Let Me Tell You Why
There is this girl, she is kind, funny, smart, compassionate, and her hugs melt even the coldest heart. Kassidy was born on Kauai, in the sleepy west side town of Kauai, on St. Patrick's Day, 2009. She came in at a whopping 8lbs 12oz, fat rolls everywhere, a very silent almost hoarse cry, and a mop of blonde hair on top of her head. She took my breath away when she was born, and even more so today. Kevin and I felt like the luckiest people on the planet and also two of the most clueless people when it came to having a baby.
I never understood those women who were tuned in to all things pertaining to babies, baby paraphernalia, breast feeding, breast pumps, diapers, butt paste, baby food, strollers, carseats, carseats that attach to strollers, we were completely out of touch. In lieu of the fact that we were stuck on stupid when it came to an overall knowledge base, in regards to babies. One thing we both noticed as Kassidy grew into the most stunning infant you have ever laid your eyes on, was her lack of growth.
We had a solid group of friends whose babies were all born around the same time. Kassidy was not progressing like the other babies. And because our friends are wonderful, kind, and loving people, they reassured us, "Don't worry, she's just a late bloomer." "Don't worry, she'll crawl." "Don't worry, she'll get there." We heard the same thing from her pediatrician. He would draw a bell curve and point out that she was just on the later part of the curve. Be patient. Wait. She'll get there.
Our instincts said quite the opposite.
Now, I'm a firm believer that the universe places you in certain situations at the most opportune time. When Kassidy was about 9 months old, we were at a friends house for a bbq. I was clucking with the other hens at the party, and mentioned that I was worried that Kassidy was not progressing like her peers. My friend asked, "You try Easter Seals?"
That was the turning point...
From the time Kassidy was 10 months old until she aged out of the Easter Seals program at 3 years, she received weekly physical therapy, monthly speech therapy, monthly occupational therapy. She was evaluated regularly to track progress and create new goals. We were very lucky to receive these services. During this time, and as Kassidy grew, troubling behaviors began to emerge. For one, she never slept. Like, NEVER. I'm not talking that phase during infancy when the baby needs the boob 24/7. She would wake up at 1 or 2 AM, ready to party. And party she did, there was the naked glitter incident, peanut butter incident, 18 pack of eggs incident, brand new bag of flour incident, and I've got quite the catalog of poop incidents. I'll save those for another post though. She would also rock back and forth, everyone always thought she was dancing, but we knew better. She would have severe and intense meltdowns for no apparent reason. She would lash out at me especially, scratching, hitting, screaming, pulling hair. And when she wasn't lashing out at me, she was turning her aggression on herself, banging her head on walls, scratching her arms and stomach without flinching in pain, picking the skin off around her nails, pulling out her own hair, sucking on her finger so hard, she actually sucked the nail off, twice. She showed no feeling of pain when she did these things. It ripped us to shreds inside to see our toddler, our beautiful, angelic little girl do this to herself. Physically, she was healthy, but everything else felt so unhealthy.
During our time in Easter Seals she received her first label. Sensory Processing Disorder. A condition in which the brain has trouble receiving and responding to information that comes in through the senses; sight, smell, taste, touch, and hearing. Made sense (no pun intended), it still didn't seem 100% applicable, but we went with it. I began researching toys, games, foods, activities to help her integrate these senses that seemed to be causing dysfunction. My small, 500 square foot house, became a maze of trampolines, tunnels, and toys with varying textures. Kassidy loved the variety, but my efforts still felt empty, because she wasn't getting better. She still lashed out on her own tiny body, and on me.
It was also this time that I began researching skin irritants and began making my own household items. Laundry detergent, toothpaste, deodorant (failed miserably at that), household cleaners, etc. I became a DIY and Pinterest hoarder. I noticed that when I switched to making my own products, Kassidy's propensity to obsessively scratch her legs diminished. I have no scientific proof to back up my claim but any relief from the constant scratching, picking, and bleeding, did not go unnoticed. That feeling of relief was bookmarked in my brain and it became an integral part of our lifestyle. I became a bit of a crunchy mama.
When Kassidy turned 3, she aged out of Easter Seals, and our family went through a dark period. I was pregnant again, we were living on Kauai but we were living off the grid. Sounds romantic, but it wasn't, having to rely on mother nature to provide energy and water, it was a very unreliable way to live. It was muddy, everything was always either moldy, dusty, or muddy. I was finishing up another grueling semester, while pregnant, when I got a call that my dad was in a motorcycle accident and was in the hospital. A week later, I was back in San Diego and a few days after that, I had him removed from life support. Kevin and Kassidy flew out as we said a formal goodbye to him. All the while, Kassidy was still out of control, still not sleeping, still injuring herself and still lashing out at me. With the stress of pregnancy, I worried about how she was going to treat her baby brother.
The first few months after my son was born, were a nightmare. We had no help anymore, I was mourning my father, and dealing with postpartum depression, not to mention that after spending a month and a half back in San Diego, I was terribly home sick. Kassidy had wandered off early one morning, so we woke up to her gone, it was the worst moment in my life. I had caught her kicking her infant brother in the face (he's fine, she was in her carseat and had reached her foot over to his carseat). Adding the elements of nature and a strong desire to be anywhere but where I was, our family was a mess.
We reached out to a family therapist to help us with Kassidy. We were at rock bottom with her. After a few sessions, we had a few minor wins with Kassidy, but overall a considerable amount of stress still fueled our daily lives. Our therapist felt that Kassidy, if tested, would probably show up on the Autism spectrum. A diagnosis I had a feeling would eventually come and was honestly pretty prepared to receive. But because there was so many inconsistencies with Kassidy's behaviors, she didn't feel 100% confident that Kassidy was autistic. What she suggested to do was a comprehensive evaluation with the DOE and genetic testing. In Hawaii, there was only one geneticist so we had to wait about 4 months before we could get an appointment. In the mean time, Kassidy did evaluations and testing with psychologists, PT's, OT's, and speech. When everyone was done and had their findings, it was determined that Kassidy was in fact, on the autism spectrum. No big deal, we were ready for that Dx.
We eventually got to meet the geneticist on Oahu. Our appointment was about and hour and a half long. He gave Kassidy a physical, asked me loads of questions, pointed out physical points on Kassidy's body that indicated a genetic anomaly. He suggested a few syndromes that I had never heard of, that ironically now, I am very familiar with. We went home that night, the next day I took Kassidy to get blood drawn and sent off to be tested. Three weeks later, we had a diagnosis. Smith-Magenis Syndrome; a deletion of the 17th chromosome.
Thank you universe, we are not shitty parents and she is not a bad kid!!
For us, this Dx was a ticket to freedom. All of our concerns, worries, all of the gut feelings and intuitive thoughts were completely valid. While SMS is a rare genetic disorder, our world became infinitely bigger because we now had a community of people who shared similar stories, and we are so grateful for this tremendous support. I'm constantly in awe and humbled by the SMS community. There are families who deal with far more than we will ever deal with in the SMS realm, but having this family of people to share concerns with, share milestones (milestones are always a big deal with a special needs child), share accomplishments, share horror stories, share it all, uncensored, has meant everything to us. SMS is a beast but we love this community so much and are so grateful.
So if you've read all the way to the end of my little story here...Let me tell you why I began this little lotion business. Simply, I saw results. Among all the chaos of Kassidy, our living situation on Kauai, dealing with death and birth, a small beacon of light was exposed. These little lotions and balms that proved more effective than traditional remedies to skin ailments. Most of all, despite Kassidy's sensory issues, she is more apt to use my homemade stuff. She still picks the skin off around her fingers, but my Prickly Pear Skin Repair helps to expedite the healing quicker, instead of traditional store bought remedies.
That's my why. Kassidy is always my why.
Thank you for taking the time to read my story, I'm very grateful.