Siouxland Magazine - Volume 1 Issue 4

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Siouxland Magazine | Inspire /30 either. It wasn’t noticeable to me at first, but then I started talking with my siblings about it and realizing they also have the same thoughts of constant fear for tomorrow and how this isn’t usual. I would lay awake with the thoughts of what could happen to my family while I slept. I also felt a different kind of grief than I felt with the loss of Mom, Nikki, and Dad. This grief was like waves of an ocean. Grief from loss heals with time. You never stop missing them, and things never go back to the way they were, but you find a new normal with each passing moment. Grief with the diagnosis of a medically complex child left me with a black hole of what I am supposed to do with each passing moment. I isolated further from my friends and have now found that social environments are hard for me to attend with. The trauma tells me stories of how people may see me, and my ego is like a terrible twoyear-old that wants to throw the biggest temper tantrum known to man and my heart aches for the life I thought I would be having. I was ready to have a dozen babies, well not really, but the moment I was pregnant, I knew being a mom was all I had ever wanted, but now I struggle with having one child that is so different from what I thought raising a child would be. Everett trick-or-treating. I suppose it happened when Everett’s disease progressed, and his milestones grew further away from those of his peers. Friendships of mine strained with the depression and guilt I felt for the resentment I had for the life I will no longer be living. It was the biggest rollercoaster of emotions I had ever experienced. Shortly after Everett turned one I quit my job to stay home with him. My motivation was to do whatever it took to get Everett better and me staying home with him would do this, so I thought. This was not the case. Shortly after he turned one Everett started having seizures. These seizures would rob him of the gains he made in milestones. It was consistently two steps ahead and five back. Everett never gained the ability to sit up on his own, only rolling over one time at seven months old, he never crawled, and even holding his head up became an effort we could not imagine. He had the ability to hold his head up, but the combination of high and low tone in his muscles made this ability very difficult. He has never eaten more than pureed food. And swallowing fine liquids goes straight into his lungs. My days were spent managing Everett’s care, which included therapy services and new specialty doctors. When we took Everett back to the neurologist, I was ready to raise hell with the statement they gave us six months earlier, “Everett will be fine, just a little clumsy”. What the last several months showed us was this is not the truth. To my astonishment, Everett was scheduled with a different neurologist. We would live with “undiagnosed” CP as Everett’s diagnosis until the summer before Everett turned three. I have heard of PTSD, and I knew the definition of trauma, but I never thought I would ever be one to suffer from Summer of 2013 we finally received a diagnosis for Everett. Beta-propeller Associated Neurodegeneration, or BPAN. Everett received his diagnosis through whole exome sequencing. At that time Whole Exome Sequencing was a very new way of genetic testing, as it looks at everything. It is spell checking for your genetic code, finding the miss spelled area of genetic coding. I did my best navigating our undiagnosed child’s first two years the best I could, learning most from reading and learning from other parents through social media. The one thing that never crossed my mind was that we would out-live Everett. After the BPAN diagnosis we asked Everett’s neurologist what this means for Everett. He said that BPAN was only discovered a year before, so there is little to no information on this syndrome. We asked if anyone else has this diagnosis. What he told us was no, when the truth was yes, but not many. I found out 3 years later that there was an entire research group looking into BPAN and had discovered it while researching another syndrome within the same family. Everett had a one in a billion chance of this happening. These statements should make me feel relieved, however, anger is all I feel. Why Everett? When I finally discovered the research group, we found valuable information on what BPAN really means. BPAN is an X-linked syndrome and most males do not survive pregnancy. Everyone that has the BPAN diagnosis has seizures. This syndrome is also neurodegenerative. Everett is deteriorating right in front of us with each
Siouxland Magazine | Inspire /31 Everett celebrating his birthday. passing day. I would love to spend all my time finding a cure for Everett, but I am spending all my time making sure that the common cold doesn’t take him from me. Everett is now eight years old. He weighs 65 lbs but keeps his mom strong. His seizures are being controlled with a ketogenic diet. He has dystonia and hypotonia; CP; doesn’t drink any fine liquids orally, but through a gtube; an ACE tube to control constipation; osteopenia due to not using his bones as he should; hearing loss; severe optic atrophy; and multiple medications. Even in all this, he tries every day. He is the perfect example of “one minute at a time”. I refuse to have the persona of always having my shit together, when the reality is the opposite. I try to walk with my children through the truths of life; hoping to provide them with tools to work through what life brings them. Jason and I will be celebrating 12 years of marriage this August. We added to our family with two more boys. Lincoln is 4 and Landen is 2. After Lincoln was born, Everett went through his fist regression. It was the first time we realized stress can cause his body to regress. We rebounded as a family and found again, a new normal. Landen was our surprise baby and adds so much value to our family of five. We still don’t know much about BPAN, or what the future looks like, but learning to see Everett with his siblings. the small miracles, such as the ability for Everett to use his eyes to talk to us, are worth living to see. I wish this story was triumphant with the love for God that would cure Everett and all the pain life has brought me, but in retrospect, this also brought a lesson in selfish praying and the idea of what miracles should look like in the reality of what a miracle is which has now propelled me into my spiritual awakening. With the last 15 years being combined with the trauma and continued navigation to life of a complex child, I allow light to shine, even in the darkest of corners. The road is rocky, but I will survive, one minute at a time. Samantha Geurts, born and raised in SW Minnesota has grown to be a wife and mother along with being a licensed hairstylist, yoga instructor and a full-time paraprofessional for the local schools. Photos courtesy of Samantha Geurts.
Page 1 and 2: STARTING CONVERSATIONS RESILIENCE 2
Page 3 and 4: Welcome to Siouxland Magazine Sioux
Page 5 and 6: The purpose of this glorious life,
Page 7 and 8: Editors Note Siouxland Magazine | R
Page 9 and 10: flexible emotional strength open so
Page 11 and 12: Lillyan Rodriguez Positive - Growth
Page 13 and 14: Siouxland Magazine | Resilience / 1
Page 15 and 16: and a warrior to help me get to the
Page 17 and 18: only midway through the year and it
Page 19 and 20: I knew of her and I talked to her a
Page 21 and 22: strengthening our community Convers
Page 23 and 24: Sioux City Scoop | Public Office 10
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Page 27 and 28: non-profit community family small b
Page 29: Just before Dad’s surgery to see
Page 33 and 34: The work of One Siouxland is organi
Page 35 and 36: personal growth leadership Why is i
Page 37 and 38: Resilience: The Greatness of the Un
Page 39 and 40: Siouxland Magazine | grow / 39 From
Page 41 and 42: Siouxland Magazine | Grow / 41 Down
Page 43 and 44: Diversity in Leadership By Sonia Wi
Page 45 and 46: eathe clarity nutrition flexibility
Page 47 and 48: of energy! I drink this stuff Every
Page 49 and 50: can self regulate, get stuck in the
Page 51 and 52: Who Is A Candidate & Why Multicare
Page 53 and 54: fresh air get outside protect activ
Page 55 and 56: Siouxland Magazine | explore / 55 U
Page 57 and 58: A huge thanks goes to those who “
Page 59 and 60: have fun entertainment culture gath
Page 61 and 62: Siouxland Magazine | Enjoy / 61 Enj
Page 63 and 64: as the “Stearman”. If an aspiri
Page 65 and 66: 5678! Dance Studio Adams Homestead

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