Archer's Journey

February 28th, 2023 is Rare Disease Day. Chances are it's rare that you know the date or significance of this day. Why, because it's rare that you or your loved ones are affected by a rare disease. A small percentage of us out here in the world know about the rare day. However the rare population that DO know about the day are fully aware. They may not all order their steaks rare, but they do have a rarity among them! While it's RARE that I share today, given I haven't in nearly 5 years. Even more rare is the day I choose to bring my voice back happens to be National Rare Disease Day, coincidence I think not!   Where in the world has Archer journeyed too? Well I should say, he has became quite a jay bird, rightfully so as any nine year old does and will, a strong will at that. He is finding out what a personality one can have! Jay birds are bold and known for their raucous manner. Archer has learned his voice gets him what he wants, any sounds, louder the better. More o...

As many of you know the little prince has Cortical Visual Impairment (CVI). We consider this to be his greatest challenge in life.  Thankfully we when we set out on our journey, we found organizations making statements about the necessity of CVI. American Printing House for the Blind (APH) upholds the following statement, produced in 2008 on CVI. "Children who have Cortical Visual Impairment (CVI) require educational supports that are equal to those who are considered to be blind or visually impaired." When assessing how to propel him forward in life we quickly understood it comes down to LITERACY. He is happy to simply move around his world by feeling, smelling, and listening, BUT THEN the frustrations set in. He has vision, and he needs assistance to guide him into accessing his visual world. This BEGINS with building his literacy skills. We use approaches researched and developed by Dr. Christine Roman-Lantzy. We have changed the way we interact and have learned ...

I have been branching out in my advocacy efforts and what I have learned is MOMS, yes MOMS, we are the ones whom wake up with premature wrinkles because we unfortunately not only live it, but we dream about IEP's. And this is why I wake with spry grey hairs.  I took some time to share our story, focusing on the impact of the diagnosis of Cortical Visual Impairment. Check it out if you haven't already! https://cvimomifesto.com/2018/01/22/moms-on-monday-11-cheyanne-from-nv/

We have a 4 year old boy! He loves to be happy, don’t we all right? Archer’s vocabulary has begun to expand exponentially. He chooses to express words with great intonation. Awesome, cool, and Wow are a few of his favorite words, along with soccer ball, and "play rocks". His new favorite actions are to stand at the door and with slight demand say, “open door handle!” I knew, all in time we’d be blessed with his spoken language. A few words where there, but lingered for months. What did it? Being around his peers speaking at preschool. This provided him the experience needed to synthesize his own spoken language. Hello, language neurons, thank you for sparking and connecting.    Ha-PPY, is a feeling Archer understands, and will be quick to express if the situation presents itself. As a parent of a child with challenges, introductions can be tough and stir-up several emotions. I choose to explain how he loves music, being outdoors, and getting dirty. He can count...

Yesterday afternoon as I drove home from dropping Arch off at preschool a feeling of solitude wrapped me in joy. As the sun shined through my window, the silent air filled with solemn breath. I was alone! I slowly shifted down into second gear to make the final turn towards home and I smiled to myself, of the blissful moment that has been waiting its turn so patiently. Walking in the door I see the daily calendar. I'm a day late, so I pill off the paper to reveal the days message. It reads " Do you have the patience to wait until your mud settles and the water is clear? " Here I am folks, Hello, I've missed my words, but with good reason they went silent. It was the return of seizures that took my breath away. I thought we won that battle back in year one. This was hopeful thinking. Although I wash the medicine syringes twice daily, it seemed the days would come to an end. Instead the seizures returned, not with a vengeance like some children, with just enough of...

Life is instinctive and we have been wired to react; move quickly, do not delay. Well, delay, was introduced to my life a little over 3 years ago, and with that a world full of deprivation. Deprivation showed its face when my breast-fed child struggled to melt his gaze into me when intimately being nourished. The damaging lack of material benefits considered to be basic necessities in a society, deprived. The face, a considerably complex image to interpret for a child with cortical visual impairment. Inside these little dears’ skull, structures are lacking or have been damaged depriving the visual processing center and visual pathways of the brain. My son is unable to experience a sense of relief by visually capturing my face. When he needs a “security” check-in, the simple reassurance of finding my face is inaccessible to him. It is estimated 80 percent of what children learn comes to them through their vision. Archer does not learn by watching others. His world will neve...

As year 3 of parenthood rolls right on by, my voice begins to elevate further into the world. One single voice , enrolled, to decipher her son’s expressions. Translating the communication of his experiences with writings, my own skewed scope.   Why share? Why give Voice? To spread the vision of rare disease. Rare individuals DO positively impact our world.   We were welcomed to parenthood with a RARE experience, but not as rare as some families’ lives. The families we now relate with, some never even having met in person, but we share these rare experiences, that are even rarer from each and every rare child. According to globalgenes.org 350 million people worldwide suffer from rare diseases. Approximately 50% of the people affected by rare diseases are children. Imagine this… if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. But, WHY do we not hear about these rare diseases? It is hard for one...

When one says “oh it is in my genes,” this is the generalization of gene inheritance. In high school biology class, you may have experimented with recessive and dominant genes, and learned combinations for certain features. If you are a female, like me, you may have even gone as far as planning what type of genes you were looking for in the man to be the father of your child/ren! In Archer’s case, the long, curly eyelashes came from my dominant genes and thankfully he got his dad’s toes, however his genes had a few hiccups of their own, considered to be variants of unknown significance . Think back again to biology class, the parts of the organisms, maybe even the songs you made up to pass the tests, specifically the spiral like structures with “arms” housing the DNA, this is where Archer has a duplication and a couple of deletions. Three of his genes have “arms” either with extra material or lacking codes to complete the sequence. Long story short, the exact location of variance ...

The summer flew by, just as Archer has been soaring with development! Spending vast amounts of time on the road I often relate route maps and traffic to brain activity and the fluidity of Archer’s neurons. When approaching construction, a slow vehicle, turns, bumps, crossing animals, even pedestrians, really any sort of obstruction in my path, I’m reminded to allow this change in pace to occur. A reflection of how Archer often gets on a pathway ending in a round-about. His central nervous system needing the education to turn, to explore a new pathway. The work of AnatBanielMethod® Neuromovement ® teaches Archer where the turns are, how to slow down and approach with awareness, and ignites his abilities to imaginatively explore his world. Sounds like what childhood use to be, right?!?! We were very sad for summer to end and daddy's return to teaching kindergarten. But as Brandon started his first week of school, Archer also got back in the saddle of learning with a trip to Cali...

Today I rose with my husband before the sun crested over the eastern peaks of the Ruby Mountains. A glowing ring settled on the horizon of those jagged peaks, bouncing off the bowls filled with snow, silhouetted by the darkness of the night, slowly giving way to the rising sun, this is the new view from our home. The very place our family will settle, a solid foundation, building a sanctuary of love, here our roots grow deep into the cooling earth of Autumn. As the sun rises, it lifts light into my soul, and shines beautiful message right onto our wall. Reflect today. Write. Share. Tis the season, and today I choose to take a spin on the story of Archer’s Journey, allowing my words to reflect a different person and different point of view.   MAA! MAAHH!! Archer, Archer, ARcher! I let my mom know I’m awake for the day, little does she know last night when I wanted to go to bed early, I knew. I knew it was my mom’s birthday tomorrow. I let her know I wanted to go to bed extra ...