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Sunday, September 14, 2014

A sad goodbye to a dear friend


borrowed from facebook ♥
About 2 1/2 years ago, I got an email in response to a blog post I had written. The email was from a sweet young lady named Danielle, who had some similar medical conditions to Raya's. Danielle was 24 years old and had been through some incredibly difficult struggles in her life. She was very open with me and with the world through her blog "Thriving Anyway" about her struggles early on in her teenage years with eating disorders, which led to gastroparesis. Combined with other chronic illnesses & conditions that she was diagnosed with along the way (Ehlers-Danlos, mitochondrial disease, autonomic autoimmune ganglionopathy, developmental disorders, and sensory processing disorder), she had the deck stacked against her in a big way, but she never let those things overtake who she really was.

From my first interactions with her, I knew Danielle was special and I felt a deep connection with her. I have not met many people as articulate, passionate, hopeful, and intelligent as Danielle. I have always felt like a pretty smart person but I admit that there were times when Danielle emailed me to tell me about her latest medical emergency, and I had to google some of the things she wrote about. I don't think too many twentysomethings can explain the importance of adequate albumin and prealbumin levels, or what happens when they dip too low, but Danielle could. She taught me what it means to take control of your life and medical care. No decision was taken lightly. She researched every treatment, every alternative, every option, and put a great deal of thought and prayer into every aspect of her medical care. After going down a dark road through her eating disorder journey, she had turned the corner and become fully invested in preserving everything she had left.

Danielle often told me that she looked up to me. Really though, I looked up to her. Although we never had the privilege of meeting in person, she became enamored with Raya through the stories I shared on my blog, and because of things she had been through in her life & childhood, she felt a connection to Raya and a kinship with her. I received many kind, heartfelt emails from her in response to blog posts I wrote on days when I was having a hard time with different aspects of Raya's care. She was always able to offer me insights from a different perspective, as someone who had been through many of those things herself. This summer, she wrote a blog post on her blog about "quiet heroes" and included a paragraph about Raya that warmed my heart and made me smile. (here's a link to that) Her emails always ended with things like "I always have little Raya in my prayers!" Even when she was struggling with miserable bowel obstructions or recovering from near-death septic infections, she was always thinking about other people and would tell me she was praying for me and Raya and our family.

As an adult with gastroparesis, Danielle was a wealth of information for me. We exchanged many emails about food, and how to work around gastroparesis. The limited amount of information that I have been able to get from Raya about how foods make her feel has always made it difficult for me to guess what to do next for her, but Danielle was able on many occasions to give me more of that firsthand insight into how Raya might be affected physically by eating certain things. She was able to offer advice and suggest foods that might work better for her than what we had tried, and I deeply appreciated that. We were also able to exchange experiences with formulas and various medical supplies, and ideas for "tubie hacks," meaning ways to use medical supplies creatively in order to meet our needs. She even sent Raya a cute new feeding pump backpack once because she said that she had felt the Holy Spirit tugging at her heart and wanted to do something special for Raya.

Beyond the simple sharing of information though, we shared each others joys and sadnesses. I was brought to tears many times by sweet messages she would send at just the right times, and I know that I was prompted by the spirit on many occasions to send her my love and support on her dark days too. She was a woman of faith, and she shared with me often the conversations she had with God, and what she felt His responses to her were. She was so kind in encouraging me to keep sharing Raya's story on my blog. After she had read one particular blog post, she wrote to me about how seeing a picture of Raya on a bad stomach night holding a Farrell bag that was full of her stomach contents had triggered a flood of emotion for her. This is what she said:

Brandis, I have to be honest with you. This wasn't a time that I could laugh. It very well could have been! Raya is all sorts of resilient, and there is just something very special about her...I cannot describe. But I just started weeping."
I really prayed about this last night but I still don't understand WHY this had me eruping in tears. I don't even think in that moment she even felt sick! But I don't want this to be her "new normal".
I am amused. As well as angry. If these peculiar subset of odd, inexplicable symptoms were to happen to any child, it would be strong willed and determined little Raya.
But it shouldn't have to be...
God is very interesting in the way he chooses to teach us life long lessons. And by that token, he also takes these weird high roads and SOMEHOW uses them to teach lessons not just to you, or your family, your friends or your church...
After the launching of the internet, all of us that have needed to see this: a mother and her human-ness, a little girl who again and again proves with tooth, nail, and claw that maybe just by the SHEER Grace of God that she will overcome anything that has been thrust in her way.
Maybe the tears began in the name of sadness...but I will tell you this: they ended in the name of victory."


And THAT is Danielle Nicole. The tone of that message was a common theme in all of the messages she sent me over the last 2 1/2 years.  A beautiful mind and incredible soul in a broken body. An encourager. A giver. An inspiration. A breath of fresh air. Although Danielle's fragile medical state in the past couple of years prevented her from doing many of the things she had once dreamed of doing, they did not break her spirit or her mind. It was nothing short of a miracle that even during the many times that her body started to shut down due to extreme malnutrition (a complication of her illnesses), her mind was still intact and she was still able to form her jumbled thoughts into eloquent works of art. One of her greatest dreams in life was to be an author, and she was a great one.

She emailed me early in August to share with me some very exciting progress she had made with eating orally and her overall health. She said that she hadn't told anyone outside her family yet but that she was feeling optimistic that things were turning a good way for her. Before I even had a chance to respond to her email, she sent me another message letting me know that she was sitting in the hospital at 4 am with an obstruction, and that she was heartbroken and devastated. She said, "I don't know how much longer I can keep doing the food trials. I try them over and over... But I'm stubborn and cannot believe this is my forever. I am not saying there is no hope after all. Far from that." As per her usual, she ended the message on a positive note and said, "But somehow everything is really OK in the end. I at least know, if nothing else at all, that much."

That was the last message I got from her. Her final blog post explained that she had come to a place of peace an acceptance that her body was failing her for good. It is a beautifully written post, and a perfect example of how Danielle was never a victim to her illnesses.  She stated, "I won the war. I am whole. I don't have to constantly fight against a body trying very hard to die while I insist I would like to stay a moment longer. I do not have to devote another second to research regarding my conditions, no longer in and out of clinic and hospital...
...this illness didn't take me, and it never could."



And it didn't. Danielle fought harder than I have seen anyone fight, and when she knew the fight was futile, SHE made the decision to stop fighting. Her fight ended this morning at the painfully young age of 27. My words will never do her justice. She has changed my life and I am eternally grateful for her. I will miss her dearly but I am grateful for all that she shared with me in the last couple of years.


I don't believe that the timing of Danielle's passing was a coincidence. Today happens to be the first day of Mitochondrial Disease Awareness Week. Despite its prevalence, most people are unfamiliar with mitochondrial disease (aka mito). The easiest way to explain mito is this. Mitochondria exist in nearly every cell in the body, and are responsible for generating most of the energy that each cell in the body needs in order to function. For individuals with mito, the mitochondria do not produce enough energy for the cells to function. If the cells don't function, the tissues made up of those cells can't function either. If the tissues don't function, the body systems can't carry out their functions. Mito can affect any and every system in the body. It is progressive and there is no cure. I don't know the statistics, but I know that mito takes the lives of far too many children and young adults every year. People like Danielle, who have so much to offer to the world and to those around them, but are taken from this world far too early. Mito needs to be researched so that treatments can be improved, which would preserve quality of life and save lives.

To learn more about mitochondrial disease, visit www.mitoaction.org and www.umdf.org 

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