Leaving Boston... A New Chapter
This has been a long time coming. A blog to collect all of the chaos, countless tears, and changes our family has endured over the past five years. Many people still message me after reading a post from Emmy’s Facebook page and ask about how it all started. Despite having written a collective history in the shortest form possible and pinning it to the top of her Facebook page, many still don’t understand the depth of our sorrows from this journey we have endured. So, if you really want an in-depth history lesson, you would have to start with Caring Bridge and then find posts on our old blog “The Bosch Adventures” and if you aren’t fully burnt out you finally would have to read (and weep) over Emmy’s Facebook page. Emmy’s Facebook page was created when we were ‘casually’ taking a trip to Boston Children’s for the “Best Doctors in the World” in order to finally diagnose Emmy’s brain disease. This ‘trip’ was November of 2015 and tragically that trip never ended until June of this year (2019) when we finally found a way “OUT.” Thankfully we got military orders to get as far away from that place as possible. Don’t get me wrong. In the end, Emmy’s cure was found, but to get that cure took way too much fighting and praying.
Thank God for close personal friends whom I can confide my deepest, darkest emotional and spiritual thoughts to, because to the outside world its hard to understand why I wanted to leave Boston so badly. From the moment we arrived at Boston Children’s Hospital we experienced pain that is almost too hard to put into words. A place where we had no support system. A place where no one knew Emmy. A place where the “Harvard” doctors belittled us and tried to tell us that they understood Emmy better than we could. In all honesty, the pain we experienced was both no one’s actual fault, and yet at the same time, everyone’s. It was mine and Randy’s, It was the neurologists back in VA and in MA. The doctors are trained for things that happened to Emmy (outside of her brain disease), but the CHAOS was so loud and confusing, no one could hear each other speak to figure out the answer. As I look back, the Devil was LITERALLY in the details.
Anesthesia Induced Dystonia or in medical terms Extrapyramidal Movement Disorders aka Acute Dystonia.
Whatever you call it, neurologists should catch it and treat it immediately, but no one did. They continued to put Emmy into sedation over the following days and weeks overwhelming her with drugs, that caused her this full-body dystonia. She was even put through a brain biopsy, which ultimately resulted in us living in the ICU for 8 continuous months. The same room, room 30. The same beeping. The same nurses (Thank GOD). The same chaotic hell over and over and over. If there was any chance that something could go wrong, it did. Trapped and hopeless were the only words I knew.
From December 2015 to March 2016, Emmy was afflicted with this dystonia that resembled a person covered in fire ants (Thanks for that analogy Pastor Randy). Then, when one neurologist (who shall not be named) insisted on putting Emmy on a movement disorder drug intended for Parkinson’s disease. This severely increased her full-body dystonia. While some have good results from this medicine, the large doses and frequent increases resulted in another movement disorder called Neuroleptic Malignant Disorder. All I can say to describe what Emmy’s body looked like was the Exorcist. Arched back. Eye gaze stuck to the left. Arms flailing. Loss of all emotion. And the worst thing to see… her tongue pulsing in and out of her mouth all hours of the day. We were in a literal hell. Hell without hope and no end. Even the nurses cried with me. This all lasted until God gave us the information to fix these problems. However, it took months to see the results of God’s faithfulness. And remember, none of this had ANYTHING to do with the genetic disorder that was inflaming her brain and casually eating away parts of it. One thing to note, is that this was all induced from medicine. Sure, this medicine was okay to give to healthy people with healthy brains, but for Emmy this wasn’t the case. Oh yes, I was ready to leave Boston. I felt like it was cursed the minute we landed up until the moment we left the state.
When you have time, read up on the pinned post on Emmy’s page. I will never be able to fill everyone in on the long journey through the “shadow of the valley of death” until l can write it all down in a book. So until then, I will try my hardest to catch everyone up and continue to give updates on Emersyn’s progress here in Arkansas. And yes, we love Arkansas so far, despite the house we bought was a complete mess and needed thousands of dollars of appliances and work done. The people are kind. The weather is balmy. But the peace is amazing. Peace that has been a long time coming. As always, continue to keep us all in your thoughts and prayers. Emmy will be starting all her therapies soon, plus starting 5th grade. Ella will be leaving in a few weeks to start her life as an adult at Loyola, while Eli starts a new high school and Everett joins the wild band of 3rd graders. I am nervous for all of them, but especially Emmy. She doesn’t talk well (even though her vocabulary is out of this world), she’s unable to use her legs and arms and many people mistake her for someone who is mentally handicapped. I am hopeful she will learn to trust others, give them some grace and remember how incredibly determined she is. Her life is hard and she needs a lot of encouragement, which I trust that the Cabot school system will give her.
Enrolling in school… The receptionist thought they were twins and Everett was the older one… Not quite, Emmy is 11 and Everett is 8!