The support was amazing and almost as overwhelming as the journey we were going through. Karl and I cried and each took turns pretending we were strong enough to tell our little girl that she had a mass on her brain. In the end, the diagnosis was Acute Disseminated Encephalomyelitis or ADEM. It took two MRI’s a spinal tap, many blood draws and physical examinations to get to the diagnosis, but once there, effective treatment began.
When it was all said and done, there were many things we learned. Did you know that ADEM is rare in children and that it quickly becomes life threatening as it is often misdiagnosed in smaller, untrained hospitals? The time to get effective treatment is critical and a misdiagnosis can leave behind a child with many long term recovery issues because the treatment was delayed. Greta’s first major symptom of vision loss in one eye was immediately met by her physician with a CT scan. Quick action for which we are thankful.
When the scan showed the mass on her brain, our little Greta was sent straight to Dallas Children’s Medical Center. In the end, we learned that this facility is one of two hospitals in the country with active programs treating and studying the rare demyelinating diseases. We are thankful.
I joined the Transverse Myelitis Association (TMA), a group that serves as support, awareness and education for patients and families of the lesser known demyelinating diseases: ADEM, Transverse Myelitis (TM), Neuromyelitis Optica (NMO) and Optical Neuritis. By staying connected to this organization, I became aware of other families in their struggles with these life changing diseases, especially ADEM. Many of the children were misdiagnosed. Many were victims of delayed treatment. Most of them are in a great struggle to regain a sense of normalcy in their lives due to the devastation of the disease. And Greta? She rides her bike, goes to school and loves a grand adventure of trying something new with friends. We are thankful.
A glimpse of a show from the current season of Master Chef shows a blind competitor. She wasn’t always blind. As a young person, she got NMO and is now unable to see. Yet despite this great impediment, she pushes on to do what she loves, cooking. I look at Greta and she has regained her vision and carries on normally as a super reader. We are thankful.
In my latest communication with the TMA, I got connected to a forum of people dealing with ADEM, some of the patients children. I read their stories and realized once again how many miracles took place in Greta’s life and in her experience, still ongoing, with ADEM. She is still being monitored and she is still undergoing evaluation to see the extent of any possible brain damage due to the lesion in her brain, but she functions normally.
I have been thankful for Greta’s treatment and recovery. But the more I stay connected to others dealing with the demyelinating diseases, the more thankful I am. I find it very easy to be in a state of thanksgiving when I look at my active and full of life daughter.
When I was a kid and I read Bible verses about always being thankful, I couldn’t imagine. I just couldn’t seem to wrap my mind around why anyone would want to be thankful more than once for good things that happened. I was a kid who just wanted to say thank you and run off to my next adventure. Going through this journey with Greta, I see things differently now.
Perhaps, just maybe, the reason we aren’t thankful, is we aren’t aware of how band things really were or how bad they could have been. Did your house burn down and you lost all of your earthly belongings? Perhaps by connecting with others who experienced this loss, you may realize that you were blessed. They lost their belongings and members of the family. Did your spouse lose their job and the unemployment sent you into a financial tailspin? By reaching out to others in this situation, you may find that they lost hope and their family split up.
If you have been through a trial and have come out on the other side, by reaching out to others you can lend support and help. You can also learn to be in a state of thanksgiving.