Type 1 diabetes affects Latino communities in the U.S. at almost twice the rate of non-Latino whites. HuffPost Voces’ Hirania Luzardo’s daughter was diagnosed last fall. This is their story.
On January 28, it will be 90 days since diabetes Type 1 became a part of my 8-year-old daughter’s life. That long night in October marked a before and an after, not just for her, but also for all of those who love her.
It’s been a short and overwhelming road filled with learning, with joys, sadness, mistakes, and successes. It’s been a road in which we grow up every day, no matter the difficulty of each new trial. No day is the same as the last one. We’ve matured like we never thought we could in 90 days, and we need to share our experience because many prefer to remain silent, as if there was a social stigma involved. We need to talk about it, acknowledge our mistakes, and celebrate the victories of raising a child who has a condition that affects millions of kids in the United States.
In the 90 days that we’ve been facing this battle, we’ve learned some lessons. If you are living with a child who has Type 1 diabetes, open your world to others. Many people out there need information, resources, and strength to keep on going.
The 13 lessons we’ve learned:
1. You didn’t do anything wrong. No one is responsible for this.
The first thing that a mother thinks after she receives the diagnosis is, “What did I do wrong?” You did nothing wrong. You’ll doubt that answer many times and you may even come to doubt your whole life, because science has no answer to this autoimmune disease. Don’t focus on searching for answers. Don’t waste your energies and the spare time you have trying to solve those questions.
2. There are no good or bad numbers.
This medical condition will lead you to become a slave of numbers related to glucose. Your life starts revolving around questions like “What’s your sugar level?” “Is it high?” “Is it low?” The glucose numbers are information that we give doctors so that they can better manage the condition. The problem is that the data are often accompanied by emotional and mental quandaries, especially from the parents, who are also affected by the condition in that sense. Rating the results as good or bad only feeds a sense of guilt, especially in children. Play with the numbers even if you don’t feel like it, even if a sense of sadness takes over you. And, of course, act when you must. There is no time to lose if your child is close to hypoglycemia.
3. You will have very bad days when you will often get depressed.
You will have days in which you teem with strength and optimism, days in which you seem stronger than everyone, days in which you light up the room and everyone asks you, “How do you manage to handle everything?” The truth is, we can’t. We make a great effort to keep the ship afloat, but there are many days in which you inevitably wonder, “Why is this happening to my child?” There are days in which you want to allow yourself to stay in bed, close the blinds, stay away from everyone and admit that you can’t do it anymore.
There are days in which depression seems like a good option, but when you feel that way you have to realize that you can’t afford that luxury, and that therefore depression can’t enter the equation. You must work on your strength of will to keep on fighting. Depression will only make our lives worse.
4. You need to ask for help.
I am a single mother, the household’s only breadwinner and I work in media. That is enough to make me say, “I need help.” At this time in your life, when you face the challenge of raising a child with Type 1 diabetes, you need to ask your friends for help, your family, or even a stranger who can at least show some solidarity on Facebook.
5. There is no better doctor than yourself.
You may have the best endocrinologist in the world, the one who gives you the most accurate balance between the insulin and the grams of carbohydrates that you must consume each day, but no one knows you better than you know yourself. My girl is the best at warning me when she is close to hypoglycemia.
6. You need patience to deal with bureaucracy in the pharmaceutical industry. You will spend hours on the phone. You will find bills every time you open your mailbox. Debts will grow. You’ll realize that you had good insurance right up until the moment you realized you had a chronic condition. You will cry in frustration when a vial of insulin slips from your fingers and breaks on the floor, and your insurance company refuses to replace it. Cry if you must, broadcast your anger on social media. Have patience. Your only choice is learning to navigate the multimillion-dollar pharmaceutical industry that supplies diabetics.
7. Life is not as “normal” as others claim.
It’s always heartening to hear, “She can lead a normal life.” We will be able to live with Type 1 diabetes, but it’s not normal to be connected to a glucose monitor 24 hours a day. It’s not normal to puncture your fingers to record sugar levels; nor is it normal to receive four shots a day; nor is it normal to carry an injection in case you faint or convulse. That is not normal.
8. You’ll have to listen to people who say that it might go away with sports and diets. Healthy eating, carbohydrate control and physical exercise help those who have Type 1 diabetes, but are not solutions, just like they won’t cure a child whose pancreas does not work and who depends on insulin. You can feed her the same food every day, exactly at the same time of day, and her body will always react to it in a different way.
9. You are diabetic because you ate too much candy.
It’s the most frequently asked question: “Did she eat too much candy?” My daughter ate as much candy as every other child, and she ate other types of food as well.
10. There is a lot of ignorance.
The truth is that we don’t know what diabetes is. There are a lot of people who think that we are irresponsible, that we don’t know how to eat healthy, and that we lead a sedentary life. Other say that my daughter has bad diabetes, and Type 2 is the good one. There is no good or bad diabetes. Both can be dangerous.
11. You are blessed if you have a good job.
You’ll spend many hours with doctors. Hours with endocrinologists, nutritionists, psychologists, diabetes educators. Dealing with a diabetic is nearly a full-time job. So if you have an employer who supports you and gives you the flexibility to fulfill your obligations, you are very lucky.
12. You must not lose faith.
Scientists have been working for a long time on finding a cure to diabetes. We don’t have it, and the truth is that we don’t know if our kids will have the privilege of enjoying that scientific breakthrough. The only thing that counts is how positive we are every day, how much faith we bring with us on this road.
13. There are “angels.”
In these 90 days, friends have offered their shoulders for us to cry on, they have given us solace at the hospital after long, sleepless nights. They have sent us flowers with messages of support. They’ve been patient enough to wait for us at work because they know we went through a horrible night. “Angels” have also arrived in our lives. Human beings with great compassion. Ms. Mari adopted Uma during her school day, caring for her as if she was her own daughter. Sometimes there are no precise words to thank someone enough.
This post originally appeared on HuffPost Voces and was translated into English.
