It is testing and shot time again. I can feel the fear and anger rising in me, bubbling up in my belly, my heart, my throat. My mind races, schemes, claws at ways to run and hide, to escape. My mother gathers up the supplies -- bottle of chemstrips, lancet and lancet device, insulin-filled syringe. And she gathers her strength; this never gets easier.
She calls me to the kitchen. I tell her I'm busy with something in my room. She tells me I need to come and be tested, come and get my insulin. "I don't want to." I whine. The tears are brimming between my eyelids. "I don't want to." I repeat, with emphasis.
"You must. Now, please, come down here." My mother has learned that if she comes to me, I am liable to run away, she'll have to corner me, maybe fight me. So, she starts the testing and shot process thirty minutes before it needs to be done, using the time to coax, cajole, bribe, beg.
Five times a day, we test. Four times a day I get my shot. I know my mother secretly thanks God that one of those shots happens in the nurse's office at school. For some reason, I have accepted that there is no running and hiding, no delaying, at school. I reserve my protests for the process to our home.
I'm not coming this time. I shout that I've decided not to eat dinner, so I don't need my shot. I sit on my bed, with my knees bent, hugging my legs to my body, skillfully wrapping my eight year old fingers into and around each other, hiding the sides and tops so that there is no way a lancet or device will reach them. "I hate this and I need a break. I hate this and I need a break. I hate this and I need a break." I repeat quietly.
I hear my mother on the steps. I hear her take a long, heavy breath as she comes up them. She opens the door to my bedroom. She looks tired, and I can tell she's been crying again. She sits on the bed and says. "I don't want to fight today. I know this is hard. I'm sorry. But I really don't want to fight today."
"Well, I don't want to have diabetes." The anger that has been bubbling streaks through the words as they come from my mouth, I watch them slice into my mother. She winces.
"I know. But you have it. And I can't let you get sick. It's that simple." She says. She reaches for one of my hands.
I tighten my grip, hiding more of my skin, and start yelling. Not yelling really, screaming. Screaming as if my mother, who has never shown me anything but love, is trying to kill me. My anger and grief feed my strength, I rip my arm away, lie on my back, and bury both of my hands beneath me. "It's not simple." I scream.
I cry as my mother straddles me, one leg on either side of my thighs and tries to reason with me. "Please give me a hand, Nicole, please." She takes my left arm by the elbow and pulls, working to free my hand from behind my back. "No." I fight back. We're both sweating and I'm crying.
After ten minutes, I have kicked my mother and slapped away the lancet device three times. I have screamed that I hate her and that I know she doesn't love me. And my mother, she hasn't given up.
She finally frees a hand and successfully gets a blood drop. In a moment, my bloodsugar reading is complete. And we work on my shot.
There is more wrestling, more anger, more screaming. My mother gets poked with the syringe in the struggle. My exhaustion after 40 minutes of fighting is what saves us this time. I dissolve, sobbing and too tired to swing or kick. My mother quickly wipes my thigh with alcohol and gives my shot. Then she wraps her arms around me, lying beside me on my bed, wiping the tears from my face and pushing my hair from my eyes.
This was by no means a daily ritual, but there were days during the first year after my diagnosis, that my mother had to fight me, had to hear that I hated her, had to watch me scream and cry, as she struggled to ensure that I got everything that I needed to stay healthy. My father endured some of the same.
At a year after my diagnosis, my parents took me to the Clara Barton Camp. That changed everything. By the time I left CBC after a family weekend program, I was not only NOT fighting testing or shots, I was doing both myself. My mother credits CBC with saving me -- and saving her and our family life. I credit CBC with showing me how strong I could be, assuring me that I wasn't alone, and helping me to stop feeling so angry and start enjoying all of the things in my life that had nothing to do with and were not affected by my diabetes.
I am thankful during this Holiday season.
Thankful for my mother, who showed the courage and strength of a mythic warrior and whose gift of love has gone unmatched by any other in my life. And thankful to the Clara Barton Camp -- that gave me courage and strength to match my mother's and helped me to fathom the depth of her love.
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9 comments:
That was lovely. Heartbreaking and lovely.
You sound like you were blessed with a wonderful, caring, and strong Mom. Sometimes I think having to be the caregiver or parent is harder than actually being the one with the chronic disease. It must have been very hard to watch you struggle with it and then also have to be the one to insist on you takinig and administering the shots and blood sugar tests. To a child, those things are scary, but your Mom was right. As much as it was difficult to watch you deal with and try to manage such a disease, she knew that testing and taking your shots were something that cannot be compromised on.
I think you were very lucky to have someone who cares about you so much. Having family and friends support is essential.
I agree with Andrea -- I think it is harder to be the caregiver or parent of the diabetic. We, as the diabetic children, are almost excused if we flounce off and don't pay attention to our diabetes. But waivering vigilence in a parent is almost (unfairly) considered child abuse.
Beautiful post, Nicole. Simply beautiful.
Well, this made me cry. No shit.
I have nothing wise or insightful say, just couldn't let this piece of writing go without accolades.
Thank you so much for sharing this. It really helps to know my son will not one day hate me when I insist on his care.
Vivian
Ok, that one got to me. Bless your mom and all the parents out there that do everything they can to keep their kids healthy. Even if it means that after they do it, they go in the bathroom and cry.
Words escape me, as the tears start to fall. There are days I feel like my family is living a nightmare, and one day we'll all wake up and both my husband and my son will be cured....One day I pray! God bless the parents of children with diabetes, becuase God gives us enough strength to get through each day, each test, each shot or pump insertion...Your post was lovely and I love how you express the frustrating feelings of the day to day one has living with diabetes...
Yesterday for the first time, after 3 years of having it, my son told me he wished he didn't have diabetes when I had to test him before breakfast. He just wanted to eat his waffles and peanut butter without taking time to be tested.
He didn't fight me, but this is the first time he expressed any kind of unhappiness with having diabetes.
You are so lucky to have strong, dedicated parents who were willing to fight with you.
My cousin wasn't so lucky. My Aunt and Uncle sucked as parents of a type 1 diabetic.
I can be judgemental of them even though back in the early 80's management certainly wasn't as convenient as it is today. But when I talk to my cousin and the first question out of my mouth is "Did you find a kidney/pancreas donor?" I get angry with them.
Left this post bawling. Luckily my mother never had to endure those episodes with me (I was dx'd at close to 17), but if I could've thrown crying, fighting fits with myself, I would've and the testing, shot taking me just might've lost.
What wonderful parents you have!
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