Morning Has Broken

I have a unique morning routine. I get up between 5:45 and at 6:30 seven days a week and have for the past 14.5 years. At least I do on the nights I have a nurse. Otherwise, I have to stay up all night tending to Maggie. Or split the night with my husband if he does not have work the next day. Usually we do have a nurse overnight so I am going to concentrate on those mornings.
The nurse usually works 11PM to 7Am so I have to be ready for duty at 7AM. The alarm goes off at 6:30 and if I hop right out of bed, I have time for a shower before I head downstairs. That is ideal, otherwise it’s noon or later before I get another chance. Since I get at least somewhat dressed to meet the bus, it is just easier to keep the day going rather than stop and shower.
There is so much to do before Maggie leaves for school in the morning and it really has to be done in the last hour or so. It is my habit to prepare the coffee the night before so I can just hit the “start” button on the coffee maker on my way to Maggie’s room. I get the night’s report from the nurse and chat for a while until the nurse is out the door. I pour my cup of coffee and start the madness.
Usually Maggie is already dressed for school because our night nurse ROCKS. She gets Maggie dressed after giving her the various medications and breathing treatments she needs at 6AM. That is an enormous help and saves me lots of time. I have to fill the portable oxygen tank form the large liquid tank so she has oxygen on the bus and at school if she needs it. She rarely needs it during the day, but you know the one day I don’t send it…..
Her communication device also has to be programmed with the days’ news Sometimes I get this done the night before, but it is fresher if it’s done in the morning. We can include any excitement from the evening or morning if we do it last. That takes at least 15 minutes all by itself – and longer if I accidently hit “clear” instead of “ok” when I am done. You would be surprised how often I do that. You think I would learn…
The final piece of equipment for the back of her chair is the portable suction machine, which has been charging overnight. We have a few of these machines so that one is always charged up and ready to fly. She cannot be without that for even a few minutes. The backup supplies have to be in there, like saline bullets, trach dressings, sterile water to clear the tube etc. An emergency trach is always attached to the back of her wheelchair, as is an ‘ambu’ bag – for resuscitation. (Never needs that either, but it’s required)
Once the wheelchair is loaded, I turn to Maggie and do the tube feeding and the diaper change with catheterization. She is getting more excited by the minute now, because she knows we are heading downstairs to get the bus. This child loves school, loves riding the bus and loves watching me work faster and faster as the minutes tick by. All the time I’m saying, Mag, we are NOT going to make it today.
I put her jacket on, lift her up, put her in her chair, and fasten the six or seven buckles to secure her in the seat. Maggie cannot sit on her own and depends on the design of the chair and the strength of the straps and buckles to hold her up. Plus, she thinks it is HILARIOUS to unbuckle the chest harness about 50 times. She has one strap that’s “Maggie proof” and can only be opened by inserting a pen into the latch.
Now that she is in the chair, we are into the final stretch. We tie a scarf around her neck to cover/protect/hide the trach. Wait, we forgot shoes grab them to put them on when we are safely downstairs. The tray for her chair and the pole that holds the communication device also have to be located and placed on the front porch. They don’t fit in the elevator with all the equipment. Okay, Run a brush through her hair – which is short and unruly - and head out the back door to the elevator. Our elevator is a slow moving lift. You have to allot at least two minutes to go the one story down. It is fun when it's raining because the lift is open to the elements, but it’s not raining THAT often. And when it does, we get wet. That’s all.
Now that we are downstairs, we have to navigate through the basement, which is full of stuff. I have insisted that a path as wide as the wheel chair be maintained at all times and HEADS ROLL when that is not the case. But that’s not very often either. I open the garage door and hope the bus is not out there waiting. We put the shoes on, talk to the school nurse who is waiting for us, realize she needs some other supplies, which we quickly gather, the bus comes around the corner and Maggie boards via the wheelchair lift. The nurse gets on the bus and the driver takes off.

Now its 8:30 and I can start my day.