The top floor of the parking deck.

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I think this is going to be a sad post. So if you don’t want to feel sad on an already gloomy February day, don’t read this.

I was raised by two parents with chronic illness. My dad was diagnosed with type one diabetes about five or six years after I was and my mom has had Rhematoid Arthritis since before I was born. I’ve grown up in a family uniquely familiar with sickness. A family that has never and will never take health for granted. A family that knows the value of living in the moment, because oftentimes those hard moments are fucking relentless and when they’re good, you better celebrate the fact that they’re good because god knows they won’t always be that way.

And that,  defines my mother.

Observing a disease like rhematoid arthiritis as a spectator from the sidelines is fascinating. The way that from the outside she can seem perfectly fine, only to learn later that she didn’t sleep a wink the night before due to mind-numbing, excrutiating pain emanating through her bones and joints. The way it criplled her hands and her feet again and again and again. Even after dozens, literally dozens of surgeries. The way it put her in a hospital bed while I was a child, busily eating McDonalds in the hard wooden hospital chair, utterly oblivious as to how deep her suffering ran. Because now I am a mother. Now I know what it feels like to be a “sick parent”. To miss things with your kids because you don’t feel well, because you have to take a time-out. To be seen through their eyes as a person with an issue. It’s very hard to articulate why that knowledge is painful. I believe it’s because I want my children to know I am their protector, that I make everything better, that I am infalliable. And seeing them see me being sick, shatters my entire self-image.

My mother is, without a shadow of a doubt, the strongest woman, the strongest person that I have ever known. She fights fiercely against a disease, a systemic disease at that, that affects every inch of her body. And here’s the crazy part. She never, ever ever ever complained. She never, ever ever ever let it stop her. Her strength lies not in simply living with her disease, but in standing up to it. She fucking refuses to let it diminish her quality of life. She fucking refuses to let it break her. And so when she says the old cliche “live in the moment”, she actually does. No, really she does. She is present, and she is unwavering in her gratitude. If you know her, if you’ve even met her for a moment, chances are you agree.

When I was 11 and had just been told  I had type one diabetes, she walked me across the top floor of the parking deck at Piedmont hospital. It was February and kind of cold. She was so strong in those moments, and I think about them so often now that I am a mom. I think about how easy it would have been to crumble and openly mourn the fact that your baby now had a life-long disease. Particularly as back then, it was accepted that type one diabetics probably couldn’t have children. She had to look at her eleven year old daughter, knowing there was a high chance she could never carry a baby, and tell her everything would be ok. That particular eleven year old loved babies and oftentimes could be found burping a bag of rice or cradling a giant bag of marshmellows like it were an infant. But my mother didn’t let her hurt or worry show for a second. I found out later that once I was checked into the hospital that day, she went home with my sister to collect my stuff. Books, stuffed animals, dolls, my discman, anything that would make me happy. And while packing stuff up, she sat down on my bed and cried. My sister tried to comfort her, but all she could do was cry. I can’t fathom that level of pain.

Yesterday I parked in relatively the same spot on the top floor of the parking deck at Piedmont for my 32.4 week perinatology appointment. The same general spot that I parked in more than 5 years ago to give birth unexpectedly to my twins. The same general spot that I parked in every day and every night I came to visit them in the NICU. The same general spot where I parked after holding my baby girl and my baby boy in the NCIU and cried and felt sorry for myself because this wasn’t how I had imagined it would be. And the same general spot that I parked in five months ago and called my husband to tell him we were having another girl. Where I called my sister to tell her the baby was the size of an orange. Of an apple. Of a kumquat. And yesterday I parked in that same general spot and called my mom again. Sobbing into my sleeve, trying to catch my breath.

“What is it Anna? Tell me. My heart is racing” she said.

I told her that the perinatologist had informed me that my baby was “extremely large” because of “uncontrolled diabetes” and “the longevity of my illness” and “the fact that I’ve been sick for 25 years”. He said that I would most certainly have another c-section. That she would come early, in the 37 week range. That she had something wrong with her kidneys, that it wasn’t a “big deal” but it was “something seen in babies of diabetic mothers” as their uncontrolled diabetes made the baby produce more urine. It was “something to watch” and “something to tell the pediatrician”. And then he said “this baby will probably have to stay in the NICU” because of “the mother’s illness” and because the babies bloodsugar could drop dramatically and, wait for it, “put her in extreme danger”.

I made it to the car (just barely) before my eyes spilled over. I punched the steering wheel and kicked the wall and when the car was shut and the windows rolled up, I screamed as loud as I could. And then I called my mom.

Throughout my life, I have tried to emulate my mother in every way. I try very hard to be tough, to not give up, to be grateful every chance that I get.

To meet me, I doubt you would know that I had diabetes. Much less how much I struggle. And that’s great. But it also allows you to live in a fairy land, one where the idea of neuropathy or amputation or dementia or death is implausible. And so in moments like yesterday, the disease comes out of the wood work and hits you over the head like a fucking sledgehammer. You are reminded so intensely how sick you are. How different other people’s lives are from yours. And trust me, as I type this I feel disgusted by how lucky I am. I have a disease that people live VERY long lives with. I had TWO healthy children and am about to give birth to another baby in a month. I have a beautiful family, a husband that loves me and takes care of me and money and resources to afford the latest technologies-a new pump, better blood sugar meters and more refined insulins. And yet, diabetes is a unique disease. It doesn’t ever ebb and flow. It’s not exacerbated, so to speak, by stress or lifestyle choices. It’s there, all goddamn day. Every hour. Every minute. Every second. It is another child to care for, but one that never naps, never sleeps, never grows older, never leaves you. Another full-time job calling insurance companies and arguing claims, and pricking fingers and changing pump sites and buying new insulin and wiping up blood and eating a snack to treat low blood sugar and walking the block and injecting again to treat high blood sugar, and calculating every bite of food that is going or will ever go into your mouth. A disease that regularly makes you have blurry vision, migraines, depression, stomach issues, nerve pain and on and on and on. It’s a fucking monster that won’t leave me alone. And just when I think I’ve almost forgotten it, I’ve almost blended in to a world that doesn’t prick  fingers or count carbs or jab itself with needles, it pops back up in the middle of a perinatology appointment to remind me, you aren’t normal. You are sick and you are wreckless to think you could have another baby. You are greedy for wanting more. You are selfish for making your babies body suffer, for making her precious tiny kidney struggle, all because you wanted something. Something you thought you could do, but something you failed at. You failed.

I have tried so hard to make it right. To check my sugar, to take my insulin, to walk around the block after a meal when my back is aching and my feet swollen. I have carb counted and woken multiple times in the night to prick my finger. I’ve seen doctors after doctors after doctors, and I’ve connected myself to machines that give me better sugar results, or more real time data. I’ve poured over reports as to why my sugar goes up unexplicably at times, and drops into dangerously low zones at others. I’ve prayed for her and rubbed her back through my belly and promised her that if she could just hold on, if she could just make it out of me safely, she would be the most loved baby in the world. I want her to know that just on the other side she has a daddy  ready to kiss her and blow rasberries on her belly and cheeks; a sister who is literally jumping in anticipation to help change diapers and give her baths and teach her “to read and do science stuff”; and a brother who cannot wait another minute to “sing her sweet songs when she cries” and “rub her head in her crib if she’s scared”.

And lastly a mommy. A mommy who already loves her, without ever seeing her face. Without ever touching her cheek or looking into her eyes. A mommy who believed in her long before she was a baby. When she was just an idea, a hope and a dream. A mommy who fought for her, who got her to grow inside, who protected her in every way that she could. A mommy who is fighting a fucking battle inside of her own body to protect her unborn baby- to keep her safe from the wreckage her disease has caused. A mommy who learned everything there is to know about being a mommy from her own mother. From her own sister. And now from her own daughter. A tribe of fearless women.

And you baby girl, if you can just hold on, you’re next in line.

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