My Life In Boxes


With  a title like that, you’d think that we were moving.  No.  Just wanted to give you all a glimpse of what it’s like at our house on a weekly basis.  I’d like to say that sometimes it feels like Christmas- minus the beautiful wrapping paper, gorgeous tree, and lilting songs- ok, the songs are probably there in the background of Sophie playing the many videos and DVDs of Christmas, her favorites. But don’t get your hopes up that you’ll hear the whole song- that’s not Sophie’s way.  You’ll get bits and pieces, and usually the same bits and pieces over and over and over….but I digress. That’s for another post.

To live with a person with chronic health issues, dependent upon life-saving IV nutrition, medications and fluids, you learn that your home is a storage facility.  I lust after the homes of friends and on HGTV that have a place for everything and everything in its place. When we bought this home it seemed ideal for our and Sophie’s needs.  Little did I know that we would really need an extra home next door to store all of her things.  As my close friends can attest, I’m not the best housekeeper, but when you are receiving box after box sometimes daily but at least weekly, it’s very hard to keep up.  At least that’s my excuse for now.

And I stack to the ceiling in some cases.  You get creative in your storage solutions.  You try to make your home look like a home, or in my case a “well-lived in” abode, not a hospital or a storage facility.

With medical shortages and the ever present feeling that insurance or the state will take away funding for certain items, you hoard.  You bargain with friends whose children have similar, but different needs. I don’t go crazy (ok, maybe some of my friends will state otherwise,) but it’s hard to hoard when you have a home built for “regular” people.

Before you report me to the Hoarders Channel, I want you to know right now I’m hoarding memories.

When my son was young he had fun with all those boxes.  Building forts and homes for his Bionicles. Making shields and weapons from pieces of cardboard.  They are great for holding the arsenal of Nerf guns he’s acquired over the years. The cats love to climb and hide in those boxes. Boxes came in handy to hold all the books we have, until the ones in the basement got flooded and ruined.  For book people it’s incredibly painful to throw out those books.  Fortunately the boxes with old pictures, photo albums from high school and college days, and my children’s baby items survived.

The best boxes are given away to friends who are moving away. I’m glad to be of some help, though the boxes remind me of those friends now gone. Styrofoam from the boxes that shipped cold IV medicine we give to the local grade schools to do winter scene projects for art class. Boxes to hold all of the paperwork from the insurance company, from the hospital and doctor visits. But there is always more boxes coming. The recyclers in our area always know there is a goldmine at our home.

As I stack supplies in my daughters room, in the basement, in the garage, in any place I can find, I’m grateful for those damn boxes that keep my daughter at home with us. More important things are waiting for me.  Keeping my daughter healthy and alive take top priority.  My son’s, my husband’s, my pets’ and my needs are mostly met, and in that order.  As a Mom to a medically fragile child, you learn that you come last, though you know in your head that you should take care of yourself, but there is ALWAYS something that needs to be done to keep her out of the hospital.

My therapist  reminds me weekly that I need to put my oxygen mask on first before I can help others.  Makes sense until an alarm goes off when you are trying to take a moment to stuff something in your mouth that might be considered lunch, or just to take a pee.  Yeah, life is like that here. So you compartmentalize your life.  Relying on the angels who help care for your kid, you only get certain times to get things done. Blessing the companies who made the decision to be open 24 hours and have drive-thrus.  Rushing to run 5 errands when you really only have time for 2. Sophie is home tutored by the school district, so that type of “respite” is not included in your life.  You become the consummate multi-tasker, and still there’s a list of to-dos as long as your arm by the end of the day.  But everyone’s alive, and clean and happy for the most part.  Mission accomplished.  I can check off that

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