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.
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Tears and feeling ashamed for what I think is a tough day. Prayers for your family.
No shame. I have plenty of really crappy days that have absolutely nothing to do with epilepsy. Bad days can be giant messes and grumpy kids. I GET THAT.
I can’t stop crying, for the messiness of our lives and for the luxury in them as well. So beautifully said. Thank you.
THANK YOU for this. You have put into words how I feel. I have a newly diagnosed diabetic 16yo son. We are 6 months, 29 weeks and 2 days, 205 days, 4920 hours, 295,200 minutes, 17,712,000 seconds
into our diagnosis and the PA and endocrinologist are still fighting and we are still hanging in there fighting to keep good numbers each day. But THANKFUL! Thankful for a caring doctor that called me, choking back the words and tears “You have to get Samuel to the hospital. His sugar is 428. He has diabetes. I am so sorry. I never suspected this at all.” THANKFUL for a team of doctors at a highly rated children’s hospital, ready to help my son live. THANKFUL to God that, even though his sugar was 595 at arrival, he was coherent, talking, answering questions, and amazing doctors. THANKFUL for a team that educated us, helped build confidence in my son, and were so genuinely concerned for our family. THANKFUL for endocrinologists that are on call 24/7 for my questions. I still get mad. I still get jealous of other families that go about their day without a care in the world, while I am constantly wondering at every symptom if he is low or high? Did we bring enough insulin? Is the insulin too hot or too cold? Will I need to use our Glucagon? Will he make good food choices? Will he grow up and hate life or will he thrive and not let this bring him down? I have been amazed at his strength! He has learned very quickly, worked very hard, and brought his A1C down from 15.3 to 5.2 in 3 months. I am beyond proud of how he has just “rolled” with everything life has thrown at him. I am so proud. Thank you for this article. I know diabetes is not the same as epilepsy, but you expressed how I feel!
Thirty-five years into this diabetic life you are learning. You and your son are particularly in my prayers RIGHT. NOW. May you be overwhelmed by God’s peace
From 15.3 to 5.2 in 3 months??? He’s a ROCK STAR! My sweet love (not really mine, but like a grandchild) was born premature and deaf, then diagnosed with Type 1 at 3. How is that fair? Yet this kid has faced it all with a sweet spirit and determination that puts us to shame. A healthy, smart, articulate 13 year old now, I feel more sorry for those with less charm, spirit, maturity or heart. Our boys are gonna be fine, Angela.
Thanks for writing this. Beautiful post. Made me cry a lot. I will be praying over your hospital stay next month. I wish we were still in SoCal and I could come give you a break or bring you a coffee.
Wow, beautiful. Here’s to the good, bad and ugly that makes up our everyday lives. We should all remember how lucky we are to be in this country, with access to these medical advances and also, try our best to remember those who aren’t in our position and give back as best we can. Wishing you safe travels to UCLA.
Talking out of both sides of your mouth has such a negative connotation– and that is not what this is! This is the ability to put the shoe on the other foot, to see things from both sides, and you are spectacularly beautiful because of it. You are an amazing mom and incredible person because you can somehow wrap your head around the fact that things are hard and that is bad, but they could be worse and that is good. Goodness gracious. Please don’t ever, ever stop sharing your beautiful story– your heart is so so good. I’m so glad there are four little people in this world growing up under your care. <3
You have such a beautiful way with words. Our situation is nowhere near as difficult as yours, but I understand on many levels. Our son has life threatening food allergies and most likely asthma. We can’t go on long plane rides, or really vacations at all because he has so many allergies. We’ve had to call 911 a couple of times and I have so much anxiety when I leave him with someone. What if they don’t recognize the signs and don’t administer his EpiPen in time. I sometimes get caught up in the fact that it’s not fair I have to cook every.single.meal he eats because eating out isn’t even an option. It’s not fair my kid could die because some kid ate a pb&j before playing on the playground and didn’t wash his hands. It’s lonely that we don’t get invited to people’s houses because of it. Mostly I am so grateful for our amazing son and the fact that we do have life saving medication when we need it. But sometimes I just really wish he wasn’t afflicted with it and he could live a normal life. Much love to your family and good luck with the hospital stay!!
Your situation is every bit as difficult. Don’t downplay your life and your son’s struggles. It’s all freaking hard. Love to you mama.
Thank you for putting into words what I can’t. I feel the same way and have always struggled with getting this across to family and friends without insulting anyone . My 10yr old has had epilepsy since age 3 and I get it. I’m sorry you have to deal with the scariness of it all. It sucks!
Wow. What an amazing post, yet again. I love that you can put into words such amazing emotions, and let us feel them, too. Because it helps us to be more human. More real. More understanding. Because, as I’m reading your post, I’m literally looking up travel plans to New Zealand and Australia for her 60th in August. And I can’t even imagine a life where that would not be possible. But I also just came back a month ago from spending 3 weeks in Haiti, providing medical services to the “other hand”, the people that are in desperate situations, and don’t have the facilities and health care to help them. So, thank you for sharing. Even when it’s hard, even when you think words fail, even when you think it doesn’t matter. It does. All of it.
http://livingtherealworlddream.blogspot.com
Wow. I just found you through Not the Former Things and, just, wow. My heart is so touched by this story and I am typing through tears. We will be sending heaps and buckets of prayers your way. That they capture the seizure soon. That the stay is better than you expect. That you get answers, and helps. I am off to read your entire blog now. Big, huge, gigantic hugs to your family.
This is beautifully written and an incredible reminder to be thankful for all my luxuries, big and small. Will be praying for your whole family. Perhaps you could ask for cards to be sent to add a little sunshine into your hospital stay for you and Jill? I would love to send a card (and a cake, but I don’t think the cake would make it from Iowa).
I love your attitude and your gift with words. My son has autism, epilepsy and a benign brain tumor. Every once in a while, I long for the “normal” life that I see my friends living. It lasts for a split second because then I smile in the joy of knowing how loved I am by God. He chose me-yes, chose ME and trusted me to raise one of His most precious gifts. He knew I could do it and He is there with me and for me every day. Some days are hard, but like you, I chose to focus on the joys of little victories, little luxuries and a whole lot of love. God bless you and your family. I will keep you all in my prayers and pray that you receive the answers you seek.
Well you have me in tears this afternoon. It’s amazing how God knows exactly what your heart needs to hear and puts it right in front of you. Your words truly spoke to me today as I have forgotten recently how even though I may be envious of the luxuries of others that my own life is overflowing of it’s own luxury. Thank you so much for the reminder today.
loved your post. Where did you purchase a wheelchair? My son has the same walker as Jilly had. I would love to be able pay forward the kindness and generosity people have shown us.
Never mind, apparently I don’t read closely enough. Saw the link
Smiles for Scarlette can totally relate to you, Jeannett. Check out their Facebook page when you get a moment. I’ve shared your link with them, too.
Beautiful and eye-opening and understanding and just incredible. How you can allow people such a glimpse into the bittersweetness that is any life struggle, all while pulling us towards an ultimate attitude of thankfulness towards our Creator. You have a gift. He has given you such talent. Keep keeping on mama, you are doing an incredible job!!
Beautiful. I will be praying for you and Jilly during your stay.
This comment doesn’t actually have much to do with your post (although the post was poignant and lovely and the last thing I’ll read before I turn in for the night, and for that I’m thankful), but I just had to tell you…. The first chore I tackled this morning was to empty my (luxury of a) dishwasher. And I cringed, and then smiled, because it made me think of you — it will probably always make me think of you now — and I prayed for you and for Jill this morning. So. Amid all the luxury that this suburban Ohio housewife/mommy/daughter of the King tripped over today…..you and your sweet littles are being prayed for, and lifted before our Father, and just know….we’re in this with you. xoxo
The first time Aiden had a 72 hour video monitored EEG I was struck by the irony that I was praying for a seizure to occur so it would be captured for answers and treatment. My brain cannot comprehend that reality. To pray for the thing I dread and despise does not make sense. Yet, I’m praying Jilly has a seizure. Quickly. Praying that they get the information they need, that she recovers quickly and that you are all back in that fabulous home together before you know you were gone. And I’m praying for you Mama, to remain strong in the wait. May our prayers be as Aaron and Hur, to hold your arms while the battles is won.
Beautifully written. Thank you for sharing your story. I lost my 7 month old daughter to a seizure disorder just over I year ago. Life can be incredibly cruel & unfair. But as hard as things are, I do try to remember that there are so many others out there struggling, & that there are still things to be grateful for. Wishing you all the best.
I’m glad you share. Thank you for showing all the different facets of what luxury can mean and what it does mean to you and your family.
I know that’s not why you write this, but still I do admire you very much for having that perspective and sharing it so freely, for being so grateful for all of your life when some of it is just so hard. And I imagine it must be a great gift for your children how strong you are for them, but not in a steely but a tender, affectionate, loving, sanguine way. I know that doesn’t help one bit, but you are such an inspiration to me.
Thank you for including the term medically fragile. Thank you for the whole post, but as a momma whose child gets left out of the conversation because she “seems normal” it makes me feel seen to know you count her among the tribe
Hi,
You really pined down some really good perspective on life in general with your story. These are thoughts I aften think about coming from the extreme “luxurious” Norway living with my small kids in India.
Thank you for sharing, I wish you and your family all the best.
First time I’ve ever read one of your blog posts and I’m not sure I can handle another one. Oh my gosh! I needed this but at the same time my heart broke for you. But only for the fear you have to live with. No matter what that sweet precious girl is 100% perfect. Honestly, I cannot wait to dive deeper into your blog.
SO MUCH of this. so much. different reasons, but I get it Momma. Isn’t it cathartic to write posts like this? Been doing it lately, too. Huge love and support sent your way! I hope your trip goes smoothly and successfully!
You are such a blessing. I’m sitting here in a hotel room hours from home with our son who has tuberous sclerosis, epilepsy, autism and asthma. Any one of those would stink, but altogether seems torture! But here we are again away from home, family and friends so we can be at a medical facility equipped to handle such. I’ve definitely had all the emotions you’ve so eloquently shared and ashamedly more. I too am a christian, but still humanly frequently wonder why him/us. Our family faces things that just aren’t even on the radar of most. Its hard!! Brain tumors, TSC, angiomyolypomas, angiofibromas, seizures, vertigo all these things I wish I never heard of. All the places things he will never get to go/do..its not fair!! But if not for the grace of God and the medical specialists we’ve had the “luxury” of having on his team he wouldn’t still be here. And I WOULDN’T TRADE 1 MOMENT WITH HIM FOR ANYTHING!!!!! Thank you for reminding me to keep it all in perspective today… Prayers for Jilly. My son prays for her too.. God bless!
don’t even think about stopping writing. ever. you have a talent to put into words feelings and hurts and joys that so many of us can’t comprehend, but can a little better now. you create connections for us and make it all a little more real.
love your words and your heart. Love you. Thank you friend.
i’m praying for big things…answers that come quickly at UCLA. I am truly blessed to have read your post. Thank you for sharing your heart and for using your gift of storytelling.
Beautifully written. It really hit home with me.
I have multiple chronic illnesses. Including depression and anxiety. Sometimes I just get so MAD. I get so TIRED. Why do I have to fight so damn hard just to be “okay”. Sometimes, you have to let yourself have a little pity party. A short one. Because yeah, sh*t sucks. But a lot doesn’t suck. Maybe there isn’t much that doesn’t suck. But I can grasp onto that one not sucky thing to get me through the worst times.
Heart wrenching and beautifully said. I keep your family in my prayers.
This is exactly how I feel. Thank you.
My daughter was diagnosed with leukaemia last year and it’s been hell on earth BUT I feel blessed. Blessed with family close by and to be in a good financial position. Blessed to be living in the UK where treatment is free and top quality. And blessed that she has the most common cancer and not something rare. But I also feel so sad she wasn’t able to start school like her peers last year and we’ve barely been outside our home in the last 7 months.
You put those emotions into words beautifully.
Lots of love to your beautiful girl and her strong family.
Tears. Just tears. I am so thankful for you. I don’t know you personally, may never meet you face to face- but I am thankful for you.
You write what I feel- things that I can’t put into words. You remind me over and over that I am not alone. That I am not a horrible person for feeling the way I do sometimes. That it’s Ok to be addicted to Dr Pepper and today you have reminded me to be grateful for all my luxuries.
Thank you for sharing your life, your thoughts, your photos, for sharing so much of yourself. I am thankful for you.
Just wanted you to know. In His name, Misty http://www.perfectlyphillip.weebly.com