I am raising a medically complex child. As I’ve said before, it’s very overwhelming for me to see all of Grayson’s symptoms and issues listed in one place. Because he has so many of his body systems that are affected, he sees a lot of doctors. We have eight specialists, plus our pediatrician, that we see regularly.

I have a lot of respect for doctors. Grayson would be in a heap of trouble if not for the medical profession. We have a diagnosis and treatment plan because of aggressive doctors who dug for answers about my little boy. He takes medication and supplements that are keeping him stable and helping him to progress. He gets the nutrition he needs through a tube in his tummy and is now on the growth chart because of a doctor. I truly believe that all of Grayson’s doctors care deeply for their patients and want the very best for them.

But that doesn’t mean I always agree with them.

I am not a science person. I never liked science in school- I opted out of taking science my senior year in high school took geology in college because it was supposed to be the easiest one. I really wish I could go back to my 9th grade self and tell her to pay close attention in biology when they talked about the mitochondria. That one little label on a picture of a cell on that biology final now pretty much consumes my life.

I’m not a science person, but I now spend hours a week researching science-y stuff. I don’t particularly enjoy it, but it makes me feel more in control when I know something about what’s going on in my child’s body.

I don’t claim to be a doctor, or have even a fraction of the knowledge that Grayson’s specialists have. But guess what? I do have a lot of knowledge that I didn’t have a year ago. A lot. And I’ve met a lot of people who know a lot. So I don’t go into doctors appointments ignorant.

Today was challenging. Grayson saw a new doctor, who was very nice and respectful, but we don’t agree on one particular issue. I thought I did a pretty good job presenting my opinion and asking specific questions, but of course was intimidated talking to someone with a lot more credentials than me. But I do have one credential that she doesn’t have: I’m Grayson’s mom. It’s my job to make decisions for him, because he can’t make them for himself. I have to trust my instincts, keep him safe, and not worry about what anyone else thinks of me, even a doctor who probably thinks I’m nuts.

Doctors are amazing people, but they don’t know everything. And they don’t know my child like I do. It’s both incredibly terrifying and empowering that any decision regarding Grayson’s care ultimately is made by Ryan and me. And this is why this liberal-arts-brained-non-science girl will keep on researching, reading, and talking about science. Probably for the rest of my life. Oh, God certainly has a sense of humor.


  1. andmom on May 25, 2012 at 1:07 am

    I was the girl who refused to do animal dissections because they were too gross, and look at me now! God and his jokes. Har har God. Not funny, God.What I've learned is this: Doctors are people. No more, no less. People who know more about the human body than most other people – but they don't know everything. A lot of times they only understand academically the physiology of a disease, and not the reality of living with it, caring for it. They give their orders, and walk away. They're not emotionally invested, they can't afford to be really.So keep researching. Ask questions. Demand explanations. Follow your gut. And you'll teach them something as sure as they're teaching you.

  2. Erin on May 25, 2012 at 2:27 am

    For sure you have to follow your instincts!!! You have learned so much and grown so much, look at you being demanding. 🙂 very proud of you. And you know the whole Grayson, and that counts for more then anything!! Xoxo

  3. Courtney on May 25, 2012 at 2:37 am

    You are your child's best advocate – and I think you do an awesome job advocating for Grayson! He is very lucky to have a mother who does her own research and learning, and doesn't just listen to what the doctors always say. As you stated – you know your child best. End of story.Good for you!

  4. Amber on May 25, 2012 at 3:08 am

    I graduated from PA school and the best lesson I was ever taught was to listen to a patient/family when they say something isn't right. And with a rare illness like his, many physicians wouldn't know 10% of what you know. You have a good reason to be an expert and are definitely the best advocate for him!!!

  5. basebell6 on May 25, 2012 at 4:35 am

    AMEN!! You are such a good mom, too!

  6. Alex on May 25, 2012 at 1:24 pm

    That has to be so frustrating, doing all your research, figuring this stuff out, and then not being listened to by a doc. Way to go for being Grayson's advocate – you're doing a great job!!!

  7. Becky on May 25, 2012 at 4:02 pm

    You are sooooo right!!!!! It drives me crazy when people just blindly accept what the doctors say, just because they're doctors. You're credentials as G's mom as JUST as important as their MD's. They each know a part of G and his medical condition(s). You know him as an entire child. You are his advocate and his mama. And he's a lucky boy to have you 😉

  8. Coco on May 26, 2012 at 2:41 am

    Absolutely!!! *Most* doctors do their best, but they are still just people. YOU are the Mama. God knew what He was doing when He sent little Grayson to you. The purest form of revelation is from God to a Mother! He will absolutely give you answers, and ONLY you will know for sure what to do for the baby that God gave you. I know it's so hard to stand up to doctors, I know. It's a long hard battle. Before we knew what was wrong with my boy (when everyone except me felt that NOTHING was wrong with him) I had to fight tooth and nail every day, especially with doctors… and was even told flat out that I was going to cause problems for him by doing what I was doing… and then 2 months later, almost at my breaking point, they finally figured it out… and come to find out, if I hadn't stuck to my guns, he wouldn't have survived. God knew what He was doing, and I knew that he was telling me. Every day that I see my little boy alive, well, and able to eat (finally), I am grateful that God made me the stubborn Irish lady that I am. Keep up your chin Mama.

  9. Esperanza on May 27, 2012 at 10:12 pm

    I applaud you for taking Grayson's care into your own hands, for knowing that even though you must trust doctors to a point, that you should do your best to understand what is going on and in the end, make decisions that feel comfortable for you as Grayson's mother. He is a supremely lucky boy to have you as his advocate. Supremely lucky.

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