Sally Gets Her Smile Back

I wrote this story, along with my friend Sally Richards, who is raising money to fund research for NF2, and our friend Jeremy Bargiel.

Sally is a mother, a daughter, a sister, a friend, an athlete, and a lifetime resident and active member of the Glen Ellyn community. She has brought smiles to countless people through her endeavors over the years, and now it’s her turn to smile.

Sally (pictured on right side of photo to the left - that's me on the left) is a survivor of a 25 year battle with recurrent brain and spinal tumors that began when she was 15 years old. She was a sophomore at Glenbard West High School when she was diagnosed with Neurofibromatosis 2 (NF2). NF2 is a complex genetic condition that causes non-cancerous tumors to grow along the central nervous system, on the brain and on the spinal cord. As of today, there is no cure. Sally is working to change that, and she needs your help.

NF2 manifests itself differently with each person, and everyone who suffers with it experiences numerous physical hardships. Her disease has forced her to live with many symptoms, including:

• Complete hearing loss
• Double vision
• Imbalance
• Bilateral facial paralysis
• Lower back pain
• Headaches
• Ringing in the ears
• Short-term memory issues
• Permanent nerve damage on her lower left leg

And in addition to these symptoms, Sally lost her ability to smile. Everyone knew her smile was within her heart, but she just couldn’t show it.

New Beginnings

Since July 2009, Sally has had three successful surgeries at Northwestern Memorial Hospital—one to remove a large part of her brain tumor, one to help her eyelids close, and a facial reanimation surgery to help get her smile back. The last two surgeries were necessary due to her facial paralysis. Thanks in part to her skilled surgeons and in part to her positive attitude, great faith and support from her family, friends and fellow church members at First Presbyterian Church of Glen Ellyn, Sally’s symptoms have improved, and she can once again express her joy through her smile.

Yet despite these successes, she knows that her symptoms will linger on. Her disease will continue to worsen, and, unless someone finds a cure, the battle with NF2 will continue for the rest of her life. Sally has lost many friends to NF2, and she is dedicated to helping improve the lives of others who share her disease. Finding a cure has become a focus of her life. Sally wants to educate people about NF2 and its devastating effects. She believes that the more people know about the disease, the more they will want to help.
Recently, she has been working with a number of NF organizations, including the NF Endurance Team, which raises money exclusively for the Children’s Tumor Foundation.

This August, the team will participate in the Chicago Rock’n’Roll Half Marathon, and Sally plans to walk the entire race. Through her participation in the race, she hopes to raise at least $5000 for the NF Endurance Team and she needs your help.

How You Can Help

Please visit Sally’s fundraising website to learn more about Sally, NF2, and her courageous battle to find a cure. And please consider making a donation and asking your friends to visit the site. Your donation may make the difference in others finding their lost smiles.

Sally thanks you, her fellow NF2 sufferers thank you, and I, along with all of her friends and family, thank you. You can make a difference, and I know you will in any way you can - whether it's by making a donation, spreading the word, sending positive thoughts or saying a prayer. Have a great day!

Helen

P.S. The house where the photo was taken is the former Tosch home in Glen Ellyn. You were very good to us, house. Thank you. We love you, we'll never forget you, and we'll miss you. A lot.

Baby Steps

Today is June 7. It's been 42 days, give or take, since I had a miscarriage. I wasn't that far along, somewhere between 4 and 8 weeks, so I figured I didn't need that much time to mourn. I was wrong.

This morning, I was lazing about on the couch, surfing the web and half watching Scrubs. In the episode, a couple found out they were pregnant. And they were adorably excited.

Then, out of nowhere, I was crying. I started thinking about how far along I'd be now. How his or her heart would be beating up a storm, and I'd be close to feeling those kicks. We may even have had the ugly wood panels down and the soon-to-be-nursery painted. My morning sickness would probably have started to subside, and I'd be ecstatic.

But instead, I was crying. And my husband, Chris, was blindsided when I said he was clueless for not getting why I was upset. Hadn't he seen the TV show too? Didn't he care that we'd lost our baby? He had no idea what was going on. He figured that when I told him a few weeks ago I was ok with the miscarriage, that I must really be ok. He thought that because I'm happy and full of joy most of the time (I'm known to wake up singing and fall asleep laughing), I've moved on. Makes sense, doesn't it?

Except, I've learned, grieving doesn't always happen all at once. And because I felt I didn't have much of a right to mourn, given I'd only known about the pregnancy for a few days, I didn't allow myself to really heal. I talked about it a little. I learned that nearly all of my friends and coworkers had been through this themselves. And I moved on with my life as if everything was wonderful and this had obviously happened for a reason. I didn't really want my child to have to suffer through a Christmas birthday anyway. March or April would be much more fun.

And, honestly, I was nearly over it. That is, until I found out our cousin is expecting a baby that is due on the same day ours would likely have been. And though I'm happy for her, it hurts to know that our baby died, while hers, it seems, is going to be ok. I'm a bit envious, and I am not looking forward to all of the updates and the birth announcement. I feel selfish for this, but at the same time, I feel justified in being sad.

I guess my point for this blog is twofold. First, I think it's important that people talk about things like this and allow themselves time to mourn - regardless whether they feel they deserve it or not. And second, I want Chris (and everyone else) to know that I'm ok most of the time, but sometimes, I just want to cry. Sometimes, I want to think about what might have been, and I want to be sad. I need that. And I hope he'll understand next time I tell him, out of the blue, that he's insensitive.

I'd also like to say, to our tiny little baby, never bigger than a raspberry, you stole my heart. I love you, and I will never forget you.