A big part of being a Medical Mama is being your child’s advocate. However, sometimes we forget to advocate for ourselves. I’d like to start this entry by saying thank you for your prayers, your kind words, and your support… But I’d like to use this platform to educate you on how some of these “kind” sentiments, frankly, don’t translate as kind—they hurt.
First, I’d like to set the record straight; my child isn’t sick. He’s not battling cancer or juvenile diabetes or a case of the measles. While he certainly has a full plate of medical conditions, most of Rowan’s obstacles are related directly to his genetics—his Coffin-Siris Syndrome. What does this mean? Well, like everyone’s DNA, Rowan’s genes are unique to him. There is no cure. There is no medicine. There is no by-the-book step-by-step treatment plan. Because this isn’t a disease, it’s a syndrome, and he will have it his entire life.
With that said, here’s where the “hurt” comes in… Saying things like “I’m so sorry” or “I don’t know how you do it” or “I could never do what you’re doing” aren’t helpful. I know you mean them to be, but they just aren’t. For example, what do you mean couldn’t do what I do? Of course you could! And likely would. Because when you become a parent you agree to do anything and everything for YOUR child. It’s what parents do, they love their children fiercely and unconditionally and support them through whatever life throws their way. I am so lucky to be this boy’s mama. He has taught me patience, resilience, and how to have a voice to advocate for him as well as for others. He’s taught me how to smile on the bad days and rejoice in the good ones. He has taught me how to love in a way I never knew I could. We all could learn so much from the innocence of a child. But it’s not like we have a choice. Do I enjoy being faced with heavy medical decisions or researching every diagnosis more in depth than most doctors? Do I enjoy the stress, anxiety, or sleepless nights prior to every sedation or procedure? Of course not. But it’s not a choice, I do it because I HAVE to do it. So please, don’t tell me you couldn’t do it, or say you’re sorry for me. You could do it, and there’s nothing to be sorry for—have you met Rowan?! He’s an awesome kid!!
I don’t want to belabor this post, so I’ll move on to my final thought, or plea really… Please, please, please STOP arguing with the diagnosis or treatment plan! Let me say this louder for those in the back: “WE HAVE A TOP NOTCH CARE TEAM THAT WE TRUST TO BOTH DIAGNOSE OUR SON AND DEVELOP A CARE PLAN FOR HIM.” When a child, or anyone for that matter, is given a diagnosis, I assure you it was not something just thrown out there or taken lightly. There were tests involved and research, observation, and discussion. So, when someone tells you about said diagnosis, whatever it may be, the worst response you can have is to try and refute it or to state all of the reasons it can’t be so. What that says to me is, “I don’t accept it.” I urge you to let that sink in for a moment and really think about it. This response is usually meant to be supportive, but simply put, it isn’t. Maybe next time
ask, “what were the indicators?” or better yet, “how can I support you?” At the end of the day, as a parent, seeking a diagnosis is important for insurance coverage, care plans, or sometimes even grants and monetary aid for those families in need. So, I’ll say it one more time, please don’t refute the diagnosis or treatment plan. Just be supportive.
I don’t say these things to be hurtful, or attack anyone. Dereck and I truly do appreciate all of the support and prayers and well wishes. My hope is to change your perspective to see things from my point-of-view. Be inclusive and accepting. Be understanding. Be considerate with your words. We are all unique and different in our own ways, and that’s what makes this world so beautiful. Be kind.