A Mother’s Lament

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I’m the mom of a sick kid. As of this year, I have become known for being the mom of a sick kid. It is often that I hear things like, “How’s your daughter doing? You know I’m praying for you both, right?” I value the thoughts and the words. But there are some things about being the mom of a sick kid that I don’t value.
My daughter is sick but doesn’t have a diagnosis. She has 8 doctors. Literally 8. Because she has so many doctors, we have a ton of appointments. Granted, they are not my appointments, but my daughter is my daughter and she depends on me. Because of her illness, she cannot drive, work, or play. She is 18 years old and life is very hard for her right now. In addition to that, she’s my daughter and I love her. People ask me, “Can’t your husband take her to her appointments?” The answer is, yes, he can and he’s willing. BUT- she’s MY daughter and I want to know what’s going on. I understand the medical side of things, I ask the questions, I speak with her and sometimes for her. This is not my husband’s forte. Yes, he loves her. Yes, he cares. People speak with judgement and talk, some assume that my husband takes no part of her life. This is simply not the case. My husband is amazing and has been my saving grace throughout this entire situation. It hurts when people jump to conclusions about him, they don’t know our situation.
My daughter has no diagnosis. This has caused more problems for her than I can possibly explain. To get part of the jest of it, today we were in the emergency room per her doctor’s request. She is vomiting like crazy, dizzy, and in a lot of pain. This time we’re looking at her gallbladder. The emergency room doctor said to us, “Why are you even here?” Later he said, “What do you want me to do with her?” I wanted to cry, but I couldn’t. They run tests. Lots and lots of tests. She has blood taken from her literally every two weeks or more. The blood comes back ABNORMAL EVERY TIME! But because the doctors cannot pinpoint the situation, they treat her likes it’s somatic (in her head or mental). Today’s tests concluded that, “Yes, we see that she’s in pain. We see that she’s sick. But she has no stones, we don’t really know why it’s bothering her. We need to do more tests.” More. Freaking. Tests. Lovely.
Having 8 doctors is confusing as hell. Here’s why. The doctor that was very rude to us today told my daughter that she needed to take ibuprofen and alternate with Tylenol. Here’s the catch, one of her doctors said absolutely no ibuprofen. Another of her doctors said, absolutely no Tylenol. She’s allergic to opiates. Um, okay? So what does she take? The response we receive is, “I don’t know.” Well thank you, that was very helpful. As usual. See the problem? Or how about the situations where one doctor diagnosis her with something and the other doctor says, “No it’s not that and here’s why…” Seriously?!
Doctors are judging her. Out of 8 doctors we have about 3 that have been extremely helpful and amazing. One we haven’t met yet. Dr. Sara Holzgen and Dr. Twesten O’Toole have been by far the best. They listen, they empathize, they also run a whole lot of freaking tests and don’t know what’s going on, but at least they care, and they do something about it. Unlike the emergency room doctor who treats us like we’re idiots.
Being the mom of a sick kid, you have to remind the doctors that they’re not looking at the whole picture. Doctor’s don’t like to be corrected. They become rude and arrogant, but somehow I always get them in a corner and they can’t answer the situation. For example, one doctor said, “I think it’s trauma and depression that’s causing her symptoms.”
I said, “Great, I diagnose trauma and depression. How is it possible that out of every person I diagnose I have never seen their white blood cell count quadruple with their trauma and depression and my daughter’s is?” Typically, what happens here is they cough. Yes, this is one hundred percent accurate. They freaking cough every time.
“(___insert cough_____) Well, Mrs. Cooper, I don’t know.”
My response, “Obviously. So you’re telling me that it’s not trauma and depression huh?”
“Well, trauma and depression doesn’t come back with all of the blood tests the way they are.”
“So, the kid is sick.”
“Yes. Something is going on with her. The markers show inflammation, infection, etc.”
“I get that it’s easy to diagnose mental health, but unfortunately this is not what we’re looking at. Trust me, I wish it were.”
“I don’t know what the problem is.”
“Then don’t assume mental health. We have a ton of tests with changes, with problems, with abnormalities, this is not explained with hypochondria. If she were a hypochondriac she wouldn’t have all the markers on blood samples.”
The doctors aside from the few mentioned above, hate me. They literally hate me. I’m judged before I walk into the room. A mother of a bi-racial kid. They treat us like we’re dumb. One actually asked me if I understood what research was. My response was, “Absolutely, I graduated from USC, I’ve conducted my own research and I’m published. In fact, I was going to go to medical school to become a psychiatrist. I’m pretty smart with medical crap. I don’t like blood, so I decided social work was good enough.” I can see it on their face the moment I open my mouth and start asking questions. Suddenly, they change their affect and start to talk to us like we’re human instead of sub-human. This fact alone causes me concern for people who aren’t educated. How are they advocating for themselves when the doctors are so judgmental against them? I will never treat my patients like this! Not ever.
I look at my daughter and feel helpless. She’s pale, she shakes, she sleeps, sometimes she doesn’t sleep, it’s been more than 24 hours since she’s had a meal, she passes out, she vomits constantly, she falls down, she gets dizzy, her head throbs, sometimes she’s yellow, she bleeds- a lot, she has fevers approximately 3 days per week, she cries, she sweats for no reason, she has severe pain, there’s a ton more I won’t mention due to her dignity. The kid is sick. I become fearful. How much of this is too much?
These days, U of M is our main focus and somewhat our only hope. Her doctors are excited to hear the results from U of M. The assumption is autoimmune. Each system in her body has been attacked one way or another- hence the 8 different doctors each with their own specialty. So far, cardiovascular is the only system I can think of that hasn’t been attacked.
When people tell me they’re thinking of us or praying for us. I Thank you. For those who judge us, back off. It’s not your business if my daughter is spending time at her boyfriend’s house, she’s lost her friends and he’s someone who supports her in all of this. She deserves to have something to look forward to. When people tell us that one doctor is better than another. Stop. We’re navigating this the best way we can and some of the doctors treat her well and we like them. When people tell me that I shouldn’t allow this or need to do that, stop. You have no idea what this is like and how hard it has been. Also, please stop trying to tell us about homeopathic remedies. Vitamins and yoga are not fixing this. She is sick. And the next person to tell her to “toughen up” or “get over it” or “you have to get on with your life” I swear so help me God I may end up choking them. You have no idea how tough this kid is. You don’t see the sickness. I do. JUST STOP IT! And before anyone else decides to judge us, think to yourself, if you had a kid that was sick and was fainting, feverish, vomiting, sleeping, bleeding, and in pain one hundred percent of the time, would you want this advice for them? The answer is probably not, so please don’t give it to us. This has been hard. Show some respect.

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