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ADEM, Johns Hopkins, and Miracle Makers

Article posted on Monday, October, 10th, 2011 at 5:56 pm

What an amazing journey! I first learned about our friends Holly and Marisa, when a friend of Holly’s found this website and helped us to connect.

Holly and I talked for 45 minutes on our first call and I don’t think I even knew her name until the last few minutes. Yet, she immediately felt like family to me.  It happens every time.  The connection that I feel to other mom’s and families that have been through or are going through a traumatic illness is difficult to explain. That first conversation always brings an overwhelming sense of dread, relief and fear.  Dread that there is another family living the nightmare, relief that there is a chance for me to use our story to support and encourage them, and fear that the recovery they are praying for may not be the one they receive.

Over the next 5 months Holly and I continued to talk over the phone.  There were so many times that I wished we lived close enough to talk in person. I felt so far away – and wanted to do something more to help. But since we are on opposite sides of the country, it seemed crazy to even consider it a possibility.

That is until Holly and Marisa decided to travel to Johns Hopkins in Baltimore, MD to meet with several specialists that they hoped would aid in Marisa’s continued recovery.  My first thought was – This is one AMAZING Mom! To help put this in perspective, you should know that Holly is a wife and mother of 2 children. Not only did she travel 3000 miles with Marisa, who is still recovering from ADEM, to strange city to meet an entirely new set of doctors; but she had to leave a wonderful husband and 4 year old son behind for almost 7 weeks to do it.  Holly is one of the strongest and most courageous women I know.

I couldn’t wait to meet her in person and knew that Baltimore might be the best opportunity we would have. Johns Hopkins is a little over 9 hours from our hometown which means we could make the trip in a week-end so we decided to hit the road on Friday, September 30.  (Unfortunately Neely had a bad cold, and we felt like the 20+ hours in the car would just be too much for her so just Jamie and I that made the trip.) We stopped in Virginia on Friday evening to have dinner with friends and a good night’s sleep. Many thanks to Dustin and Mary for the hospitality.

(Incidentally, we also stopped in Virginia on the way home to have a delightful discussion with one of Virginia’s finest and get a souvenir speeding ticket. Many Thanks to the officer who pulled us over.)

We arrived in Baltimore before noon on Saturday. The last 30 minutes seemed to take hours and I literally thought my heart was going to beat right out of my chest.  I was so excited and anxious to meet Holly and Marisa. When we arrived at Ronald McDonald House (more on this later – it is an amazing place!) Holly and Marisa came down to greet us and we gave each other the biggest hug! I’m sure little Marisa was thinking, “Who is this crazy lady crying with my Mom?” but she followed her Mom’s lead and took us right into the toy room where we could get to know each other better.

We never missed a step and eased right into a conversation that took us well into the afternoon before we thought to stop for lunch.  Jamie got in some great playtime and color time with Marisa while Holly and I talked and talked and talked.   There was no question that Marisa had stolen the heart of everyone at Ronald McDonald House. People would float through the room from time to time and always stop to say hello and see her beautiful smile. She is such a sweet, happy little girl! I can only imagine how she will feel as an adult when she looks back on this time and remembers how much she was loved and hard her Mom fought to get her the care that she needed. (My prayer is that when that time comes, ADEM is nothing more than a distant memory from her childhood and that there are no visible reminders.)

Marisa is doing great.  If recovery has anything to do with attitude and spirit (and we know it does) than there should be no doubt that Marisa will eventually overcome all her current hardships. Her sweet smile can truly brighten the room and the light of optimism and enthusiasm in her eyes is something from which we could all benefit. I just couldn’t stop hugging her!

We all went to lunch, visited the National Aquarium, walked along the Harborplace River Walk, and even squeezed in a late dinner.  Marisa was such a trooper. She played and laughed and even managed a short nap while we walked and talked all over Baltimore. It was a wonderful day and the time seemed to go by so quickly.

After dinner there was still one thing left to do.  I’d hoped to have an opportunity to see the statue of “The Divine Healer” that towers over the administrative lobby of one of the Johns Hopkins buildings.  And I am so glad that we were able to go there together. It still gives me chills to think about that beautiful room and all of the healing prayers that have been spoken there. I took a few pictures but must apologize that they do not even come close to showing the true awe that comes with seeing it in person.

Donated to the Johns Hopkins Hospital by Baltimore merchant and philanthropist William Wallace Spence, “The Divine Healer” is a truly majestic statue of Christ that has offered hope and a place of quiet reflection for patients and families since 1896.  People come there to pray for healing, among other things and to find inspiration. But what they leave behind will literally bring you to tears.

Carefully placed at the feet of Christ are flowers, letters, tokens of affection, cards and pictures (mostly of children). You can’t help but feel the prayers that must have accompanied each piece and the pain and hope of each person that left them there.  Over 100 years of hopes and prayers fill that room.

It is an overwhelming experience and something that I will never forget.

After a day of laughing, crying, walking in the rain, and talking until our voices were horse we couldn’t think of anything better to do than take pictures. I say that in an effort to apologize for our appearance J I hope you enjoy the pictures.

It was an amazing trip that I would repeat hundreds of times if the opportunity continues to present itself.

I’m so grateful to Holly and Marisa for spending the day with us but I am even more grateful for their friendship and their ability to inspire others.

Ignoring geographic boundaries, fighting against all odds, and refusing to take “No” for an answer; Holly and Marisa are miracle makers and the world needs more people like them.

 

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