wife, mother, advocate, coffee addict

The time is here. It’s actually happening. I wasn’t sure it would, or ever could. And now it is.

It’s not that we haven’t had children grow up and move out before. In fact, it’s happened twice. But this is monumental. This is change. This is progress. It is success.

I can’t say the years have flown by. Sometimes they shuffled slowly. Yet the memories seem like yesterday. The newborn babe with wires and a heart/apnea monitor, a gastrostomy feeding system. Nights of blinking lights and ringing alarms.

There were weeks of teaching this child to swallow, months of home visitors insisting he drop a little blue block into the red box, years of endless therapies to help him walk, talk and play. Continuing appointments.

As the years crawled by, we dreamed of independence for him. Of friends and his own place to live. And slowly, the dream moved closer. It’s hard to journey back without splashing tears on the memories.

Karl. The second grader enthralled by nature, who predicted weather and described cumulonimbus clouds. The child for whom things came late and with much difficulty. The usually cheerful, often smiling, always talking kid. The young man who still hopes to create robots to help save the world. The son who required fourteen mom-hugs a day. The time has come.

The make-shift basement apartment has sufficed, while we’ve taught the routines of life. Not only can he speak, walk and swallow, but he’s become an artist, an author, an expert on living with autism. And now it’s time.

We’ll help him pack the boxes, order the utilities, check thrift stores for kitchen and household supplies. We’ll canvas friends for no-longer-needed couch and chairs. And the moving will begin.

Our groceries will last longer, our water bill go down. I’ll have more time and space to write. The time has arrived. This colossal step must be taken.

And if he needs me, or I can’t stand the quiet house? I’ll walk across the street to visit him.

I can handle a lot. Job changes, financial stress, moves. Thirty years of marriage. Twenty years living with, advocating for children who have mental, emotional and developmental challenges. Filling four weekly pill boxes. Calling insurance companies, pharmacies, benefits specialists, adoption workers. Juggling appointments, school meetings and therapies.

Yesterday, we observed the anniversary of our daughter Mary’s passing with pizza and released balloons in her memory, as we have each year. She was not the first child of ours to precede us to heaven. Grief is a very hard thing. There is little choice but to handle it.

I’m learning to handle my husband’s chronic, debilitating illness. I can handle the extra ‘taxi’ runs for kids, when he’s too tired or hurts too much to go out. I’m beginning to organize chores, menus, and expectations better so the kids can help out more. It’s not easy, and I’m not always cheerful in the process, but I can handle it when his energy is gone after a full day at work.

When my son who has autism tells me for the 97^th time that day that he thinks I’m beautiful, I try to act as though it’s an original compliment. When my youngest daughter screams that she hates me while throwing things, I breathe deeply and remember that her behavior is due to unique brain wiring and isn’t a personal attack. Between a very dependent son and an explosive girl is my daughter who is quite independent and leads a full social life. I try to smile while catering to Erika, her friends and their whims. I become weary, but think I can handle it.

Just now, my 19-year-old son asked me, “How does time work? Does it go forward or backward? What does it mean when it says ‘nine oh three?’ What comes after seven?” Soon he’ll be telling me about the robots he intends to build.

Yea, I can handle quite a bit. It’s my life. What I know. What I do. Three days this week I’ll drive 120 miles to meet with doctors. The other two days will include an overnight trip for a 20-minute appointment that requires a total of eight driving hours. I’m feeling tired, but think I can handle it. The foot brace I must wear adds to the challenge, but I’m able to drive – at least until after my surgery.

I’ve had a couple good weeks, felt like I could handle what life throws. Until today. Today, after presenting at a workshop that lasted five hours, I picked up two kids and drove sixty miles to another appointment. I gave Dr. Psychiatrist the mood chart I’d kept on them for the past month. We talked about blood work Emily will need to have done tomorrow, and about KJ’s therapy sessions.

“Mom, what comes after twenty – I was just curious.”

I’ve done a lot. Thought I still could. But when I explained KJ can’t swallow the large tablets prescribed without cutting them into fourths, leaving a film of white powder on the table, the doctor told me to crush the pills.

CRUSH THEM! CRUSH them and put them into pudding. My brain shrieked, I CAN’T DO IT! I CAN’T CRUSH THAT PILL! I smiled, headed out the door, and called my husband. “I can’t do it!” I insisted. “I do everything else, but I do NOT want to crush the pill!”

(Note: Now that my children are independent, some with supports, I’m no longer responsible for handling the day-to-day meds! There is hope beyond today, moms and dads!)

“Mom, what day is it tomorrow? What day comes after Wednesday?”

Call it rebellion, call it a breakdown, call it crazy. I crushed KJ’s pills for the first nine years of his life, hiding them in applesauce, candy bars, ice cream. I’ve done a lot of things. I can do a lot of things.

But for today, I cannot crush a pill.