Tag Archives: Acute Disseminated Encephalomyelitis

What She Found in the Closet

Personality. My daughter has it. In fact, she has so much personality she has little time for things like cleaning her room on her own. Personality people love group activities and let’s face it: cleaning your own room isn’t a group activity. Greta loves to help in groups and will be the first to volunteer and she’s great at cheering on the team. That’s why we love personality people.

But her room is still a mess and the boys don’t wan to make it a group activity that Greta will love and help their little sister out. So we bribe them. Matthew is paid to work in the room for a while. Greta is thrilled to have company on doing a chore and the room gets cleaned. We gloss over the arguments and chalk them up to simple sibling rivalry.

The next morning, Greta came out with a huge smile and one of her recently rediscovered treasures, found deep in the recesses of her previously hideous closet. It was an envelope full of homemade cards from the kids at her school – from when she was in the hospital. She came out waving the envelope and shouting to the world:

See mommy, people do love and care about me.

Of course I responded that I never had any doubt and smiled, and tried not to cry, as Greta read card after homemade card from different schoolmates expressing that she get well soon and how much they loved and missed her. It’s been two years since our lives changed and ADEM came to our home, but those words of love and encouragement still found loving reception in Greta’s heart, and mine.

I told my class at church – I wish everyone could go clean their closet and find an envelope full of the love and encouragement folks have given them when they went through a difficult time – and remember that people still love and care about them. Go ahead, right now. Go clean out the closet of your memories. Don’t dwell on the obstacles and hurts. Remember the love and support of those who stood by you and perhaps even carried you through that time. Like Greta, hold those precious memories high and say to yourself that it’s true! People still love and care about me!

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Video Tears & Community

I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.

Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.

There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.

What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.

We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.

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What If?

My sweet little one is 10 this weekend. In planning her birthday party, she decided for a large all out bash – where both boys and girls would be welcome. Greta’s love language is fun times with friends. So naturally she would be thrilled to see all of her friends having a great time and everyone smiling like crazy!

One of the adjustments we have had after ADEM is emotional outbursts. Greta gets angrily easy and it takes about half an hour usually for her to settle down, unless we have an awesome, bright & shiny, fun type distraction for her. Her reaction when we try to gently guide/scold/discipline her is as if we were banishing her from the house and family. The psychologist said this isn’t a surprising reaction after all she has been through with the brain lesions.

What broke my heart this week was her sincere question: what if I get angry at my party? She knows she struggles with anger issues, as do a lot of kids and adults suffering with ADEM. She knows it could mess things up and her desire to have fun at her party is so great, but it is almost as if she recognized that this is something that is sometimes beyond her control.

What if? We may not have been through ADEM, but most of us have gone through bad choices or consequences from others close to us and their bad choices. When we are all set to have a good time and enjoy life, we wonder – what if that springs up again and ruins everything? What if these things that I don’t always have control over come back and really get in the way?

I appreciate the way Greta knew that getting angry isn’t who she wants to be and sometimes it just can’t be controlled. Bad choices isn’t who I want to be either. I think I’ll spend some time talking to God about it and asking Him to help me make better choices, so I don’t have to ask – what if. I’m also going to spend some time praying for His blessings on Greta, so she can have a great party and not let ADEM outbursts get in the way.

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Acceptance

Greta's ADEM

Greta’s ADEM

One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.

Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.

So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.

Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!

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A State of Thanksgiving

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.

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