I share this to bring awareness to lymphedema. While our journey of processing a diagnosis of primary lymphedema is highly specific, I believe that when anything is troubling your kid or troubling you about your kid, it touches every area of your life in ways that don’t always make sense. That can feel really hard, and it’s OK to admit it – we all have our Dalmatian costumes.
When something is wrong with your kid, your face hurts all the time. So you make an appointment with your dentist to figure out whether you’re grinding your teeth again or if your entire mouth has shifted overnight.
When something is wrong with your kid, you miss a work deadline because of a steep plummet down an internet hole while searching for a Dalmatian costume for your 3-year-old son. His 6-year-old sick sister wants him to be a Dalmatian for Halloween to go with her Cruela de Vil costume.
When people tell you they are praying for your sick kid, regardless of how you feel about religion or the veracity of their statement, you say thank you and mean it.
When something is wrong with your kid, you tell people and you don’t tell people. You live in a foreign country, so your best friends and family aren’t there. Some newish friends you don’t tell, and you don’t know why. But then you blurt it all out to the librarian when she tells you that you can’t rent more than one STEM tablet thingy at a time even though you are convinced having more than one STEM tablet thingy will make one of your kid’s weeklong hospital stays all better. The librarian then allows you to not only rent three STEM tablet thingies at a time but lets you check them out for two weeks instead of one, and her subversive breaking of all the library rules makes your face hurt even more.
When something is wrong with your kid, you feel unfounded yet absolute rage about a Carter’s brand Dalmatian costume on Amazon that is only available in size 12-months instead of 24- or 36-months.
When people ask how you’re doing, you don’t say terrible because it makes them uncomfortable. Instead you say OK in a truthful voice and then add two more true-ish statements, so they don’t catch your lie.
You start running through the woods instead of on the street because, on your normal route, your face hurts too much. Instead, you tear through tree branches and bound across rocks like an animal being hunted. You don’t tell anyone this.
Because you cannot think about the long-term repercussions of her condition, you wrap it up very carefully in aluminum foil as you would a peanut butter and jelly when you don’t want the jelly to leak into her lunchbox. Then you shove it to the part of your brain that knows it still needs to call Fidelity about transferring your 401K or IRA or whatever it is from four years ago. Instead, you spend inordinate amounts of time thinking about whether your son can possibly be stuffed into that 12-month-old Carter’s brand Dalmatian costume, and if so, you must act now, because shipping to Italy always takes forever.
Sometimes your sick kid still drives you crazy; when she kicks her brother even though he’s three years younger and doesn’t yet understand what is his versus hers; when you go in the grocery store and she begs and whines for 1000 pieces of crap that she desperately needs at that moment. But your lack of patience almost comes as a relief because if she was dying, you feel certain she would never annoy you.
When something is wrong with your kid in a foreign country, you become fluent when speaking to your kid’s first grade teachers in words you never expected — lymphatic obstruction, lymphedema, malformation — but you’re never able to properly say you’re scared. Not in a cute poignant way because it’s hard to admit (it is), but because the “a” and the “u” and the “r” all together in Italian never sound right coming out of your mouth.
When you have a sick kid, you fill up an entire virtual shopping cart with random stuff from Kohl’s, a store you’ve never actually been to, because if you reach $75, you get free shipping to Italy on the Dalmatian costume you finally located in size 24 months which you think you can make work.
When this same Kohl’s Dalmatian costume order bounces back the next day saying it’s now sold out, even after you received the order confirmation and your credit card was charged, you slam your computer shut, wondering what you did wrong.
You start marriage therapy because you cannot bear for one more thing to break.
When something is wrong with your kid, you are tough and brave all the time. At least everyone tells you that.
But when you get in the car alone, it’s like that one time you put your kid’s frozen juice box in the microwave. You forgot it had that trace amount of metal in it until the microwave caught fire. And in the car, suddenly that aluminum foil package that you so carefully stowed away is making you cry. And suddenly your face doesn’t hurt anymore. You wonder if your teeth stopped shifting overnight.
When a Carter’s brand size 36-month Dalmatian costume arrives in the mail from a friend, a friend you do not even remember telling about the costume, you sob.
When something is wrong with your kid, before you go to bed, you lift your kid’s sleeping body out of her bed to take her to the bathroom. She is getting so big, you stagger a bit under her weight. As you carry her back to her room, you cradle her sweaty body to yours and sniff her neck and brush your lips on her cheek, whispering in her ear, “you’re perfect, you’re perfect, you’re perfect.”
And she whispers back, “I don’t want to be Cruela de Vil anymore, I want to be a Dalmatian.”
Lymphedema is a lifelong, chronic and incurable condition that results in disfiguring swelling in one or more parts of the body.
It can be hereditary (primary lymphedema) or it can occur after a surgical procedure, infection, radiation or other physical trauma (secondary lymphedema).
Up to 10 million Americans, and hundreds of millions worldwide, suffer from lymphedema and lymphatic conditions. If you or a loved one are suffering from lymphedema, know that you are not alone. For more information and resources on lymphedema, you can start here at the Lymphatic Network.
Please note: Lymphedema treatment isn’t always covered by insurance companies, and the necessary garments and treatments can be very costly, particularly for kids who quickly outgrow compression garments. Brylan’s Feat Foundation helps families who are struggling to cover costs for treatment. The foundation also hosts Camp Watchme, the first and only camp for kids with lymphedema. The camp provides a safe place where kids get to do normal kid stuff while also learning about their condition and meeting other kids with it. With the help of donations, this camp is made free for kids and their caregivers. To learn more, go to Brylan’s Feat Foundation.