I'll take the blahs, thank you.

This getting up and ready in the middle of the night is for the birds. (Owls, I guess). It is so dark in the morning that I feel out of sync all day.

Once I get Maggie all prepped and ready to go in the morning, we roll the chair out onto the deck and get in the elevator in the dark of night. I have to grope for the light in the basement to find my way to the front of the house and it is still dark when we're outside waiting for the bus. It gets light pretty quickly once we're out there. The whole process will definitely be easier after the time changes. (Of course then I'll be complaining that it's dark too early in the evening.)

The dark mornings make it hard for me to start my day and the mid afternoon blahs are quite present. Yesterday was no exception. The afternoon nurse arrived just ahead of the scheduled time for the bus. I was working and trying to stay awake. That's when the phone rang. I saw it was the school nurse and thought, oh, the bus is going to be late, maybe I can sneak in a 15 minute nap. I was half right. The bus was going to be late, all right, but I was snapped out of the blahs by the rest of her news. The bus was in an accident.

WHAT!?!?! She assured me that everyone was fine and that the accident was minor. They were only a block away from the school. The bus was stopped at a light and was rear ended by the vehicle behind them. There was a very loud crash that scared all the kids (and the adults) on board, but there was no damage to the bus and no injuries. The car behind them didn't fare as well there was front end damage to his car.

Suddenly I went from "I need a cup of coffee to stay awake" to "I need a cup of tea to calm down." My initial plan was to head down there and get Maggie home as quickly as possible. But there are protocols and procedures to follow. They wouldn't let anyone off the bus until the supervisor arrived and the reports were done.  I understand that completely, but it was difficult to just sit here and wait. I didn't think I could add anything positive to the scene and would only complicate things by bringing my van to the congested area. So I waited. Maggie arrived 45 minutes later not any worse for the wear.

I asked her about it and she gave me a sad face, so it clearly scared her, but she's fine. It scared me too. I know how precarious Maggie's well being is, but I feel like she should be immune from the regular dangers and perils of life.

If you are suffering from the mid afternoon blahs, enjoy them. They definitely beat the alternative.

The Gift of Time

We are readjusting to the school schedule. That means we are back to the morning rush of getting Miss Maggie ready and out the door in time for the bus at 7:15. That is no small feat. By the time the bus pulls away, I am ready for a few minutes of down time. It is this time that I tend to read the paper (yes we still get the paper) check facebook, write, read blogs etc.

It is important to be aware of the time slipping by, however, because there is a lot to be done before that afternoon bus arrives with Maggie. There is a nurse here in the afternoon to tend to Maggie, but I have to be around to help. I can run out for a few minutes here or there, but I am on a very short leash once Maggie is home.  If I was an intelligent being, I would hit the ground running in the morning and play on the computer after 3PM, but I guess that involves too much of a change in my schedule.   

I do have actual work to do for the clients I handle. There is also the ridiculous amount of paperwork and “busywork” involved in managing Maggie’s supplies, services, nursing, life etc. Every week there is some appointment or other for Maggie, which all requires choreography as well as execution.  On top of that are the obligations that everyone has shopping, laundry, walking dog etc.  Tasks that can be done with frequent interruption I save for the afternoon.  Things that need my full attention have to happen while Maggie is gone.

Yesterday I finished something I was working on at 2:00PM. Maggie’s nurse arrives at 2:30 and her bus comes at 3:00. I needed to help my mom with something but I did not have time to get over then and back before Maggie arrived. I called and told her I would be there at 4:00PM after Maggie was settled in and the first set of procedures was done. I still had to do the shopping too. We had a friend coming for dinner so I needed to get to the store.  I knew I could do that in an hour.  I went to Safeway which is just a few blocks away. I was coming home  when I  saw a school bus. I looked at the clock  which read 2:42 and thought, that can’t be Maggie, it’s 15 minutes early. As we passed each other I tried to catch a glimpse to see if it was Maggie’s driver. I couldn’t see him but was sure it wasn’t. As I turned the corner onto my street I see Janice, the school nurse pulling out. That means Maggie was home AAACK!  She was early.  That really did not compute.

Janice stopped to give me a report on Maggie’s day. She had already spoken to Fely, the home nurse, but Maggie has been less than perky this week, so she wanted to talk to me too. She told me Fely asked “where’s mom.”  It was unthinkable that I wouldn’t be there to meet the bus. I’ve never done it without telling someone ahead of time. I lugged the groceries in and greeted the Queen and her attendant. We set about getting the procedures done. 

As I was getting ready to go to my moms, Steve called. I told him I had to dash and he said those words every busy person wants to hear. “I’m about six blocks from your mom’s house, why don’t I go fix it?” That was the gift of time. I had an hour to myself. The shopping was done. Dinner was easy and didn’t need to be started yet. I had an hour to waste if I wanted to.

I plopped in a chair and watched “Make over my Man” day on Oprah. It was decadent. And I got a few good ideas for Steve and the boys. 

How much time do we have?

Christmas break starts in a week. Maggie will be off school for two weeks. The first week will be great because there is all the activity getting ready for Christmas. The second week will be more difficult because we will have to find things to do.

Maggie loves to go Christmas shopping, or any shopping. The benefits of Maggie coming along on a shopping trip: she has a great time, and parking is sometimes just a little bit easier because we can use the handicapped parking. The drawbacks of bringing Maggie along maneuvering the wheelchair through crowds and over filled stores is a pain, people gawk, especially when she needs suctioning, and Maggie’s schedule means we can be out of the house no more than three hours.

The wheelchair issues are what they are. If I let that stop us, we would never do anything.

The gawking is tiresome. REALLY TIRESOME. It is always there. Always. On a good day, I ignore it. On a bad day, I stare back. On a very bad day, I say something. (Some of those comments have been priceless, but I will save those for another time.) Good bad or indifferent, we cannot run our lives by the bad manners of others so that does not stop us.

Though less obvious to the casual observer, the toughest issue is Maggie’s schedule. Maggie’s schedule runs everything. She has to be tube fed every 2 hours and she has to be changed and catheterized every three. The tube feeding I will do anywhere, though it exacerbates the gawking. The changing and catheterization is a whole other story.

Maggie is 14 years old and wears diapers. She will always wear diapers; I am used to that. Changing a diaper of a 14-year-old girl is not something you can do just anywhere. Changing her requires many steps: 1) finding a place that is private and safe; 2) unstrapping the seven buckles on her chair; 3) lifting her out; 4) getting her undressed and cleaned up; 5) retrieving all the necessary equipment, diapers, catheter medications etc; 6) reversing steps 2-5 and finally, 7) wiping the sweat from my face.

This takes two people when we are out. Each of us can do on our own at home, because everything is set up for this; but when we are out there is no way one person can do it alone. At least I can’t. If Steve is with me, we cannot use the public restroom because they are single sex. We cannot use changing tables anyway, because they are designed for little babies, not 62 lb/54 inch tall young women. Usually we cannot get past step one.

Because of this, we plan outings around her changing schedule. It is the last thing I do before we leave and the first thing I do when we get home. That allows us to maximize our time out of the house. But it also keeps us pretty close to home. Driving time is included in this allotted time period. Unless we are heading somewhere that we know we will be able to change and cath her privately, we have to be back. Besides, after three hours, Maggie really needs to get out of the wheelchair and change positions for a while.

We have learned, therefore, to be efficient in our outings. They are generally planned with a single objective and a possible second, time permitting. If one of use needs to get a lot of stuff done, we have to do it without Maggie. It would be nice to have a little spontaneity with her, but it is just not part of the game plan. While this bothers us, Maggie does not care. She loves going out, no matter where, no matter why, no matter with whom.

I need a few short outings for the week following Christmas. Maybe she will want to return her gifts. Oy!