By Tammie Allegro
When I first came to work at FFF Enterprises, the company that publishes IG Living magazine, I knew nothing about intravenous immune globulin (IVIG). I couldn’t name a single primary immune or autoimmune disease. But, once I got settled and started to learn about the IG community, I was dumbstruck by the number of diseases that I had never heard of. I began reading IG Living all the time, taking home issue after issue to learn as much as I could.
It wasn’t long before I learned a tremendous amount about IVIG, illness statistics and disease states. Then, I met Tyler and his mother Raschelle, and quickly realized how little I knew. Statistics are one thing, but when you put a face on a disease, it adds a whole new dimension. The education I have received from my friendship with this family is priceless.
As the mother of a child who has primary immunodeficiency disease (PIDD), Raynauds phenomenon, eosinophilic esophagitis (EE) and steroid-resistant asthma, Raschelle is a warrior - she has to be. In the 17 years that her son has been on this planet, he has had so many surgeries and hospitalizations that you almost lose count. She hasn’t lost count. With obscene detail, she can recount the many trips to the emergency room, as well as the countless doctor visits and close calls. She can also recount for you the millions of times that she has answered the question, “Is he really that sick?”
When your child has an illness like PIDD, there is nothing obvious for the world to see. And, those of you with chronically ill children know that this presents many challenges when trying to care for and nurture your child.
Raschelle can recall with great clarity the first time Tyler stopped breathing, his first trip to the emergency room and his first IVIG treatment. The amount of detail stored in her brain is amazing. She speaks like a doctor with 20 years of experience practicing medicine.
According to Raschelle, when your child gets really ill, you quickly find out what you are made of. First you fight for appointments and tests, then you fight for diagnosis and treatment. Socially, life is a fight as well; you have to fight for your child’s right to be safe and healthy by keeping them away from other children who might be sick. Raschelle has constantly fought with a system that was created to keep kids in school and, therefore, loses sight of those who are chronically ill and may need to live by different rules. She also has fought with insurance companies over claim processing and denials. In a sense, Raschelle is fighting with the world to get them to understand that her son is really sick.
Spending your whole life fighting might cause some people to become angry and bitter, but not Raschelle. She is simply resolved to stay focused on what matters most. When asked why she never backs off or gets discouraged, her answer is simple: “Because I am his mother.”
What about you? Share some of your fiercest mothering moments, and offer some tips to parents who are just starting on this journey.