Hello! With great honor I introduce myself, Cheyanne Sparks, to this community. I am an individual of spirit, one that strives to provide an essence of soulful gratitude. Taking the elegance out of my words, simply put I’m a people person. I myself had to work hard to fit in as a child, it started with my curly hair, not the type that is so tight it falls in ringlets or turns to a frizz ball, but the type that takes very tender care to curl, not too much product, nor scrunching. A little guidance, a twirl around a finger and then they are set free to softly bounce freely as they wish. Yes, by the end of the day I may either have flat hair with a tiny curly q at the bottom or fly-a-ways wrapping my face. I like to think if there is still a curly tendril hanging by the end of the day that grace was among me! With these small differences that were apart of me, I learned early on to appreciate each unique individual those their differences and not to question why. I gravitated towards classmates that needed extra care, be that help with an assignment, a conversation in the hall, or a partner for a project. As I grew older, individuals would come into my life that very much appreciated my tender grace. Everyone needs to feel included and that their impact on the world matters. I have lived in USA my entire life mostly in 3 states. Nebraska, so I carry a bit of mid-western twang. Montana, where my soul learned to be adventurous and take risk. Now currently in Nevada, the great wide high desert, where I have settled into the roots of our family. To read more on Archer’s Journey visit www.sparkingtheneurons.blogspot.com!
Welcome beautiful Cheyanne & Archer
Natalie: Having a child with a diagnosis, condition or disability can be life changing. How did your special needs journey begin? What was going on through your heart and mind when you first found out?
Cheyanne: At my 37 week check-up, after a thorough examination my doctor informed me we would be running a few extra tests to make sure all is well. I didn’t think anything of it and am all about prevention and safety. So I followed suit and was at the hospital most of the day, one of the tests included an ultrasound the check the in-womb Apgar. I lived in a small town and knew the sonographer technician so naturally the visit was very friendly. I popped in thinking this was just a pre-cautionary scan, little did I know the keen eye of this individual spotted something, and kept tracing back to the brain. Providing me with supporting language, keeping my mind on the excitement of meeting our first child. THEN, I was informed that the Radiologist needed to read the scan before I left. This had never been the case in previous scans. I waited a long time in that room, my mind starting to question, but then my tummy would move and I would be comforted by the life inside of me. I left the hospital to finish up a few late afternoon errands and was promptly called back in by my OB. Back I went, this time I had to admit myself to the OB ward. My spirits still very uplifted as I was thinking maybe I’d get to meet him a little early, nothing wrong with that, right ladies? Emotions were surging with excitement, very little worry had crossed my mind. The doctor came over to the hospital and let me know my levels had regulated, but that there was something found on the scan. Enlarged ventricles, you say? Okay at this point lots of terms were being thrown my way and I was more focused on the fact that I was able to go home and see my husband, more importantly eat food!
That night I couldn’t sleep, so as the modern world delivers. I got on the web and started searching stories, reading about having to abort, deliveries with severe complications, babies coming out defected. After a bucket or two of tears, my little blessing inside me, full of life gently nudging me to bring my mind back to our connection. He was active in the womb, wiggling his limbs under my ribs, letting me know he had the best mommy ever and he couldn’t wait to meet me. I concluded it was unhealthy for me to live with the fear of what could be. My husband and I were healthy, and passed on any of the offered additional testing. The results of these early tests would have just put more stress on the nurturing relationship I had with life in my womb. Still to this day I do not regret any decision we made. In the wee hours of that morning I made a commitment to my son. The questions, the whys, the could have’s, should of’s, would of’s, what if’s were of little importance. We were a loving, growing pair, and that is how I wanted to bring him into the world!
Natalie: What is the name of the condition that Archer has? Can you share with us a little more about it?
Cheyanne: Archer, our first son, as of yet, took a different path of evolving in the womb. Very early in pregnancy the grey matter of his brain didn’t fully disperse from the middle of his brain to the exterior. I’m referring to the darker outline of the “wormy” looking stuff of the brain. When grey matter doesn’t migrate fully, in Archer’s case it created “clumps” called heterotopias. These “clumps” also are the center for seizures discharges. Additionally, the “clumps” migrated around his enlarged ventricles, pinching his visual cortex pathways to the vision centers of his brain. The enlarged ventricles are a mystery as they didn’t create swelling, which could have led to hydrocephalus and/or the need for a shunt to reduce the pressure of the excessive fluid. The compromised visual cortex resulted in the diagnosis of Cortical Visual Impairment. Another diagnosis on his list is Agenesis of the Corpus Callosum, a complete absence of brain structure, a major communication channel of neural exchange from the left and right brain. Think of this as Archer needing the time of let’s say a telegraph to FIRST process a new experience, while all of us are instantly sending and receiving multiple messages. The brain however is very plastic, and as he learns, grows, and is exposed to new experiences he is catching up to speed. The brain is a fascinating organ, research is just now beginning to unfold the power of a brain that changes itself. The accumulation of all these diagnosis’ boil over to the occurrence of a very rare genetic duplication. One that has never been seen, nor reported in the world before by a geneticist, very few cases even remotely have similarities, but it is not our path to find the answer. Our son is a blessing into our lives and touches so many around him, the genetic discrepancy is the true essence of a miracle. To read more on Archer’s Journey visit www.sparkingtheneurons.blogspot.com!
Natalie: What are your greatest worries and also your greatest hopes & wishes for Archer?
Cheyanne: I believe the worries must not out weight the wishes for our child. Better yet, turn the worries into wishes. Lift the veil of fear. Children exhibit natural empathy, especially if this is portrayed in their caregivers. When they ask questions, be real with them, thoughtful select terms and explanations. For instance I was playing at the park with Archer, helping him experience the slide (his is not yet ambulatory). A little girl bounds up the slide and says, “My turn.” Sort of in a hurry up lady, get out of my way. I kindly informed her there was a slide right next to the one my son was on. She gestured with contentment, but proceed to ask “What’s wrong with him.” We as the advocate and voice for our child get to choose how these comments are absorbed and reflected. My choice to frame the context to share his legs aren’t working as fast as other kids and is still learning to walk. The little girl comment’s “Oh that’s nice that you are helping him!” and goes down the slide, joyfully hopping off and continuing to play.
I find value in having a vision for Archer. That is long term, beyond the day to day, school year to birthday timeline. I fully wish for, and believe in my son that he will be independently interactive in society. We are developing our strategies for a lifetime of potential, opening our doors, providing the least amount of accommodation as possible, however being aware of the need for guiding support. He thrives from interaction, especially with his peers and this is where he will flourish, these are the small goals set in place for him to become independent.
Natalie: It can be extremely isolating for a Mother going through this journey, and family and friends can struggle with how to best respond. What helped you?
Cheyanne: Breathe, and draw awareness into YOUR ability to create each and every breath. It is here when we listen to the winds of our breath that we find the strength, the courage, and the life. Times can be very trying, and when we allow ourselves to be vulnerable within, the growth it brings will provide the vitality to provide love and care. Oh and find a way to let it out. As mom’s most commonly this is crying, don’t feel bad about a good cry. When things are just beating you up, change the situation, you have the power to do this. Keep it simple, it may be a walk outside, a moment of silence, a hug from your little love, listen to your favorite song and sing it proud (you know the words) deliver like its coming from the mountain tops. It may be the moment before you brush your teeth, you look in the mirror and don’t recognize yourself, cover your heart with both hands and feel your heart beat! It must be YOU first, then them. Take the time to give back to yourself.
Natalie: What did you need most from your support network?
Cheyanne: For them to listen, truly care, and be there silently. In the early months, simply being around others uplifted my spirits. I wish some would have set everything they know or have experienced aside and not share stories to try and make me feel better. If they would just ask questions. Read and gather some knowledge of their your own on the condition and also how to deal with a grieving person. For people to try not to supersede what we have shared from our REAL time experience with our child with another story. These situations just churned my gut. I would think well thanks for sharing, but this tells me you weren’t really listening to what I was saying and that you were just one upping the conversation. To not have to make decision or opinions on small things, sometimes our brains are so full of information. I didn’t want to decide what I wanted to drink or eat, just deliver and help me meet my basic needs. It was the support of these basic needs most commonly getting overlooked, food, water, and most of all LOVE.
A friend of mine told me she read an article on how to talk to moms experiencing the news of their child having special needs. This was the absolute sweetest thing. I looked back on the visit and the conversations. She did a great job, asked questions, didn’t compare even though her boys were of similar age, expressed sincere interest, and then did a great job of changing the subject and getting my mind focused on different matters.
Natalie: How can we help other Mum’s going through similar situations?
Cheyanne: When the reality of our future came to light our doctor shared with us something that I let blow in one ear and out the other. She mentioned it would be a good idea to start looking for support groups. I thought, I have my family and friends for that. Well these people are so close to you that they didn’t know what to do as they didn’t want to create more hurt on the already pressing needs. It took me a while to understand this. AND it is when I started being brave, sharing my story, connecting with other families, and finding support groups that there was relief. It was painful and my emotions ran wild as the rawness of my life was exposed, yet then I started hearing others stories and it motivated me to build the vision for my child. Care for yourself first, find something that is for you, and be true to giving this to yourself regularly, you are one miraculous women and deserve the universe!
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Cheyanne: I found great release in writing and sharing our story. If you would like to read my words please visit www.sparkingtheneurons.blogspot.com. However this did take time. Nothing happens overnight, with great manifestation my words ripen. I also strive to find something for my son and I to do together in connection. No matter what size, age, color, ability they know, they feel, and they want to be positively uplifted. This connection has evolved over time, but it simply began with sitting quietly, and with loving intent a gentle hand on my heart and one on his. We would breath and feel each other. Exude love, connection, and fill your moment with grace and light! I also practice yoga, the roots of this tradition go beyond the physical elements and keep my heart bright and colorful, along with providing vibrant energy to my mind.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are at the beginning of their special needs journey?
Cheyanne: Our children do not need to EVER be fixed. Focus not on chasing the diagnoses, but on the human they are. Let us love them, and give them a world of experiences filled with joy and potential. Allow there to be risk, if we never look over the horizon we may never know what is waiting on the other side. There is growth in struggle, you will bounce back and have more strength from these experiences. Find and build support beyond your closest friends and family. Put your story out there and connect.
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave with us?
Cheyanne: Talk about your blessings more than you talk about your problems. The answers reside within our souls. Trust your natural instincts.
Natalie: Thank you for sharing your beautiful heart Cheyanne and wow Archer you are one amazing little soul. I first met Cheyanne during an intensive neurological treatment for Chiara in America. She cruised through the front door with Archer snug on her back and they both beamed the most beautiful smiles. We instantly connected via the love of our kids and Yoga teaching! So many pearls of wisdom – thank you for the blessings.
“Breathe, and draw awareness into YOUR ability to create each and every breath. It is here when we listen to the winds of our breath that we find the strength, the courage, and the life. Times can be very trying, and when we allow ourselves to be vulnerable within, the growth it brings will provide the vitality to provide love and care”. – Cheyanne
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