Tethered

 

I've realized that there are some ways in which the isolation which came with the pandemic did not feel new to me because for the past 18 years we've been responsible for an eternal toddler who must be watched at all times else he get into all manner of trouble.  This has not meant that we couldn't go out or see people or travel but it has meant that we do much less of these things than many of my friends and neighbors. My husband and I have been tethered by Josh's needs, sensitivities and limitations.  

This photo is from a recent day when we left him alone in the bathroom for just a little too long.  Someone had started him in the tub without putting everything away so Josh poured an extra large jug of Head and Shoulders into the tub and then pushed the jacuzzi jet button.  I walked in to find most of the bathroom filled with a hip high layer of bubbles.  

My first thought was "Oh my God.  We can never leave him alone ever.  I have to give up everything I ever wanted to do outside of this house.  I will never have freedom and independence ever again."  

Woah.  

Where did that come from?  After all, I have a full time job and an office that I can go to even during Covid.  I have the partnership of a wonderful and capable spouse who is currently taking the lead role with Josh.  I now even have two in-house teen aged babysitters who say that they will only charge us "half price" from their usual rates when they babysit other people's kids (actually, they don't really charge us but often insist that we Doordash them something).  

I think that it's triggering for me when we have an incident like this because it exposes my fear; fear that Josh will never grow in independence, fear that something really bad will happen to Josh because we weren't watching him well enough, fear that we will not have a good future because of who Josh is.  

It really is more about the fear of the future because the present is pretty ok.  

What is the antidote for this kind of triggered fear? 

First of all, breathing.  Sit.  Breathe.  Wait.  Keep breathing.  Feel the fear.  Breathe again.  Wait some more.

Secondly, and this is way later after your actual body has calmed down, ask.  Ask yourself what is going on. Ask God to help you.  Ask your body, how it's doing.  I think that slowed down asking is really good.

Finally, wait for grace.  Seriously, grace usually comes when we ask and when we're open.  That grace might be through peace or perspective or a memory or humor.  The grace might come much, much later and it might be really tiny but my life experience tells me that grace does come.  And when you see it or sense it, take it in.  You need it.  You were made for it.  

I did this just now and the new perspective that I received was that I am tethered to Josh but through the lens of grace, I believe that it is a good thing.  Messed up bathrooms can be cleaned but the love and transformation that comes from my relationship with my son will be forever.  

Our Neighborhood Walk

Almost every day since the the pandemic started a year ago, we have been managing being homebound by taking a walk around the neighborhood with Josh and our dog.  On most days it's my husband, the dog and Josh.  Sometimes the girls and I go along.  Today, my sister's whole family and my mother came along, all of us masked and trying to walk with some amount of distance from one another.  

Our neighborhood is generally quite nice with small to mid-sized homes, decently attended yards and old trees overhead.  People express their friendliness by putting out boxes with extra fruit such as lemons or oranges for anyone to take.  We pass three of those "Little Free Libraries" during the course of our walk.  People are friendly in a "look at you and smile" kind of way not a "randomly start to talk to someone you don't know" kind of way.  No one seems to be weirded out by Josh.  

All in all the walk is about 1.1 miles or 6000 steps and takes between 20-30 minutes depending on how slowly Josh is walking.  Josh takes his time, clapping as he goes.  Sometimes he stops to enjoy the sun on his face or to look at a leaf and possibly taste it.  He knows the way but he has to be watched lest he get stalled or decide to eat some inappropriate item.  

It's always the same walk, down the same streets, on the same sidewalks, making turns at the same places. My husband and Josh take great comfort in the sameness of the walk.  To me, for a while, it felt boring and a little mind-numbing.  Why can't we ever explore other parts of the neighborhood?  Must we always go the exact same way?

A therapist friend of mine recently told me that humans find great comfort in routine, especially during times of stress.  This must be true about our walk especially to the more routine-loving members of our family.  Josh is very committed to the exact pattern of our walk.  If I try to walk on the side walk on the other side of the street from what he is used to or to cross the street in a slightly different way, he resists heartily.  He feels very strongly that there is a way to do this walk and it's a very good way . . . not to be messed with.

One time, a mom was coming down the sidewalk toward us herding twin preschoolers each with their own scooters plus she had an infant in a carrier on her front.  I could see even as she was further away that she was going to have a hard time moving to the other side of the street to avoid us.  I tried to get Josh to go around them on the street and he wasn't having it.  The more I insisted, the more Josh got upset and started screaming and hitting himself on the head.  I apologized profusely as we had to pass each other, uncomfortably close given the county health guidelines of remaining 6 feet apart from people who are not in your household.  She didn't say anything back to me, perhaps because her mask was in her hand, but her eyes told me that she understood and wasn't judging us.  

Since that time, we got help from Josh's Orientation and Mobility (O & M) instructor at school to work on having Josh practice going around a parked car in the street every now and then to practice "giving way" on the side walk.  At first Josh did it for goldfish crackers, then just for verbal praise.  Now he can do it whenever we ask him to.  Being flexible with his routine is not his favorite thing but he's gained some amount of elasticity over time.  

I realized today how blessed we are to have our little walk.  Having done it hundreds of times now, it feels like a comforting thing, a chance to notice simple pleasures like fresh air, trees, different flowers that bloom around the homes of our neighbors.  We know which house is being sold and which one is doing some remodeling.  We wonder where the little white dog has gone since we haven't seen him in his backyard for a while.  This routine has made our neighborhood more "ours" and has given Josh a safe way to engage with it.