayer, and that you and Bentley have forever changed our hearts in our home. At parent-teacher conferences, after we got to hear how brilliant and wonderful our daughter is (not saying that to brag, just repeating what the teacher said), the teacher asked us if we had any questions or concerns, and my husband said..."We are just so thankful that students like Chase and Joe (who have cognitive and physical disabilities) are in class with A. They have taught her so much this year." And Adrienne, this is so so so true. We started the year worrying about..."how in the world is this little brain going to be stretched academically, as she really is just extremely ahead of her peers," to now, dinner conversations revolve around "what signs did you learn so that you could speak with Chase today? How did you help Joe when he was having a hard time? Did you and Chase play on the slide together or the swing?" Book learning is so easy to teach. Friendship, compassion, faithfulness, bravery, standing up for the kid who's different...not so easy to teach, and because of her daily interaction with these little boys, she is getting the opportunity to learn these daily. Lastly, I was talking to somebody in the beginning of the year about A's friendship with Chase, as honestly, friendship with a handicapped boy is new for me! This person looked at me and goes "aren't you afraid that by being friends with him she won't have any friends and she'll be labeled the weird kid?" I just looked at said person and replied: "Our prayer is that A will always stand out as different (think Phillipians 4 where Paul talks about shining like stars in the universe)." To this day I am still stunned that somebody would think this way, let alone ask this question. But then I stop and think..."Wow, before Adrienne and Bentley, would that have been me? Would I have thought that way?" I do not know, but it could have been, and thankfully now, it most certainly is not. So thank you Adrienne and thank you Bentley. You have both made me more Christlike.

So thankful for this lovely perspective from such a great friend! She is learning the value of education goes far beyond academics!

Share your stories with me, I love them!


Much love,

A