What to Do When You are Anxious about Your Child

Recently, I went to a seminar on the topic of "The Future of Housing for Autistic Adults".  It was free and being held about five minutes from my house so I thought, why not?  This could be helpful information just to keep in mind as I think about my eleven year old son's long term future and I've got the mental bandwidth today.  Oh, how wrong I was.

As soon as I walked into the auditorium, I realized that I had made a mistake in coming with so little emotional preparation. The anxiety covered the room like a thick layer of peanut butter.  Parents of adult individuals with disabilities had that familiar look of exhaustion and desperation.  The few people that I tried to interact with at the refreshments table seemed to be carrying a thousand pound burden with them.  As the panel began to discuss, things went from bad to worse as the panel members (governmental leaders and activists) ping ponged in their presentation from defensiveness to bitter anger about the current housing situation for adults with developmental disabilities.

I tried to concentrate on the information that I was gleaning from the handouts about the history of housing for the developmentally disabled in our state and understanding the complex system of power and bureaucratic authority in this realm.  However, I couldn't block out the disturbing and disrespectful ways that the people on the stage were interacting with one another.  I found myself upset and, more than anything, anxious.  What does this mean about Josh's future when I can no longer take care of him?  Am I going to have to deal with a broken and dysfunctional governmental system that won't help me to meet his needs?  Am I going to be able to have any service providers that I can trust?  The anxious thoughts swirled around in my head until I finally decided that I needed to get the heck out of there, spilling coffee on my neighbor as I scurried out of my row.

In my almost 12 years of being a mom, I have observed that it is very natural to struggle with anxiety now and then about things having to do with our children.  After all, we have responsibility for these creatures and, whether your child has a disability or not, they all have complex needs and challenges.  The road ahead is fraught with danger and threats.  Our children have weaknesses in their bodies, minds and character.  We worry about what this might mean for them in their future.  To some degree, anxiety causes us to engage, to think ahead and to fuel us to solve problems.  Some might say that anxiety is a blessing.

Yet there are times when we see anxiety for what it is, a way that we say to ourselves, "This dark scenario that I have for the future is too scary,  too big, too bad for anyone to handle, including God."  At the root of anxiety is a belief that God's love for us will not be powerful enough to give us a good future and that we need to be in control.  Ultimately, unchecked anxiety will not be a useful tool but it will rule over us, crushing our peace, joy, and trust for God and other people.  Anxiety feeds on itself and on our anxious behaviors.  It will make  our minds unable to rest, our souls unable to worship freely and our bodies unable to function properly.

Therefore, as a veteran in the battle against anxiety, I would like to share with you some wisdom about how to not let anxiety rule your life.  When you realize that you are gripped by a dark scenario about your (or your child's) future that does not include the hope of God, I suggest the following:

1.     Talk to someone.  Tell someone exactly what is making you anxious.   Don't rehearse it over and over.  Don't chew on it like cud.  Just get it out of the warm, moist environment of your own head and let the antiseptic power of fresh air and sunlight start to do it's job on your anxiety.  If you don't have someone to talk to, journal it out.  Just get it out.

2.     Pray.  It doesn't have to be complicated.  I like Anne Lamott's suggested prayer, "Help!"  If you are too anxious to pray, ask someone else to pray for you.  At the root of prayer is the declaration that we need help and that we are not in control.  This is an excellent place to start.

3.     Give it over to God.  When I am feeling anxious, I often pray with my hands open as a sign that I am giving to God the heavy things that I am holding.  I also find it helpful to name the thing that is burdening me and praying out loud, "God, I give you my fear of ____" or "I want to trust you with ____".  It's helpful to renounce our perceived control over the uncontrollable things of life and to hand it over to God in a specific way.  Another word for this process is "repentance".  This word does not have to do with "burning in hell" as much as "letting go".

4.     Repeat.  Any significant spiritual and emotional process is usually not "one and done" but rather a process of continually relinquishing.  If the anxiety comes back, repeat steps 1-3.

5.    Remember, your child belongs to God.  Go.  Look at your child or a picture of your child.  This gorgeous person was made by God and is, right now, being parented by God.  His love for your child eclipses your own. Your job is to do your best to nurture and provide for this child but you will have limitations . . . big, fat limitations.  Your task is to do the best job that you can do while being a human being.  God gets this.

6.    Commit to living a non-anxious life as much as you can.  Take time to rest.  Take time out of the swirl of life to make simple plans for moving forward.  Feed the your soul with messages of God's love for you.  Today, I did this by cutting some roses from my garden and putting it on my desk just for me.

7.     Locate areas of avoidance and seek out help and accountability.  I find that avoidance and anxiety are dance partners.  For example, I have an ugly, mean ol' stack of papers on my desk right now that I am avoiding (out of the anxiety that I have about them) yet it's presence daily fuels my anxiety.  I have shared about this stack of papers with two friends who are praying for me and supporting me as I try to clean out patterns of avoidance in my life.  I'm taking one step at a time and it's working.

8.   If anxiety is having a long term, immobilizing grip on your life you may need to get help from a professional like your doctor, a therapist or a pastor/ leader of your spiritual community.  If you find that anxiety is affecting your sleep, eating, relationships over time please do not be afraid to address deeper needs of your life with more significant resources.

By the way, I am highly aware that battling anxiety about our children, our lives, our future, anything is not a simple eight step process. It is truly a battle.  But it's a worthy fight.  Don't give in to anxiety. It's a rabbit hole of darkness and you don't want to live there.  We were not meant created to walk in anxiety but in dependent trust in God.  He cares about you and He cares about your children. He has a good future for your life if you can trust in Him with it.

Finally, I would like to remind you that anxiety is not love.  One mom shared with me that after her child got very ill, she stopped sleeping for days embracing vigilance as a sign of her love for her child to the point where she sacrificed her own health.  God spoke to her that she does not need to prove her love for her child or to prove that she's a great mom by giving herself to hyper-vigilant worry.   I've known and prayed for many children who have been very adversely affected by the leakage of their parents' burdensome anxiety.  We don't love our children by being anxious. We love them by trying to walk in spiritual health and freedom.

How are you doing as you battle anxiety in your life?  What are you finding to be helpful?

A Fashion Eye for the Special Needs Guy

It has come to my attention that some of Josh's pants are too short.  How tempting it is to just let that be and ignore it.  I'm not good with hemming and I hate buying new pants.  After all, he doesn't care.  One nice thing about the combination of autism and intellectual disability is that my son is not at all self-conscious about how he looks.  He could wear the same thing everyday, covered with red pasta sauce and paint stains from art class and be absolutely fine.  Remember, this is a child who is okay if every article of his clothing is put on backwards.  He's all too happy to use his shirt, his pants or his hair as a napkin at any meal.   Most days, Josh comes home from school with incredibly, mysteriously messy clothes.  

We are not a high fashion family.  I mostly wear warm fleeces, jeans and clogs; sort of a uniform of a mom who is too tired and frenetic with the day's fat list of things to do to put much attention to her own fashion expression.  My girls are downstream in a very abundant flow of hand me downs so I pretty much never buy them clothes save underwear and tights.  Recently, I've been letting them pick out their own clothes which often results in some very (ahem) creative outfits usually encompassing a combination of orange, red and pink all at once.  

But as I consider my ultra rapidly growing eleven year old boy who is completely dependent on me to determine all of his clothing choices, I wonder, "How important is it for a child with special needs to be well dressed?"  

I am well aware that clothes can become an idolatry and a money pit.  I am amazed and a bit appalled at how much money can be spent on children's clothing, clothing which will be outgrown or permanently stained in seconds.  In our town we have a little mall which houses several boutique children's clothing stores.   In one of them one can find a t-shirt for a 4 year old girl tie-dyed in pink and magenta with bling in the shape of Hello Kitty faces across the front for $59.  I just don't get that. 

However, I remember going to some sort of seminar years ago where a parent on a panel gave a grave warning which basically boiled down to this, "You're kid is going to look odd enough just for being who he is, don't let him look weirder by not paying attention to what he wears."  I thought that this was an excellent point and have tried to remember this as the years have gone by.  Therefore, I am most committed to spending money and attention on clothes for Josh of all of the people in our household.

I know other parents of kids with special needs whose kids have tactile sensitivities which force them to buy clothes from more expensive brands that have extra soft fabric and seamless clothing such as Hanna Anderssen, Soft Clothing or Sweet Lemonade.  I think you have to do what you have to do and pay what you have to pay to get your kids to wear clothes that work for them.  Thankfully, Josh's sensory challenges do not get expressed in this way.  He's willing to wear just about anything that I have him put on. 

Sadly, I have also observed kids in Josh's special education classes who have inappropriately fitting clothes or who smell because they have not bathed often enough.  One special education teacher told me about a child who had been sent home in the same clothes and diaper that she came back in the next morning.  I think that it's just too easy to disregard the appearance or personal hygiene of a child who is not aware of how he or she is being perceived by others or is not able to express what he or she needs.  I get that given the tremendous amount of work to care for with meds, therapies, help with toileting etc. that our kids need, it's very easy to take short cuts when it comes to appearance and grooming but it's still important that we don't.  

My main priority is that Josh's clothes are clean, well fitting and decently in style.  I want to make sure that people take Josh seriously as he's out there in the world.  I feel a little shallow saying this but I want his clothes to communicate that he is a person of great value, presence and dignity.  I know that nice clothes to not make him so but I want others to remember the great worth of my son that might be masked by his disabilities.  

What are your thoughts about kids with disabilities and appearance?  

The Red Vest and Hope for the Future

Have you ever reached a milestone and not even noticed it only to realize that you've been working toward getting there for a really, really long time?  I remember one day in college when I realized that I was no longer putting much of my day's energy into being insecure.  I just stopped in my tracks one day as I walking through "the quad" of my college campus and thought to myself, "Wow.  I used to be so consumed by negative thoughts about myself and now, I'm not . . . so much."  It's like I had been walking, walking, walking toward a certain direction and then when I got there, I turned around and realized that I had walked about five thousand miles.  Sometimes, you just have to stop and celebrate how far you've come.

Today is one of those days in my life of parenting Josh.  It was a normally chaotic school day morning.  Alex was entangled in some sort of high level conflict mediation with the girls so I picked up Daddy's usual mantle of getting Josh out the door to his bus.  I could hear the honk of the bus in front of our house and I thought of the line of cars that was probably beginning to grow behind the little yellow bus so I rushed to get Josh out the door.   Suddenly, I realized that I needed to put the field trip permission slip into Josh's backpack so I started barking orders to my usually very passive son.  "Josh, put your shoes on!  Josh, put on your red vest.  It's cold outside.  C'mon, go, go!  The bus is waiting!"

By the time, I got his permission slip ready to go, Josh had not only put on his shoes and vest, he had zipped it up and was dragging his backpack out toward the bus.  I took one look at him and was smacked in the head with a realization:  Josh had fastened and zipped up the zipper on his red vest all by himself for the first time ever!

You need to know that we have been working on his fine motor skills since he started physical and occupational therapy which was before he could even walk.  Due to low muscle tone and his visual impairment, learning to do every "normal" task whether opening a door to walking up stairs to putting on his underwear is a big project. We have to do a task analysis, get a strategy for training and practice it a million times.

Josh has been working on zippers and snaps and buttons for at least 8 years now to no avail.  Not only are these things very difficult for his clumsy little fingers, he's just not motivated to do them and (with his visual impairment) it's difficult for him to see little things like zippers well enough to manage them.  He doesn't care that "big boys" can do these things by themselves.  To this day, he just wiggles his jeans down when he needs to go to the bathroom rather than unsnapping and unzipping because he can't manage the snaps or buttons.

Honestly, I never thought he would be someone who could zip up his own jacket without help.  I just imagined a life of helping him with these things.  Yet here he was zipping up HIS VERY OWN VEST!  My mama-pride knew no bounds!  Despite the waiting school bus and the long line of waiting cars behind it, I could not resist taking a moment to snap this photo.  I almost wanted to go up to every car waiting behind that bus and tell each of them, "Hey guess what? My son zipped up his own vest today!"

Josh's sudden ability to zip up his own vest gives me immeasurable hope for the future.  If he can master this, maybe someday he can he could fully go number two all by himself, wiping and all!  The thought of saying to my son, "Hey Josh, go take a shower" and having him be able to do the whole thing by himself makes me giddy with joy!  Better yet, what if he could discern for himself that he needed a shower and then took responsibility for his own personal hygiene?  This is crazy but why not?

After all, despite long, long seasons of non-growth, suddenly things can change and people do move forward.  Sometimes it takes forever but anyone can learn and grow.  And when growth happens we have to mark it, celebrate it and take it as a gift of hope that there are more good things to come for the future.

Mama's a Liar

The other day, Josh came home with a hankering for dried mangoes. He was  determined to find our massive Costco sized bag of sticky, sugary dried fruit in our cupboard and was requesting my help assertively and repetitively.  "Want dried mango. Want dried mango.  Want dried mango."  I think he must have said it around 20 times.

I replied, "Josh, it's all gone.  No more dried mango.  Here, let me cut you an apple."

"Want dried mango."  Josh said one last time for good measure.

Because Josh is a pretty compliant kid, he sat down at the kitchen table and started working on the apple slices.  I went into the den to get something and by the time I came back to our kitchen, I found that Josh had been rummaging through our cupboard with the snacks in it.  Despite having intellectual disability and visual impairment, Josh found the one little Tupperware container that had dried mangoes in it amidst the chaotic piles of little filled Tupperware which I had prepped to be thrown into lunch boxes.

Observing what had happened, my amused, sarcastic husband said, "Josh, your Mama's a liar."

Much to my chagrin, periodically throughout the next couple of days, Josh would randomly say, "Mama's a liar.  Mama's a liar."

I'm not sure what this means.  It could just be that he likes the sound of that phrase.  He used to walk around saying "Wocket in your pocket" over and over again.  Or he has certain phrases that he makes up like "Wysssse gooooch" which he likes to repeat softly to himself.   Who knows why?

A small part of me wonders if Josh is letting me know that I can't fool him as much as I think I can.  It's like he's saying, "I may have intellectual disability, Mom, but I'm not stupid."

It's easy to think that you can fool him because he's not the most aware kid on this planet.  You give him head phones and a magnadoodle and it appears that the world could end and he'd still be happy, drawing a shower head or a hairdryer over and over again.

I actually appreciate this about him on some days.  Unlike certain other highly verbal children in our household, Josh is usually pretty relaxing to be around.  Alex and I can have adult conversations around Josh without being bombarded with questions every five seconds.  Sometimes it's kind of nice being around a child who is firmly, and usually, happily in his own world.

But I am realizing that this doesn't mean that I can cut corners and tell Josh that we don't have something when we actually do.  Josh is becoming a person who has more drive and initiative than I have ever imagined.  With things that matter to him, he's not just going to roll over and accept what I say but search things out for himself.  Given the reality that Josh is eleven years old, this seems appropriate and even beautiful.  In my heart of hearts, I don't mind this at all.

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.