Jennie Carr
Bio
I’m a mom of two and a brain surgery survivor. My husband has Type 1 Diabetes, my oldest daughter has Celiac Disease and my youngest has Duane Syndrome. Writing allows me to share my journey of recovery, acceptance and self-discovery.
Stories (7/0)
'Your Daughter Has Duane Syndrome'
I first noticed when I was cradling my squishy little newborn on my breast as she nursed. Her eyes were open and she was staring up at me with so much love. She was such a beautiful and precious five-pound, nine-ounce baby, and I felt an overwhelming joy seeing her getting nourishment from my body. I did that! There’s a sense of pride whenever she nursed and I could tell she was totally content and in love with me. But, every time she nursed on my left side I got a sinking feeling in my stomach.
By Jennie Carr6 years ago in Families
Tips on Becoming a Smart Ass for People Who Live with an Invisible Illness
The majority of people who live with a health condition do not appear as if they do. Having an invisible illness means that you walk around in the mall, window shopping. Sales associates ask if you need any help finding anything, you politely say “I’m okay, thanks.” You go to work and pretend to love your job and your coworkers, like everyone else in the work world. You get pissed off in traffic and beep your horn at someone who doesn’t use their turn signal. You go out for a drink with your girlfriends and laugh hysterically. You cook dinner for your family and tuck your kids into bed at night and kiss them on the forehead. You blend in with the rest of society even though you have this “secret” you are carrying with you every single day. It’s not apparent that you live with chronic pain, nobody can see your insulin pump under your shirt. They can’t see that you have a pace maker or, like me, can’t tell that I have left sided blindness (Homonymous Hemianopsia). You typically stay at home when you are in so much pain that you can’t physically move your body without crying, when you have a migraine which is a side effect of your traumatic brain injury, when a seizure has taken all your energy that morning, or when you can’t catch your breath because you’re having a bad heart day.
By Jennie Carr6 years ago in Longevity
When Your Celiac Warrior Starts Kindergarten
I’ve always wanted to stay home with my kids. I have fantasized about it my entire life. I wanted to have four kids and be able to teach them and mould their spongey little minds in the baby and toddler years before passing them off to a complete stranger to do the same. I’m sure a very capable, but very strangery stranger. I always thought maybe we could work our way around needing two incomes, but most likely that it wouldn’t be a possibility. But, when I had brain surgery I could no longer drive and I was healing physically and emotionally, and so I became a stay at home mom. It was the silver lining in the hardest time in my life. I, of course, needed a lot of help from family at first, but I was at home and able to see my kids all day every day like I had always wanted.
By Jennie Carr6 years ago in Families
What I Want My Daughters to Learn from My Health Struggles
Dear Maddie and Marlee, When I was 28-years-old my whole world was changed forever. I thought I had life figured out. I fell in love, I got married, I graduated university and I had a good career started. I bought a house and had a beautiful daughter and a second on the way. I was so happy and was excited for what my future held for me. Your dad and I had goals we wanted to achieve and plans we wanted to see fulfilled. The most important thing to us was to have a healthy and happy family. We were living our dreams.
By Jennie Carr6 years ago in Families
At Least It’s Not Cancer
I still remember the feeling. It's a punch-you-in-the-stomach, going-to-spew-my-breakfast feeling. Well, it's a lot more than that and something that is hard to describe. You are living your life, and then—BAM!—everything changes. You are no longer invincible. You are now a sick person.
By Jennie Carr6 years ago in Longevity
15 Things They Don’t Tell You About Brain Surgery
Warning: adult language ahead (you are allowed to swear when you've had brain surgery). Nobody tells you what it’s like to have brain surgery. I mean, why would they? Nobody expects to have brain surgery, and most people don’t know a lot of people who have had encountered this unfortunate scenario. It’s not your typical topic of conversation. So, when it happens to you, you really don’t know what to expect. I’m here to tell the future brain surgery warriors and the families of the brain surgery warriors the obvious and not so obvious on the topic.
By Jennie Carr6 years ago in Longevity
Living with Homonymous Hemianopia
I have homonymous hemianopsia, which means I have visual field loss on the same side of both eyes. I feel like there are a lot of assumptions or opinions surrounding my disability, maybe by people I know or by strangers. I’m not just missing my peripheral vision. I haven’t just lost vision in one eye (and I’m not saying those are easy things to live with at all, because I’m sure they aren’t either). My ability to see stops at the MIDLINE of BOTH eyes. I wish people could see through my eyes, just for a day, to understand what it’s like. My disability is invisible. I do not look like I have anything “wrong” with me, but the challenges I go through every day are ones that nobody understands.
By Jennie Carr6 years ago in Longevity
