I watch you and I worry. Sometimes your pink cheeks signal what lies ahead. When I see a slight tremor in your hand I know you are fatigued and your body needs fuel.
Frequently, I am urging you to eat and drink. In reply; you begin to raise your voice. There may even be an outburst of anger and tears. You cry many different tears. Raindrop tears, that trickle down your cheeks like gentle rain runs against a window, Thunderstorm tears that are fast and furious, and the torrential downpour which fall hard and steady.
You raise your voice in anger. I raise my voice in fear and frustration. I plead with you to drink your milk. You refuse and the outburst continues. I hold you, hug you, coaxing and pleading. Only minutes after you have finished your milk, you say you’re sorry. Sometimes, while you are eating your crackers and cheese, you tell me that you feel better. When it is over, you often tell me that you love me.
I will always love you. You are my daughter and I will never stop. I will never stop looking for doctors who do not roll their eyes at your complex biochemical patterns that define your diagnosed metabolic disease. I will never stop looking- for more ways to improve your health- and better methods to manage your disease. These are my lifelong promises to you.
For today, your charm, your intelligence, even your beauty tells the world you are simply a typical little girl. And if others see you beginning to grow angry and aggressive- they may question your bad behavior. And for now, that’s okay, I choose not to tell them any different.
I don’t tell them we are waiting for the appointment date to test your brain and heart, and that we hope that both will be okay, unlike like your little sister. I may not tell them that a metabolic disease is the basis of your bad behavior.
For just a little while longer, I will hold this close to my heart, with my dreams, my fears, my hopes and my heartache, daughter of mine.