Friday, December 12, 2008

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!

1 comment:

  1. Hi, Sally,
    You write so lovingly about Maggie. She has a very good quality of life with her parents. Fortunate daughter.

    I'm hoping many parents read your blog. Do you read 5minutesforspecialneeds?

    From your position of a mother to a now-teenager - what would work to get more mothers of younger children willing to look ahead and consult with mothers like you? Do you think this is not a good idea - to try for getting mothers of different experience levels together?

    I have no doubt that you have received excellent advice throughout Maggie's life. Can Maggie stand with support? Seems like a few visits from a therapist to come-up with some new ways to manage her at this age would be worthwhile.

    Merry Christmas. Sincere best wishes for an enjoyable holiday for you, Maggie and Steve.


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