Lipstick

How could I refuse?  The father of the kid who was hosting my girls for a play date offered to make me a fresh cappuccino on his shiny, new machine that appeared to do hundreds of beautiful things with coffee. They were all hanging out in their driveway with another family who was visiting them when I drove up to pick up my girls.  The father introduced me to his friends as "the mom of the family that we were just telling you about, some of our favorite people!" Dinner was already in the crock pot at home.  We had only one errand left and plenty of time to do it.

"Sure!  I'd love it!  Thank you."  I accepted his offer with gusto and gratefulness.

I looked back at my van at the bottom of their driveway.  I could see from the window that Josh was happily listening to music on headphones.  I left the side door open just in case he needed something or got unhappy.  My girls were elated to have a few more minutes to play with their friend.  The visiting family had just moved to my home town in Oregon so we had a lively conversation about favorite restaurants and pubs in the Portland metropolitan area.  It also turned out that this couple had gone to the college with my husband.  A few minutes turned into forty five with the assistance of a second coffee drink, the sharing of humorous anecdotes and happily occupied children.

Finally, I got my girls and my well-caffeinated, socially satiated self back into my van and headed to the library.  As I unloaded my three children, I realized that the contents of my purse were scattered all over the floor of the back half of my van.  As I picked everything up, I saw that one of my lipsticks had been opened and the contents almost completely missing.  Someone had eaten it like it was a soft, shimmery piece of candy.

I looked at my eldest child and saw that he had Estee Lauder #61 Pink Parfait all over his face and hands.

"Josh!  Did you eat my lipstick?"  I demanded, beginning to panic.

"Yes."  Josh responded, without shame or affect.

"Joshua.  We do not eat lipstick!  Mommy says, 'No eating lipstick!'  What is wrong with you?"  I began to rant at my child who had very little capacity to receive my lecture.

Josh must have been searching for gum or candy in my purse while he was waiting for us to finish our little bonus time in the driveway.  My lipstick was almost new so it looked like he had ingested quite a bit of it.  I had the faint memory of hearing something on the radio recently about how make up was actually toxic.  I was so frustrated with the thought that Josh's habit of eating non-food items was back.

And then I blurted words that should not come into a Mom's head much less out of her mouth.  "God, Joshua!  Why are you so weird?!"

The girls immediately jumped to Josh's defense.

"Well, you might look like you are eating it when you are putting it on, Mommy." said one of them.

"Mommy, that is not a very nice thing to say." said the other, perfectly embodying a corrective tone which I am sure that she picked up from me.  "We don't say things like that."

They were completely right but I wasn't ready to repent.  I was feeling too scared that Josh was going to die and too guilty that I had left him in the car for so long while I had indulged in spontaneous coffee and adult conversation.

I sent the girls ahead to go look for books in the library while I called poison control.  Of course, once I got through to poison control, they put me on hold for about a century.  I put on my headset, wiped off my son's face and scooted him into the library while I waited to talk to a real live person on the phone.  The girls had almost finished checking out a huge pile of books and DVDs each when the person came on the phone.  I explained our situation and asked him what I should expect.  The man told me that, although he doesn't recommend eating an entire lipstick in one sitting, Josh was not likely to have immediate dire consequences.

"The worst thing that you can probably expect is some diarrhea."

Just as the man from poison control was saying this, I looked over and saw that Josh had his hands on either side of a desk.  His back was bent forward ever so slightly and he appeared to be bearing down and pushing.

"Oh my God.  Girls!  Time to go!  Come on, Come on!  Josh, do you need to go to the bathroom?  Are you pooping?"

"No." He said, simply, with no understanding of why I was such a basket case.  He then calmly walked out and found his way to the car, sat down, and buckled himself in.

"Want music."  He said, as if to change the subject.

When the girls had landed in their seats, I took a deep breath and apologized to them about my inappropriate outburst and asked if we could just take a moment before we moved on.  They were already buried in their fresh books.  Josh was calm and happy with the radio on.

I held my head in my hands and poured out my fears, frustrations and guilt to God.  I desperately needed to come down off of the happenings of the past hour.  I asked if He would speak to me and give me some perspective on the situation.

Do you know what I felt like God said?

"Look at your purse."

"O-kay"

 I looked at my hot mess of a purse and this is what I saw:

-lots of Kleenex and napkins both old and new
-6 pens
-4 small toys
-many loose, crumbling M & Ms
-my wallet, bursting with random papers and receipts
-more random papers and receipts loosely floating around
-several small pieces of children's art work
-several plastic items of no discernible identity or origin
-12 lipsticks

Yes, I counted twelve lipsticks or lip glosses in my purse.  And I'm not even a person who wears much lipstick!  Why do I have so much lipstick and, for that matter, all the rest of the stuff?  Because I'm just someone who has an absolute inability to clean out my purse.  It's one of those random, weird things about me.  Try as I might to have an ordered life, you can pretty much be sure that my purse and my desk are going to be utterly chaotic at all times.

Driving home, I realized that the interpretation to the parable of my purse is that we are all weird in unique ways, big and small.  We all have parts of us, our personalities, our choices, things that we do which are inexplicable, idiosyncratic, useless and even counterproductive.  Oftentimes, we are blind to our own oddness.  But part of the meaning of family and friendship is that we love and accept one another despite our unique weirdness.

Why is my son so weird?  Today, that is not the right question.  The right question is "Am I going to love and accept him for who he is, weird behavior and all?"  What helps me to answer that question is another question.  "Do I realize that I am fully loved and accepted for who I am in all of my own weirdness?"

Going to See Movies with Josh

Josh has seen exactly three movies in a theatre in his life. The first time was about 2 years ago when we saw The Muppets.  We brought an extra adult with us and we armed ourselves with a very expensive amount of popcorn and other snacks.  Still, Josh was overwhelmed and melted down.   Alex had to take him out to the lobby and even go for a long walk in the parking lot, missing most of the movie.  

The second time was about 6 months ago when I took the girls, Josh, and a trained autism therapist to a  viewing of the movie Planes.  Our local theatre hosts monthly "sensory friendly" viewings of films where the auditoriums have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing.  It felt like a big risk to try it again but, what the heck, we live in America and kids in America go see movies.  Alex and I love movies and wouldn't it be great to be able to go to them with our whole family sometime?  I really wanted to try it again.  It felt like we were "in training" for Josh to be able to gain the sensory muscles to go see a movie.  

Shockingly, it was a great success.  Josh not only sat through the entire film but he was happy and "sang" along and clapped at various times as well.  He ate a huge bag of popcorn during the show but that was fine with me.  He actually was more calm than his two sisters, who sat on either side of me, gripping one of my arms with ferocious desperation and breaking down into sobs because of the intensity of the surround sound music and some of the tension points of the story.  They pulled it together well afterwards and now they claim that they loved Planes and talk about it fondly, as if seeing it had been a wholly pleasant experience for them.

My girls really wanted to see the new Disney movie, Frozen, during this holiday break.  At first, I planned to leave Josh at home with his dad, not wanting to deal with the energy that it takes to plan to attend something with Josh.  But at the last minute, we decided to just go for it and see it as a whole family. My niece and my mom came with us so I felt fortified in terms of adult resources in case anything went wrong.

At first, Josh was clearly anxious.  He did not want to go in and, once we sat down, held my hand tightly as if he was afraid that I might leave him alone in the dark theatre.  But once the movie started, Josh started to relax. He clearly enjoyed the musical numbers within the film (there were many).  He started to smile and giggle and remained relaxed through out the entire show.  He vocalized and clapped a little bit but was willing to quiet down quickly at my whispered encouragements.  I also handed him a tangerine every time he started talking and he was happily distracted.  Strangely, he declined to have any popcorn today.  At the end, he didn't want to leave until the credits (and music that accompanied the credits) were over.  

My son has come so far in his abilities to manage sensory input.  As a younger child, the world seemed to be a place full of auditory and visual threats.  Josh succumbed to panic, tantrums, and melt downs so much more than he does now.  I am so proud of him and I want the world to know that Josh is maturing, even within his own autistic world.  It seems odd to call "going to the movies" a risk but, for us, it is.  And if we had never taken this risk today, we would never know how Josh is growing up into a guy who can handle so much more than I ever imagined.  

Disney Magic Interrupted

I've noticed that the magic moments in life are only magical if they are framed and taken out of the greater context.  For example, this photo of my daughter Hope and me captures a truly "Disneyland magical moment".  Leaving sister Anna and Daddy on Main Street to nab a good viewing spot for fireworks, Hope and I raced to the back of Fantasyland to take in the "It's a Small World" ride.  The day we had chosen to be at Disneyland happened to be the first day of the month-and-half long holiday season in the Magic Kingdom so Small World was decked out in holiday lights and featured some special outside shows while you wait.  Our expected 25 minute wait was cut short when they opened a new loading line, allowing us to get right onto the coveted front seats after standing in line for only about 5 minutes. Yes!  Hope had already been on this ride earlier in the day with her dad so her fear of the unknown had melted away and her enjoyment of the ride was exponentially greater.  She jabbered on throughout the whole time guiding me through all of her favorite parts.  (It turned out that every room was her favorite room.)  As we snuggled together and took in the sights, Hope sighed and said, "I love you, Mommy."  It was a scene straight out of parenting heaven or a Disney advertisement.

Soon after we exited Small World, the fireworks started.  We watched them from where we were, which was not a bad location, although not the supremely desired "right in front of Sleeping Beauty's castle" spot.  It was Hope's first time actually seeing live fireworks as we've never let our kids stay up long enough to watch them in July.  They were pretty marvelous to behold, filling us with a sense of awe, beauty, power and just the right amount of fear, sort of like a really good experience of God.  As the fireworks show came to an end, the Small World mall starts to "snow" little snowflakes made of some sort of soap-like substance as the song "White Christmas" and the sound of jingle bells were heard throughout the park.  Hope was absolutely elated, her delight expressing itself in a twirly dance as she caught the little white bits of joy her hands.

Magical, right?

Yes, except for the fact that a few hours before this magic moment, I almost threw up in the midst of an  everlasting, claustrophobic line of people at the Jungle Cruise attraction and had to lay on a bench on Main Street in the fetal position for 2 hours while Alex and the girls went around together.  Alex, Hope, and Anna had had a bout of stomach flu or food poisoning a few days before our trip and, while it looked like they had completely recovered (enough to down several hand dipped corn dogs each), I feared that maybe it was my turn to have a tummy problem.

Disneyland is not for the faint of heart.  It seems that moments of irritation, being overwhelmed and snapping at the ones you love are givens at some point in a long day in the Magic Kingdom.  During my fetal position rest time, I overheard many a parent completely losing it on their beloved children.  I heard many a child having complete thermonuclear meltdowns even though they had been given $15 balloons to hold and larger than life sugar-based snacks.  Disneyland may be called "the happiest place on earth" but it's also a place where the dark side of the human heart leeks out at some point or another.  We were not immune to that reality.

And the clincher was getting a text message while I was watching Hope dance in the manufactured snow from Josh's caregiver (back at home) that Josh was spiking a fever.  Subsequent texts and phone calls confirmed that not only did he have a fever but he was throwing up as well.  As I've written in previous blogposts, this can mean emergency hospitalization for Josh if he is not able to keep his meds down.  I immediately knew that it was not an option to let my carefully organized "Josh care team" deal with this level of complexity without me there so I caught the first flight that I could and returned home the next morning.  I left Alex to shepherd the girls through the second day of our Disney adventure.

A part of me is tempted to say to God, "Really?  It seemed like such a good thing to take this vacation with just the girls.  I thought through this trip from about a billion angles.  I spent about 50 hours prepping for this trip.  There are seven pages of instructions that I typed out and posted on my fridge for people to use as they take care of Josh.  Of all of the days that Josh could have a fever and throw up, he has to do it at the end of our first of two days at Disneyland?"

But you know what helped my heart?  I came home to this.

My deep thought of the day is that if you want to experience joy and wonder, you can't expect it to come on a full day of complete perfection and happiness.  You have to accept that it will be a 3-7 minute snapshot in the midst of the realities of normal life.  It will be a twirly dance in magical snow an hour after laying on a bench in the fetal position and a few minutes before hearing that your other child is seriously ill and you need to get your butt onto the next flight home.  That's how most moments of joy comes in this world, in small packages.  If you focus on the negative stuff, you will never savor the good stuff.

I don't know the full meaning of why our vacation went the way it did but I do know this:  I love this boy and I would do anything for him.  I'm glad that I came home and we are having a quiet, restful day together.  The fever and vomiting are gone but he's clearly tired and needy.  I'm feeling tired and needy too and I'm not sure I would have been able to keep up with Alex and the girls on this second day given where my stomach is at.  Snuggling with Josh on my bed is also a magic moment and it's the one I've been given for now.

Clipping Nails and Trusting God

"Today's the day," Alex announced as we were getting ready for school.  "It's time to cut Joshie's nails."

My daughters and I groaned in unison.  We all hate it when this has to happen.  When we engage in the massive challenge that is cutting my son's fingernails, we have to shut all of our doors and windows first because he screams like we were torturing him. I have thought about visiting our neighbors and interpreting for them what is going on so they don't call Child Protective Services but I figure, they already know Josh and have heard plenty of his strange sounds.

This is a child swallows 12 pills every day, gets an intramuscular shot every morning, gets a blood draw done every month and handles all of these things maturely and peacefully, like they are just a fact of life.  When we go to the pediatrician's office to get flu shots, it's my autistic child that I am least worried about.  Josh obeys my requests better than any other child that I am currently parenting.  He even sometimes does his chores without my having to ask!  Generally, these days, Josh is a sweet, compliant kid until we take out the nail clippers.  Though legally blind, Josh can see the little silvery tool from a mile way and he immediately starts yelling "NO! NO! NO! NO! NO!" Suddenly we become evil, untrustworthy parents who are intentionally trying to inflict great pain on our child.

But what can we do?

The thing is, Josh's nails grow faster than any one's in our household.  Maybe it's the growth hormone shot that he gets every day.  You blink and his nails look like Marilyn Manson's.  

Also, Josh has no qualms with putting his hands anywhere then into his mouth or nose.  Josh went through a season where he loved to caress public garbage cans (where he would find pre-chewed gum stuck to those garbage cans and stick it in his mouth).  A few months ago, Josh and I were walking to pick my girls up from their school.  As we walked across a grassy area, and as I was distracted by chatting with another parent that I knew,  he felt that he needed to scratch his groin so he just pulled his pants and underwear down and did what needed to be done.  By the time I reached him and quickly pulled his pants back up, he had already moved on to picking his nose.  He's a strange kid but I love him.  

I have Josh wash his hands a lot but suffice it to say that keeping Josh's nails trimmed is part of what we have to do to minimize the grossness of our lives and of our household.  

And let me tell you that we've tried it all: cutting his nails while he sleeps, clipping after long bath, promising great, sugary rewards. Nothing works.  At some point, we have to bite the bullet and cut his nails.

Now, the level of strategy that this endeavor entails might rival any NFL game or great, historic battle.  First we discern which room in our house has the best light.  Then, my 6 foot 3 inch tall husband has to put his strength into holding him down without hurting him while I try to cut with speed, agility and accuracy.  Josh is 107 pounds now so he's quite strong.  Alex and I end up often sweating, usually swearing.  Sometimes we go the extra mile and do the toes but the priority is the fingernails.

Hope usually ends up weeping because defending her brother is one of the strongest impulses in her 7 year old life.  She knows that we are not hurting him but she can't bear to hear him scream.  When Josh's screaming gets really bad, Hope gives us the stink eye and tells us that we are bad parents.  Anna goes into another room and buries her head into a book.  I picture my girls having to debrief this scene with a therapist years from now.  I'm just trying to do what's good and healthy for my son but it just creating so much tension and conflict for everyone.  

Sometimes I wonder if this is what God experiences with me when he is trying to wrestle me into some sort of cleansing or pruning.  As I look back on my life, there are so many things that God has had to regularly strip me of so that I can have a healthier life.  Toxic relationships have had to be severed.  Bad patterns of negative self talk has had to be regularly clipped off.  Addictions have had to be cleaned up.  I know that, were it not for God's loving intervention, parts of my life and soul would be blacker and grosser than the inside of Josh's nails when it's way past time for clipping.

And how have I responded?  Sometimes, I feel like I writhe and scream as much as Josh does.  I yell at God that it's going to hurt. I ask why He is doing this and I accuse him of being a bad, bad God for doing these things to me.  Unexpected transitions, unmet expectations, aberrations from the usual societal norms, these things have all felt scary and threatening to my human sense of what is safe and okay.  Yet there are times when God has drawn near, held me down and said, "Sweetie, it's time.  We're going to do some cleaning up today because I love you and I want good for you."

Strangely, this morning we experienced a true miracle.  Alex got out the clippers and Josh remained calm.  It was clearly still hard for him.  He still tensed up when we started but, as the picture above shows, it was the first time in years that clipping nails was a one parent job.  There was no screaming, kicking or having to hold him down.  He just sat in a chair like a normal person and waited until the unpleasant task was finished.  It feels like Josh just woke up one day and decided to trust us.

I wish I could experience this type of miracle in my own heart towards God.  When God does something in my life that I don't understand or that I fear, I want to experience a supernatural, miraculous ability to trust that He has my good in mind and that He loves me.  I want to stay calm where I used to resist.  I want to be able to sit still and let my Father who loves me come close to me and help me with my personal spiritual hygiene, no matter how yucky or intimidating things may be.  

Feeling Secure

A few weeks ago the kids and I happened to visit a park in town that we hadn't been to in a while.  To our surprise, the city had replaced one of their regular swings with an adaptive swing, one intended to give more support to a child, likely one with some sort of special needs.  Josh found his way into it and immediately started smiling and laughing.

His sister pushed him for a while and when she stopped, Josh said, "Want more push."  Between his two sisters and I, we must have pushed him on that swing for at least 30 minutes.  Each time we stopped, Josh asked, "Want more.  Want more." He requested with such a sweet cackle/ giggle that we couldn't say no.  We were pushing him higher than he's ever swung before and he was just loving it, laughing loudly like a lunatic the whole time.  

When we finally stopped to rest, I realized that, while Josh loved swinging when he was younger, he hasn't been a fan of playing on swings for quite a long time.  We have a park near our house that only has regular swings and he never wants to be on it, preferring to sit in the sand and watching the sand pour through his fingers instead.  It's been years since I've pushed this kid on a swing.

Why, then. did Josh want to swing on this swing so much?  And why was it making him so darned happy?  Why was he willing to take a risk to let us swing him so high?  It dawned on me that, due to the shape and design of this adaptive swing, Josh felt secure in it.  He is quite sensory seeking so he loved the proprioceptive input that he got from a swing. However, because of his low tone and poor core muscles, I think that he feels insecure about being swung and having to hang on for himself.  But with the extra support of this adaptive equipment, he could relax and just give himself to the experience of swinging.

This observation made me think about how there might be other ways that Josh might be willing to take new risks if he had more support, specifically, a better sense of feeling secure.  Might Josh be willing to roller skate some day if we figured out a situation that worked for him?  The very thought of it makes me laugh out loud!

I also found myself thinking about some of the ways that I might be willing to take new risks or enjoy a certain activity if I had more support in some way that I feel insecure.  For example, might I do more writing if I had the equivalent of an "adaptive swing" in my life?  Could I fly higher in some way, laughing as I went, asking God or my community or a mentor that I "want more push"?

How about you?  Is there some way that you have been avoiding something wonderful because you feel insecure?  How might you seek out an "adaptive swing" experience?

Josh Has a Friend

Never, in his 11 years of life, has my son been even remotely interested in having a friend.  Josh has always been more of a "parallel play" kind of kid rather than someone who could relationally interact with his peers.  Actually, Josh doesn't really "play" in the traditional, imaginative sense so it's always been more of a question of whether he'd tolerate being around other children. On any given day, it's hit or miss whether he can even name which of his sisters is Hope and which is Anna.

Of course, Josh has lots of people in his life.  Thanks to his school, our church, our extended family and a gazillion therapists and service providers, there are tons of people who appreciate Josh, care for him deeply and work for his growth.  He is very bonded to his dad and me.  When he is hurt of upset, he will say, "I want Mama."  When he wants to snuggle, he will ask for his dad.

But he has never had a friend. . . until now.  Sort of.

This morning, as I was helping Josh into his seat on the school bus, I realized that he always chooses to sit next to Vincent, who is a 7th grader in Josh's special education home room class. There are plenty of empty seats and even empty rows but he always finds this same kid, sits down, and waits for me to help him with his seat belt.  Maybe he feels safer with Vincent than with the other kids, knowing that Vincent is less likely to make random sounds that are sensorily challenging for Josh?  Maybe he just likes Vincent.  I don't know.

I don't know his official diagnosis but Vincent seems like he's also an autism spectrum kid but with more verbal skills and physical agility than Josh.  The other day, when Josh plopped down next to him, Vincent put his arm around Josh and said to me, "Josh my friend."  This both made my day and made me want to cry at the same time.

Yesterday, I observed their class while they were doing some outdoor play in the grass near their classroom for a quick break.  Several of the boys were kicking a ball around.  Vincent kept insisting on kicking the ball to Josh despite Josh's complete disinterest in receiving, kicking or chasing the ball.  Josh was more engaged in flicking his fingers in front of him and making humming noises but this didn't deter Vincent one bit.

 "Josh! Josh!  Here, Josh!" Vincent enthusiastically exclaimed, requesting, but not necessarily needing, reciprocity.

Noticing this small sprout of a "friendship" between Josh and this other boy, who is a peer, touches me.  I've always been sad at the thought of Josh not being able to develop friendships in a traditional way as, in my world, friendships are one of life's great pleasures and God's great mercies.  To me, life feels barren without the sense of being seen, liked, chosen, and enjoyed by someone who is like ourselves in many ways.

What does it mean for a child who has autism and intellectual disability to experience friendship?  I don't know but, today, I feel filled with hope by seeing this little connection.

Vacationing Without Josh

My husband and I were standing at the beach with our arms around each other watching dolphins frolic in the water.  Our girls were entertaining themselves for the seriously long time, playing nicely together as if they always behaved like sisters who are best friends.  There was just enough sun and breeze to make you feel alive and alert.  It was a marvelously beautiful day.

Alex let out a mournful, guilty sigh.

"What's wrong?" I asked him.

"I feel relaxed," he said sadly, looking like a big dog who had eaten the Sunday roast but knew enough to feel conflicted about it.

I knew what he meant.  It was the first time we had ever done a special family day trip without Josh and it was so nice.  One on one parenting is a heck of a lot easier than the zone defense that we have to use when we have Josh.  It's usually, "You take the girls.  I'll take Josh."  The girls are easier to herd together and Josh needs the full attention of one adult.  Talking to each other when we are anywhere with our three kids is almost always out of the question.

We were taking a day at the beach with just the girls because Josh had summer day camp that week but the girls did not.  Alex has Mondays off so we took a traffic-free drive to the beach, played at the beach for several hours, had a lovely lunch together then went strawberry u-picking.  There were hardly any ripe strawberries but it didn't matter because the girls had fun running up and down the fields while Alex and I took in the landscape and caught up about life.

How can having such a lovely, restful day make us feel so bad?

Because part of why we were able to relax was that Josh was not with us and this felt strange.

We were not constantly worried that a nearby child's cry would set our son off in a tantrum.  We were not watching to see if he ate sand or other non-food items.  We were not worried about him suddenly declaring that he had to go to the bathroom and us needing to find one OR ELSE.  We had come to this place not making any mental notes about where the nearest hospital was just in case he had a medical emergency.

No, we were just with two typically developing, fully toilet trained, children who could occupy themselves through imaginative play and reading books.  They were not guaranteed to be well behaved at all times but you could at least reason with them.  Typically developing children have a much wider array of things that you can threaten or bribe them with.  This is useful on vacations.

Being with just Hope and Anna felt so easy compared to being with all three of them.  Alex and I found ourselves surprised by our ability to wind down, even with our two exuberant, chatter-bunnies in tow.  At least they were joyful, self-entertained bunnies.

A few years ago I met with a woman who has an adult son with autism.  When I solicited her advice for long term family survival, she told me one thing:  take vacations without your child with special needs now and then.  I smiled, nodded politely and thought to myself, "No way am I ever going to do that."

The thought of going away and enjoying family time without the child who needs me the most was unfathomable.  How could I truly rest knowing else that someone else was watching Josh?  We do date nights without our kids and even overnights sometimes but it seemed so strange to have "family" time without Josh.  What would that be saying about his presence and role in our family?  That he wasn't welcome?  Or truly one of us? That he was too much work to be included?

Well, now that Josh is 11, I have reached the point of seeing where my friend was coming from.  This fall, the girls have asked that we go to Disneyland (for the first time) rather than having birthday parties.  Realizing that Disneyland would be an overstimulating hell for Josh (and that he'd be saying, "I want car" within the first expensive hour) we have decided that we are going to go without Josh.  I am going to embark on the gargantuan task of arranging childcare and training a number of different people in our community to be with Josh so that the rest of us can be gone for 4 days.

And what are we saying in making this choice?  I am saying that it is okay, even good, for us to have family time without Josh sometimes, especially if we are going to do something that he would not enjoy anyhow. Beyond that, I am realizing that doing well in the long marathon of raising Josh means taking respite times away from him, as in individual parent, as a couple, and as a family.  This is a tough and unexpected part of the journey but I feel that I'm being led forward by a sense of peace and conviction. I'll let you know how it goes.