more alike than different...

Earlier this year my friend started inviting the kids and I to stay after school and play- Friday Fun- she calls it. So we stayed. The kids play, the parents talk- it's just like the days in Detroit, I thought.

The first Friday we stayed I looked up and saw Bentley taunting a child much his junior- my heart dropped- will we ever be able to do this? Will these parents accept me and my crazy kids? After calming the little guy and scolding my big kid I looked back and there weren't any glaring eyes- just moms willing to work out.

After that day- Bentley would sit at the table with the moms- proclaiming which are his girlfriends and making jokes the whole time. I continually worried that he would drive them crazy- but they lovingly obliged him.

This routine repeated itself- but secretly I felt sad inside. Why is my son continually choosing the adults? I have done so much reading on inclusion and the kids are willing to play with Bentley- but he pushes back. The discouragement consumed me at times. Sometimes I wanted to stay home and hide- those inclusion experts were all wrong- it won't work.

When I had help around I gave Bentley the choice and he started to choose to stay home- so I'd take the other two and Bentley would be home with the care provider. Even worse. Not that the providers don't lovingly engage him- but it's the perpetual adult/child relationship and it's him staying home and not in the community. I should add that this dilemma never presented itself until recently- as a young one he never wanted to stay home- but I know from other friends that sometimes as our kids age they choose isolation- and I want him to know and experience love in community.

Then this week happened...

On Monday we had Clayton's parent/teacher conference- afterwords David went back to work and I took the kids to the playground at the school to play before dinner. It had rained all day Sunday and the sky was still hazy - the air significantly cooler than the weeks prior- the kids ran ahead of me and I heard them screaming with glee! I said, "Who's there?" "MOM- it's our friends!!"

The kids decided to play a game - the rules of which I'll never know- because- kid rules.

Sweet, strong, sassy first grade girl got right in Bentley's face and said, "OK Bentley you're gonna count and we are gonna run and hide. You have to count to 20. Bentley, look at me! Ok. You know how to count right? Ok, yah you do. Close your eyes! Go!" and off the kids ran and Bentley started to count. And from there time stood still. I watched in glory as Bentley engaged with the kids- played with them- listened- agreed- bargained- just like he does at home with his siblings. This little girl presumed competence and Bentley knew he was an equal and he showed up. For the next hour or so the kids ran around the bushes and trees playing their games.

The next day the kids had a half day and gathered for a noon picnic with friends- Bentley ate his lunch and then off he went to play with the kids. I caught him swinging on the swings with a different little girl- I continued to watch the two of them find ways to play and I whispered to myself, "She has the gift."

When I say, "the gift". I am not even quite sure what I mean- there's no specific quality or traits. The basic overview is that a child interacts with Bentley in a way that honors him- he's not belittled- he's not less- but he is the equal in the relationship. There is laughter in the goofy jokes, reminders of what it is socially acceptable, and a willingness to forgive when things go awry.

This post isn't to suggest that things will be perfect or that Bentley will always play with kids on the playground and not find girlfriends among the moms. This post is to share my hope. At Bentley's most recent IEP meeting I expressed my sadness that Bentley continually chooses adults as playmates after school- and this week has offered me a new hope. We moved to this district because of the inclusive practices- but also because it's small and there aren't so many choices for education. The kids will stay here until 5th grade and then go next door to the middle school and then 3 miles west to the high school. I wanted to build a community that would know Bentley as the sweet funny mischievous elementary kid that he is so that when they get older he'll be seen as part of the gang- not because anyone feels sorry for him- or because there's a prize for being his friend- but because they can't really remember a time without him.

Inclusion is not easy- and building friendships aren't easy- they take time and space to flourish. This week has been hopeful in seeing the possibilities. In the Bible there are references to an ebenezer stone. This stone is a reminder of God's help- God's presence during difficulty. My dedication to seeing  people united- all the abilities and gifts and colors and cultures united on a playground in Tucson while it never will be perfect - will have glimmers of hope and I want to honor those moments- and so I am placing my ebenezer stone here today as a marker of the things that are happening and the hope that is to come.

If you're a mom  of a child that has difficulty making friends- I see you. It's so painful to watch children gleefully play while yours is off alone and sad or doesn't even want to go to the event. I don't have a "how to make friends list" - we know those things don't work- but an offering of empathy- a moment to hold your sadness- that I have.

If you're a mom with kids- make sure to talk a lot about kids with disabilities (specifically kids they see regularly- but all kids as well) and give them opportunities to ask questions and read lots of books.

Ask questions like: Are kids in wheelchairs less than you? Do you think they don't like to play dolls or cars? Do you think they want friends or a friend like you? What do you think Bentley likes to do? Do you think he wants friends? What do you think you could do if he wants to swing and you don't? What if you want to do something and he doesn't?

I could probably write a whole blog on questions. When asking questions we must be reminded the point is not that we are getting it right- the point is that we are engaging in conversation and allowing kids to think about their peers in a loving way- a way that seems them as friends- It's not even about making kids do things they don't want to do- it's just about opening up communication so that we can help our little loves navigate the world around them.

Friendship and connection is an essential part of our existence. Let's continue to make those connections and love people well- let's continue to push the bar higher so that at the end of a play date they say- Mom, we are more alike than different.... because we are.


Here's some book suggestions- give it a go and let me know what you find!


http://www.booksforlittles.com/misfits/

http://www.booksforlittles.com/disability-normalization/

http://www.booksforlittles.com/disability-empowerment/

concrete floors at target

Yesterday my friends informed me that Target gives anyone who gets a flu shot in the store a $5.00 gift card. Obviously every kid (and adult here) hates getting shots... so I thought a $5 incentive would be the perfect way to make it happen. When I picked the kids up at the bus stop Clayton reminded me he needed a new soccer ball and I promptly suggested flu shots for gift cards and a new ball! He agreed. Bentley said, "Not me!" I know my son and I thought to myself, "He'll see Clayton and Lily pick out toys and he'll want one too... it'll be fine." Little did I know....

We arrived to Target around 4:00 PM knowing that we had to leave by 4:50 to get Clayton to soccer and Bentley to gymnastics...

I answered a million questions while the kind pharmacist hurried to get things moving along. At this particular CVS in Target it creates an L shape - so the window where he was filling out forms is on the long part of the "L" and Bentley was sitting on the floor like the bottom part- every once in awhile I'd see his head peek around the corner to check on us, but quickly vanished.

After I signed all the sheets the pharmacist had the kids pick out band aids- don't worry I've got elasti girl proudly displayed on my arm! Clayton sat in the chair first. No problem. Then I got Lily in my lap- I took the shot and then he gave one to her. Next up.... Mr. Corner Man. He wouldn't move. I tried for 7 minutes to get him back by the window- I tried to pick him up and he kicked me and kept screaming. Here's the thing about Bentley- if he doesn't want to do something- there's no way in hell you're gonna make him do it. And here's the other thing about Bentley- he is as loyal as they come. If he tells me he will do something- he will do it. I tread on light waters to hold our relationship with respect and trust- I cannot betray him because I need him to trust me (and I kinda want to be a mom that her kids believe...). My phone was left in the car (probably still rocking Clayton's Beatles' songs)- so the pharmacist got his personal cell phone so Bentley could watch, but as soon as he handed me the phone Bentley bolted. Last week I lost Bentley in Target and they called on every employee to abandon their job (except cashiers) and look for the little kid with blue glasses. It took 10 minutes and every employee looking in every aisle until he was found- so when he took off today- I went with him- phone in hand and all. I finally caught up to him- at this point Lily is with the pharmacist and I have the boys. Clayton tried every trick to get Bentley to choose a toy. Nope. Then Clayton looked at me with tears in his eyes, "Mom, he's gonna make me late for soccer and I have missed three days because of the rain!" On that note we convinced Bentley to go back to the pharmacist- I gave him the phone and said, "Not gonna happen. I'll talk to him." So off we went.

I was feeling super frustrated because I know Bentley can do this- he is such a trooper and we have worked with him to do shots and blood draws independently with no tears. So I decided to try again- back to Target we went.

It was 6:15 when we arrived and the pharmacy closes at 7:00. We looked at every. single. toy. and Lily and I tried over and over to convince him he could do it. Nope. "No toy. No shot. No thanks." Repeat. "No movie. No shot." I reminded him that he is so brave and that he can do it. Finally at 6:45 I convinced him to walk towards the pharmacy. We stopped about 50 feet from the counter and sat on the floor for 10 minutes- in the middle of the aisle. Lily and and I continued to work with Bentley on how he could do and there'd be a toy and ice cream- I probably would've offered Disneyland if the idea had come to me- luckily it didn't. Bentley agree to walk to the window- the long way- so we went four aisles out of our way to loop around and then planted himself in the far corner - no where near the table and window. The pharmacist heard us and motioned if he should get it ready. I shook my head no. I sat with Bentley and helped him lift his shirt on his arm while continually reminding him the pharmacist was nowhere near us and didn't even have a needle ready. Bentley finally held his shirt up and said, "Ok, Mom, do it. I brave." And then I yelled, "He's READY!!!!" At this point it's 7:00 on the dot and so they're closing the shutters and he asked if we could move to the room by the table and I said- "He's not moving." "Ok, I'll be there!" said the pharmacist. Bentley sat patiently with his sleeve up and the pharmacist came out a few minutes later and sat on the floor in the middle of the pharmacy section of Target to give him the shot. Bentley let him clean his arm, but refused to look away. I know that most kids don't look- but for Bentley he had to know exactly what was happening. So Tony the pharmacist pulled out the needle and Bentley sat still as a statue and let him put that needle in. Then Bentley handed him the band aid and on the arm it went. We all cheered! Then Bentley said, "Where's my money?" And Tony ran to get it!

Back to the toy section we went and Bentley pulled a $150 LEGO Millennium Falcon off the shelf and said, "This one, Mom!" I laughed so hard. He eventually picked a smaller set and we all checked out. The man at the self check out cheered Bentley on (that was the second time he had to help me with coupons that day).

These experiences I have with Bentley teach me so many things. They teach me that I must persevere with Bentley- he is willing and brave- but he has to agree to it. I think the best part of day was seeing all the ways that people come together and love. Clayton and Lily were so sweet trying to help Bentley understand it wouldn't hurt and trying to help him think of all the toys. David willingly answered his phone no less than times at work while I tried to navigate how to help (thanks to my new watch since my phone was nowhere to be found for either visit to Target!). I'll never forget the image of Tony the pharmacist sitting next to Bentley on the dirty Target floor and giving him the flu shot. The cheers from inside- and the other friendly employees who high fived the kids on our way out. There are beautiful things that are happening every day- and I am just blessed that I got to be part of Bentley's story of bravery unfold. Today was a day of perseverance, creativity, and bravery- and we did it! We got that stinker to get his shot. And now it's time for an adult beverage and a toast to survival. Another day- another adventure -another day to be thankful.

worthy of you

I think sometimes I assume that everyone around me knows all the things and I am just late to the game. I was always a well graded student, but I found myself learning little. It's only been in my adult life that I have really learned to learn- I have been passionate about social justice issues for years- devouring every book and movie that discussed or enlightened me on a variety of issues.

For the past few years I have focused significantly on people with disabilities- and I have realized that we all have a lot to learn so I hope to do some posts...

One of the things that I think people don't realize is how recently we were institutionalizing people with disabilities. This practice began in the 1800's and there are still people who are living in institutions because when people fought to close there were some people who had no family.

Institutions are famously known for being overcrowded. Workers shoved food into children's mouths and they would aspirate and die. They were left lying naked and alone on floors. The conditions were disgusting. Geraldo Rivera created a famous documentary on Willowbrook that allowed the world to see what was happening. You can watch it here if you want., but it is a difficult film  I think it's easy to say- I'd never do that- or how could they do it? When children were born with disabilities families were encouraged to put them institutions. They were built in beautiful buildings with manicured lawns. Parents were often unaware of what it was like inside.

I am passionate about understanding institutions and deinstitutionalization for a few reasons. It's important to know history and to know my son's history- to know that 30 years prior he might have had a very different life. It's important to know history so that when someone treats my son unkindly I can have compassion- maybe they put a child in an institution many years ago and it's too painful to see him. Maybe the individual worked in an institution and it brings back trauma. The second reason I am passionate to learn and understand is that while many institutions were deplorable and inhumane- the even greater need we have is for community and connection. There are several homes being built that allow individuals with disabilities to live in a beautiful group home. These homes still don't offer community. It's a new form of institionalization.

Here's a quote to explain better what I am trying to say:

“One of the biggest similarities between institutional and community settings- that we have not overcome after 60 years of doing it with government assistance- is to overcome the abject loneliness that people feel- and the lack of connection. The lack of feeling like someone belongs to me and that I belong to them.... I get that people want to keep their kids safe- but quite frankly we haven’t figured out loneliness- people are lonely in the institution and they are lonely in the community. The question is: what’s the potential? The potential can never be realized unless people have the opportunity to move from being clients to citizens.” - Derrick Dufresne

There are so many well informed websites and books to read if you're interested in learning more about this topic- one website is this one: Parallels in Time.

My hope is that as you read this post and perhaps watch this 10 minute film I am going to suggest at the end- it will better help you understand what I mean when I use words like "fight" "advocate" "justice". In my lifetime we have passed major laws for people with disabilities. My lifetime. In my lifetime we have started including children in schools. In my lifetime legislation has been passed to allow medically fragile children have treatment at home instead of hospitals. These historical truths are important to know if we want to fully embrace and understand the movement that continues to happen. We are not at a place in society where I can sit back and eat popcorn- the work is still happening- the stigmas are still needing to change- and lives are still be impacted. 

I recently became aware of this film and David and I finally watched it yesterday. With tears rolling down my cheeks I am fully with the mother in her frustration as she changes her son. I know that look- that sense of helplessness. I am not able to understand their decision- I can't relate. But I watch because I want to understand. I want to enter into the kind of pain that would allow parents to make that decision. I identify with the passion of the daughter. She is the hero. She is the one who was so impacted by her parent's decision that it changed her- it allowed her to see the world in a unique and painful way. This story is fictional, but stems from a true story of a brother and sister. You can read more about the director's thoughts here: 

I find this quote from the director to sum up everything I am trying to say: 

It was near the end of the process, when I was writing the voice over script that I wrote the line, “I didn’t want you to think that nobody fought for you’. I realized why I hadn’t been able to let this story go. This was the core of our film, we need to fight hard to know each other, particularly when it’s difficult and our stories have been buried. If a story is hard to find, then it’s probably the most important one you can tell.


May we never repeat this. I sit in humility for the mistakes made by my ancestors- for the lack of understanding- for the indignity- for the ways they turned away from their children- for the doctors who said their lives would be better this way- I bow my head in shame- and then I lift it up and say- not for you, Bentley, for you- you will have us by your side- an army of people- always. You are worthy of love. You are worthy of us. And more importantly.

we are worthy of you.

****trigger warning- this is a difficult film to watch***

So Much Yellow from erica milsom on Vimeo.

on your 10th birthday, sweet son.

Today my son Bentley turns 10- and like every previous year I feel compelled to reflect on his life.

On the day of his birth we found out two important things. We found out we had a son. And we found out our son has Down syndrome.

Two years ago I wrote about a conversation with a man who thought that kids with disabilities should be in their own classrooms so other kids wouldn't have to be with them. I disagreed. I proceeded to defend my son and his right to be with other kids- but the damage had been done- I was faced with a man who is a teacher and is against the thing I spend my life supporting- that's a heavy burden.

A week ago Bentley went to his first ballet class. He watched the movie Leap mid summer and became obsessed with ballet. He worked diligently on all his chores until he had saved the money to buy ballet slippers. He wore his slippers daily- even in his sandals. He dances daily- observing carefully each dance move on the various youtube videos. When he realized I was willing to enroll him in ballet classes he begged me daily to call until I had scheduled his session. Last week I proudly dropped him off- watched from the studio door for a little while and then went downstairs to watch from the video cameras so I could watch Lily dance too. He was attentive. He was cautious. He was present. He was all the things one would hope. My heart was beaming. After class I popped in to ask the teacher how she thought it went- she looked at me with tears in her eyes and said, "That was hard.    That was really hard for me." My heart fell. Fortunately my son was in the other room changing out of his shoes so he didn't hear her. It's hard to sum up what a person means when so few words are used. However, I have what is called the gift of mercy- I also am highly empathetic and hyper aware of others and how they feel- sometimes these traits are a gift- sometimes they are not. I know what this teacher was saying. She was saying that she wants to teach children who will become ballerinas- she wants to teach children with perfect lines and perfect hair - children who fit in the ballerina world. While Bentley did all that he was asked- there was still a noticeable difference between the way he dances (at this point) and the girls in his class. I am regularly aware of the ways that Bentley is different- I am aware that this life is harder for him. But I am also aware- these challenges- these obstacles- they are not a reflection of him- they are a reflection of the rest of us. Regardless of this truth, I left the studio in tears.

It always takes me a couple days after these difficult interactions to get back on balance. I waiver between anger, resentment, and fear.... until there is a moment that jolts me back.

I was on the phone with a woman from Alabama who is a disability advocate. She and I were talking about how this work never leaves us- how it's always on our minds- so I briefly shared the ballet story. She paused and said in her thick southern accent, "Honey, now this woman isn't worthy to tie his shoes. Is she? She would likely learn more from your son than she would at Harvard."

And that was it. That was all I needed to hear to help me get back to work- back to life.


For ten years I have been shouting the worth of my son. From teaching people not to apologize with a new diagnosis- to fighting for his placement in preschool then elementary school to helping him be with typical kids in after school activities- the work is continues.

And so it is- on the anniversary of your birth- my dear son- I declare your worth again.

This year you are signed up for ballet, gymnastics, and horse lessons-
We filled out a school form because you want to help with the talent show at school, help with recycling before school, and collecting kudos.
You said you want to play the violin with the orchestra.
You'd also like chickens and a rabbit - oh and maybe a horse someday.
You daily talk about driving a car.
You give everyone the best hugs- including the bus driver who yelled out to me this morning, "This is the BEST part of my day!"
You love your toys. You love to play with Lily and Clayton.
You would probably live in the pool if I let you.
You dance with your heart and soul.
You are loud and funny and witty.
You have taught me an extreme amount of patience and to trust.

My promise to you as your mother is that I will always defend your worth- I will advocate and sometimes fight - to make sure that you have every opportunity that you desire.

My hope is that we continue to win over with love those who see you as anything less.

Happy Birthday, my dear son, Bentley.


** the owner of the dance studio called to apologize, but this issue as a whole is currently working towards being resolved **

Adam's Camp

Three years ago we took the kids on a 7 mile hike- we had been camping for 3.5 weeks and decided they were ready for a finale hike before we trekked to our new home in the Sonoran Desert. The halfway point was a beautiful waterfall- we were blessed with the sighting of a bull moose and the beauty of the mountains- but the thing that made the hike unforgettable was a couple- they were so good with helping us get the kids back down the mountain

and then the said, "Hey! Are you here for Adam's Camp?"

And that was just the beginning...

We later learned that Adam's Camp partners with Snow Mountain Ranch- a 5,000 acre camp near Rocky Mountain National Park, Grand Lake, and Winter Park. Adam's Camp started 32 years ago- here's an awesome video about what it's all about...

Registration opens in November every year so when we returned to Tucson I set my phone alarm and when it opened I immediately registered.

This was our third summer at Adam's Camp. The first year Bentley was in a more clinical setting with a speech therapist, physical therapist, dance therapist, and musical therapist, as well as, volunteers.

The last two years Bentley has been in the program that is less clinical- he still has goals- but they go on several adventure trips a day and have one overnight.

Next year he will be in the next level which means he'll have three overnights- they'll work heavily on his independence (cooking together and all the other daily tasks that one does) in addition to several adventures a day.

Adam's Camp is probably like many adventure camps across the country- there's high and low ropes courses, a huge tubing hill, hikes, canoes, swimming, bumper cars, the list goes on...

It's not the adventures that keep us coming back... it's the developmental leaps our three kids make while we are up there.

Clayton and Lily attend the sibling program. Again, they do the adventure programs- but in addition they have discussion groups every morning that focus on who they are in the family.

Research and personal observations show that the siblings of kids with disabilities often times come out on top- they are extremely high achievers, talented, and empathetic- but they also feel like all the attention is always on their siblings- that their needs always come second- and that sometimes they're invisible. So while I know that Clayton and Lily are probably gonna turn out alright- I am hyper aware that they have voices and a need to be seen and heard too.

On the last day of camp every year the counselors share the qualities and characteristics of the siblings and the siblings read the letter they have written to their sibling with Down syndrome (we go during DS week every year).

The part of Colorado that we visit has cool mornings in the 40's and highs in the 70's/80's- it's one of the most beautiful places in this country with the Rocky Mountains, the greenery, and so many lakes. Snow Mountain Ranch has some of the kindest youth and staff working all summer. All of these things and more combined would give us enough reason to return- the reason we keep returning is because of the gains that we see in our kids. Research and stories indicate that kids who return to the same places year after year with their families are instilled with a strong family identity- rooted deep. So while David and I would probably prefer a new adventure every summer we know that our kids look forward to Adam's Camp every year. We also see how the the trained staff manage to help Bentley grow exponentially every year.

When it comes to our kids I know we are all trying our best. I have so many doubts about every decision I make- so many tears have been shed about my decisions. On balance I know I am doing my best and that they're gonna grow because of us and in spite of us. There is peace in knowing that some decisions are good ones- and I think our return to Adam's Camp- for at least another year- is one of those decisions I won't regret- I haven't thus far...

what will be

My children were born into community.

They were born into love. 

They were born into chaos- beautiful chaos.

We lived in a community house: Chris + Leigh, Micah, Scott (+ Kristen), Nate, Karla (Kaivon and Kameron). 

We were part of inner city ministry in Detroit, Michigan. First the Van Dyke Place. Later, the corner of Mack and Burns. We had a triple lot with vegetable gardens, chickens, rabbits. A swing set, sand box, and grass abounded. We ran sprinklers, played in the snow, took walks in the rain. Everyday a group of women and I gathered together at the public library, the splash pad, the Science Center, the zoo, backyards, basements, third floors, kitchens, alleys, car trips to Costco, didn't matter- we were together. We changed diapers while sitting on couches, walked on the streets so we could fit all the strollers, traded babysitting, watched the little eyes of our people glow with wonder. 

We talked about theology, sang praises to the King, wrestled with what it all meant. We saw houses get shot up, were next door as homes were robbed, walked to find the house fires and watch the glow. We made friends, had community bbq's, we learned the culture, the history, and the beauty of Detroit. We shared clothes for events, passed books around, toasted over wine, went to birthday parties, found ways to encourage one another- lived a glorious life together. We tried recipes- we cooked vegan, vegetarian, beef, chicken, gluten free- you name the need- we'd find the perfect recipe. 

Easter, Christmas, Thanksgiving- always together. Warm homes, beautiful lights, candles, fires, late nights, new beers, here, try this recipe. 

I had no idea that what we had was so unique. One of the core recently moved away and she is struggling to adjust. Will it get easier, she asks. Easier? You mean will you replace it? Probably not. Easier, perhaps.

We moved into a new home last year. We bought a house with a pool and a big backyard. Other than the obvious move for Bentley it was also in part to invite people in. 

Compared to the life we had in Detroit, few have come. 

Over rice and vegetables at a local restaurant we discussed my perceived loneliness with friends. "Well you've invited us to swim, but I don't want to take advantage of you." 

The words stung heart. "Take advantage of me?"

"Adrienne, you're inviting people to use your stuff, you're not inviting them to be your friend." 

Like The Giving Tree I am begging, "Come friends, come swing from my branches and eat my apples". Come enjoy the gifts that God has given us. And like the boy who wants more- it seems that those I have invited were not looking for a pool or a house or some food- 

I am offering the wrong thing. I am offering things. I am not offering friendship. 

But friendship is what I long for.  I long for for more than a monthly gathering or a weekly meeting. I long for the daily interactions- the texts, the meet ups, the assumptions we will find ways to be together. In part I long to be the center. Not the center like I need the attention- the center like you're welcome here- you're safe in this home.

If you come and need to cry I'll put on a movie for the kids even if they've already watched. 

If you come and you're hungry I'll start naming all the things I have to make you food. 

If you come and you're angry I'll let you rage. 

Come unannounced. 

Come because you're in the neighborhood- come because you aren't. 

Perhaps such a blog sounds like a desperate plea to get friends. 

It's no such thing. 

It's recognition that what we had in Detroit was unique. 

It's a confession that I've offered it all wrong.

It's understanding that as we get older it's harder to develop and maintain friendships. 

It's a fire to ignite us to work harder to find community in between the sundays. 

It's a longing- a truth- that what I want is more and a realization that what we have is enough. 

Sometimes all we need is to put words to our emotions- and see the stories behind it and simply realize that we may never have what we had in Detroit; but also realizing that what we have is something else- its clay remolded. It's a new creation- a new chapter in this book, authored by a God who dearly loves us, knows us, and wants good things for us. 

When we compare what was with what is we miss the opportunities of something new.

The great thief of joy is comparison.

I have been comparing a community past to a community present.

And so today I repent of the desire to create what was

and hold my hands wide open to receive

what will be. 



Amen.

on marriage

David and I just honored our 13th year of marriage. I sort of forgot it was on Monday and invited some friends over so we didn't do anything special. As I sat at our beautiful wooden kitchen table with a friend delicately placing crackers and cheese on a white plate David said, "Oh I have something for you!" He ran out of the room and grabbed a letter. The thing about my husband is that I have very few letters from him, but the ones he has given me- I treasure. I opened it up and he wrote for 2 pages about the ways I inspire him, push him, and that he really loves me. And then there were the receipts for three musicals that will be in Tucson over the next year. With tears running down my cheeks, a smiling husband, a cousin helping with dishes, and a friend next to me that I am sure wondered if she was interrupting a sacred moment I looked up and mouthed, "Thank you."

David and I shared our vows on June 11, 2005. We were 23 and 24 years old. I was a recent college graduate and he was a high school history teacher. We had a small plan to get him into medical school and live in Tucson. Fast forward 13 years- he's now a stable and talented physician and I am involved in our community. We are finding our way. It was a very curvy route, with some deep deep lows.

On my run up the canyon this morning with friends I started to think about marriage in a way that I hadn't previously considered. I started to think about the things that saved our marriage- the things that make our marriage- the things that I value.

I think sometimes we see someone that's broken and/or hurting and we either prescribe medication, or send one or both parties to counseling, or tell them to take time apart, etc... Those seem like the big three responses to conflict. Before I go on I want to say that I support counseling. As you'll read, I have seen a lot of counselors, and we have met with pastors and friends... but I also want to suggest some other ideas.

About a year before we left Detroit,  David suggested we spend three weeks on the road! I made camping reservations and planned a route. While on the road we turned off our phones. We did this because we wanted to focus our eyes on what was in front of us. Those three weeks were probably more therapeutic than all the years of therapy have ever offered. Not only did we see some of the most beautiful things in the world, but we considered one another in everything we did. During that trip we created a new family identity. We made up new jokes, saw all kinds of animals, woke up early, and just loved being together. It was also the trip that introduced us to Adam's Camp- which is now a yearly family thing we do in Colorado. Those 3 weeks on the road watered roots that were very thirsty.

A big part of this post will give a lot of emphasis on traveling and adventures- that is how David and I fell in love. We are the kind that get backpacks and fill them with a few things (mine is always heavier) put on a pair of shoes and come home with darker skin, swollen feet, dirty hair, and hearts that are full. This is our way- there are so many other ways!

Over the last three years we have traveled to Mexico regularly- spent time with the kids looking for shells, teaching them about the moon, eating tacos and really identifying our routines. We continually go to Adam's Camp and it is a place that kids look forward to- it's another place our identity  as a family lives and will be forever tattooed on the hearts of the kids. We take hikes, and eat at restaurants.

My view of marriage is similar to my view on schools and therapies (speech, ot, pt)... and that is we thrive and grow when we are having fun. Traveling gave David and I an opportunity to focus on our strengths. As we discovered new things around us we discovered a deeper love. Clinical settings and schools have a purpose- but sometimes they lack spontineouty and focus on goals and objectives and merits and strengths and weaknesses. I think we need to throw that stuff out the window sometimes and just learn to fall back in love.

So my advice is if you're constricted by kids or work and can't find a chunk of time to get away and enjoy your marriage, start small. Look at finding ways once a week to just be. To love. Discover. Eat. Pray. (Ha! I kind of quoted a book there!)

Our marriage is a flow. A flow of kitchen tabled cards with tears running down my cheeks in the middle of all the mundane tasks of life- it's hand holding while we watch a child in a soccer game or at a park- it's cooking lobster tails in butter because they were on sale at Sprouts- and it's also big adventures. The most important ingredient is that we throw out the criticisms, throw caution to the wind, and wrap our arms in love. So cheers to love. Cheers to 13 years. Thanks for holding on, Love, it's a wild ride- but I am ready for more.

a letter to the world

A letter to the whole world:

It is not uncommon that I have my 3 children out in public with me while I run errands or go to a birthday party or some other adventure. While we are out and about sometimes people lovingly stare and sometimes their eyes meet his and they quickly glance away. Every once in awhile someone will say, "Oh, I hear they are so happy." or "My son has a kid in his class with Down syndrome and he's so sweet or joyful."

Can I just say, I hate this language, and let me tell you why...

We live in an extremely unaccepting world when it comes to children and adults with disabilities. From the stares that suggest we should leave because a child is having a fit or being too loud, to the requests to leave because of those things. From the inaccessible playgrounds, restaurants, sidewalks, and homes that don't allow everyone to join to the cultural expectations that we act a certain way in certain places. These things make it extremely challenging for many of us to venture out.

Recently we had a pool party to celebrate a pregnant mom and her husband in our church and during the party my 9 year old son proceeded to get completely naked and run around. I don't know why he decided to be naked. We have talked about how nudity is allowed in bathrooms and bedrooms. We have worked with him specifically on this issue for over 2 years, and alas our first house party with a variety of children he decides to run around naked. I looked over- saw him naked- of course it didn't surprise me and I ushered him into the house and he got dressed in his bedroom and I apologized to our guests, but I also said, "If you come to our home you're gonna get some nudity." There was laughter. I chose not to make eye contact with anyone because I had zero desire to meet appalling eyes. At this point the people in our home are familiar with our family craziness... But friends this is the reality. Bentley might get naked after he swims even if we have talked about it for years at 10 or 15 or even 50. He's a little bit unpredictable and completely capable of making such choices. So don't be surprised. And please, have compassion.

This morning I lost track of Bentley for about 10 minutes and I found him watering the pavement (we live in the desert and water is a scarcity and we already probably use too much) and he was watering down all the windows. Yesterday he got mad at me and kicked my seat repeatedly because he wanted the front seat, not for me to have it. The other day he poured out a whole bottle of vanilla because he wanted to make cupcakes. When I am asked if he can use the bathroom alone I always hesitate. 90% of the time the answer is yes, but there is always a chance he'll unload an entire load of toilet paper and clog the toilet. He's also extremely stubborn. While my other 2 children are by no means perfect and give me my own set of headaches they cannot touch the level of chaos that Bentley is capable of.

I fear that as I write this I will be judged for being a bad mom- that if I controlled my child these things wouldn't happen. However, I know without a doubt that I am not alone. There is a reason that there is a Down syndrome support group in every state in the country and there is a reason many of us are exhausted.  It is because raising a child with an intellectual disability is really really hard. I have heard it said that God gives special kids to special people. This is bull shit. I was not a special person. I was a broken person who really wanted a baby. And that baby has challenged me and formed me and made me a thousands times over a better person than before him. I firmly believe that those in my community stand up to the task because we quickly learn that failing is not an option- and so we fight. We fight every urge to quit- and we fight our way into society so that our new normal isn't just ours- it's for everyone.

It is said that between 67% and 92% of children in the United States are terminated with the diagnosis. I know that around 95% of my friends given a prenatal diagnosis were encouraged to look at termination. It is extremely hard to measure termination rates because not everyone will share why they terminated a pregnancy. Many of us in the disability world cringe at these numbers. And I've had very vulnerable conversations with pro choice friends who articulate the painful difference of terminating because of a diagnosis vs. terminating for another reason. Before I go on I want to say this blog is not meant to debate the ethics of abortion. However, I think many of us are afraid that if we shared the true struggles and pain of raising children with disabilities the abortion rates might go up. If people really knew how hard it is they might run for the hills.

It is my personal belief that we shouldn't run away from things because they are hard. I really do believe that what doesn't kill us makes us stronger. I am proud of how strong I am. I am proud of the work I do to help advocate for children with disabilities. I am proud of my son and I am thankful that he pushes me. When I was training for the marathon I hated most of my runs, but I did them anyway. After the race was over I was in a lot of pain for a week and not really able to get back into running for about a month without pain. However, when I look back I see glory. I see hard work, dedication, and commitment. I am proud of that. When I am in a personal battle with Bentley I feel angry and helpless and I wonder if I can go on... but then I am out of it and I have fresh eyes and I have had some sleep I look at the same situation completely differently.

I mostly write about how amazing my child is, and it's true, he really is amazing. He's thoughtful and kind and witty and loving. But he's also stubborn, and curious, attention seeking, demanding, and frustrating. But those characteristics are the things that make him strong. They allow him to advocate for himself and demand some more independence from a world that thinks he will always live at home. I want more than anything for him to have the things he wants- just like his brother and sister. I want him to make small financial mistakes. I want him to have the independence to explore- to get lost on the bus route or stay out too late or wake up with a headache because maybe he drank too much. I want him to have a life- his own life. I refuse to protect him from the world- he has to find it. And he might do things while he explores that are not "normal". He might take french fries off someone's plate while he walks out of a restaurant and beg someone to give him their coat because he really likes it or yell when he should be quiet.

The belief that kids are always happy perpetuates a myth so that when my son is misbehaving or having problems it seems like it's "not normal." However, this is my normal- it's his normal. And it's ok. We will all be OK.

So today I beg you all to change the way you look at people with Down syndrome. I want you to look at him as a person. He's a person that laughs a lot, runs to give giant hugs, isn't embarrassed to dance like crazy, and loves to be the center of attention. But he's also really hard to raise. So please don't comment about how "happy they all are." And if you see an individual causing chaos or grabbing food, or begging for more,  take a deep breath and let the mom or dad or caregiver know they are doing a great job- or that they've got this- or simply offer to help. Because behind every mom's smile or look of frustration is a whole variety of other things- most likely a woman who is holding back tears with all the strength she has just to let them pour out in the privacy of her car.

If by chance you are reading this blog and you have a new little one in your arms or one in your belly. Please don't run for the hills. Buckle up. You're in a for a hell of an amazing ride. You've got this. And we've got you. Welcome to the best club on earth.

Sincerely,

A mom.

marathon. check.

Last year I began running again after taking several years off. My friend, Coleen, was training for her fourth marathon and I ran generally 1 x a week for one of her 5 mile recovery runs. We occasionally ran Sabino Canyon as well to bring in a 7 miler with hills. After her marathon we continued to run, but I got lost in the house buying/selling process, a hot Arizona summer, and lots of travels- so my running stopped. Meanwhile David picked up his running and ran a half marathon in the summer with his dear friend who went through all 4 years of medical and 4 years of residency together, Scott Selle. Watching them cross the finish line reminded me the feeling of finishing a race: it's so contagious! David decided he would train for a full and I laughed at him and said he was crazy. As we got closer to the start of the school year we decided to put Lily in the full day kindergarten instead of half day because we found out there would be a little girl with Down syndrome in full day and I really wanted Lily in her classroom. This decision is one of the best of my life- Lily loves her sweet friend. That story is for another day. The thought of wide open days with kids in school challenged me to consider what I would do with my time. David suggested I take a sabbatical year and do whatever I wanted for me- so I decided I'd run. Initially I thought I'd do a half marathon because I had done the Detroit International Marathon twice (both at a very slow pace!) and I enjoyed it. I began running with a local running group (Tucson Runners Project) and they have a  coaching program- I kept asking David if I could pay for coaching and he kept pushing back... finally one day I was online and they were offering free registration for the full marathon with the purchase of a coaching session. Boom! I jumped on the opportunity! In the beginning of September I would join the group for Wednesday's track sessions. Then I would run a couple days a week.

This is a photo of one of my earlier runs- I felt so good! I had no idea what was coming. HAHA

The week of my birthday was the beginning of my official marathon training session. I was given Nick Hilton as my coach. At first I felt disappointed because I wanted a woman to train me, but I decided to trust the process. Each week Nick put my training into an app- he did it weekly so he could adjust it based on how I was feeling or if I had an injury etc... As soon as I read my first week's session I laughed. All these years I had thought I was a runner- I had never run so many miles in a week! The first couple months of my training I was gearing up for a half marathon in November. I accidentally signed up for an extremely hilly half- I was so bummed at the time! Later, I reflected on how good this experience was- it really strengthened me. Throughout the 4 months I tried to incorporate hills on a regular basis. I live in a hilly neighborhood- so that makes it much easier! In the end I grew to really admire and respect my coach and I highly recommend him to anyone. He truly knows what he is doing and was such a support the whole way through!

I was able to see the most amazing sunrises on my regular early morning runs!

The kids did a fun run in September- it got us all in the running spirit! 

Early morning track work out preparations! I had to wake up around 4 AM to make sure I ate a banana and had some coffee before I drove 15 minutes to the 5 AM track work out- you don't want to be late to track!

Often I was the second one to run and so I'd miss taking the kids to the bus- but sometimes I'd make it back in time and the kids would come running to me! Who doesn't want their littles running towards them in excitement! I had to brace myself for their love! 

I began collecting all kinds of running bling. First, my watch. A Garmin 235. I LOVE THIS WATCH. I trashed my asics as they changed the shape of the shoe this year (narrowed the toe- left my feet bloody after every run) and moved onto Brooks. I love my Brooks Adrenalines. I just bought my 3rd pair. When my coach helped me pick out shoes he laughed at my cotton socks and told me I needed some different ones... thus the birth of expensive socks that require total vigilance so I don't lose them! 

In the beginning the runs were relatively easy on my muscles- I remember being exhausted all. the. time. I took naps whenever I could and I was always in bed early. As I reflect back I laugh at how tired I was! Nothing had worn me out so much! Luckily my muscles weren't sore so I didn't have to deal with both at the same time... don't worry I became plenty sore over the months that followed! 

In October I added Hot Power Yoga to strengthen and stretch my sore muscles. I love my local yoga studio- Sessions. It was such a healing part of my training! 

As the months drew on I added a headlamp for early morning runs and I started carrying my water- I should've started carrying water much sooner! I love my hand held water bottle. 

Early one morning Tamaki (my faithful running companion!) and I were running and on our way home we found a rattlesnake that had been sadly hit by a car. I called David and he brought the kids up so they could see it. 

I learned to drink two cups of coffee- one when I woke up and one around 2 PM to survive the early mornings!

On a Sabino Canyon run I found my friend Claudia out running so we did some miles together! One of the things I learned is that not every run has to be done with someone for the whole distance- having people join me for all or parts of the runs was such a treat! She really pushed me to run hard that last mile- I remember! 

I did hurt my hamstring (notice my ice packs!!?)- luckily it only took me off one 5 mile run one day. Then I had a couple days off before the half marathon. Even the day before the half marathon I was in pain for my shake out run.  I truly believe most injuries are related to emotional stress- so I did a lot of reflecting and I decided to go for the half. It ended up being a great shake out run and I felt sooo much better after the half marathon! Plus I think the added boost to my self esteem helped. 

I was so so so so hot on this run. If I could do it again I'd carry my water and I would've worn shorts. 

Those are some hills!

It was fun for the kids to join me on the track a couple times! I love how kids see themselves as stronger and faster than us adults- we should nurture that self love! 

I ran in Mexico a few times and then laid on the beach after- phew!

One morning I took a 5 mile run before yoga and my car was broken into... I think this is one of the benefits of running and working on your mindset- rather than falling apart- I took it in stride. I was able to see their brokenness and need and not just my inconvenience. 

I made sure that we took lots of selfies to document our training! I can't thank Tamaki enough for showing up with me all season long! 

On this day I managed to run a 7:30 mile on my 5th or 6th mile! This was one of my forever highlights!

Lauren ran the first 10 miles with us and Coleen ran the second 6 miles- what a day!

I couldn't believe how much stronger running made me in yoga!

17 miles in the books. 

I drank smoothies after almost every run. This is blueberries, celery, and protein powder. I also drank bananas with water and peanut butter protein powder. 

This was a memorable beautiful late morning run- it was the day after a hard 17 miles and I just flew! 

Last 5 mile run before the big day!

THE BIG DAY: We woke up at 5 AM (per my request). I packed coffee that I made at home and put in a jam jar. I was told you should ONLY eat and drink the things you had been drinking during training- so I took it LITERAL! I drank my usual coffee that I make with my percolator. I also packed my toaster and brought my usual bread. I drank one glass of water. We left the house around 6:15 to go to the start line. 

Even the morning of the marathon I wasn't sure if I was up for the task haha. I spent the hour before the race pacing and peeing. Also I took some ibuprofen just in case. Cause- why not. 

The first group started and before I knew it we were off! I ditched my sweatpants and sweatshirt before I crossed the start line. 

About 2 miles in I came to a man pushing a child in a special running chair. I gave him a high five and told the kid he was awesome. I have read about people who do this- I love it! Maybe one day I will work on strength and push a buddy!

I decided to treat the marathon like labor. The first 10 miles I settled into the reality that I was running a marathon, but not to get too ahead of myself. I kept my pace around 9:20-9:25. I looked up and around and smiled. I had a great playlist going on spotify and things were looking good! I felt better than I imagined I would feel. 

I got really excited as I anticipated finding my friend Sarah around mile 13. She lives with her lovely husband and 4 boys right off the course! Sarah and I were college roommates and she has remained a friend through the years. It was such a joy to run down Arcadia Street and look for her- I was so excited when I saw her and gave her a big hug! I high fived her husband and off I went! 

The next 7 miles were in and out of Scottsdale- I anticipated it being a really hard stretch so I said buckled down into my running and moved on. Coming around the corner there was a huge crowd cheering us on and I got a huge smile on my face! There was about a 2 mile straight stretch and I could see the front runners on their return back out of Scottsdale so I kept my eyes out for David- finally I saw him and we both ran towards the middle to high five and away we went! This was such a sweet moment! I hit mile 16 in Scottsdale and I just felt giddy and strong and I looked at my watch and I was easily holding an 8:45/mile! I stopped every 1.5 miles to drink fluids so my times were not equal to the pace I was running- but included stops to hydrate as well. As I was heading out of Scottsdale I looked at my watch and knew I was about 1.5 miles from Heather Joy and so I got excited to see her! 

I kept looking for her, but I wasn't seeing her and then finally I caught her on a street corner not the other side of the road and ushered her over to give me a hug! I couldn't hear anything with my blaring headphones but I could feel her exciting energy for me to finish! We took a quick selfie and away I went! 

Around mile 23 I started to notice I was getting hotter and I would pour water onto myself to help cool off. I also stopped to drink just a tad more to make sure I had enough in me. All the sudden I realized there were HILLS! HILLS! I hadn't mentally prepared for hills! I pushed up one giant hill at a 12 minute pace- my mantra for hills is- lose seconds not minutes- so I try to never walk even though my pace is so slow. Once I got to the top I pushed again to run down - though my legs were pretty fatigued. Then I came around a turn and more hills! UGH! Basically it was 2 miles or so of hills - I noticed many runners had a noticeably decline in their pace of the last 10 K. Finally I ran over the bridge into Tempe and I could sense the finish line was around the corner. At this point I had turned off my headphones and was carrying them so I could hear the rush of the crowd. As I approached the corner I saw Erin and her girls and Tamaki's husband Ron CHEERING- I smiled at them and then focused on the finish! I heard my name to the left and saw Bentley up high on his grandpa's shoulders and then I heard Betsy and David and the other two yelling my name! I picked up my pace as much as I could and made it across the line and literally stopped just past the tracker haha.   

It was such an invigorating experience and I am so glad I didn't give up!

They had huge fences up so I had to walk another 1200 meters or so to get out to see my family, but I was so tired I had to stop every 10 feet!

Family picture! David also ran a great race! 

The kids made me a sign! 

They made their dad a sign too!

Overall I am really happy with my time- my next goal is to break 4 hours! I know I can do it! I enjoyed the journey along the way. My quote that I held onto throughout training was:

You didn't come this far just to come this far. 

(I owe many thanks to David's wonderful parents who watched the kids on several occasions so we could run and for their continued support! They also took care of them in Phoenix for us! I also want to thank Siobhan who was a hug support and help and inspiration- she's a fellow rocking' 21 MAMA and mad runner- winning things like ultras in leadville- I am so grateful to her! Also my dear friends Tamaki and Coleen and of course my faithful Love.)