Month: May 2017

Dear Mothers of Imperfect Kids,

You have the hardest job in the world, a job with no instruction manual, and you have extraordinary circumstances because you’ve got a sick kid.

You have to take them to doctors and hospitals and blood draws and tests.  You have to understand what you’re being told, fight for your child, and then explain to them what the doctor said. Sometimes you have to hold your child down while the tests or the labs are being taken, and you hate that you are a part of your child’s suffering even if you know its for their own good.  You have to make the decision whether or not this illness presented before you is just a trip to the pediatrician or a larger trip to the hospital.  Can you manage it at home, or do you need help?  What if you’re wrong? What are the thresholds for taking them in anyway?

You have become very good at listening to your gut.

You have to measure out medicines, knowing that if you give the wrong dose or in the wrong order that you might hurt or even kill them.  You have to argue with the pharmacies to make sure you have enough.  You have to encourage your child to take them because they don’t want to.  They hate pills or the liquid tastes funny, or they don’t want to be on a schedule, or they don’t want their friends to know.

You learn how to use the medical devices, the ins and out.  You watch the videos, you read the blogs, you make decisions.  You become an expert in this tiny little area of medical technology.  It does not make you popular at cocktail parties.

You learn a new way to navigate the grocery store, the kitchen and your child’s dinner plate.  You learn what to avoid, what they can eat, and what they want to eat from the medically approved list.  You may have to restrict new items, or push more of something.  These are new battles on a well trod battlefield, food wars with your child and you find that you have to choose your battles carefully.

You have to answer all the questions of the loved ones, the people who care and really want to know.  You tell the story over and over, in an  upbeat way even if you don’t feel so upbeat.  You want the upbeat story to be the one your child tells when he or she is asked so you speak plainly and evenly, modelling the emotion.

You answer questions when other kids ask you why your child looks like that.  You wish you didn’t have to, wish their parent had taken them aside and answered for you, or told them it’s not polite to ask questions like that.  But they’re kids, and they are honest and they didn’t mean to hurt your heart, they just wanted to know.  So you take a deep breath, kneel down to their level, and try to explain why your child looks like that, or needs that medicine, or can’t eat that, or needs to leave early.

You answer questions when other mothers have them if your child doesn’t reach the same milestones.  You have a different normal.  You politely sit through the looks of pity or the awkward moments when someone says about their own child, “At least he is healthy” and then realizes that your child isn’t and doesn’t know what to say, and doesn’t know where to look.  You just smile a thin smile because you don’t know what to say either.

You advocate at your child’s school to make sure that every teacher, every administrator, every coach and the school nurse know what’s going on.  You make special provisions for after school activities and class trips.  You know what the difference is between an IEP and a 504, and you sit down with the child study team and the nurse both hoping your child qualifies and dreading the fact that your child qualifies.

You often have to quit your full time job or make it part time to accommodate the doctors appointments, the class trips, the hospital visits and the multiple phone calls to insurance providers, pharmacies, biotech companies, and medical providers.  It is what it is, but you miss your old job,  your old identity.

You have to help your child cope with their new reality, while also trying to hold it together to face your own new reality.  You cry when your child can’t see:  in the shower, in the car, late at night.  You wonder how life got this crazy, you wonder why this happened.   You realize that your child will have a challenging life. You have moments of despair.

Then you push past the despair because you have to.  Kids still need to get fed, lunches still need to get packed, laundry still needs to get folded, toilets still need to get scrubbed.  The world still spins even if you are in crisis.

You work really hard to be a mom.  You worry all the time if you’re a good one.  You worry about whether or not your child feels normal, even when they aren’t.  They are extraordinary and you love them for exactly who they are.  Their milestones are still incredible, their hugs are still amazing, their smiles still so sweet.  You are grateful for the moments where you can feel the pure, raw joy because of a success you’ve seen your child reach.

They are imperfect kids, but perfect to you.

So, Mother of a Sick Kid,  Happy Mother’s Day.  Because every other day is harder for you, today is sweeter.  I see you, and I hear you,  and I know you.  You didn’t ask for this extra burden, but you carry it nonetheless, and for that you should be celebrated.

The world may not know how hard you work, and your child may never know all you did for him or her.  But I know, and you know, and other mothers of sick kids know too.

Happy Mother’s Day, Mama.

You are loved.