A message to those taking care of my medically-complex child

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To the staff overseeing my medically-complex child,

My child has been in this world much longer than you expected; thus I’ve been in this relationship with you much longer than I expected. If I could break up with you and find someone new, believe me I would (I’m sure so would you some days). But that isn’t possible; we’re in a dysfunctional relationship. If we recognize this together and just come to an agreement in this open-forum on a few things, maybe we can better understand and appreciate and trust each other again. First though, I want to thank you for being in your chosen profession and trying to help people like us explore this uncharted life. Even though I’m angry, distrustful and frustrated, I appreciate you, and I’m glad you’re in our lives. So here are my thoughts on how we can agree to be in a healthier relationship:

1. I know my child best, so please listen to me. I will not ask you to do unnecessary things that have a million-dollar price tag or contravene your ethics. My requests are always reasoned and well-grounded in research. Challenge me, absolutely, but don’t dismiss me.

2. Don’t act surprised by the summary (written or verbal) I’m able to provide you on my child’s history and conditions, even in the most stressful of situations. Your surprise is insulting. I, like many parents in my shoes, have taken the time to learn the language you speak, read the same articles you read, ask many professionals and other parents for their experience, interpretation, etc. So please don’t treat me like I’m some lay-person new to this environment. And even if I was, don’t insult the capacity of a mama bear to understand a completely foreign subject when her child’s life is at stake.

3. My child (and by de facto, me and my partner) is the president, chairman, decision-maker. You’re the analyst. Come prepared to our appointments, give us information and make a recommendation.  Be prepared to be challenged; we will challenge you. Yes, you’re the expert in your field. However, we’re the expert in our child. If you haven’t read his 11-volume file, don’t try to tell me about my child. You will get something wrong. That’s the root our relationship problem: distrust. When we challenge, don’t get annoyed, don’t get insulted. Inform us, educate us, and do so in a respectful manner. Our challenges aren’t meant to be disrespectful; they’re meant to ensure our child survives whatever it is you’re proposing.

4. Advocate with us. Don’t resist change to how you’re expected to treat patients, in particular, my child.  Note: Change is hard, I get it, but really you’re in a business of constant change. Don’t treat my child as if you’ve seen him before (once when you were in medical school 15 years ago, you may have seen something similar). Don’t treat my child as if you know for certain what will happen. You don’t. You’re not a psychic.

5. Just because we know (and live) with the reality that our child doesn’t have a long life expectancy, and we know you can’t “fix” him, doesn’t make it OK for you to dismiss us time and again and/or not offer the best possible coordinated efforts/information to help manage his health for the longest time possible. By not treating us as if he’ll be here forever, is assuring his rapid demise. For example, telling us, “Oh, we knew he had ‘this’ but didn’t know what it meant” after I sought the consult of the leading experts in his condition who then told you what ‘it’ meant, sounds like this to me:

We didn’t care enough about your child because he’s already outlived his life expectancy, and we know he’s going to die anyways, so we didn’t see the need to seek out the experts in the field to give us as much information as we could ever possibly need to help you make informed choices and offer you the best options for treatment.

6. Stress is our norm. It’s where I live every day. I haven’t slept properly since my child entered this world seven years ago. I constantly wonder if he’ll live another day. Or did I do enough to make his life great today? I have off moments when I’m a parent of a “normal” kid and yell at him for some normal childhood behavior and forget to apologize before tucking him, and I wake at 3 a.m. to realize maybe he isn’t breathing, and the fear grips my chest. All that said, I own these thoughts and emotions; I don’t need you to hand-hold me. You’re his professional team, not my caretaker. I have my own support network. Also, don’t sugarcoat things, don’t talk to me like I need your sympathy, and most of all, don’t withhold information so I’m blindsided two months later when all of a sudden he needs a procedure for something I never knew he had.

7. My two least favorite phrases from the past seven years that I hear more often than I should from you:

  • What did you do to your baby/This was caused by something you did in-utero.*
  • You are not like other parents.**

Not sure which one is worse, but let’s just stop saying either of them.

* For the record, I didn’t do anything to my baby; it appears that a genetic mutation occurred in my child. Guess what? It happens. All the time.

** Please stop comparing parents. We’re all different and have different stories. Get to know us, and realign your practice to the needs of the patient and the family.

You’re our analysts, our advocates, our experts, in a world we’re exploring for the first time. Let’s chart this path together with the common goal of seeing my child be successful and have the best life possible.

This article originally appeared in The Mighty and Mama In The Now.

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