I'm going to be very personal for a minute. I hope that's OK. It's not pretty and it won't leave you with happy, happy feel good stuff, but it's a part of who I am and I wanted to share with our readers.
September represents so much deep stuff for me. I became a mother at 20. My daughter was my entire world, everything to me. I didn't know I even wanted children, it was unexpected, but it happened and I loved every minute of it. Around two and a half years of age my daughter started shaking as she reached for objects, almost like she had Parkinson's. I had her blood sugar levels tested, a simple blood test was enough to reduce me to tears, when she hurt, I hurt. I was so naive about everything.
Her results blood test results came back negative and I feared that maybe I was giving her too much apple juice or wasn't nailing the 'mommy' role as good as I should be. You always blame yourself.
Then she started forgetting her numbers. One day she could count to ten, the next day she was confused. I thought nothing of it… they're kids. They're small… you always try to make excuses when you know deep down something is off.
One cold morning in early January my nightmare began. My daughter lay in bed next me and I got up as usual… made the coffee, everything was fine. I jumped on the computer. I was selling rare, vintage aluminum Christmas trees back in those days. I did a few hours of work and then it dawned on me my daughter hadn't yet came bouncing through the halls.
I went to check on her. She was sleeping. Maybe she was tired. She was… but for reasons I didn't yet understand.
I called her name to gently try to wake her. Nothing. I let her sleep and continued on with my work.
I looked up at the clock and it was 10:00 AM. I knew it was time to wake her, she never slept this long. I called her name again, nothing. I panicked. I shook her and called her name. Nothing. I shook her harder and she vomited in her sleep, but refused to wake up… my nightmare had begun.
I thought I was overacting (I wasn't). I called the local pediatrician who told me to get her to the closest ER ASAP, or possibly to consider calling 911 for an ambulance. I panicked. What did it mean? I immediately put her limp body in a car seat and she miraculously woke up. I called the pediatrician back who told me to just schedule a regular check-up, as it was probably a false alarm.
In the coming days my world would end as I knew it, but I had no clue yet of what was to come. The episode repeated itself and I took her to the ER. They did an MRI and normally they release you… they did not release my daughter. Instead of sending us home with a typical pat on the butt and a 'the doctor will call you,' I watched as they put a hospital bracelet on my daughter's tiny wrist. We waited for hours. The poor radiologist nurse, Tiffany, tap-danced in front of us for what felt like an eternity. I knew in my heart something was very wrong. I called my dad. I told him I was scared. He left work and came immediately.
What transpired from there was any parent's worst nightmare. My daughter's pediatrician drove from her office to met us in the radiology waiting room and said a neurosurgeon wanted to speak with us and she was sorry and wanted to express her feelings in person. My daughter had terminal brain cancer. She was wheeled away and the next time I saw her she was bald. It's hard to imagine, but it happens. My daughter was one of those unlikely few.
September represents so much to me. It's National Childhood Cancer Awareness Month, but so little of us hear about it or give it much thought. We can't imagine a world where children get 'that' sick, but they do. And I can promise you it's worse than your worst nightmare. It's an awful thing to go through. You want to take their place, but you can't.
My daughter fought long and hard, but ultimately lost her battle. I will spare you the details. Countless surgeries, she spent an entire year in ICU. Her birthday is today, she would have been 16. Today I would have been buying her a car. My heart aches. She lost her battle, on September 25th, shortly after her 6th birthday.
I clam up every September. I can't help it. It's just as fresh as the day I was told her diagnosis. It never heals completely and September is my hardest month of all. I think about her constantly and the things we would be doing if she were still here. I reflect on the hard times, the happy times and what could have been.
(Madison, a few months before we knew what she was struggling with)
Thank you guys very much for listening. If you can't donate it's no problem… truly. I am happy I have friends to share this with, and that I'm comfortable enough to share this with. It's hard to share because honestly it's a little icky. No one wants to think about sick kids, it's unimaginable. But, it needs awareness just like any other awareness month… icky or not. It could save lives. If I had known what I know now I might have caught her illness in time to make a difference.
The main idea here is to remember what I have shared and if you know anyone who has seen similar symptoms with their little ones gently remind them to seek treatment as early as possible, you can never be too sure. September is a month of awareness and I wanted to share my story to help spread the awareness. I hope it has not brought anyone down, as that wasn't my intent. We shared lots of love, hope and ultimately we have peace, but this day is always difficult and I thought I would share my thoughts with you. No sadness, just happiness. She is at peace and I am too, but in September I reflect, and for the first time in a long time I thought I would share her story.
(Maddie shortly before her diagnosis)
Thank you again for listening. I'm sorry if this blog post came across as sentimental, it is, lol. But, I would choose to be her mom again without batting an eyelash. She taught me what love means and how far you will go and I thought I would share.
Original Blog Post is from September 2018. For September 2019 we are giving gifts to those of you who donate to the following causes (details can be found here):
Atlanta Ronald McDonald House- This incredible charity gave me an actual bed to sleep in while my daughter was being cared for and hot meals after long days at the hospital when my address was still out of state: Atlanta Ronald McDonald House
The Atlanta area Pediatric Brain Tumor Foundation- My absolute rock during the toughest times. They helped with gas for chemo visits and when we lost our battle they even helped funeral expenses. They were absolutely incredible and I don't know how I would have pulled through without them: Atlanta Pediatric Brain Tumor Foundation
And obviously our hospital CHOA, who continued to treat Maddie after her $6 million lifetime insurance cap had been reached. Upon her passing they erased all debts owed with their condolences: Atlanta Children's Healthcare of Atlanta
Any one of these three incredible organizations are absolutely wonderful. I can vouch for them all personally and the funds truly help families traversing their darkest times. Simply screenshot any donation made in September to receive your gift(s). You can send the screenshots to firstname.lastname@example.org