I’ve never really thought of myself as the blogging type. Don’t get me wrong, I’m not knocking the concept. I adore writing, consider myself to be an open book, and have always admired my stay-at-home-mom-friends that had time to post blogs of volunteering at their children’s school events, latest recipe endeavors, or pictures of heart-shaped pancakes they made their family for Valentine’s Day. I just never had the time to.
I was too busy juggling climbing the corporate ladder, raising two young children, two dogs and a cat, all while keeping a marriage together. Not to mention the fact that I wouldn’t really have anything to talk about if I did decide to blog: wake up at 4:30, exercise, drink coffee, feed the dogs, feed the cat, get ready, get the kids ready, leave the house at 6:30, drop off the kids at daycare, take the train into downtown, work, take the train home, pick up the kids from daycare, go to the kids activities, get home around 7, make dinner, eat dinner, feed the dogs, feed the cat, get the kids ready for bed, get myself ready for bed, crash by 8, repeat. Hardly even time for housework, no time for myself, and certainly no time for anything extra.
Everything changed in an instant.
On December 1, 2017, my daughter Gracie was diagnosed with a high grade, malignant glioblastoma through and around her brain stem. It’s not DIPG, although it is very similar which means that the doctors are treating it essentially as a death sentence. They said it could be a few weeks, a few months or a few years, but the average prognosis of what she has is about 9 months after diagnosis.
The month of December was an absolute whirlwind after getting this news. Between endless hospital visits, going on leave from work to nurse Gracie–who now can’t even do basic activities of daily living like getting dressed or going to the bathroom without help–dealing with insurance companies, hospitals and clinics, and just coming to peace and acceptance with her diagnosis, my head was spinning.
I was physically sick to my stomach for a few weeks after finding out, and there were days when I couldn’t stop crying. After a few weeks of this gut wrenching depression, I realized that this wasn’t helping the situation and that I had to do everything in my power to pull myself together. I’ve been to counseling, been prescribed antidepressants, spoken with others that had lost children, but the pit in my stomach is still always there.
That’s why I’ve decided to start this blog. The primary reason being a therapeutic outlet where I can sort out my feelings and experiences, in hopes of it providing better relief than tossing and turning, unable to sleep because all I do is think about this all night. I’m hoping to connect with others that have been through experiences like this to get some insight and support. In a perfect world, I’d like to raise some awareness and shine a spotlight on brain cancer, especially pediatric brain cancer. If this takes off, maybe between Gracie and John McCain’s diagnosis, more publicity and money will go into glioblastoma research!
I can tell you, based on the past month, that there are good days and bad days, and I won’t be editing our experiences to paint a good or a grim picture of things. This will be our REAL journey, for better or worse.