I texted my sister and got no response.
The next afternoon, “Sorry. Just saw this. I couldn’t find my phone and it died while it was lost.”
My immediate thought was “Wow. Must be nice. I wonder if she has any idea the Luxury of being able to misplace your phone?”
I said nothing of it. We continued our conversation. I was bitter. If I’m honest.
I’ve been thinking a lot about the concept of Luxury lately. What it means in the general sense of yachts and fancy cars and Robin Leach and such. But also, and mostly, what it means to a parent to a special needs/medically fragile child. The things the average family takes for granted. The things the average family doesn’t even realize they take for granted. Simple things. Big things. Obvious things. Itty bitty little things that add up day after day, year after year, into one great big Life.
My daughter’s seizure disorder means that my phone is glued to me. At all times. 24 hours a day. 7 days a week.
When she is not with me, it is in my back pocket, on the kitchen counter, within arm’s reach. I cannot misplace my phone. I cannot let it vibrate in my purse hanging in the closet. I must be available in case of emergency.
I cannot fathom the Luxury of having a phone for convenience.
My phone rings. It’s the school’s number. I answer. “Hi, this is Susie Smith, the school nurse at Such and Such Elementary…” Before she can get to the end of her sentence, I’ve grabbed my keys, slipped on mismatched flip flops, scooped up baby brothers and am halfway out the door, heart pounding, hands shaking.
“…I just wanted to follow up on our last meeting.”
A huge sigh. My shoulders crumple. Tears sting. My hands are still shaking. Harder now. Adrenaline.
Now the school calls, and before so much as a hello, they say “Jill is fine.” And then we talk.
And I wonder what it would be like to have the Luxury of not feeling your stomach drop every time your phone rings.
But then a small voice says “But you have a phone. That’s a Luxury. And a car. And keys. And a house. And a baby to scoop up. And ALL THE THINGS. Luxury.”
The truth is, I live a pretty charmed life. I have an awesome husband who loves us and provides for us (he also happens to be easy on the eyes, but that’s neither here nor there) and loves me in spite of my hair brained antics and stubborn sass, a silly gaggle of littles, an extended family who supports us fully, a nice house, and, and, and.
I’d want my life if I wasn’t me. Truth.
But still there are Hard Things. Things I grieve. Mourn in lost expectations. Things that Will Never Be. Or at least not without a ridiculous amount of planning and worry. I share these things not to make a typical family feel guilty. Nor do I share to garner sympathy.
But simply to share. I’m an undying fan of storytelling that bridges the gap in understanding. And so I share.
To say to the families who don’t have some of these worries “Hey, I’m kinda jealous. Not gonna lie. So a little perspective this morning, dear friend. I love you and I’m so thrilled for you that this is foreign but I just want you to know. This is the hard stuff of my life sometimes.”
And to my special needs friends I say “Hey, I SEE YOU. I get it. Maybe in different ways and to different degrees, but you are seen and valued and SOLIDARITY. It’s okay to be pissed about it some days. I have felt the ache deep in your bones put there by a constant and systematic worry. I know how uncomfortable those stupid hospital chairs that convert to beds are. I see the deep creases in my skin no matter the brand or price of moisturizer I slather on. But holy smokes how lucky are we?”
My life often feels like a 1970’s game show with a cheesy host in a powder blue suit. “And now for our host of On the One Hand…But on the Other. Where three lucky contestants will have some lousy things thrown at them, but before they can feel too sorry for themselves, we’ll remind them how much crappier it can be.” Or something.
Luxury is not having a calendar chalk full of therapies, appointments, assessments, clinics, and form deadlines.
Luxury is having the resource of therapies, appointments, assessments, clinics, and programs that require forms.
Luxury is buying a house and not once considering ambulance response times, proximity to a hospital, and if the driveway is too steep for emergency vehicles. Luxury is not having to have conversations with your husband like “Well, the driveway is really steep with a hairpin turn. If we bought this one, we could ask the neighbor on the end if we can use the corner of his property as staging whenever we have to call 911.”
Luxury is buying a house.
Luxury is taking a family vacation with budget and the calendar being your primary planning concern. If you can afford to go to Hawaii or Europe or Bora Bora, you can. Luxury is not having the realization that you will never visit these places. At least not as a family. For a plane ride over the ocean would be a risk not worth taking. Nowhere to land, you see. Luxury is being able to camp. Hike. Boat. Even road trip across the States. Not that I would ever road trip anyway.
Luxury is giggling under the covers and curling up on the couch to watch Ariel and Scuttle brush their hair with a fork for the 1,964th time.
Luxury is never having to call 911. A swarming team in your living room. Siblings quiet and holding hands. Whispering “Mama, is Jilly going to be okay?” Luxury is not wondering if this is the time you are lying when you say “Yes. She will be fine. We will be home in a few hours.”
Luxury is pushing three buttons and having help and potent medications in little tin boxes.
Luxury is sleeping through the night. Not waking up to peer at the video monitor to make sure everything is okay. Several times a night. For five years. And many more.
Luxury is technology. Luxury is her sweet bedhead on her very own bed with the purple sheets and a stuffed Elsa askew to her left.
Luxury is not having to train a babysitter how to administer emergency medications. Looking at a 19 year old and saying “This is our address. I wrote it here so you don’t have to go outside to find the house number. Do not call me first. Call 911. Give her the meds. And THEN call me. Are you okay?” Luxury is leaving with little more than bedtime instructions and Don’t Give Them Sugar After 7.
Luxury is finding sitters you can trust and who take on the responsibility with a smile. Luxury is an hour out with your husband and eating a meal you didn’t cook. Or clean up after. Especially that.
Luxury is not driving hundreds of miles to specialists alone with her. Because dad is home with the others. Luxury is not staying for extended periods of time in hospitals and the beeping machines and cold floors. Riding in the back of ambulances without so much as that familiar calloused hand to hold. Missing your other kids. Feeling really alone.
Luxury is having access to world class facilities and highly trained physicians who know how to read the beeping machines. Luxury is having an incredible family of Crazy waiting for you back home.
Luxury is having her at all.
We head to UCLA for an extended stay next month. We will be there until they are able to capture a seizure. The last patient he had that had similar seizure patterns (few and far between, but hours long once they start), was there for three weeks. If I’m honest, I’m feeling pretty lousy about it. I hate the idea of being separated from my others that long. I’m scared of being there and seeing the sweet faces and terrified tears of childhood cancer in the rooms nearby. I’m not sure how I’ll fare being cooped up that long in a hospital room with no one to relieve my post. I’m sad we have to do this at all. I hate the procedures and pokes and prods and sedation and high radiation MRIs available only at major research hospitals she will undergo.
But I’m so incredibly thankful. So beyond YELL IT FROM THE ROOFTOPS TO ANYONE WHO WILL HEAR how grateful I am that we can even do this at all. I hate it. More than I can possibly explain. But I say “Thank you, God. Thank you. Thank you. Thank you. You are good. Always. No matter what.”
I don’t know why we have the Luxury of services and technology and resources. I wish we didn’t need them. I often wonder what it would be like…
But I feel guilty and ashamed when I think of our brothers and sisters in other countries who have both: the serious needs and a lack of resources. I don’t know why we are so lucky in our Luxury. And I hate it. Even more than I hate epilepsy. I hate that it’s unfair and that I don’t understand and that there is nothing I can do to fix the great injustice that is Riches and Access.
So this morning, I bought a wheelchair. In the dark quiet of the morning and before a single stir from my family. It doesn’t solve anything. I don’t pretend to have a Savior Complex. But I’m grasping at straws to comprehend. So I will buy a chair. I will pray over my donation this morning. I will take a deep breath and go about my day.
My complicated, scary, atypical, sometimes stinging with Bitter, but still incredibly Luxurious day.