Family

It is Saturday and thankfully, I am not working. Well, let me rephrase that, I am not working at my actual paying nursing job today. Everyday with B-man is a workday for me. However, one or two days a month, I work as a high tech RN for a pediatric home health care agency. I have one patient that I care for in her own home. Hmm, that sounds vaguely familiar. Otherwise, I love weekends. I usually get a little break because my sweet hubby, Buddy, is home to help out with B-man's care. At least once a month we load up our over sized E250, handicapped accessible van that I have lovingly dubbed "The Big Green Machine" (which I have discovered is also invisible. We have been hit twice and both times the other driver commented, "I didn't see you")and head north to our hometown for a visit with our family. Six years ago, we left them all behind when we moved 180 miles away due to Buddy's new job. I am very close to my family and miss them dearly. Sadly, due to the aging process, my family now consists of only our daughter, Sissy, her husband, J, their daughter, Moo baby, my mom, Gammy as the kids call her and Buddy's dad, Papaw. I am an only child and Buddy has one older brother with whom he is not close.

Now, packing up for one of these day and a half long visits is no easy task. As I have mentioned before, B-man comes with a variety of medications, equipment, medical supplies and specially prepared meals. It takes me at a minimum, 2 hours of preparing and packing to make sure he has enough supplies to properly care for him. Over the years, I have learned (the hard way) to keep a decent amount of "extras" that are not readily available at the local drug store such as adult diapers, feeding syringes/tubing and nebulizer cups/masks at my mom's house so that I never run short, should our stay get extended for any reason. One of my best purchases for her home was a nearly new bath chair found at a local Goodwill store for $15.00! The exact same one he currently uses at home cost over $300 new. And to think, I nearly walked right past it when Buddy pointed it out to me.

But in the end, all of the preparations are worth it when we reach a certain area just outside of their city that B-man recognizes, realizes where he is headed and begins to get excited. He rocks his wheelchair back and forth like crazy and the grin that spreads across his face is as big as the state itself. He knows he is going to see family.

Few people can comprehend what it takes to manage a disabled child's daily life. Family included, as evidenced by the statement made by our son in law, J, as he watched us unload The Big Green Machine one day. After about our third trip of hauling luggage and equipment into the house, he asks, " Why did you bring so much stuff? Aren't you only staying for 2 days?" He just didn't get it. To make matters worse, we cannot bring the one piece of equipment that makes our lives easier...our lift system. Even at 23, B-man is still relatively small. However, lifting him does take some effort and unfortunately, we are not getting any younger. That much wear, tear and strain on our back muscles eventually takes it's toll. The lift system, which is permanently installed in our ceiling at home is, hands down, our favorite piece of equipment ever. Bathing B-man anywhere other than home is a two person job due to the logistics of lowering him down into a bathtub. The lift allows us to safely transfer B-man from his bed to his bathroom and down into his bath chair without the fear of slipping, falling, dropping or otherwise harming him or ourselves. Without it, we take our chances.

However, once the van is unloaded. The fun begins. Now to say that my mom's home is crowded would be an understatement. She has a love of furniture and nearly every square inch of wall space is covered with some sort of antique wardrobe, buffet, pie chest or other equally over sized appointment. Then on top of each of these pieces are doilies, plastic flowers in vases and a multitude of knick knacks, bottles or jars. This makes maneuvering a wheelchair around quite challenge and finding even a square inch of space to place something becomes a frustrating task. I think Buddy and I share an equal amount of stubbed toes from trips to the bathroom in the middle of the night. But all these inconveniences aside, we do enjoy our time with family.

Even under the best circumstances, living with B-man is work. It is something that I gladly do because I love him and cannot imagine living without him. However, on Saturdays, I happily enjoy my breaks.