You’re not alone

 "Is there anybody out there?" A haunting line from that Pink Floyd song that drifts into my mind during moments when I feel truly alone. Not the kind of alone where no one is around, but the kind where connection is missing. George Orwell said it best: “The most terrible loneliness is not the kind that comes from being alone, but the kind that comes from being misunderstood.”

For parents like me, raising children with "extra" needs, that loneliness can feel overwhelming. It’s not just about silence—it’s about being surrounded by people who can’t grasp the chaos, the beauty, and the heartache of your daily life. I’ve felt invisible, unheard, and exhausted. If you’ve ever felt this way too, you’re my people, and this space is for you.

Let me give you some backstory. My name is Marni I turned 50 this year. I have four children ages 30, 28, 12, and 6. My two youngest have Down syndrome. My son 12 has been our medical miracle (or nightmare depending on which way you want to look at it.) He was born with a heart defect, did his ceremonial month stay in the NICU unit, and required open heart surgery at 6 months old. We found out he had cognitive hearing loss at 18 months old, he broke his femur at the age of two and had leukemia by the age of three. Throw in a sprinkling of other little surgeries here and there for tonsils and adenoids and 5 sets of ear tubes and that's our boy sundae! The cherry on top came when we were "gifted" our daughter, Lu. Tait had been in remission for only a couple of years when we were asked to add Lu to our circus. We were thrilled (for reasons I will get into later), but I assure you, I was in no place emotionally, physically, or spiritually to be mothering an infant. 

I was in the thick of menopause. My body was at war and playing dirty. I had spinal complications that were becoming too much to endure, I hadn't slept in years because trying to keep my child alive was a full-time job in itself, my cortisol levels were through the roof, energy reserves tanked, and my anxiety was off the chart. So, the obvious choice was to adopt! Go figure, the adoption agency, the courts, and everyone else seemed to agree this was the sanest course of action so our little circus grew from three to four seemingly overnight. Lu's diagnosis of Down syndrome was a surprise to her biological parents and they didn't feel they could adequately take care of her. (This is a whole topic for another blog.)  Lu also has a heart defect and required Nicu care. I joked with all the nurses who remembered me from my son's stint in the Nicu that I was now doing "midnight hot flashes and bottle feeds" due to my advanced maternal age. It was funny because it was true.

Now our family of four is living all snug at my mother-in-law's house. (Oh yeah, I forgot to mention... all that medical hullaballoo and the fact we didn't qualify for Medicaid in our great state of Utah had put us in a financial cluster-duck, so we sold our house and moved in with the in-laws to try and save some money.) Yadda, yadda, traveling husband, yadda, yadda... the 2019 pandemic begins... here we are! The year 2020. My husband was a traveling Respiratory Therapist bouncing between Alaska and Utah. In the summer of 2020, kids and dogs in tow, we journeyed to Alaska, trying to figure out why he kept coming back up. It was beautiful, picturesque even, like something out of a postcard. We enjoyed our time, but I was glad to be back home at the end of the summer. Then came the job offer. We weighed our options. Alaska offered services that we couldn't get in Utah, medical services that were desperately needed, but it would mean leaving all of our friends and family and any support we had and venturing out into the wilderness on our own. It was a hard decision, but we packed everything that we could fit into thirteen 27-gallon totes, loaded them on an airplane, and headed for the land of the midnight sun.

We have been here four winters now. We bought our dream house on a bluff overlooking the ocean with a spectacular view of the volcanoes across the bay. It’s safe to say we aren’t going back. We have planted our roots, and here we’ll stay. While we have had some wonderful teachers in the Special Ed community and met some of the most inclusive families and community members, there is still something missing. There is a lack of connection between families and parents who have children with extra needs. Maybe it’s because we are spread out here in Alaska. The number one or two complaints of special needs parents are feeling isolated and alone. The other top complaint is how the stress is affecting THEIR health. The intent of sharing a little about my story is to bridge the gap. I hope to build a compassionate and empowering community that provides support, connection, and resources. I feel that shared experiences, education, and advocacy can help us foster hope, resilience, and a sense of belonging for those navigating the challenges and triumphs of raising children with unique abilities. 

This blog is my way of building a bridge—for you, for me, for all of us. Together, I hope we can foster a compassionate and empowering community that shares stories, lifts one another up, and reminds us that we are never truly alone. Welcome to the circus—I’m so glad you’re here.