When You Are The Medical Expert Of Your Medically Fragile Child

Editor's Note:  Katie Paulson graciously shared this post with us.  You can find the original blog and more like it on Katie's blog site, Without a Crystal Ball.

Emergencies have become a standard activity that is littered throughout my day as a mother of a chronically ill child. I feel like I am always putting out a fire that is creeping inside the body of my child. Whether it is his gastroparesis flaring and making his stomach hurt or giving him terrible gas, his asthma that decides to exacerbate, or his adrenal insufficiency that shows up under stress I am moving through every day from one emergency to the next. I have had to learn how to become a nurse to my child, but I have no medical background, and everything I’m learning about his treatment is on the fly. Over the years I feel like I have amassed the knowledge of human biology that some doctors don’t even know. I keep waiting for an “honorary” medical diploma to show up in my mailbox. I’m still sitting here without any “formal” education.

I know exactly what issues will send him into crisis

When we are in the hospital, I find it impossible to leave my son’s side because I know more about his symptoms, disease management, and how his body responds to treatment than the nurses and doctors treating him. I find myself noticing changes before it’s even on the radar of the expert, and I also see myself pushing for treatments, scans, labs, tests, or surgeries before a doctor even comes to that conclusion. I might not be medically trained, but I have spent the past five years walking with several diseases that are slowly killing my child. I have learned how to manage his endocrine, gastrointestinal, respiratory, cardiac, and autonomic systems with each day that passes. I know exactly what issues will send him into crisis, and I can anticipate changes in his health by merely watching how he moves, breathes and behaves. This knowledge often puts me in a precarious situation because I feel like I have to fight for experts to believe what I know to be fact. I see their eyes glaze, the way they shake their heads in disagreement, and how they analyze “studies” or “medical journals’ that tell them the opposite of what I’m saying.

...there is a difference between treating a disease and living a disease.

The difference between a Medical Mom and a doctor is we don’t have to read medical studies or journals to know how the disease affects our child. We can see it in the way they move, act, breathe, eat, and interact with the world around them. No study will convince us that what we see is inaccurate. We always anticipate crisis and health declines before it even registers on the chart of the doctor. By no means is this a slam on doctors, but there is a difference between treating a disease and living a disease. There is a significant difference between having a scientific connection and knowledge to the disease than there is to living the experience of the illness and seeing what it does to your child. Most of our doctors like research, facts, and to see patterns of behavior of the disease. All we need as parents are to look at our children slip further and further away from us each day.

We are challenged to get the treatment we need for our children because many times the symptoms we see in our children are not consistent with the diseases that are being treated. Most of us have learned over the years that our children react differently, have unique symptoms, and sometimes don’t follow typical patterns. This uniqueness makes it hard for many of us to get treatment, medications, or necessary surgeries to improve the health that is deteriorating before our eyes. We have to fight harder than most people to be heard because we don’t have medical backgrounds. Yet, we know that eventually, someone will listen to what we are saying, and we will prove to the experts that we knew all along what needed to be done.

We are making sure our kids DO grow up and survive to be adults.

Raising a child with a rare disease is profoundly complex for the parent. We are forced to learn disease management, take crash courses in biology, and learn how to advocate for medical care for our kids. Many of us didn’t have any of these skills before we had kids, and all of us are learning these skills on the fly. Is it any wonder that many of us feel burned out, stressed, angry, frustrated, overwhelmed, and hopeless? No. We have been put in a position where parenting isn’t just about making sure our kids grow up to be productive adults – but instead, we are making sure our kids DO grow up and survive to be adults.

Frequently, we are forced to make life and death decisions for our children. We face on-going trauma and manage emergencies daily. We have little time for our interests, friendships, and often our marriages suffer. We aren’t making plans for holidays or getting excited about birthday parties because we know that wrenches seem to get thrown in anytime we plan. Instead of dreaming about our futures we are living day to day, and we are hoping, praying, and fighting to give our children the chance to become adults.

Each day most of us wake up and “plan” for a good day. Rarely, many of us have a day where everything goes as planned. Our kids tend to keep us on our toes, shock our systems, and remind us that their diseases are the ones that are in control. We miss out on parties, social events, and we watch our friendships dwindle. Despite the isolation we face and the sadness, we deal with daily; we still manage to keep up a brave face for our children. As hard as it is to be in this world with our children, we know this is where we are needed.

We live tucked away from the world and to make sure our children are safe from germs and illness. Our worlds are lived inside our deep cleaned homes, and our memories of our children are marked in cuddles, snuggles, games, and finding creative ways to keep them entertained. This life isn’t always comfortable, it’s not for the faint of heart, but we all know that our kids need to live inside our little bubbles.

We are our child’s only real expert on their team – and they need us by their sides.

So on your toughest days remind yourself why you are making all the sacrifices you are making. Yes, it is hard to miss out on fun, lose friends, and find yourself alone most days, but all of these choices you are making are giving your child the chance to have a future. You are indeed the hero of your child’s story, and never forget that you are doing all of this out of love and because you know their lives are worth the pain, the fight, and the energy needed to meet that goal. You are one of the strongest parents out there, and each day that you get through another day means you won for one more day. Celebrate the small victories, cherish the days where your child feels good, and pray that one day your child will become the adult you’ve always dreamed them to be.

Keep on fighting, Medical Mommas – Keep on Fighting! We are our child’s only real expert on their team – and they need us by their sides.

Katie Paulson

Katie Paulson is a Freelance Writer, Blogger and Advocate for Individuals with disabilities. Katie has been featured on The Mighty, Yahoo Parents, Huffington Post Denmark, Mamamia Australia, Firefly Friends, and her family was featured in a Cover story in Fohla Sao Paulo, Brazil. She works tirelessly in her community to improve access and inclusion for children with disabilities. She is founder of a local support network in her community. Her goal is to ensure all individuals with disabilities are given the respect, rights and access they deserve to live a life of inclusion. To read more from Katie visit her blog Without a Crystal Ball.