I hear pretty regularly, “I can’t imagine what you’re going through.” And maybe that’s true, but everyone of us have challenges. I had a friend of mine who has battled cancer for years say that to me the other day. I had a single mom friend of mine say the same thing. Sure, this exact situation looks different for me than for them, but it is challenging nonetheless.
I rarely get preachy here, and this won’t be, but there is this passage of scripture that the Apostle Paul directs the church to “bear one another’s burdens.” We are to carry the burdens of each other. This isn’t a masochistic directive- that it’s better for me or Tiffanni if everyone experiences Huntington’s. In fact, that wouldn’t be better- this disease is evil. He isn’t telling us to divvy out diseases as much as he is saying, share the load. While there is no way to carry the disease, there are other loads that can be carried.
You see, if the disease was all that we had to deal with, then that would be manageable in a sense. All of our attention could go to support, focus, disease control- but there are a few other things that bring pressure. Life alone brings with itself pressure from relationships, job, raising children and all of their extracurricular needs, education, paying bills, car maintenance, lawncare, home upkeep, recreation, you know- life. And it’s there that my life has been engulfed by burden bearers. People who lift, carry, and unload in a way that is incomprehensible. For so many of you that have lifted a load, you don’t think it’s much. In fact, you usually say, “I know this isn’t much, but…” However, at some point, each load, each lift adds up.
For a couple of years, before my parents moved in, there was a lady who picked up our laundry on Tuesdays and brought it back on Wednesday. Every week. Folded, clean, and ready to be played in, grimed on again.
For years, people signed a list to bring us food several times a week. One of the best parts about that was we always got everyone’s best meal! Southern chefs, cooking their best to feed my family. I didn’t have to come home and open cabinets and cans, pots and pans- I didn’t have to feed Tiff and the kids pizza and fast food. We ate like kings- redneck kings.
There is a lady that comes every month and deep cleans my house. Sweeps, mops, toilets, showers, vacuums, makes beds, hands and knees, sweat and toil- cleans. This last time she handed me money to go take Tiff to our weekly Dairy Queen date. Yeah, handed me money- to clean my house.
My kids go to the greatest school. The teachers are fully aware of our situation and realized on their own that my kids were going to get half-attention on my best day. From the principal to each teacher- they each get one-on-one, hands on attention (not the same kind I got when I was a kid). Private tutors. Private project helpers. Homework overseers. Test preparers. I’m not sure that the kids love it, but I’m knocked over.
Tiffanni makes an appointment to have her hair cut and colored every other month. It’s not like it’s easy to cut and color a head that can’t stop moving, but her stylist treats her like she’s a queen and she’s pampered for half a day. The kids and I haven’t paid for a haircut in years. We make an appointment, show up, get cut, give hugs and walk out the door.
Last night a friend of mine took me to a fancy restaurant. I was never one for fancy restaurants and one summer five years ago, Tiffanni and I went to NYC to visit our friends. We walked into a five-star, chef prepared place and ordered. For the next two hours, we ate the best food I had ever had in my life. It was like I had awakened to this new world that I never knew existed. A light went off and I said to myself, “Oh, so this is what this is all about.” The food was amazing, the company even better. Relationships around the table are sacred. Who knew. So, last night we ate the best Italian food I’ve ever had where I relaxed and talked and enjoyed myself. An easy night with good food.
A friend of mine gave me an above ground pool the other day. You know, just a pool. Tiffanni does so good in pools. The water lightens her body and stills her movements. Another friend brought his bobcat and dump truck over, dug a hole, leveled the sand, and prepared the whole area. An easy summer.
A year and a half ago, my sister gave me a subscription to a massage place. I go every month, relax, and let all of the toxins out- at least that’s what they tell me. All I know is that it feels amazing. I catch myself counting down the minutes until it’s over because I’m so sad that it has to end.
Another friend of mine makes all of our Halloween and school/church play and production costumes. My kids have been flowers and animals, celebrities and cowboys, Daniel Boone and dancers. You name it- she’s made it.
I have two young ladies that came through our youth ministry that come and sit with Tiff every week. They talk to her, do her nails, make her meals, help her do all of her daily we-take-it-for-granted stuff. They show up at kids ballgames, play board games, and cart kids around.
When Addyson turned 12 last year and was going into 7th grade, another friend of mine took her on a make-up spree. How to’s and bags of make-up. Just another something that I would have never figured out how to do.
For years, every end of summer, my sister and her mate (get it), come take the kids school shoes shopping. “Get whatever you want.” As if that’s not painful enough, they take them all at once. I don’t want to shop for my own shoes, much less someone else’s.
I have a young lady in our lives that has committed to teach the kids art all summer. Their own summer school. Every week a project that builds on top of the other. And before you see this as just something else, art matters. In all of the ugly that is in the kids’ lives, art reassures them that beauty exists. Sometimes it has to be noticed, sometimes it has to be created, but beauty is there.
And then of course, there’s my parents. “Stability is important,” my dad told me. “We’ll be there as soon as we get everything settled here.” And that was that. They left their jobs, their friends, their calling, and their empty-nest-we-finally-did-it-all-the-kids-are-grown-and-out-of-the-house-and-we-can-celebrate lives, moved down, and started over. With kids. We sit at my dinner table nearly every day and act like a normal family. And they’ve just about got me convinced that we are. The laundry is done, the dishes washed, the kids are at school, there’s food on the table, the grass is mowed, the house is clean, my children are happy and vibrant and thriving, and the dog stays fed. And every bit of that matters when raising kids. The normal stuff gets taken care of so that the kids never feel abnormal. They have enough in their lives to feel different about.
So no, no one has lifted Huntington’s off of our plate. It’s still there, daunting and evil, over-bearing and encroaching. But when it’s the only thing that I lift, and I obviously don’t do it alone, it feels manageable. At least today. We’ll make it today and I’m sure we’ll get some more help tomorrow.