Killian’s Mama Speaks Up – A personal perspective on being part of your child’s healthcare team

Melissa and baby Killian

Illness can be incredibly isolating. Even with immense support from family and friends, when a diagnosis or condition arises, reaching out to those who know from first hand experience how difficult it is, can provide critical comfort. We share stories so that others may know they are not alone. 

Killian’s Mama Bear Speaks Up is the second of a series of shared stories from Melissa Nail, who will be stopping by frequently with tales of her son, Killian, and her experiences as the mother of a child with a chronic condition. In this post Melissa shares her thoughts on finding a balance and being the best advocate for your child in the healthcare team. 

Pooh Bear, Smoky the bear, Grateful Dead bears…

There are a lot of famous bears out there. As the mother of a chronically sick child, the bears I hear the most about are mama bears. Mama bears are well read, have keen medical insights, and we are given a green light to protect our cubs from any and all threats.

We can also be some of the rudest mother-mamas ever.

I was recently in contact with a mama bear who had her little baby in the hospital. She was irate because she had been “promised” an extubation, and her medical team was “screwing up” because they were going back on their word. She felt her disappointment gave her leave to verbally ream her caretakers. Her rude behavior was justifiable, though, because she was just being a “mama bear.”

Gross.

I am all about protecting my son, and I understand the motherly instinct to defend your own. I once watched a radiology team try to insert a PIC line into my hard-to-stick son for an amount of time I don’t care to mention. You can bet your Vera Bradley diaper bags that I wanted to take that needle and jab it into someone’s eye. Repeatedly. But I restrained myself, and protested calmly. My reasons were threefold.

Number one, my little man may be small, but he is already learning from our behavior. At no point in life do I want my children to think that it is okay for me to mistreat another human, be it verbally or otherwise. I don’t care how noble the cause is, there are ways to find middle ground without imploring rude behavior. I do not need to prove my love for my kids by being aggressive, but I do need to show my love by being an example. I will not teach my kids to bully, for any reason.

Number two. I realize that the existence of Web MD and various online forums/support groups have given all mama bears a license to practice medicine, except that, oh wait, they don’t. We are not doctors.

Don’t get me wrong. I love support groups, I belong to several, and I have gathered valuable information from parents I now consider dear friends. But when we as mothers get into doctor-bashing and self-diagnosing, I try to stay on the peripheral. For starters, I don’t have time to become the foremost authority on heart disease in my area. I have a sick baby, who requires extra care. When I’m not doing normal baby things like, oh, I don’t know, inserting NG feeding tubes and checking heart rates and blood saturation and changing tracheostomy tubes, I am the world’s most befuddled secretary. We juggle three specialists and one PCP, physical, occupational, and speech therapy, home healthcare, nine prescriptions, monthly medical supply delivery, and all the case workers/supervisors that go with it. If there’s a mom out there who can do all that and still diagnose better than my trusty cardiologist, I want to meet her. Seriously. I need to know when she washes her hair.

Really, I understand the pressure that goes into so many doctor visits. As a mom, you want to be taken seriously. Sounding educated and knowing your stuff is a good way to do that. You will lose points, though, if you’ve fumbled things on your end. You can correctly identify a West Nile Bird Swine Hybrid (I made that up, no one panic) but if you can’t rattle off your child’s medicine schedule, you have dropped the ball. My advice is to keep up with your medical records, and make sure you have done paperwork so everyone has the information he or she needs. Always know your medications, your diagnosis, and your immunization information. Know what you need to know, and if you have room in your life or your head after that, I award you so many awesome points.

My third point goes hand-in-hand with what I was just saying. The mama bear attitude can be counter-productive. I grew up ten minutes from the Texas border and I am a firm believer in the saying, “you can catch more flies with honey than with vinegar.”

Whether we like it or not, doctors and nurses are people too. They make mistakes and say things they shouldn’t. They, like the rest of us, have a work mindset and a home life. They will want to spend more time in a room filled with pleasant people, it’s just human nature. More time means more opportunity to observe and make correct diagnoses, so nurture your relationship with your care team! Try to trust them. The way I see it, most people who go in to the health industry do so because they are good-willed humans who want to make a difference. No one is going to intubate a baby for kicks and giggles. They are doing it because she can’t breathe on her own. Period. If your kid is chronically ill, going all mama-bear on a nurse who “hurts” your kid when giving an IV is counter-productive. News flash. Your kid will have hundreds of pokes in his/her life, and all you are doing is instilling fear in your child and teaching them that all pain is bad. Some pain is beneficial, like when it saves your child’s life, or helps you lose the twenty extra pounds you put on when gestating your little cub. Or at least, that’s what I hear. My baby twenty and I are still close friends.

To wrap up, if you don’t know who the mama bear on your floor is, congratulations: you probably are that person. So, do yourself and your kiddo a favor, and be kind. You might see that your doctors trust you more, after you start exhibiting faith in them. It will probably make your experience a lot more positive. And God knows, our kids need positivity.

In this post, a number of parents whose children spent time in the NICU share their tips.