And the Oscar Goes to...
This is what it’s like to have a child with serious medical issues: you know that you won’t sleep tonight because tomorrow you have the appointment. The one that you’ve been dreading that will decide the future of your family. You made this appointment. You called, gave them your sad story and your insurance information and begged them to squeeze you in even though this is the last thing that you want to do. You made the appointment, you will go to the appointment, and you will make your child go to the appointment because that’s what good parents do.
You get out of bed in the morning and chug some coffee. You tiptoe into your child’s room, sit on the edge of the bed and watch them sleep. You see their chest rise and fall, you hear their sweet child snore, and just for a moment, you forget that they’re sick. But then you remember why you’re here: to wake them up and take them to a place where they will be weighed, measured, tested, imaged and diagnosed. You don’t want this. You want to take them to the park and out for ice cream. You want your child’s biggest worry to be cup or cone, and yours to be whether or not they will spill ice cream in the car. You wish that you could give them this gift of a normal childhood; you wish that they could go outside and frolic in the sunshine like other kids today instead of going to the hospital. But those aren’t your children, and that isn’t your life.
You brush the hair out of their eyes, kiss them and whisper, “Wake up, sleepyhead.” At first, they smile, but then they remember, too. They insist that they don’t want to go; you say it won’t be that bad and you hope that you’re right and that they will still trust you tomorrow. They’re hungry, they want breakfast, but you must deny your child food because of the tests. Not feeding your hungry child seems cruel, but this is life with a chronically ill child, constantly subjecting them to short-term suffering for their long-term benefit; always being the bad guy while you’re trying to save their life. They don’t understand it, and you hate it, but it’s how it has to be. You will protect your child even if they detest you for it.
You make the long drive toward the thing that you want to flee from while your child repeatedly asks about food. It’s irritating, but you’re relieved that they don’t realize that they have bigger problems than hunger, so you promise food quickly after the appointment. You’re hoping it will be a celebration meal after receiving good news. This has not been your experience in the past, but you hope that maybe this time, things will be different.
After hours of waiting rooms, tests, charts and endless questions the doctor returns with the news that you feared. As soon as the words are out of her mouth, your child looks at you. You stand, stoically, and chant to yourself silently, I will not cry, not here, not now, I will not cry. You meet your child’s terrified gaze, and the tears are hovering at the edges of your eyes, threatening to escape, but you blink them back and nod your head, silently reassuring your child; it’s going to be alright. You turn your attention to the doctor and ask your questions in the most clinical way possible. The doctor, equally unemotional, answers your questions, walks out and you hold your child until they pull away. You reassure them that it’s going to be okay; whatever comes, you will never leave their side, and you will help them and nurse them back to health. The child’s body is heaving with sobs, but you remain stone-faced because your emotions are on hold; they must be postponed and dealt with at another time. Like a robot, you walk out the door, through the waiting room, and get into the car.
You feel like you just got out of prison; you’re so happy to see the sun, even though you just got the news that you didn’t want. You look at your beloved child, and suddenly you’re aware of what a great day this is. No matter how awful this day is, it’s a great day, because your child is alive, and not in the hospital, and you are together. You take them to the store and buy them that toy that they’ve always wanted, and then you take them out for a lunch that you can’t afford, because you have today, and that’s all that matters right now. This moment is everything, and you are grateful for it.
You enjoy this time with your child by pushing away the thoughts of what’s to come. You will not think about that now because you want to give them today. You will make them remember this day as an awesome day, the day that Mommy and I had fun and ate that delicious food. You smile and notice how much you enjoy spending time with this tiny human, and you know that the vows you made earlier are true. You will not take your eyes off this child for a second; you will give them whatever they need and be whoever they need for as long as they need, no matter what.
You arrive at home and your child, still riding high, goes off to play with their new toy. You tell the child that you need a shower, but you’ll be back soon. You enter your bedroom and close the door. Finally, you are alone. You turn on the shower, collapse to the floor and weep. You let yourself admit that this sucks and you and your kid deserve better. You go back to the bedroom, pummel your pillows and then use them to muffle your sobs. You cry and scream until you exhaust yourself, which doesn’t take long, because you didn’t sleep last night. You turn off the shower, wash your face, put some eye drops in, emerge from your bedroom and shout, “Who wants to go to the park?”
Do you have a chronically ill child? Are you exhausted from trying to be strong for them? How can you take better care of yourself?