This is an abbreviated storytelling of the first four years of my amazing parenting journey with Malachi, the boy who came roaring into my life in January 2018. He is a little spitfire full of energy and BIG personality. He is the very best part of me.
January 19th, 2018: I met Malachi for the first time in the wee morning hours. I had to be put under anesthesia for an emergency c-section and, after he was born, Malachi was taken immediately to the NICU at the University of Washington Medical Center, our birthing hospital. I woke up from surgery sometime later to my husband Jason telling me that the team transporting Malachi to Seattle Children's Hospital would "swing by with him" before leaving. I was still very groggy when he was brought into see me. He was in a specialized transport unit to keep him safe on his journey. I remember his little foot sticking out of the blanket. That little foot was really all that I could touch. Every other part of him was wrapped or strapped or covered with some type of medical device.
It would be another two days before I could see him again. During that time, Malachi underwent his first major surgery, about 12 hours after birth, to close the lesion, or opening, in his spine caused by Spina Bifida. The next day, he was back in the operating room for brain surgery, to install a device, called a shunt, to treat hydrocephalus, the build-up of fluid in the brain. During both of the surgeries, I was stuck at a different hospital down the street. The surgeries went well, but the separation was traumatic.
This sequence of events was, for the most part, planned months in advance. We had received the in-utero diagnosis of these conditions and were aware that we would be separated, and that Malachi would undergo these surgeries in quick succession. None of that prevented the trauma of the experience.
January 24th, 2018: The first time I held Malachi in the NICU at Seattle Children's Hospital. He was still recovering from his first two surgeries, and it took several nurses to lift him from his little nursery bed and place him in my arms. I was so afraid to hurt him, but the nurses encouraged me to hold him as soon as possible. I am glad they did. Even if it was really scary at first.
January 28th, 2018: Our first family photo. Malachi was one week old. Jason had already traveled back to our hometown of Yakima, WA, some 2.5 hours away to work during that previous week. He returned that next weekend, as he would most weekends for the next 7.5 months. I believe my mom took this picture of the three of us.
June 2nd, 2018: Our introduction to the Trach-Vent Floor at Seattle Children's Hospital. This is our (now) "regular" Floor unit. This is the floor where Malachi stays during every hospital admission. We now LOVE this floor. However, back in June 2018, we were just getting acquainted and were overwhelmed, to put it lightly. We already had five incredibly rough months behind us. Malachi had undergone open heart surgery to repair two holes in his heart (atrial septal defect, ASD, and ventricular septal defect, VSD) and a tracheostomy, the recovery from which made me feel certain that we would lose him. (The recovery was terrible.) His first shunt had also failed, leading to a second brain surgery to repair the devise, and he was hit double-whammy with both a respiratory virus and gastroenteritis, while recovering from his trach surgery in the PICU. He had also grown dependent on the pain medications given following these surgeries, and it took months of grueling withdrawals to wean him off. By the time we made it to the Trach/Vent Floor, everything had somewhat stabilized, at least for the time being, and we were ready to begin the medical training that we would need in order to take Malachi home with us.
September 1st, 2018: Malachi was discharged from Seattle Children's Hospital in late August. We came home with a lot of new medical equipment, contracts with medical suppliers, who delivered more equipment and supplies to our home each month, and several home nurses to provide support for us 18 hours each day. We immediately started Early Intervention (birth-to-three) services, with providers coming into our home each week to work with Malachi. This included a home educator, physical therapist and speech therapist. We had a local pediatrician and a local dietician. But, still, there were A LOT of emergencies and A LOT of travel back and forth across the mountains from our home in central Washington to Seattle Children's. Malachi was followed by many different specialists at the hospital, and everyone needed to see him. I cherish those first months with Malachi at home. He was the sweetest, most lovable and squishy baby. But holy hell.... They were really hard; hard and scary and unpredictable.
January 19th, 2019: Malachi's 1st birthday. It was a giraffe theme -- Malachi's favorite animal at the time. He had an amazing cake courtesy of a nonprofit organization called Icing Smiles. We celebrated at our home in Yakima with my parents, my grandparents and my brother Kaleb. We had celebrated the night before with a virtual book party that so many of our friends and family joined. We are still so grateful for the support we received from our extended community during that first year with Malachi. We will always be grateful for the love that was shown to us. By the time Malachi's first birthday rolled around, he had experienced his first major seizure that caused him to be flown on a medical flight from Yakima to Seattle, where he was diagnosed with a seizure disorder, which would later be reclassified as epilepsy. He was also showing significant signs of food allergies and GI issues. There were still a lot of ongoing medical challenges and even more ahead.
May 1st, 2019: A second, long admission at Seattle Children's Hospital. Malachi was admitted to the hospital on April 1st, 2019, after another big seizure and medical flight across the state. It was his second seizure and second flight in two weeks. When we arrived, I told Jason that I was "done" living that far from Malachi's care team. I told him that we would not be returning to Yakima and that he needed to help us find a new place to live in the Seattle area. (There was soooo much trauma involved in all of this!) At the time of admission, Malachi was deemed Failure to Thrive and was reacting so severely to food and formula that he was unable to eat. It took five months to identify the foods that were triggering reactions and to create a formula that could support his growth. During this time, he also underwent a surgery to implant a feeding tube in his abdomen that would further support his nutritional needs. Malachi has been on a home-blenderized, whole-food diet ever since and has continued to grow and thrive.
October 31st, 2019: Halloween at the local library. Malachi was discharged again in August of 2019, and him and I moved into a little, high-rise apartment in downtown Auburn, Washington, just south of Seattle. Jason was still living in Yakima, working during the week and traveling to spend weekends with us. I had been hired at a new job, working remotely, running digital platforms for a local Chamber of Commerce. Upon discharge, Malachi was introduced to a new team of home nurses and transitioned to a second Early Intervention program. He continued to receive physical therapy and speech therapy in our home, along with visits from a vision specialist, a deaf and hard-of-hearing teacher, and an early childhood educator. We were beginning to venture out into the community on short trips. We were slowly gaining confidence.
November and December 2019: It was both a wonderful and very lonely holiday season. We spent a great deal of time alone, just the two of us. Jason was still away during the weekdays and my mom, who up until that point had been a frequent visitor and semi-permanent fixture in our home, saw her responsibilities in Yakima increase as her parents (my grandparents) began requiring more caregiving support. Still, it was a really nice Christmas with Malachi.
March 1st, 2020: Malachi's first trip to the beach. Jason had found a new job and relocated to the Seattle area in the first weeks of January 2020. We were just becoming accustomed to living together again as a family unit. We were trying to get out of the house more and explore the surrounding areas. We wanted to give Malachi new experiences and show him new things.
July 10th, 2020: A new home and another new beginning. The pandemic was officially upon us and had thrown us deeply into isolation. We knew that Malachi was extremely high risk, and we needed to do everything we possibly could to protect him from exposure. We practically barricaded ourselves for months in that little apartment in downtown Auburn. Then, when we finalized the sale of our old home in Yakima, we purchased a new one in a suburb community north of Seattle called Lynnwood. The house was a total wreck, and we spent another few months working virtually with contractors to tear up flooring and install hardwood, rip apart doors and expand entryways, and punch holes in ceilings to install electrical work and lighting. Finally, in early Summer 2020, we made the move.
July 23rd, 2020: Visits to the hospital continued. Necessary medical care doesn't stop, even for something as serious as a global pandemic. It simply becomes a whole hell of a lot more complicated, risky and stressful. I cannot even begin to count the number of nights Malachi has spent in the hospital, the number of clinic appointments, procedures, x-rays and imaging, hours spent in the Emergency Department, etc. Just... a lot. All of it. And it kept coming.
August 9th, 2020: The annual (virtual) WALK to END Hydrocephalus with Malachi's team: Giraffe Band. After Malachi was born, I made efforts to connect with local and national organizations that were disability focused and diagnosis specific. This includes the national Spina Bifida Association and Spina Bifida Advocates of Washington State, as well as the national Hydrocephalus Association. I became involved as a volunteer, serving as a board member and on public policy committees, as well as organizing a team for annual fundraiser walks. Our involvement continues. These are important things.
October 2nd, 2020: More fun. As the pandemic continued on and on, we realized that we needed to find ways that we could still show Malachi the world and gain new experiences, while also remaining safe and protecting our high-risk little guy. It took continuous effort and commitment to remain cautious, but we did it. We found a whole world of fun things to do.
October and November 2020: Family Advisor and Patient Ambassador for Seattle Children's Hospital. In late 2020, I became a Family Advisor at Seattle Children's, and Malachi was inducted into the role of Patient Ambassador. He was selected to serve as the featured patient for the hospital's end-of-year/holiday giving campaign. There were photoshoots, and camera crews came to our home. Malachi's face was everywhere! It was amazing to be part of such an important cause, helping to raise funds to support other kids like Malachi. And we continue to actively support fundraising efforts at the hospital. We feel that it is important to contribute to the community in that way.
March 4th, 2021: Through the months, Malachi kept on growing and changing and learning and showing us more and more of his amazing personality.
March and April 2021: A third, long hospital admission. For years, Malachi has experienced very severe stomach pain. The pain is so severe at times that it triggers significant seizures. That stomach pain, followed by seizures, is the primary cause for Malachi's visits to the Emergency Department and admissions to the hospital. In Spring 2021, the pain became so constant and the visits to the hospital so frequent, that we requested that he be admitted for further testing and procedures to try to determine a cause. The admission lasted six weeks, and no immediate cause of the pain was ever identified. He continues to experience sudden bouts of severe pain to this day. We have continued our work to try to identify the cause.
December 5th, 2021: A special visit from Santa. As we continued to isolate through the pandemic, we were lucky to receive an outpouring of support from the community. We felt so loved by so many. One of the very special opportunities came from Santa Mark, who made a special visit outside at our home.
January 22nd, 2022: We celebrated Malachi's 4th birthday at our home in Lynnwood. It was just the three of us, but my family joined in by Zoom to sing "Happy Birthday." We had a Crayola theme, and Malachi unwrapped boxes of color crayons, markers and paint sticks. The kid loves his art supplies! We ordered a dozen ice-cream cupcakes from Cold Stone, which Jason and I enjoyed over the next several days. We celebrated Malachi's birthday, rounding out the tail-end of a five-month-long stay in our camper outside our home as both of the bathrooms were under renovated. The renovations extended far longer than originally predicted and came to include a complete re-piping of our home along with repairing the sub-floor of both bathrooms that were damaged from old leaks. It was a rough, very strange winter in the camper, but the project ended with a newly renovated Master bathroom and a fully accessible main bathroom.
April 17th, 2022: More community outings. The pandemic continued on, and so we continued on finding ways to get out and enjoy community get-togethers, while remaining safe and protecting Malachi's health and well-being. In Spring of 2022, Malachi attended his first Easter egg hunt at the church that we joined during the pandemic due to its continuous engagement and virtual services (in addition to beliefs that we supported as a family, obviously).
May 14th, 2022: We planned a lot of family outings to nearby places -- especially parks and cool downtown areas with funky coffeeshops and public spaces.
June 21st, 2022: Vaccination day. This is a day we had long awaited -- the day that Malachi would become eligible for the COVID-19 vaccination. We have remained cautious and continued masking in crowded places and maintaining a safe distance from those without masks, but the fact that Malachi is now vaccinated has brought immense relief. We were lucky to be invited to join in a press conference at Seattle Children's Hospital that officially opened the vaccine clinic for young children under age 5. In fact, Malachi was the very first kid in Seattle to receive the vaccine on that date.
Summer 2022: Throughout the summer and early fall of 2022, we continued to explore nearby places. We began venturing out more often to Woodland Park Zoo in Seattle. We traveled in our camping trailer to more far-off destinations, including some out-of-state travel. We continued to support local fundraising efforts benefiting Seattle Children's Hospital, and I often will participate as an event speaker. After over two years of separation from the larger community, those busy summer months felt really, really good.
Fall 2022: Even as the seasons have changed, our longing for new adventures has continued to grow. In September of 2022, I resigned from my job to focus on Malachi's needs and to support his transition into a home learning environment. Malachi is currently receiving educational services through a hybrid model, utilizing both public and private supports, and I am homeschooling him. This model allows us the freedom and flexibility to tailor his curriculum and his schedule to better meet his individualized needs. It also gives us the freedom to truly lean into learning through experiential opportunities, including more travel and community-based activities. We are deeply excited and look forward to what this new lifestyle change will mean for our future as a family.
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