On Being Extraordinary (Emily’s Story)

By Emily Mamun

Five years ago I was an ordinary mom. My husband and I had an energetic, beautiful little girl with a huge heart and sparkling personality to match. We were grateful for the blessings of family, friends, and a Pinterest-perfect life.

And then things changed.

Two weeks after our daughter turned two we found out she had brain cancer. A doctor we had never met took us down a hall, through a construction zone, and into a secluded exam room to tell us she had a tumor, it was inoperable, and “these kids don’t make it to kindergarten.”

We were stunned. My husband asked questions with no answers. I cried. And then nurse handed us directions to a different hospital where an oncologist was waiting for us. I put on a happy face as we greeted our girl in the MRI recovery bay and steeled myself for what was to come.

She had surgery a week later. They told us we would be home in about 3 weeks. Instead, we lived in the hospital for a total of 16 weeks. By the time we finally came home, she had endured two brain surgeries, a tracheostomy, two ports, innumerable other procedures, was in active chemotherapy treatment, and couldn’t walk.

The hospital offered grief counseling and I refused. She was still my little girl, after all. I hadn’t lost her and I wasn’t about to. I threw myself into balancing her appointments and my full-time job. I watched her get on the bus for her first day of pre-school and pretended everything was ordinary. Until I just couldn’t anymore and I lost it … in front of my very unforgiving boss.

Getting it all out was good and I started to come to terms with reality. Years of physical therapy had her walking again and she was excelling in school. We made cupcakes, took vacations, and looked forward to the future.

And then the tumor started growing. “Cancer could be a chronic condition for her,” the doctor said.

I found out I was pregnant the same week she started another round of chemo.

We made our lives easier by having chemo done at home this time. Less drive time and a quick infusion meant less disruption to our “ordinary” life. We had fun at ECFE during the week and adventured to the zoo on weekends. Having home care set up also came in handy when I dislocated my pelvis and was in a wheelchair myself at 34 weeks pregnant.

Everything felt better 6 weeks later when my son was born.

My daughter ended treatment again just before starting kindergarten (eat it, doctor, she made it!) and learned to ride a bike shortly thereafter. We took two kids, lots of drugs, and her bi-pap machine spelunking in Kentucky over the summer and she started taekwondo in the fall.

This is our life. It is reality for us, but it is by no means ordinary, and I’m done trying to pretend it is.

I have no problem telling people my kid is extraordinary, but it’s harder to say this: I am an extraordinary mom.

My daughter has “extra” needs (Andrea’s preferred term) and so, I do extra things – things most moms don’t even think about. I’m the one who holds it all together. And that makes me (Extra)Ordinary.

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Emily bio pictureEmily loves traveling, treats, and spending time with her family.

6 thoughts on “On Being Extraordinary (Emily’s Story)

  1. I am proud to be part of your extended family. Definitely you are an extraordinary mom who went through a tough situation with a beautiful smile in your face. God bless you and loving family.

    Liked by 1 person

  2. You are an amazing extra special extraordinary person! So much more brave than I could ever be. Proud of you and your family and friends are blessed to have you in their lives.

    Liked by 1 person

  3. Emily, you are the definition of an extraordinary mom. It’s no wonder to me how L is so strong, beautifully brilliant, and has already inspired others to try more, do more, and be more. Keep your head up as you always do, many people have got your back.

    Like

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