Ensenada

We arrived in Ensenada yesterday around 2 pm. The drive was nice- very curvy through the mountains. Ensenada is one of mexico’s largest cities so there is lots to do. I booked an Airbnb just as we lost service leaving san Felipe. I didn’t get to do much searching and I hadn’t researched the area because we hadn’t planned to be here at all! I found a cheap place just a block off the beach. When we pulled in I was skeptical- the pictures can tell the story. David laughed at me and said- “Where’s your sense of adventure?? Don’t you remember the places we stayed in the south of Spain?” I guess I forgot about those! The man who showed us the apartment is also a mechanic so he said he’d help us in the morning with the car. We brought up all of our things as we were advised not to leave anything in sight. I was feeling a little lazy after a couple days so three flights with all of our stuff felt refreshing! After settling in we made some lunch (quesadillas with retried beans i had prepped in Tucson) and then we took a long walk down the beach. When we returned the kids immediately started playing with the kids in the neighborhood. Our apartment is in a large building and there are lots of kids that gather to play all kinds of games together. They all have rules that can mostly be explained with gestures and watching. I helped translate as needed, but mostly leave mine to interpret as they go. The neighborhood children are very sweet, energetic and thankful for new friends. The kids played for hours running around . We decided to cook at home again- (we haven’t eaten out once!) We walked about a mile to the store and bought avocados, lime, onion, and tostadas. I pre made rice before we left and brought cans of beans so we made a nice dinner. After dinner the kids all got showered and we watched a family movie. We have been completely technology free but it was nice with all the challenges and changes to have a night on the couch. The kids got right to bed and we all slept until 7. Thank God. For breakfast we made eggs and tortillas - a delicious Crawford specialty. Our host called around 9 and said he was on his way. He and David drove around and it seems we have a place that can replace the starter motor in the car. In the meantime we walked to the beach and the kids have been playing games and having fun. We are located south of the main drag in the more modest neighborhoods. In the distance i can see a giant cruise ship that has docked and the biggest Mexican flag (flag in general) I’ve ever seen! I’d like to make it down to the downtown area to try some food.

I feel so greatful for the experience the kids are having. They are well aware of the trash that lays all over the roads- the giant random holes, and those that dig for food and treasures in heaps of rubbish. They are at an age that we can begin talking about these things and talk about how to notice without judgment. I’m thankful that they are gaining a new perspective as well. They are being invited to see the poverty and the love. As they play with children who speak a different language and live a different life but play the same games and laugh st the world- it’s really beautiful. I couldn’t have planned this experience. I would have never known we’d choose an apartment in a neighborhood wit) such friendly children- I didn’t plan for the car to break nor to be in Ensenada at all. I’m thankful to have married a man who embraces chaos and the unknown- who can sit on a beach and relax while reading a book with our car sitting in a parking lot- no starter motor - in hopes that our host calls in the next couple hours to take him to a place to get it fixed.

I always loved the scene in the movie Titanic when Jack talks about not needing anything. He won his ticket in a bet- had the clothes on his back and smokes in his pocket- the world is just one adventure waiting to happen...

As our journey continues our motto stands- it’s not where you are- it’s who you know. And we have met some lovely people.

We we arrived in Puertecitos yesterday afternoon. It’s hardly a town- smaller than my neighborhood. Small houses surround the water- it’s a fishing town - but famous for the natural hot springs. We set up camp- took a look at the springs (we were advised to try them again in the morning as the tide was too far in to enjoy them). We went back to our little spot and got all the toys out. The kids were building castles and David and I blew up the paddle board. Clayton starting getting a piercing headache that required all sorts of accommodations to ease the pain- but eventually I got him to sleep.  David and I looked at each other and agreed it was a beautiful day to relax and get a beer. The town is so small there’s literally no stores (only a small gas station with no ammenities). David heard about a potential place up the road so he went to start the car when... lights. Electric. No turn over. We went to the site up a group of young men who we asked to help. One had jumper cables and so we met him to get a jump. He quickly realized the battery wasn’t dead and asked for a rock. He then instructed David to turn the key while he got under the car and began hitting something under the car over and over again until it started. We all squealed. David then said- well- we are packing up! We packed up the entire campsite in record time and headed back to San Felipe. We found a modest hotel on the beach in San Felipe. Upon arrival we woke up all the kids and asked them if they wanted yogurt or cold pasta because with all that is happening we also have a dead lighter so we can’t start up the stove. We ate our hodge podge dinner on the beach and played a game of volleyball before heading up for the night. We got the kids in bed and all were fast asleep until 5 am when my second born started projectile puking. We tried to the keep the energy in the room calm because I was not up for another 5 am morning! David cleaned up Clayton and I got Bentley to sleep and we all got another 1.5 hours! New day. New adventure!
In the morning we ate fig bars and yogurt and headed out to the beach. Lily and I collected some shells and the boys played soccer and built castles. We were all enjoying a lovely morning when we decided if there’s hope to get to Guerrero Negro we need to get to ensañada for the night. I went up to take a quick shower/ my first one since tucson! As I was showering the power in the hotel went out and I just started laughing. Of course. The kids came up and we packed up the room and got a couple snacks out... David took a shower and then went down to see what our next steps were.. stay here? Head to Ensenada? He turned the key and..... success! ENSENADA here we come! We brought all the things down with the car running (it feels like a scene from Little Miss Sunshine.) Bentley and I went to the office to turn in our key and I asked her about the roads.... here’s where my faith comes in:

Apparently the roads from puertecitos to Bahia de Concepcion are completely impassible. Give boulders- washed out bridges. Chaos. Obviously some can pass if they have 4wd and knowledge of very rugged roads- but this suburban and family of 5 would have had major problems. I feel so greatful we had to come back to San Felipe.

So currently we are headed to Ensenada - we plan to see about a mechanic and hope to get to Scammon’s Lagoon by Wednesday to see the whales. All the reading and prepping I did equally prepped me to be gracious and accept the challenges of rural roads and the kindness of Mexicans. I continue to love this place dearly and am thankful my kids are being trained in resiliency, creativity, compassion, and adventure.

Excited for what the day brings!

It’s not where, but who...

We loaded up the suburban last night - we are driving a 2004 with 210,000 miles on it! The roof rack has our camping chairs, sleeping bags, sleeping pads and tent. In the trunk we have a large bin with the cooking stove, cups/plates/silverware, bin to wash dishes, dry food and other kitchen necessities. We packed a bin with games for the beach, hammocks, and other random camping needs (I have a whole list!) we packed a cooler with some prepared foods, etc.. I packed each kid with a little day bag  that has binders with age appropriate worksheets and fun pages. In the front seat I have wrapped gifts (books) and other activities to pull out at random. If you give kids all their options at once you will undoubtably find them bored- but pull things out at random and voila! Happy kids! The drive to the hotel was uneventful. The kids listened to music and we started Coco the audiobook. They fell asleep by 8. We pulled into the hotel around 10 pm. Unfortunately the woman working didn’t know how to use the computer well and she put us in a handicap accessible room - which doesn’t matter to us- but it didn’t have black out curtains and it had a security light pouring in. It gave us the illusion that it was day all night long. Lily was wandering around the room in the middle of the night thinking it was day and I woke up at 3:30 thinking the same. The boys woke up at 5 and I made them cuddle until 6. There was a delicious continental breakfast for the kids. The boys and I played Dragonwood while we waited for David and Lily to join us. The woman in charge of breakfast was extremely kind and told me she has worked in that hotel for 14 years. There is a loyalty in certain places that is admirable.

The border crossing was only about 10 minutes from the hotel- we exchanged money and bought a soccer and football for the kids. And off we went!

For this particular trip we had to get the passports and special tourist visas called FMM paperwork. Immediately after crossing the border we went to the immigration office to get the paperwork stamped (I had it filled out and paid for prior to leaving). Upon entering the building we were told there wasn’t anyone working and should go around the bend to the other location... I checked with a couple other people to verify this information- including a security guard with a giant gun who said, “Are you sure you need a stamp?” To which I responded, “No se. Dígame ud.”

We drove around the bend but it’s all a very confusing area because we didn’t want to end up going back in line to the US.  After some confusion David parked and I jumped out asking a woman with a vest- she took me down a road that said: no pedestrian. No trespassing. I thanked her and went in the building. The man standing there took all 5 passports and paperwork and spent about 10 minutes processing and stamping. He said, “You came  from down there?” Referring to where we crossed around the bed. “Yes, I said. “Ah, yes, my buddy works there but since it’s so slow he came up here to get food. He’s back down there now.” “Of course.” I laughed. After he processed our paperwork I proceeded out the door and ran back to the car- arms in the air- smile on my face! We are in!

As we drove out of Mexicali David looked at me and said, “In Mexico it’s not about finding the right place- but it’s about finding the right person. In the US you just need the right place- but in Mexico it’s always about finding the right person.”

So off we go- in search of beautiful places and connecting with the right people!

Baja Bound!

When we got settled in Tucson in 2015 I made a list of all the places I want to travel with our kids before they graduate high school. I know it sounds crazy, but I also know if you don't plan these things out- they don't happen. Two years ago we took our tent and traveled to San Felipe in northern Baja for a long weekend and the kids had an amazing time. We decided that after we moved and settled in we'd try for round two- this time getting to some of the beautiful places in Baja! And here we are! In true Crawford style it has been with some setbacks- including 10 days ago I realized we needed passports for the kids. Long story short you only need birth certificates when you drive to northern Mexico with kids- but if you go further down and need a tourist visa the Mexican government requires passports... I almost thought we'd either wing it and pray no one cared or would find a different place to go. However, I found an office in Tucson that does emergency passports within 14 days of travel for an extra fee- and BOOM! THREE passports! We now have all our visas paid for and printed.

We also have a loose travel itinerary:

BAJA 2019 ITINERARY

Friday March 22 Calexico, US

Saturday 3/23  San Felipe Punta Estrella Carretera Federal Km. 13, San Felípe, B.C., Mexico

Sunday 3/24-Tuesday 3/26 Guerrero Negro Scammon’s Campground

(Between Guerrero Negro and San Ignacio at KM 207 there will be signs on the highway leading South. The road is flat and graded and easy to drive. After driving about 5 KMS you will reach a point where you sign in for entrance to the salt flats. (Note the crusted salt and the lakes of salt water.) Continue for another 20 KMS and veer right as indicated by the signs. Proceed to the gate some 3 KMS further, An easy drive for any size rig.)

Tuesday 3/26-Friday 3/29 Mulege Hacienda De La Habana  

(To find the place turn right on Icehouse Road, head west and follow the signs for RV Park.)

Friday 3/29 Bahia de Los Angeles Vermilion Field Station

Saturday 3/30 San Felipe Punta Estrella Carretera Federal Km. 13, San Felípe, B.C., Mexico

Sunday 3/31 Cross the border and head home

Next up I'll share some of the organizing we are doing because there are couple important facts about this trip:

1. we are sleeping in a tent

2. we are not bringing technology other than the camera on our phones.

Lenten Sacrifices

This year for Lent I decided to give something up that really takes up a lot of my time and energy: Facebook and Instagram. Initially I wasn't sure if I could do it- sounds absurd when I say it out loud- but as the time drew nearer to Ash Wednesday I almost craved the fast. Social media has been a way that I stay connected to loved ones far. I love looking at pictures and reading the stories of my dear friends. I love that it keeps a running memory of all the things I have posted so I can go back and reflect. I have used social media as a way of advocating for change and for creating groups that allow for shared experiences- a place to ask questions and a place to share wisdom. Over the years I found this overflow of information to be sacred and needed- and despite my husband's laughs I have consistently defended social media. Recently I have turned off notifications for a variety of individuals, groups, and events. I suddenly realized I couldn't handle it all anymore. Social media is always a touch a way with my phone in hand. Bored in a checkout line: check facebook. Bored at soccer practice: check facebook. See something amazing that my kids do- or the perfect reflection of light in the desert: take a picture, perfect the words, and post. These little things mean my eyes are constantly gazing at a little screen accessible to me 24 hours a day. I tried the timing restrictions and my phone would remind me screen time was over for the day. Already? How can it be?

As we are training up our now 9 and 10 year old boys and 7 year old daughter we are confronted more than ever before with our phone usage. We plead with them to read books, play outside, create art- and then they look up at us and see us gazing into our phones- from crossword puzzles to reading news articles, to social media- there's always a reason to look at the screen. It seems so much more rewarding than the world around us. The brightly lit screen can help us with our jobs, with our parenting, with knowing what's happening in the world. The screen provides endless blogs with tips on our travels. I can obsess over just about anything and it's always in my back pocket. It's the perfect device for all my inquiries. And believe me, I have a lot of inquiries: What's the weather this week? I wonder who would become the royal King or Queen of England after Prince Charles? What's the best vegan food in Carlsbad? I wonder what colleges have programs for kids with disabilities? Where's the cheapest place to get a camp stove? I wonder when spring try outs for soccer are? Does Lily have a performance this week? I should check the school app.... Literally my questions. never. end.


Lent is a reminder of our depravity. It's a reminder to turn to the Cross of Jesus because of his great sacrifice. Lenten sacrifices allow for reflection and allow for changes in our ways of living to turn towards holiness.

One of things that I do value about social media outlets is the space for reflection. I can post pictures and write stories about the ordinary and beautiful things around me. I love this dearly. With the fast I have been reading a lenten devotional that has been very life giving- but I still want to reflect on life and share the joys around me... so I might return to some blogging.

If you're thinking of a lenten sacrifice but wonder if it's too late to start- it's not! While we walk through Lent we are made keenly aware of our humanity- the ways we fall short- it's a time of reflection, a time for reading, a time for seeking, and a time for praying.

To end, I'll share part of the Lent Project from Biola that I have been reading daily.

Yet today is not just about our mortality but it is a day of repentance – Grant these ashes may be to us a sign of our mortality and penitence…. God we have not loved you with our whole heart, mind and strength… We have not loved our neighbors as ourselves… We have been deaf to your call to serve… We have grieved your Holy Spirit… We confess our past unfaithfulness: the pride, hypocrisy, and impatience of our lives… We confess our self-indulgent appetites and ways… We confess our intemperate love of worldly goods and comforts… We confess our negligence in prayer and worship, our failure to commend the faith that is in us, our blindness to human need and suffering, our prejudice and contempt toward those who differ from us, our….

Restore us, good Lord… Accomplish in us the work of your salvation.. Accept our repentance, O Lord.

Amen.

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.