Change is the only constant in life. It sounds so cliché but it’s true. Every single thing changes, for better or for worse.
Sullivan became the second greatest blessing of my life when I gave birth to him in January 2018. Shit hit the fan hard after his arrival, however.
Sullivan struggled with major health issues related to constipation and failure to gain weight for months following his birth. We had a knowledgeable pediatric naturopath but he had exhausted all ideas and referred us elsewhere. Specialist after specialist suggested that I just supplement Sullivan’s feed. I was told that Sullivan looked like a person from a German concentration camp by the cardiologist, who found nothing wrong but an insignificant heart murmur. I was told by the gastroenterologist that he was required to report intent to harm should I not follow his suggestions for Sullivan. He threatened to take my baby away! I felt that Sully was just too constipated to absorb the nutrients he was getting but not a single specialist would listen to me.
We frequented a fantastic chiropractor who adjusted Sullivan weekly and that helped relieve the intensity of his ailments of vomiting and constipation. We hired a lactation consultant who confirmed that my breast milk supply was fine and Sullivan was eating well (and a lot). We had a rock solid team of people caring for our little man. Our lactation consultant and midwife became like family. They suggested we ask for a referral to a geneticist to rule out a syndrome which could be causing Sullivan’s issues and his hyper-mobile joints.
The geneticist said that Sullivan was too young to accurately diagnose but Mallory was not. Given her history and Mark’s history as a child, it was determined that Mallory has Ehlers-Danlos Syndrome type III (hEDS) – an inherited connective tissue disorder. This explained Mallory’s ability to bend in some funky positions, and her joint pain and subluxations during sports. This explained the dizziness she feels upon positional changes. This explained her velvety soft skin, stretch marks (striae) which seemed to literally develop overnight, easy bruising/bleeding, and odd scarring patterns. This explained her chronic constipation and need for laxatives for years through infancy and early childhood. This explained her high, narrow palate and need for an orthodontic palate widening appliance so she could properly chew her food as a youngster. This explained so much for Mallory, and also gave the geneticist the clues she needed to tell us that the differential diagnosis for Sullivan was also EDS. They would continue to follow him throughout childhood and could better tell us which of the thirteen classifications of EDS he fit into, given his symptoms, as he ages.
As it turns out, Sullivan’s symptoms are intense and variable. He gagged on nearly everything. He choked on his own spit. His heart murmur’s severity increased for a short while. He struggled with reflux. He has trouble regulating body temperature. He has very hyper-mobile joints which affected his ability to crawl, pull himself up, and toddle. He has joint subluxations. He showed signs of joint pain by grabbing his wrists and ankles after a particularly active days last year. Now, at least, he can tell us when something hurts. Sully has to be on mega doses of laxatives to be able to defecate. He is now gaining weight though.
We have been working with therapists for several months and making positive strides. We see occupational therapy twice a week to work on Sully’s sensory processing so he can eat more foods than just puree, and hand coordination and strengthening to facilitate self-feeding. We visit physical therapy weekly for core strengthening and balance exercises. Most recently Sully is showing lots of weakness in his ankles and will be fitted for braces to help combat this so he can continue to walk without causing a chain reaction of disabilities through his knees and hips and back. We are also going to implement aquatic therapy as an adjunct to current procedures.
Adding another child to our family changed us for the better, but adding one with so many unforeseen health complications has been excruciatingly hard at times.
We nearly changed course this fall when Mallory took a gander at public school. She, once again, decided that it didn’t align with her needs and so we’ve begun homeschooling high-school. This requires keeping a transcript so that if she should decide to join public education, either at a high-school level or college, that we have proof of everything she’s learned.
Mallory is still involved with basketball and a new season is upon us. Upper level sports require a greater commitment of time, and until she has a driver’s license – which is still at least a year off, which means a greater dedication to transportation from us. We are talking hours upon hours of practice and games, at inconsistent changing times, six days a week. “Basketball Mom,” isn’t a title for the faint of heart, and I had little desire to become a chauffeur when I became a mom, though I do so love to watch her play.
Did you know that scientists believe our body’s cells completely change every seven to ten years? Mallory recently had food allergy testing and it was determined that the list of things with the biggest immune responses is extensive. We knew she was sensitive to cow dairy and wheat gluten, though the test confirmed them. It also offered so much more information including sensitivities to: chicken eggs, beef, pork, lamb, coffee bean, banana, blueberry, pineapple, peanut, sesame seed, spelt, wheat gliadin, soy, whole wheat, and GOAT MILK. Gasp! This left us with few options for protein rich, nutrient dense, sustainable, local, organic options. A few weeks ago we began an elimination diet. It’s proving challenging to find things that fit all criteria but this change has resulted in less nagging symptoms in such a short amount of time that she feels motivated to continue and see where it leads.
Somehow, in between our enormous amounts of time in the vehicle, we managed to raise healthy chickens, turkeys, and pigs this year. We feel honored that so much of our organically fed and pasture raised poultry and pork are gracing tables and filling bellies all over the state.
Our goat herd shrunk tremendously last year following Mark’s ladder accident and subsequent surgery. We went into winter with four does. Four! Lady suffered periparturient paresis from hypocalcemia but we were able to save her and her twins thanks to a caring friend with small hands, a knowledgeable veterinarian, and a miracle-working chiropractor. Our two yearlings, Sequoia and Leigh, both delivered beautiful twins unassisted. Sugar threatened miscarriage multiples times over the final two months of her pregnancy but through consistent round the clock administration of herbs we were able to help her hold her pregnancy to term. We knew she looked larger than another other pregnancy but had no idea how large until she delivered triplets. The smile on her face after birthing her babies is something spectacular.
Earlier this year we ran a goat milk fudge give-away contest and that is how I connected with Lacey Hughett, owner of Hughett Heritage Farm, when she won a box of our fudge. Incidentally Lacey is also a writer for Goat Journal, one of the most well known and widely circulated publications in the goat world. She loved our fudge and asked if I would share our recipe for an upcoming holiday issue. I searched my soul for weeks and couldn’t make a definitive decision. It seemed like a spectacular publicity opportunity for our little farm, but it also felt like I was selling my soul by giving up our recipe, even the most basic version. I spent months developing my recipe. Fudge is finicky. There is little room for error or improvisation in the chemistry of it. After all the work I’d done, I wasn’t sure I wanted to just give it away. Lacey understood my quandary and gave me space.
During that time is when Sugar got sick and died. Shortly after birthing her babies, Sugar began to decline rapidly. Supplementing her babies didn’t help with her weight loss. Her milk supply disappeared. Her appetite diminished to only Maple leaves and then became full anorexia. She began having nasal discharge and we were fighting to prevent aspiration pneumonia. After weeks of treatments with our veterinarian, both holistic and conventional, it was determined that she was likely afflicted with cancer of some sort. We made the very tough decision to euthanize her. Before the veterinarian arrived, Sugar found a warm pile of hay in the sun and lay down with an exaggerated sigh. She closed her eyes and rested. Her doelings bounded from place to place around her with eagerness, incoherent of the event about to unfold. I went to be with them. Sugar opened her eyes briefly, watching me with her babies. I told her I would take care of them, and then she let her lids fall and rested her head in the hay. The vet arrived a short time later and we gave her the only mercy we could offer her: a kind departure from this world. I don’t know when, exactly, I expected I would have to say goodbye to her, but I didn’t expect it to be when she was merely 10 years old. Death paints a terrible picture, sometimes. The image of Sugar’s emaciated body curled up in that pile of hay was etched in my mind and haunted me constantly.
One day I decided that as a final tribute to Sugar, I would share our goat milk fudge recipe. After all, we only got into the fudge business because of Sugar’s delicious milk six years prior. I contacted Lacey with my decision, she interviewed me, and I happily inundated her with gobs of photos of our farm; goats to fudge and everything in between. I was so pleasantly surprised when the issue of Dairy Goat Journal arrived in my mailbox. It wasn’t just our shared recipe. Lacey wrote a beautiful article about our journey into goats and Sugar’s beautiful photo was top and center. Oddly, I rarely think of the day of Sugar’s death anymore. I miss her like mad, and the entire herd dynamics have changed, but I am allowing myself to think of her as her photo in the magazine depicts: a queen with incredible strength and beauty; one we were lucky enough to share our lives with.
2018 nearly totaled us; figuratively and literally, emotionally and financially. We didn’t succumb to the icy cold waters pulling us down. We resurfaced in 2019. There have been some hobbling events this year too, but none that put us at risk of losing the roof over our heads and for that I am thankful. Hitting rock bottom though, and then being crippled by the significant loss of Sugar, has altered my sense of direction and desire. Because of the immense amount of time dedicated to our children’s health and education commitments, I’ve determined that I want to explore where the paths of necessity take me. I want to see if the winds of inspiration spark something that sets my soul on fire again. Decidedly, my future is not goat milk fudge.
As the final days of this decade wind down it's important to acknowledge the changes. Time is one of the only things we cannot beg, borrow, steal or buy. Our children will only be children so long and I want to invest my time with them. We may always have goats on our farm, but we will never have another Sugar. The legacy she left won't soon be forgotten, and who knows... maybe we'll make a batch of goat milk fudge to honor her from time to time.