We’re honored to welcome a new contributor this month. Meet Dr. Maureen Michele, life coach, author, general pediatrician, allergist/immunologist, and mama to three. She provides coaching and support to parents of chronically ill kids, and in this article, offers guidance to families facing a chronicle medical diagnosis in how to best support their kids through the journey. We happen to think this advice is great for families facing routine medical experiences, too!
Being a parent is challenging enough, but navigating a chronic medical diagnosis with your child can be particularly overwhelming. It’s natural to feel scared and uncertain, but there are steps you can take to advocate for your child’s comfort and manage your own fears and overwhelm.
Everything seemed to be going according to my life’s plan. I had worked tirelessly to become a mom, doctor, and Army officer—the culmination of my childhood dreams.
However, just like a sudden crash in the stock market, my world came tumbling down when my daughter was diagnosed with neuroblastoma, a type of pediatric cancer. The fear, uncertainty, and despair that consumed me during that time were unlike anything I had ever experienced before. I successfully navigated the challenges of surgery, chemotherapy, NG tubes, and central lines with my daughter and thought I could put the nightmare behind me.
Life, though, can be unpredictable and volatile.
Years later, I found myself standing in a small school bathroom, surrounded by medical supplies I had taken from my pediatric clinic. In this moment, my world once again came tumbling down when I became the doctor who diagnosed my 12-year-old daughter with Type 1 diabetes. Fear, uncertainty, and despair returned and replaced the pride, excitement, and hope that had been present after my daughter beat her cancer diagnosis.
When a child falls ill, the emotional and physical demands of caregiving can become overwhelming for parents. It’s easy to feel isolated and alone when navigating medical appointments, treatments, and caring for their child’s needs. Here are some tips for navigating a chronic medical diagnosis with your child:
Learn everything you can about your child’s condition.
As a physician and a parent, I learned firsthand the importance of continuing education when my child was diagnosed with neuroblastoma and later with Type 1 diabetes. Even as a medical professional, I was unfamiliar with the specific diagnoses that my child had. I made it a priority to seek out reputable sources and consult with my child’s doctors and other medical professionals to expand my knowledge. It’s crucial to remember that learning is a lifelong process, especially in the medical field, where new research and treatments are constantly emerging. By staying informed, you can make informed decisions about your child’s care and treatment, and advocate for them more effectively.
Prioritize your child’s comfort.
When surgery was needed for my daughter after her diagnosis of neuroblastoma, the anesthesiologist entered the room to discuss the final plan for the operating room. I knew from being involved in the care of pediatric oncology patients that kids receive chemotherapy through a central line, a special catheter placed in a large vein. This was an important tool in pediatric oncology, because it could be used to draw blood and administer medication like chemotherapy. It could prevent many blood-draw sticks and IV pokes, but it needed to be placed surgically in the operating room. No one had mentioned a central line, because no one was thinking chemotherapy would be necessary. I knew this was the moment I needed to advocate for my child.
As I searched for words, I felt my worry bubbling. Was I going to be heard? What if the anesthesiologist disagreed? I knew I needed to gather my courage and speak up because the only thing that really mattered was Kyleigh’s health. I looked at the anesthesiologist and told her if it looked worse than predicted and chemotherapy was going to be in the treatment plan, I was giving my permission to make sure they put in a central line, so Kyleigh didn’t need to go back to the operating room. The anesthesiologist understood and agreed. Tremendous relief rushed over me, dispelling any concern I had about speaking up.
Children may experience anxiety and fear during medical procedures and treatments, which can lead to lifelong trauma, if not managed properly. As a parent, you can minimize traumatic experiences by advocating for pain management, providing distractions like music or games, and ensuring your child’s emotional needs are met. If you notice your child is uncomfortable or in distress, speak up and ask for help from medical staff.
To develop the confidence and skills needed to advocate for your child’s needs effectively, you may consider working with a life coach who specializes in coaching parents with children with medical challenges. They can provide you with guidance on how to communicate with medical professionals, identify your emotional needs, and navigate any potential obstacles that may arise during medical procedures. By working with a life coach, you can become better equipped to support your child through difficult times.
Additionally, the expertise of a child life specialist can be incredibly valuable for families navigating a chronic medical diagnosis. Child life specialists are trained professionals who specialize in helping children manage anxiety and fear about medical procedures. They can assist your child in coping with their diagnosis, reduce anxiety during medical procedures, and help them feel more in control of their situation.They can offer tools such as books, play, and education to help ease conversations and create a more understandable experience for children. These professionals can help your child feel more at ease during medical procedures and treatments.
By seeking support for themselves and utilizing the expertise of a child life specialist, parents can feel more confident and prepared to advocate for their child’s health and wellbeing. With practice and support, prioritizing a child’s comfort can become a more natural and effective part of managing a chronic medical diagnosis.
Manage your own fears and overwhelm.
When my daughter was diagnosed with neuroblastoma and later diabetes, I lived in a constant storm with the storm clouds filled with “overwhelm.” This emotion rained down on me every day and I had no umbrella to protect me from the downpour. The feeling increased my fatigue and caused me to further ignore taking care of anyone except Kyleigh. I was not eating well. I was not exercising. I was not enjoying living my childhood dream of being a mom. It was a struggle. I thought that the constant lying about how I was doing would make the discomfort of being overwhelmed magically go away. I had often heard, “Fake it ‘til you make it,” but no matter how many times I said, “I’m fine,” it wasn’t changing the reality that I really wasn’t ok.
As a parent, managing your own fears and overwhelm while dealing with your child’s chronic medical condition is crucial. It’s essential to recognize that you are not alone in this situation, and there are professionals available to help you navigate the challenges you may face. Life coaches and therapists can provide a safe and supportive environment for you to express your fears and anxieties about your child’s condition. They can help you manage your emotions so that you can provide the support your child needs without transferring your fears and anxieties onto them. Taking time for self-care activities, such as exercise, meditation, or spending time in nature, can also help you feel more centered and calm.
Managing a chronic medical condition is a journey, and it’s okay to seek help and support along the way. By taking care of yourself, you’ll be better equipped to support your child through the ups and downs of their condition.
Talk to your child about their medical condition.
After I diagnosed Kyleigh with diabetes in the school bathroom, Kyleigh and I wiped the tears from our face in the school bathroom, grabbed her school bags, and dashed to the car. The car ride to the hospital started as eerily quiet. Both of us were lost in our thoughts.
After softly sniffling, Kyleigh was the one who broke the silence and said, “Mom, I have two things that I want to make sure happen at the hospital.”
“Ok, what’s that, sweetheart?” I replied.
“First, if they have anything to tell us, I want them to tell you first and you can tell me.”
I quickly replied, “Kyleigh, they are not going to tell you anything we don’t already know. The only surprise they could say is that you do not have diabetes, which would mean your mom is a moron. I am pretty sure I am not a moron, so nothing is going to be a surprise. What’s the second thing?”
Kyleigh said, “I don’t want anyone rushing.”
I was puzzled. “What do you mean ‘rushing?’ I don’t understand why you don’t want anyone rushing.”
“Mom,” as the sniffling got louder, “Every time that I’ve seen doctors on TV rush to take care of a patient, the patient dies. I don’t want to die. Please, no rushing.”
Talking to your child about their medical condition can be a challenging and emotional experience. This conversation in the car with my daughter emphasized the importance of having an open and honest conversation with them about their diagnosis. The conversation needs to be age-appropriate, and you can use tools such as books and role playing to help ease the conversation and make complex medical problems more understandable for young children. I have encouraged my patients to utilize resources such as children’s books and interactive play to help the child feel more comfortable and engage in the conversation.
Remember that your child has their own unique perspective, and it’s essential to investigate their thoughts and feelings about their diagnosis. Be open to listening to their fears and concerns and validate their emotions. Encourage them to ask questions and answer them as honestly and age-appropriate as possible.
Let your child know that you are there to support them through any challenges they may face. Assure them that they are not alone and that you will be there to help them in any way possible. Create an open and safe environment where your child feels comfortable expressing their emotions and fears without judgment.
Talking to your child about their medical condition is an ongoing process. Keep the lines of communication open and be willing to adjust your approach as your child grows and develops. Remember that by being honest and transparent with your child, you can help them feel more empowered and in control of their situation.
Advocate and disagree when necessary.
Kyleigh’s blood sugar was very high (900mg/dL) when she arrived in the Emergency Room at the time of her diabetes diagnosis. The physician who evaluated her told us the blood sugar value, but then told us that he wanted to get a chest x-ray to make sure it wasn’t pneumonia.
Pneumonia?! What was he thinking? She didn’t have a cough. She didn’t have a fever. I needed to advocate for my child. She needed fluids and eventually insulin, but a chest x-ray was not necessary.
“Sir, I don’t think a chest x-ray is necessary. Don’t you think she has diabetes?” I politely asked to steer him away from the chest x-ray.
“Pneumonia can cause electrolyte shifts, so I think it is important to rule it out. Let me be the doctor,” he replied.
I hate conflict. I needed courage at that moment, but I had none. Kyleigh needed an advocate, but I didn’t have the strength to fill that role. I complied with the order for the chest x-ray and helped take Kyleigh to radiology. I knew the chest x-ray was not necessary, but I did it anyway, and then I proceeded to beat myself up about it.
Some parents dread doctor appointments because the parent will be required to advocate for their child. When parents don’t think they have the courage to advocate, they become fearful and avoid the doctors. I am a doctor, though, so this reason for avoidance seemed silly because I shouldn’t be fearful of advocacy—but I was. Advocacy for your child involves agreeing, questioning, and perhaps disagreeing with a doctor, school official, or caretaker.
Advocating for your child’s health is crucial when managing a chronic medical diagnosis. Trusting your instincts and speaking up when you disagree with a treatment plan is essential to ensuring your child receives the best possible care.
When disagreeing with a medical provider, it’s important to actively listen to their perspective and ensure that you fully understand their reasoning for the proposed treatment plan. Ask questions and provide your own perspective and concerns. It’s okay to seek a second opinion or to request a referral to a specialist if you feel it’s necessary.
One way parents can improve their advocacy skills is by seeking the guidance of a life coach or therapist. These professionals can help parents manage their fears and emotions, and teach effective communication skills for interacting with medical professionals.
Open and honest conversations with children about medical treatments are crucial, but it’s also important to avoid having them witness any disagreements with healthcare providers whenever possible. As a family, presenting a united front on medical treatments can help prevent fear and uncertainty for your child.
In conclusion, being a parent is difficult in and of itself, and when a chronic medical diagnosis is added to the mix, it can be even more overwhelming. It is natural to feel scared and uncertain, but by learning as much as you can about your child’s condition, prioritizing your child’s comfort, and managing your own fears and overwhelm, you can effectively navigate this challenging situation. Advocating for your child’s health and wellbeing, seeking support for yourself, and utilizing the expertise of medical professionals such as child life specialists and life coaches can all make a significant difference in managing a chronic medical diagnosis with your child.
Remember, you are not alone, and with practice and support, managing a chronic medical condition can become more natural and manageable.
Maureen Michele, MD is an award-winning leader, life coach, author, and physician. As a general pediatrician and allergist/immunologist, she has spent her career caring for patients with a variety of acute and chronic health problems. She is a military veteran and has enjoyed using her story-telling talent to teach young physicians the art of medicine. She is an accomplished life coach who helps parents of chronically ill children regain control of their lives and thrive at fulfillment. Maureen is the mother of three amazing children and has first-hand experience with being a parent of a child with long-term health issues. Learn more about her work at maureenmichelemd.com and follow her on Instagram at maureenmichelemd.