Wait here.

I wonder how much of my day is spent waiting for some body or something. I wait for Maggie to wake up so I can do the last push to get her out the door in the morning. I wait for the verrry slow elevator to take us downstairs, I wait for the school bus, I'm on hold with doctors offices, supply companies, agencies, insurance companies and everything else. We wait for appointments with doctors and therapists, we wait for the night nurse to arrive, and for the meds to be ready at the pharmacy. We wait for deliveries of diapers and food and other supplies. It's time lost. I can't really do anything else but busy work because I know I will be interrupted.

I live in "The waiting place." Dr. Seuss cautioned against it in the wonderful book "Oh the Places You'll Go"

You can get so confused that you’ll start in

to race down long wiggled roads at a break-necking pace

 and grind on for miles across weirdish wild space, 

headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come, 

or a plane to go or the mail to come, 

or the rain to go or the phone to ring, 

or the snow to snow 

or waiting around for a Yes or No 

or waiting for their hair to grow. 

Everyone is just waiting.

Waiting for the fish to bite

 or waiting for wind to fly a kite 

or waiting around for Friday night 

or waiting, perhaps, for their Uncle Jake 

or a pot to boil, or a Better Break or a string of pearls, 

or a pair of pants or a wig with curls, 

or Another Chance. 

Everyone is just waiting.

I'm in that "useless place" right now. Waiting. And it's particularly frustrating when I have to wait for something Maggie related suring the school day while she's not even with me.  I had my jacket on all ready I'm ready to go out but couldn't. I'm in a holding pattern.  The oxygen guy called at 10AM and said he would be here between 11-2. Hmm. Should I run out quickly and come back or wait. I can't miss him,. the tank needs to be filled. I asked him "Do you think that's closer to 11 or closer to 2." He said between 11-12. OK. I'll wait here first. I did my banking on line, started another load of wash and folded the three loads that had piled up on top of the dryer. I cleaned the kitchen and started the dishwasher. It's only 11:45.

Tap tap tap.

I could clean out my dresser or my closet, but let's not be ridiculous about this whole thing.

ahh-- doorbell.

Where do you want it Ma'am?

Part of managing Maggie’s life is dealing with the supplies. She has a TON of medical supplies to be ordered, delivered or picked up put away and replenished both for home and for school use. I suppose we all do, but I cannot get what Maggie needs at a grocery store or even a drug store for the most part. I have to deal with medical supply companies, pharmacies and warehouse stores. Receiving every batch of supplies comes with at least one phone call, but generally requires several.

There are at least three medical supply companies in my life at any given time. Each has its own specialty and its own set of rules. The liquid oxygen is refilled every two weeks at the most, and that means someone has to be here to let the guy in and keep the dog from eating him He’s a nice guy and comes from the company that hands all the respiratory supplies. They are very easy to deal with. I call, tell them what I need and it comes in a few days via UPS, unless they can coordinate it with the oxygen delivery. Just yesterday, the suction catheters, nebulizer kits and oxygen tubing arrived.

Yesterday I was also expecting a delivery from the company that supplies her food, tubes, feeding bags etc for her GI needs. They too are very easy to deal with but they use a private delivery service that has some strange characters in its employ. They inevitably come well after dark and leave nine boxes of food and supplies in my hallway. One person left it in the driveway and drove off. Fortunately, I saw him and got the stuff before someone took it or the rain started. Last night all those boxes arrived just as dinner was coming out of the oven. I was helping the nurse with a procedure and had to leave the bedside, corral the dog and greet the strange man warmly as he piled up boxes. (see picture above) All this was happening while the timer was ringing on the stove. It was like a bad sitcom.

The third company handles the diapers and catheters and that stuff. That means two more HUGE boxes, which should arrive next week. This company is more annoying, but improving every month. On the other hand, maybe I am just getting better at complying with their rules. Unfortunately, the diapers they send are just short of what Maggie needs in a month and I have to order a case every other month from a local medical supply store. You would think I could just increase the order from this company, but no can do. They send the amount approved by the state under this program not the amount Maggie actually needs. They are not allowed to send me more, even if I pay for them. It is stupid, but that is not their fault. If I want more, I would have to go to a hearing. I would win, but at what cost? It is easier and cheaper to go to Clement Street and get them from the local dude.

On top of that, there are the meds that I need to get from Walgreens. I am a regular at Walgreens. Maggie is on eleven prescriptions when she is healthy and more when she is sick. Right now, it is thirteen. Over a period of a year, I managed to work it so they all renewed at about the same time, or at least in two batches a month. That cut my trips to Walgreen down considerably. Of course, the two antibiotics throw a wrench into that. I am going back today for the fourth time in a week. I love the people there, or most of them. I have definitely learned to avoid certain employees.

Then there are just the regular over the counter meds and supplies like wipes, gloves etc. Those suckers are expensive. I get as many as I can as Costco. Giant bottles and boxes of things are great prices.

Juggling and chasing all this is a pain, but it is part of the deal. The real problem is storage. I wonder if I can get economic stimulus money to rent the house next door to store Maggie’s supplies.