As a newly labeled “special needs” parent, there’s a phrase that gets thrown around quite a lot:
“You have to be your child’s advocate.”
First of all, can I just say, my initial reaction to hearing this for the first time was, “Are you kidding me? That is absolute CRAP!” While I understand the surface sentiment of the statement, I feel like as a doctor, every single patient should be priority number ONE. All symptoms should be looked at, everything should be considered, and each child should be treated like their own.
But, doctors aren’t superheroes. They’re humans. Just average humans with a lot of student debt and a love of medicine. And, there’s only 24 hours in a day. They do their best (well, most of them), but kids fall through the cracks. Your kid’s lesser issues get pushed down the ladder of importance because the kid next door needs emergency surgery.
And, that’s why it is imperative, even though it shouldn’t be, that you are there. You’re present. Your face should be known by every physician that glides into your child’s room. When a doctor rounds on your child, someone needs to be there to listen, ask questions, and press them for their reasoning behind their decisions.
My 2-month-old baby can’t ask if there is a different medication for reflux we can try. It’s only me and his dad. We’re all he’s got. And, we can ask those questions.
As parents, you have to be strong enough to question the procedures they want to do, and the tests they want to run. Why? What purpose will it serve? Do the benefits outweigh the risks? Is there a less invasive way to get the information they seek?
If something feels off, you have to be there to yell, “STOP!” Who knows your child better than you? Absolutely no one. You know how he breathes, and when that breathing pattern changes. You know what calms her, what soothes her, and what agitates her.
From day one, you have been the historian of their lives. If not physically documenting it on your phone, it’s in your head. Any slight catch in their breathing makes your head jerk in their direction. You know everything.
Doctors are good. They do their best, and most of them are really awesome at trying to make sure your children get the best level of care. But, they’re not mom or dad; their heart doesn’t have a million strings tied to your child.
Being an advocate means denying a surgery, or begging for one; getting a second opinion, or firing a doctor from your child’s case. It has to come from you, because no one else has as much invested in your baby’s tiny life as you do.
It’s exhausting to live in the NICU. It’s exhausting to make sure you are there to weigh in on every important decision, and the minor ones, too. Those “couch beds” are uncomfortable, and the in-and-out of the nurses during the night makes a good night’s sleep absolutely impossible. Add a good deal of stress into the mix, and it can be hard to make it from one day to the next.
But, we are all they have. It is our duty as parents to make them the doctor’s number one priority, and to let them know that we will not be pushed to the side. Your baby has a voice… and it radiates from you.
You are your child’s advocate. It’s scary– you don’t know what you’re doing most of the time, you end up Googling the medical words immediately after they walk out of the room, and you nearly go out of your mind wondering if you’re making the right decisions for your child.
But, your tiny baby, or sweet toddler, or precious child is counting on you.
Be their advocate. Loudly. LOUDLY.