On January 6, 2015, the life my little family knew was changed forever. Our son was diagnosed with Type 1 diabetes. Looking back on the past month, so much of it seems unreal. But there are rare times when I am alone--like when I'm in the kitchen preparing dinner--reality hits and overwhelms me. My baby. My only child. My miracle. My precious son with the big brown eyes and dimples. The once carefree, homeschooled boy who has his whole future ahead of him has a life-long, life-threatening illness. This is something, no matter how hard I try, I can't fix.
We have all coped relatively well, considering the situation. Jaxson has shown a remarkable amount of courage in the midst of this major adjustment. He has surprised us with his positive attitude. We were astounded that he was willing to do his own blood glucose sticks and give his own insulin shots only 4 days after being diagnosed. He amazes me every moment of every day.
But he doesn't know what I know. He doesn't fully understand the impact of this illness. I'm pretty sure he doesn't comprehend this being something he will deal with 24/7 for the rest of his life.
He wasn't around three decades ago when I helplessly watched diabetes slowly kill my sister. He doesn't understand the heartache I suffered watching this disease ravage her body and take her away at such a young age. He has no idea how much his mommy hates diabetes.
Looking back on the past few weeks, it seems strange that this has actually happened. Something inside me always had a feeling he would one day become diabetic. I'll never know if it was paranoia or a premonition...or a curse I had brought upon myself. Long ago after losing my sister, I uttered the careless words that if God ever wanted to make me pay for all the things I had done wrong, he would give me a child with diabetes.
Why did I have to say those words? Why was I so arrogant and brazen enough to challenge God himself? I'm rational enough to know that's not what caused his diabetes. But I'm a parent that will always question if there was something I could have done or not done to have spared my child from this fate. I'm so very human in the worst kind of way.
Diabetes seemed like the ultimate punishment because of what I had seen my sister go through--and what I had seen my parents go through in doing everything they could to keep her alive and give her a good quality of existence. I was there when they lost her to this disease. I felt their pain. It is still one of the most palpably excruciating experiences of my life.
Until now.
Now, I put on a brave face every day. I know my son will feed off my words, actions, and reactions. I know his attitude will mirror my own. So we don't talk too much about the disease. I give praise for his bravery. I kiss his injection sites and rub them with oils at night. I read inspirational stories to him about people who have gone on to lead exemplary, extraordinary lives in spite of having Type 1 diabetes. I try--I try so very hard--to act like it's not a big deal.
It's almost like having a newborn again. His feedings are timed and his intake is carefully measured. When he is asleep, I watch him--like when he was a baby--and look for the rise and fall of his body with the rhythm of his breathing. I feel his skin to see if he is clammy, indicating a possible low. Even in the daytime, I know he is one dose of Glucagon away from disaster.
Everyone tells me this will soon become routine and second nature. That doesn't give me much peace. Because I don't want this to be our routine. I want to make this go away. I want to take this from my son. I wish it was me and not him. I wish I could take his shots. I wish I had to prick my finger instead of his. He feels the needles in his skin. I feel every one in my heart.
Every person with Type 1 and every parent of a child with Type 1 will always ask the question, "Why?" And there will never be an answer. I can easily say, "Why not me?" But I will never be able to say, "Why not my son?"
So, yes--in rare, quiet moments that I am alone, I feel a chink in my armor and I cry. The frustration boils over. I feel angry and helpless. I want to scream. I want to hit something. Because damn it, this isn't fair! This isn't fair that THIS happened to my baby. He doesn't deserve this!
But it is what it is. I wipe my tears away so my son won't see my weakness. I shift gears. I do my best to turn all the negative emotions whirling inside of me into a new direction. I know the only way I can make them benefit my son is to turn all the hatred, anger, and rage into energy to fight. And fight I will.
I can't take this burden away from my child. But I can do everything in my power to be an advocate for him. I will do my best to make people aware of the impact of Type 1 diabetes.
No...he can't just avoid sugar. No...it will not go away with diet and exercise. No...it's not the same as the Type 2 diabetes your grandmother or cousin got as a result of their lifestyle. No...there is not a cure--YET. He will have to take insulin multiple times, every day, for the rest of his life--until there is a cure.
When I'm not shopping for groceries, cooking, cleaning, doing laundry, teaching Jaxson, monitoring his blood glucose, carbs, and insulin--I will spend every other moment educating others and increasing awareness of Type 1 diabetes. I will contact my congressmen and representatives, requesting funding and expediency in stem cell research and more efficient and accurate technology in managing the disease. I'm going to annoy them and become a thorn in their side. They will hear my son's story. They will remember his name. They will want me to go away almost as much as I want diabetes to go away. But maybe, just maybe--it will make a difference. It's the one thing I can do--it's about all I know to do.
I will not ask "Why" anymore. Instead, I will hit my knees and beg God to use me. I've always said that being Jaxson's mother is the most important thing I will ever do. I've just been promoted. All of a sudden, my job is much more important. This isn't about me. It isn't just about Jaxson. It is about every child, adult, and family that lives each and every hour of every day with Type 1 diabetes.
I will never be too proud to ask for help. I ask each of you to please help in any way you can. We need for there to be more awareness. We need funding. We are on the verge of major breakthroughs.
If you have extra money to give, please consider donating to Juvenile Diabetes Research Foundation (JDRF). If you are like us and on a tight budget, then all I ask of you is that you hit your knees and join me in asking God to facilitate a cure. My boy deserves to live without the constant threat of this disease...and so does everyone else who has Type 1.
It IS time for a cure!
