Advocating for your Child in the Medical World: Part 1

This post is the beginning of a series that God willing I will be writing in the next couple of weeks. To be honest with you, I am completely unqualified to write this as I struggle with these things too – but in practicing respect and advocacy, I feel that maybe because I know and understand, I can still write although I am not perfect. As with all of my writings!

Respecting the Medical Field

There’s something to say about being in the hospital trying to advocate for your unstable child and keeping respect for the team of doctors working to figure out what’s wrong with your child. I’ve been there, and I have done that, and I continue to do that.

Balancing having respect for doctors and also realizing that they’re humans capable of making mistakes, is something that a lot of parents have difficulty with, including me, but that doesn’t keep us from striving to be better patients and to be better parents for our children.

A Different Perspective

Think of it this way. Your team of doctors is trained to work in a certain way. I’m sure you have a job that you were trained for. For instance, with me, I am a bookkeeper. I am trained to handle financial transactions and accurately code them into a system such as QuickBooks. If I were to try to tell a carpenter how I do my work, the carpenter would be left completely confused. The same goes for him. Trying to explain to me how to build a house or even a bookshelf, something simple, like a bookshelf, seems daunting to me. I wouldn’t even know where to start. Sometimes, because of this, there seems to be a shock that, “Oh my goodness, how could you not understand this journal entry? It’s so simple to me!” but when I try to explain it to someone else who doesn’t know it, it can become very difficult and very frustrating. Respect is sometimes thrown out the window, when in fact that is inappropriate. You are both simply trained in a different field.

This is the same way in the medical field. Except, the seriousness of it is amplified significantly. This is no longer a journal entry or a bookshelf. This is your child’s life. 

The Roles

Doctors: they’re trained to understand your child’s blood vessels, organs, every intricate detail of how their body works. They know what medicine does what, and how it affects your child’s symptoms or perhaps a risk of how it could make it work. They had to go to school, go through years of experiential training and tests – they probably wanted to quit several times, but they didn’t, for people like you.

Parents: You, the parent, are trained on your child. In fact, this training is something that is simply instinctual, especially for a mother. Mothers know their child best, and there’s no understatement there. You understand why they’re crying, what they’re hungry for, or when it looks like they’re in pain. You understand their sleep patterns at night. You understand what frustrates them and what doesn’t. You understand their likes and their dislikes. You love them and every part of them just the way they are. You, as a parent, know your child best. 

Do you see the difference here? Your doctor knows the way your child’s body was built more than you. They typically know how it works, more than you. Yet, you know everything else about your child.

In a medical situation, you need BOTH. You are PART of this team. Your knowledge, plus their knowledge, equals the best care for your child. The unfortunate part is, typically when you’re in these situations, your emotions are higher than ever. Your mama bear or papa bear comes out. You feel the most defensive, vulnerable, and afraid. So when a doctor comes in talking about the body this way and that, it is easy to simply take it as “you think you know this child more??” and vice versa, “You think I don’t know what I’m talking about?? You’ve never been to school!” I know we may not always say these things aloud, but I guarantee you both sides of the aisle have thought it. 

The Danger of Idolizing the Medical Team

I want to take a step back and recognize there is also the serious danger of trusting a doctor SO much that you take yourself out of the team. This is not good either! As mentioned before, doctors are not God – they do not have magic wands. The medications they give are not magic potions, they are chemicals and mixtures that affect your body in many ways. The treatments they give can be invasive – the decisions they make can be life saving or life threatening. Doctors are not to be idolized, they are to be encouraged and helped. We all need encouragement – especially those trying to use knowledge to help the human body work. With the ultimate care and protection of our Lord and Creator, who gives all of us the wisdom and knowledge to help one another.

The Team

Once you understand this crazy relationship between a trained professional and emotional parent, we see more easily why defenses rise, accusations are made, patience isn’t given, and understandable explanations are nowhere to be found. Perhaps, we as a community, should take a step back – think of who each of us are, and how we all fit into this puzzle.

I have had terrible experiences as a patient with doctors – starting from the age of 15. I fought for myself, my parents fought for me, and I thought I would never be at peace with the medical system again. Then, my daughter was on death’s door. And all of the sudden, the most loved part of my life was in a doctor’s hands – a medical professional that in my mind, was almost like an enemy. My creator gave me this experience to be humble, and to learn the beauty he has put in the minds of nurses, attendings, respiratory therapists, fellows, residents, – he gave them to my daughter, to accomplish a purpose. 

I sit here now, with a special needs child, and I am now realizing –

The medical team, it is a team. And I, as my daughter’s parent, am on that team. We are not fighting each other, we are fighting for my girl. We are all fighting for a cause, and that cause is worthy enough to pay each other respect and patience. So bear with me in these next couple of weeks as I broach upon the subject of Advocating for your Child in the Medical World.