photo by Sara Parsons.

It’s taken me awhile to form the words, and really truly believe them. I’ve moved swiftly between shock, anger, a deep guttural cries when I find myself alone and away from my other people. Sometimes it takes everything I have (and some things that I didnt know I had) to hold it together when I have to inform people. That I have to tell them that my lovely hilarious 5 year old boy has Type 1 diabetes. It takes everything inside of you to accept the fact that your child has a part of his body that will soon stop working, and is now quickly failing him. There is no amount of wishing that you could just take this sickness away from him and give it to yourself, it’s useless and exhausting but you can’t stop.

You wake up at the slightest sound, you wake up when it’s too quiet. You have alarms set so that you can check his blood every 4 hours, you start to wake up before them. You feel anxiety when you are sent home from the hospital with boxes of needles, syringes. You feel like its this elaborate game of doctor that kids play. You feel booted out of the door, pretending that you are a nurse drawing up all his medicine. Your anxiety mounts over perfect teeny tiny .5 units. You sound like you know what you are talking about. You sort of do, but it doesnt feel real. Its like talking about it in a scientific way removes the tears, it becomes concrete and manageable, but its not.

You let him feel the rage, the anger that he has to take these things. That every bite on his plate
counts. You tell him through your own tears that you hate it too, that it is the worst, that we wish it would go away, that we are sorry. That we will take care of him. We will teach him how to take care of himself when he wants to learn.

You are told that it will be okay. You are told that you can manage it. That you can stay on top of it. But then you have this little red box that you use when you cant wake them up. They send you these every month. Almost a reminder that yes, it will get that bad, you will need more than one of these.

Sometimes you think that you are getting a handle on it, but then you see all the little needle marks on his arms. The little bruises on his finger tips. Your heart swells at the same time its crushed when he says “You did a good job! It didnt even hurt.” But you see that tiny little speck of blood and realize that you had to do that. Hurting him and helping him at the same time. Its just back and forth. After having to pin his little arm down in the first few weeks, him screaming in your ear, yelling no….2 weeks later he is setting up the blood glucose reader for you, handing over his tiny finger for you to poke without fighting you. There is a combination of pride that your boy is so brave and sadness that he has realized that he has no choice. That this is it. This is his life. And it’s yours.

You are surprised by the people who actually reach out, and to the ones you expected to reach out and didnt say a word, you remove them from your heart. You realize that you dont have room for them anymore.

I’ve had people I dont even know send us messages, offer us amazing advice and it has made me love my husband even more and my children. Henry’s sister Rylie has been hit hard by this. For the first two weeks she was at the ready waiting for band aids for Henry. When his eyes filled with tears, her eyes filled with tears for him. She understood that we werent trying to hurt him, she understood that we were making him better. The compassion shown from his little friends at school has been sweet yet profound.

It will get better, then it will get worse. My heart will heal, it will break again.


Comments

  • Lo

    “You are surprised by the people who actually reach out, and to the ones you expected to reach out and didnt say a word, you remove them from your heart. You realize that you dont have room for them anymore.”

    What a poetic way to describe exactly how it feels.

  • ooxxxoxo

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