Grace and Stress: A Day in the Life of a Mom

Sometimes I feel like my life is so chock full of moments of profound grace sprinkled with immense stress that I can't process either one.  Today was an especially demanding, full day because my husband is out of town so I'm single parenting this week.  Here is a brief description of the mixture of grace and stress in one day.

6:33 am       I wake up to a small, formerly unfriendly dog licking my toes.  We are dog sitting Frankie who was very anxious when his owners dropped him off.  I guess sleeping at the foot of my bed has made him decide that I am worth his affection.  This is a small but welcome little grace.   I get up out of bed to let Frankie out for his morning pee.

6:58 am       I discover that Frankie has elected to take his morning poo on the carpet immediately outside of our family bathroom.  The poops are lined up very neatly, almost like Morse code.  Is he trying to tell me something?  I fly into a whirlwind of deep cleaning my carpet with a variety of chemical cleaners and two different vacuums.  Stress.

7:30 am       I coax my the girls out of bed and encourage them to get ready for the day.  They are unusually compliant.  Small but significant grace.  We need to leave the house by 8:10 so I can drop the girls off at their respective summer day camps and get Josh to his doctor's appointment.

7:45 am     I pull Josh out of bed and he is one grumpy pre-teen.  He is standing at the toilet screaming the words which I usually say to him every morning, "Aim for the middle, Josh!  Aim for the middle!" He is not aiming for the middle.  The combination of autism and visual impairment usually means that I have to clean the bathroom after every morning pee.  Today is no exception.   Stress.

8:25 am       We finally pull out of our driveway after 7 separate trips back into the house to bring out various forgotten items which are necessary for the day; sunscreen, swimsuit, snack, can of pink hair color spray.  Stress.

9:18 am    Josh and I arrive at his endocrinology appointment only three minutes late.  This is a minor miracle.  Despite my having made the appointment as early as I could in the day, they are already running late.  Clearly, these people do not understand that most autistic children are seriously not good at waiting.  Josh inhales all of the snacks that I have brought with me and has moved on to wanting to eat breath mints, the only food-like items left in my purse.  I let my son eat 13 vanilla mints, spaced out for as long as I could.  Josh and I spend some time taking selfies on my phone.  Finally, an administrator walks into our room to try to work out a complication that we are having getting Josh's growth hormone covered by insurance. Without coverage, growth hormone is several thousand dollars per month.  This lady talks to me with a mix of cloyingly sweet words and a strong undercurrent of hostility and blame. She reminds me three separate times that this complication is due to my missing an appointment six months ago.  She also tells me that I should be grateful because other patients of hers have it much worse.  Stress.  I resist the urge to talk back to her with full snark or to slap her upside the head. Grace.

10:52 am     I meet up with Josh's summer school class at at the Magical Bridge Playground where they are on a field trip.  This is a place that has just opened in our town after a number of moms with special needs kids raised many millions of dollars.  It's an amazing, inspirational, inclusive space that is designed to help kids of all abilities to play alongside typically developing kids.  Today, there is some sort of event going on with a band, free pizza and about 50 kids with special needs and their caregivers having a blast.  I drop off Josh and watch him head to his favorite sensorily safe play structure.  The kids in his class are excited that Josh has arrived and head toward him to greet him with high gives.  Big grace.

11:11 am   I arrive at my work place only eleven minutes late for our staff meeting.  My colleagues greet me with friendly, empathetic faces.  I love my job.  I love that I have a place to work and belong that uses parts of my brain that have nothing to do with taking care of children or managing their needs.  After eight years of being a full time mom, I have recently started to work part time.  I cannot express what a blessed grace this is to me.

7:54 pm    The children have been picked up from their various camps, fed, and bathed.  Medications have been given.  At evening prayer time I have to tell the girls the news that the dog of some dear family friends was hit by a car yesterday and died.  Molly was the first dog that has ever stayed with us.  She was our introduction to becoming dog lovers and dog sitters.  Hope and Anna respond with loud wailing and big, fat droplets of tears.  I imagine that this is how the wailers at funerals in the biblical times sounded except that, I think a lot of those folks where hired.  My daughters' sadness comes straight from the heart.  Out of our lamentation comes a conversation about heaven, grief and the purpose of pets in our lives.  During our prayer time, while I am praying, one of them starts to make vague whispering noises.  When we stop to ask her what she was doing she tells us that she was "praying in tongues" because someone has told her that sometimes he prayed in tongues when he was overwhelmed by a situation and didn't have the words to pray but still wanted to pray.  We decide that this was fine.  In that moment, I conclude for the millionth time that parenting is wonderful and worth all of the nonsense.

8:52 pm     I have my first moment alone all day.  I am thinking about how life is so full of  beauty, ugliness, life, death, kindness, rudeness, stress and grace all in a big, fat jumble.  Contrary to what reading Facebook might make you think, life is not a constant stream of joyful, sweet, picturesque, insightful moments.  It's more of a tangle of the good, the bad and the mind numbingly boring stuff in between.  But I thank God for His gift of reflection for it is one of the things in life that help us to digest it and make sense of it all  it.  As I process and pray about my day, Grace wins over stress.

The Purpose of a Flower

“In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here?  Can’t you get busy some way?” and then finds himself unable to understand the flower’s response:  “I’m sorry, sir, but I am just here to be beautiful.”    

                                                                        Henri J.M. Nouwen    Creative Ministry

When my son is being slow I find myself so easily frustrated.  Sometimes it takes him forever to get out of the car or to decide that he’s done at the toilet.  The busy mom in me, who is always aware of the millions of other things that I need to get done that minute, is tempted to blurt out, “Josh, why can’t you go faster!?”

Life with Josh is never expeditiously productive.  Josh doesn’t think very quickly.  His body doesn’t decide to do things very easily.  Communication with Josh is like being at a coffee shop with intermittent wi-fi. 

Usually, at the zenith of my impatience, I find that God gets my attention.  He often plants a question in my mind like, “Why do you need Josh to be more effective and efficient?”   I am guessing that it has more to do with how I feel about myself and about my life than a true assessment of what my son is able to do in that moment.

I also begin to realize that my son was not created to be fast.  Josh will never be a resident in the realm of high productivity or immediate transformation.  

Josh is here on this planet to be a parable about a different way.  His purpose is to make people slow down, even to stop for a bit.  His impact will be on those who are willing to pause and rethink our assumptions about how things have to be.

The other day Josh walked out of the house loudly munching on a zucchini like it was an apple.  I had a knee-jerk response to rebuke him.  “No, Josh, we don’t eat uncooked zucchinis!”

One of my girls asked, “Why not, Mom?”

You know what?  I did not have an answer.  Yes, it was unwashed but that isn’t the biggest deal in the world.  Why can’t you eat a raw zucchini if you want to?  I have eaten them diced into salads before.  There is nothing inherent in a zucchini that necessitates cooking.  If my child is happy to eat a vegetable, without my forcing him to, why would I stop him?

“Well . . .  go ahead, Josh.” 

I put my unemptied grocery bag and armful of jackets down and sat on the bench in front of my house and watched him eat the whole zucchini with great gusto like it was a sweet, juicy peach.  Upon finishing, stems and all, he looked very satisfied and amused.  He started clapping and humming, choosing this moment to have a little celebration.  Watching Josh quieted my spirit.  I smiled, knowing that Josh had been placed in my life just to be beautiful. 

I Don't Know How She Does It

I'm a busy girl.  This is a photo of one month on my dayplanner.  Scary, isn't it?  My husband calls it "scheduling in tongues" because it looks completely incomprehensible without supernatural interpretation.  We do use online scheduling tools and calendars as well but I still can't part with my trusty paper dayplanner to be the central management center for all of my miscellaneous appointments, to dos, and events.  And there are many.  Many.  Many.

For instance, in the month of March, Josh had 5 doctors appointments, 8 autism therapy appointments, 5 adaptive swim lessons, 2 med adjustments, 3 blood draws, 3 special consultations and 24 hours of respite care divided up into 5 sessions.  Many of these appointments were scheduled then rescheduled several times.  This doesn't include appointments and activities for my two other children.  But I did it because it had to be done.

Recently, several people who know how complicated my life is, especially because of Josh, have commented "I don't know how you do it!"

This reminded me of an excellent novel I read a few years ago about the complexity of motherhood by Allison Pearson called I Don't Know How She Does It.  It made me laugh and cry. I really related to the central character who lives an incredibly busy life juggling marriage, kids and job (getting very little sleep) and squeezing a million demanding things into 24 hours (and she doesn't even have a child with special needs!)

I've been thinking about the question, "How do I do it?"  How do I manage all of the really complicated demands, details and dramas of my life?  There are probably many answers to that question but, today, one thing comes to mind.  A crucial part of how I can handle my crazy, "mom of a multi-disabled child" life is that I have to have a a few places in my life where I allow myself to be totally weak and needy.

For example, every once in a while, I make my husband listen to me vent about how frustrated I am with dealing with dysfunctional organizations and systems that are involved in getting proper services for my son.  This conversation usually involves me expressing anger, critical thoughts and despair.  I cry.  My husband listens empathetically without trying to problem solve.  This usually helps me a lot.

I experienced another example of being weak this past Sunday at church.  At our church, we have something called, "prayer ministry".  This means that at the end of every service the pastor invites anyone who has a need for prayer to come up and stand at the front of the church.  You stand there facing the front, with your eyes closed and with your hands held out open in front of you and you wait for a person who is trained in prayer ministry to stand with you.  When the pastor closes the service, you sit down with that person who will listen to you for a few minutes then pray for you.

This week had been particularly difficult so I just knew in my heart that I really needed to get prayer.  I even arranged ahead of time for someone else to go pick up my kids from their Sunday school class so I could have a few good minutes to get prayed for.  I was ready.  But, wouldn't you know it?  This time, when the pastor invited people who wanted to get prayer to come forward, no one went up.  The whole congregation sat in the "one and half minutes that feels like an hour" time of waiting to see what would happen.  No one likes to be the first or only person who goes up front to get prayer-- all eyes being on you.  It feels like you might as well wear a sign on your back that says, "I'm the neediest person in this whole room!"  Plus, I happen to be the wife of the pastor of our church who happened to be leading this prayer ministry time so there's the extra feeling of a spotlight on me.

But you know what?  I just might have been the neediest person in the whole room.  I don't know what's going on in anyone else's life but I do know that there are burdens in my life that I just can't carry alone.  I decided to embrace the reality of my weakness.   I walked up to the front of the room and stood there declaring my need to God, to myself, and to anyone who might have been watching.  Thankfully, many other people followed.  Even more thankfully, I felt that God met me in a deeply comforting way as another woman from our church prayed for me.

I have realized that I have to spend a lot of my day being competent, organized, and strong.  Sometimes I can be in that mode for days on end.  Sometimes I can fool myself into thinking that I have to be like that all the time for the sake of my kids.  However, I am finding that the best way to be a strong person is to find the right, safe places to be a weak person.

When do you allow yourself to be weak?  Do you have places where you can take a risk to declare your need to yourself, to others and to God?