Author and Parent

My goal for this book is to inspire and uplift parents and caregivers of children with congenital and/or chronic illnesses. It can feel lonely and overwhelming when you do not know other parents who have walked in your shoes. As someone who has walked in their shoes, and I am reaching out with my journey and lessons learned so that these parents can see that they are NOT alone. And that they are bigger than this new challenging journey they must now walk. By sharing my journey with all of its ups and downs, my hope is that overwhelmed parents will find one or two things that will help them navigate their challenging circumstances and be empowered enough to find their own voice to advocate for their child.

I want the audience to feel confident that they can manage all the details of their child's care and that their voice is crucial. Now is not the time to be silent and passive. Our children need us.

Imagine receiving news that your child has a congenital chronic illness that no one in your immediate circle has ever experienced. To whom can you seek advice or comfort? How do you cope? This is the story of my journey to becoming a champion and advocate for my son. I also share the lessons I have learned along the way, as well as a D.E.L.M.A.R. log to get your started with resources to record your child's vital medical information to help you navigate the plethora of medical appointments.

My son was born with a congenital heart disease and had many hospitalizations, five surgeries and countless procedures. I started my journey completely overwhelmed and terrified that I would lose my child. But I learned early on that by researching his condition, treatments, and medications, I felt more confident caring for him and was also able to properly advocate for him. My participation in his care allowed my son to trust me and trust the process, which positively affected healing process. 

Despite all that he had to endure with his congenital illness, he grew up to be the most positive, ambitious young man. He participated in sports and even ran track while in mild heart failure. If you meet my son, Delmar Jr. (DJ) today, you will never guess that he had been through all that he had to endure. He thrived because I became more than a parent, I became his advocator and shield. 

Millions of children are born or diagnosed each year with congenital or chronic illness. Often, it's difficult to find relatable reading material. This book gives insight not only to time spent with hospitalizations and doctor visits, but also the time in between. This book will also provide Caregivers and their caregivers with resources to effectively support their loved ones.  I want to help them get prepared for one of the most challenging yet rewarding journey's they will ever have.

In the blink of an eye, your life can change dramatically when your child is born with or diagnosed with a chronic illness. It is easy to become overwhelmed and feel hopeless and powerless. But as the parent or caregiver, you have all the power in the world to make a difference in the life of your child. You have the power to choose the doctor that works best for your child, as well as what course of treatment and medication work best for your child. You are paying the doctors you choose, not the other way around. The best advocate for your child is someone who is with them daily and can communicate how they are progressing between medical appointments. Once you realize this and gain knowledge about the diagnosis, you learn how important your role is and then you begin to feel confident and empowered. You can overcome anything as long as you take it step by step. Progression is key. With every step forward, brings new hope. 

Look for that bright light in the darkness.

Remember, 

1. You are strong enough to handle this journey and your attitude will make all the difference in the world for your child

2. By gaining knowledge about an illness, you become equipped to actively participate in all aspects of your child’s care

3. Allow your “village” to participate and take pressure off you and your child whenever possible

The DELMAR Log is the Daily Efficient Log for Medical Appointment Recording.

The log is designed to help individuals manage the vital medical health information for themselves and/or their dependents. The log stores information such as diagnosis for chronic and/or congenital illnesses, family medication history, allergies of any type, immunizations and vaccinations, past and current prescription information, primary care provider and Specialist information, dental information, vision, test results, surgical appointment reminders, customizable logs to record blood pressure readings and much more. Sharing accurate information with doctors on a timely basis, especially if you have a chronic illness and/or treat with more than one doctor, helps them tailor your treatment plan specifically to you and not treat you based on a plan from other people previously treated and/or textbook cases. 

There is no doubt in my mind that families will use the DELMAR log in slightly different ways that will most aid them. I encourage that. The hope is that you take the first step to organize your medical information.  

The mobile version of the D.E.L.M.A.R. log will be available soon.

Click on the link below to access the DELMAR log.