#phoenyxrose

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Meet Isabella Jasmyne

I wrote this poem for my little girl on her 2nd birthday. It describes what she is, for me, in the most honest way.

My Isabella 

6/14/2014

She’s my hero, my friend,

My daughter, my end…

To the heartache, the sorrow.

My “Looking forward to tomorrow.”

She’s my miracle, my gift,

My “Can’t reach?”, “Have a lift.”

The sun in the morning, the moon in the night,

My very last reason to fight.

She’s my everything, my world,

My “You’ll always be my baby girl”.

All the joy, all the tears,

All the happiness, the fears.

She’s my “I need you”, “I love you”,

My reason to pull through.

The light in the dark, the stars in the sky,

My own personal lullaby.

She’s my angel, my protector,

My life’s dream projector.

She’s the icing on the cake,

The glisten on the lake.

The final piece, the sealed envelope,

The last knot in the bow, my ray of hope.

She is silence in sound, music in acapella,

Color in black and white, my Isabella.

~Phoenyx Rose Winchell~

The God and Goddess smiled on us, the angels blessed us and the fairies worked their magic on our lives the day she was born. She has grown so much since that day. 

From diapers and nursing, to writing her own name, counting to 10 and tying her shoes, singing her ABCs and graduating from Pre-K and Kindergarten. Now she has started 2nd Grade! 

She beat the odds and survived through FTT (Failure to Thrive) at 3 months old. She managed to safely have a screw pass through her intestines, AFTER she swallowed it during arts and crafts time!

She is stubborn and strong-willed. She is brilliant to say the least! She plays mama bear to the other children in her class. They all take to her well. I think it is because she appears as a ‘big’ sister figure to them.

She is extremely tall for her age! She is 7 and wears a size 8/10! Her shoes are a size 1 kids! I am 5’6″ and she comes to just under my arm pit when she stands next to me!

She isn’t all sugar and spice and everything nice though. She uses her size to intimidate smaller children and get her way. She is also capable of coming up with some of the most elaborate and very believable lies when she needs to!

I see a job in politics or the legal system in her future! LOL!

In all seriousness, she is precious. She is my last baby and for that reason I find it hard to accept that she is growing up.

Most recently we discovered that Isabella has Lupus and we are in the very beginning stages of learning what that means. 

In this discovery we found out that her Oldest sister Astyra may have been misdiagnosed when she was diagnosed in January of 2018 with Acute Intermittent Porphyria. She may have Lupus instead.

We also found that her other sister, Winter, may have been misdiagnosed as well when she was diagnosed in January 2017 with Severe Guttate Psoriasis with Systemic Inflammation and Psoriatic Arthritis. She may have Discoid Lupus instead.

Her brother Zakary is being treated as if he has Lupus too. This may finally be an explanation for his random episode.

With all that is going on in or lives at the present (more on that later) I tend to find myself falling into states of depression or fits of anxiety and I just want to stay in bed but her bright smile is what makes my every day worth waking for!

This is Isabella. Our youngest child, Our 4th girl, Perfection!

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Meet Zakary Dean

June 2009, I was blessed with the birth of my long-awaited second son. A Gemini, born at 7 lbs 14 oz. and 20 in. long, who knew this little stinker would grow to be the pride and joy of my life?!

He reads above grade level and writes with the prettiest handwriting. He even has his first ‘girlfriend’. What am I gonna do with him?! 

Time goes by far too fast! My baby boy isn’t such a baby anymore. He is outgoing and friendly and the most loving little boy you have ever met!

He loves video games, Legos and Hot Wheels. He enjoys school and has mastered Common Core Math. He is rather brilliant for his age.

If you’re feeling down, all you need is a hug from this little guy! He’s had his own struggles in life though.

He’s suffered two severe concussions in his short life. The first was when he was 18 months old. He was trying to climb up the bunk bed ladder and his sister, thought she was helping by placing a pillow across the top to block him. 

When she did this, she actually pushed him off the ladder and his head hit a very large door hinge. He had a small compressed skull fracture, severe concussion without hemorrhage and minor loss of vision. 

He should have had 8 staples but in the end he got 4. He was holding his breath and passing out while the doctor was placing them so the decision was made to prevent any further brain damage and give fewer staples.

The second was last summer, the day before school started. He was jumping on the trampoline. The kids decided to have a jug of tea on it and play a game where you have to jump over the tea jug. Well, he did…

He dove clear over the tea jug AND the side of the trampoline. He landed on the front left part of his head! Knocking himself unconscious for almost a full minute. He was unresponsive and I was terrified!

He was curled in the fetal position and everything I have been taught said, “Don’t move him.” but damn it! My baby wasn’t breathing!! So, I slowly turned him onto his back and by some miracle he gasped for air!

At that point I probably should have been calling an ambulance. But we lived in the middle of nowhere, with only a volunteer ambulance corps and it would take the crew longer to get to the ambulance than it would for me to drive him to the emergency room myself. So, that’s exactly what I did.

After several hours of observation, in and out of lucidity, x-rays, CTs and multiple other tests, we were released with orders for no gym or physical activity until further notice. 

He suffered from nausea and headaches for almost 60 days after. However, today he is back to his normal happy little self!

This year, on July 2nd, he presented with a rash. Not a normal raised and bumpy or itchy rash but a smooth purplish red rash instead. We watched it for two whole days until it was completely out of control and we had tried everything. Creams, ointments, baths, home remedies, ice, heat, allergy meds, etc.Nothing worked.

On July 4th, just in time for him to see the fireworks across the street, we arrived at the ER. He was evaluated and sent home with a ‘Virus’ as his diagnosis. . .

WRONG! 

Two more days pass and he kept getting worse. Now he developed a neuropathy in his hands and feet that was excruciating. So we went back to the ER on July 6th. 

He was evaluated again and this time he was transferred to Methodist Children’s Hospital in San Antonio. It was the best thing that could have happened. He spent 5 days there, all the while being treated like a prince. 

After the 5 days were up, the rash was gone and gabapentin was helping with the neuropathy. He was discharged. We had no answers after dozens of tests. Just referrals to several specialists.

We did however, find out that he may have Bi-Cuspid Aortic Valve in his heart. Its a pretty serious condition that will be with him for life. He sees the Cardiologist on October 9th to repeat his Echo an confirm. We are hoping for good news.

You’d never know that he was or is sick. He still plays and acts like he did before his episode. If nothing else, he is resilient! He will most definitely always be my little fighter!

This is Zakary, 6th Child, 3rd Son, My Knight in Shining Armor! 

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Meet Winter Payje

A platinum blonde, steel-blue eyed, chunky cheeked, picture of perfection!

As I sit here and look back, I think of all that we have been through. We have had our ups. Like learning how to: roll over, sit up, crawl, walk, talk, feed herself, use a big girl cup. She learned things like sleeping through the night, stopping the wetting of the bed, no more using of the night-light, brushing her own hair and teeth, dressing and bathing herself, tying her own shoes, and riding a bike without training wheels.

She started school and learned her colors and shapes, numbers and letters. She learned to count and say her ABCs, she learned to write her name, read and write stories. Add, subtract, multiply and divide. She learned fractions and decimals. She’s a master in social studies and science. She’s had “boyfriends” and “best friends”. But…

We have also had our downs.

Like the time she pulled Mimi’s microwave down and hit her head with it, that required staples. Or when she squeezed through the railing on the stairs and tumbled the entire flight while scaring us half to death. Then going into full anaphylaxis from Amoxicillin, then from sumac. She’s had her appendix removed.

Oh and let’s not forget the latest;

Severe Plaque Psoriasis with Systemic Inflammation, GERD (Gastroesophageal Reflux Disease) & IBS (Irritable Bowel Syndrome). Creams, Ointments, Medicines and Injections. Dermatologists, Rheumatologists, Gastroenterologists, Psychiatrists and Physical Therapists. Walking with a walker, shaved hair and painful, itchy skin.

Yet, through it all, she still has those chunky cheeks and has maintained the biggest most beautiful smile anyone has ever seen! She truly is the most amazing and strongest little girl I have ever known!

She wrote this poem to describe how she feels about everything that she is recently went through:

I’m Trapped 06/05/2017

I’m trapped in a dark with nowhere to go, I try to reach out but a voice tells me no.

No familiar faces, No usual places.

I want to be set free, But these chains won’t let me.

To laugh and learn and at math games win, To be able to play with friends again.

Birthday parties and family events, Baseball, Softball and camping in tents.

Just the start of the list, Of all the things that I miss.

No pain and no meds, No spots and no shots.

No lotions and no creams Only in my dreams.

Normal foods on my dish, The old me, I wish.

*if that doesn’t bring a tear to your eye, then you have no heart*

This is Winter! 5th Child, 3rd Daughter, My Super Hero!

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Meet Xander Drayke

Born 2 days after The Christian Holiday of Christmas, a Capricorn, she was a little bit of a trouble maker right from birth. Due January 9th, she decided to come early. Born at 1:24 am via C-Section weighing 7 lbs 3 oz and 20 in long. 

We were slightly disappointed at this result because we were hoping for a VBAC, Vaginal Birth After Cesarean, delivery. Which wasn’t possible due to our location. She was coming so fast that I wouldn’t make it to the only hospital in the area with the insurance coverage to perform that type of delivery in time.

However, she was born healthy. That’s what mattered the most. Her health didn’t last long though. She was admitted to the hospital at 2 months old for RSV and Pneumonia. 5 days in a mist tent, and she slowly improved. We went home and she remained healthy from there on. At least physically…

Skip ahead to age 8. She started acting out and being aggressive, easily agitated, irritable all the time and violent. So, we started counselling. 

That’s when the misdiagnosis started. Everything from ADHD (Attention Deficit Hyperactivity Disorder), to DMDD (Disruptive Mood Dysregulation Disorder), to BPD (Bi-Polar Disorder), and finally OCD (Obsessive Compulsive Disorder) with Anxiety.

The last seemed to fit. Unfortunately, it is the hardest to manage. With no real treatment, we used coping skills and home remedies. We kept her busy. She is very athletic and loves Football, Basketball, Baseball and Wrestling. 

She also lives to be outdoors. Camping, fishing, swimming, hiking, riding bike and kayaking. She loves bugs but has a horrifying fear of spiders. Though you can usually find her where the bugs play! After awhile, and with age, she seemed to get better.

Enter Summer 2016; We were informed that she wanted to be called ‘Jo’ and that she didn’t like the girly clothes we kept making her wear. She wanted “boy” clothes when we went school shopping. Okay. No big deal. I believe in allowing my children to express themselves as who they are.

Fast forward to this Summer. We began watching ‘The Fosters’, as a family show on Netflix. During one of the episodes, there is a character called ‘Aaron’ who was once ‘Alison’. He is a transgender male. The episode focused on his trip home to see his family and the struggles that go along with his transition from female to male. 

When the episode was over, my family went to bed per the usual. The next day, my daughter came to me and said that she figured out who and what she is and that the episode we watched the night before was what helped her in the discovery of her true self. 

She explained her feelings and asked that I schedule her an appointment with the doctor to discuss hormone therapy to begin the transition from female to male. I happily obliged.

Three days later, we sat in the Doctor’s office and they spoke about what this all means. My child knew exactly what it meant and exactly what was felt. So the referrals were sent out. She expressed her desire to be addressed with male pronouns and we left. We arrived home, shared HIS news and HE chose HIS name.

This is Xander! 4th Child, 2nd Son, Wild Child.

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Meet Drykara Layke

One October day in 2004, I experienced what I still refer to as the most terrifying day of my life. We (my ex-husband and I) were traveling East bound, on I-70 through Illinois in our little ‘93 Pontiac Sunbird, when all of a sudden we were hit by an 18-wheeler, who had attempted to pass us but changed his mind when he saw the State Trooper in the West bound lane. 

He tried to switch quickly back into our lane and in doing so, he caught our car with his bumper, directly behind the driver’s door. My ex-husband was driving. The car was immediately turned sideways, driver’s side perpendicular to the front of the tractor trailer’s grill!

After pushing us for 100 yards sideways down the interstate, we broke free into the median… unfortunately by this point we had no brakes. We then proceeded to head into the Westbound lane where we were struck by that same State Trooper, plus ANOTHER car. Both were traveling at speeds above 70 mph. 

I, 8 months pregnant, was ejected from the car (because it had been split in half behind the front two seats) at this point. Landing an estimated 96 feet from my ejection point, ON MY STOMACH. 

Semi-alert I heard my grandmother, who had died in a car accident in May of the same year, say, “Come on baby, it’s time to get up.” As she always did when waking me for school. I opened my eyes and, with the assistance of my now ex-husband, rose to my feet. 

I then proceeded to walk 62 feet from “my landing zone” to the edge of the road, unbeknownst to me with a fractured pelvis, which would later give me a diagnosis of never walking properly again if at all, (I guess I showed them) where I complained I couldn’t feel my baby move and passed out. 

After waking to an ambulance crew trying to get my clothes off, “…to find where all this blood is coming from!” I quickly passed out again… 

Then I later came to and found a Med-E-Vac crew checking my blood pressure saying my systolic reading was 60 (I don’t remember hearing my diastolic reading) and they couldn’t get a read on the baby… I was out again. 

Later I awoke in a room full of Doctors and medical students poking, probing, and prodding me. Speaking to me all at once, saying that my baby’s heart-rate was only 4 beats per minute and that they needed to do an emergency C-section. Out again…. 

Finally waking only to see lights flying over me from feet to head, with lots of indecipherable yelling. Then… darkness!

I awoke almost 6 hours later, not pregnant, in tons of pain, with no clue of what had happened and freaking out. When I was then informed that I needed to calm down. Since I had received a shot of epi. directly to my heart during my C-section, because my heart had stopped beating, I needed to keep my heart rate as low as possible. 

I was in total shock! My baby was now in the NICU and when I asked how she was doing, everyone was mum. Everyone, but one nurse… she told me that my precious little girl had been born 5 lbs. 1.6 oz. and 19 in. long, almost 8 weeks premature, gray, limp and unresponsive. 

She told me that they were ordered to stop life-saving efforts at 45 seconds and she ignored the Doctor’s orders and continued until she took her first breath and cried at 91 seconds! Words that I will forever be grateful to have heard.

We spent the next several days pumping breast milk into a bottle and feeding it to her through a syringe, directly into her stomach via the nose. We were not allowed to hold her because she could not regulate her body temp, or breathe on her own yet. We could only pet her through 2 small holes in a plexiglass box that resembled a tiny coffin. 

She kept having setbacks, major ones. We would take one step forward and two steps back several times per day. Because of this, her team decided that we needed to discuss the possibility of ending her life support.

They sat us down and explained the scenarios to us. They had the grief counselor there and the Chaplin. They explained that at the rate our little girl was regressing, she wouldn’t make it through the night. They gave us time to ponder this heart-wrenching decision together, alone.

While sitting in complete silence, shocked and in disbelief, not knowing what to say and refusing to believe the options set before us, we just stared at her incubator from across the room. 

As we watched the machine breathe for her lifeless body, it became painfully clear what had to be done. We had made an unspoken decision to end our baby’s suffering. Then the alarms and bells went off on all of her machines!

Her team flocked around her like vultures over fresh roadkill! Leaving no room for us to see what was happening! In all of the craziness, our cries to be told what was happening were lost. 

We were frightened and that fear was being heightened by the minute as the team started to get more and more quiet and we noticed that her machines had started to be shut down.

That’s when the NICU nurse turned around with our daughter swaddled in a blanket, just a nasal canula and a set of heart monitor wires leading from her, and asked if I would like to hold my baby girl for the first time! 

I was in utter shock and surprise but she DID NOT have to ask me twice! THAT was the day that my baby girl decided she was going to take her first breaths all on her own. The bells and alarms we heard? That was the alert for the team to know she didn’t need the equipment anymore!

We struggled with weight over the next couple of days but that didn’t last long. She quickly got the hang of the bottle and she regained all the weight she had lost and then some!

After 12 days in the NICU for my angel and 5 days on the maternity ward for me. My ex-husband and I got to leave the hospital, me in a wheelchair and our daughter in my arms! I thank the Goddess everyday for my little miracle! She is a wonderful NORMAL happy 12-year-old girl today! 

She, a Libra, is extremely intelligent and a High Honor Roll student every quarter because she is academically focused. She’s an avid reader who loves every kind of book out there. She is artistic and kind. A little bit of a loner because she is so quiet and shy.

Her shyness doesn’t hinder her creativity however. She plays Clarinet and held first chair for a year and a half. She is in Marching Band and was an Alto in Chorus. She was an “extra orphan” in the Elementary’s production of Annie Jr. 

At one point she was in Art Club and Book Club. She also spent time in Girl Scouts but later decided it wasn’t for her due to religious conflicts.

She enjoys playing sports with her sister. Volleyball and Softball specifically but she’ll play anything with a ball, if given the opportunity. 

She is also currently taking a welding class in school and plans to be certified by the time she graduates. She then plans to hold a career as a welder. 

She is proof that miracles do happen! 

This is Drykara! 3rd Child, 2nd Daughter, My miracle!

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Astyra Rayne

This is our oldest daughter. She was born in December. A Sagittarius! She was 5 days late. I mean of course, she had to make a GRAND entrance! After 46 hours of labor, I was able to look into her beautiful blue eyes for the first time and my world was forever changed! 

After her delivery, we learned that she had been a twin. I had a mid-first-trimester miscarriage. After studies were performed, we were later informed that her twin was to have been a boy and that he did not survive due to her strength and overpowering will to live! Some things never change…

A social butterfly and a little diva. She is a fashionista and she loves all things drama. Because of her desire to be the center of attention, she places herself in situations that make her just that! Such as when she accepted a secondary role as ‘Kate” in the Elementary production of Annie Jr.  

She loves music and plays flute. In fact, she held first chair for 2 years… and then we moved. She is in Marching Band as well. She was also a high Soprano in Chorus.

In the past, she was Photographer for the Yearbook Club, and Secretary for the Student Council, as well as a member of the Safety Patrol. She has also spent time in Homework Club.

She joined Girl Scouts as a Brownie and continued until her final year as a Junior. She ultimately ended up leaving due to religious undertones associated with the program and the conflicts that it held with her own beliefs.

In addition to her involvement in clubs and musical programs, she is also very athletic. She enjoys playing Softball and Volleyball. Though she struggles with her knees, she pushes through and has a great time! 

In eighth grade she received the Presidential Award for her improvements in her schoolwork. You see, she likes to pretend that she is ignorant (see ‘likes to be center of attention’) when in reality she is brilliant, and that year she made huge strides towards catching up to her actual potential!

She talks regularly about her future aspirations and intends to finish High School. She has plans to join a technical school for Cosmetology.  To be honest, I wish I had been this prepared at 16!

Our fears have been met with this one! She is beautiful, smart and A TEENAGER! She is all mouth and complete attitude and boy, oh boy does it show! She definitely is the reason for a significant amount of our premature grey hairs!

However, she is also the best big sister you will find! That mouth and attitude is what helps her in her mission to be the “Sibling Protector”. She can do whatever she would like to her little brothers and sisters but let someone else try to mess with them, just once! It’s usually their last attempt. 

It is because of that protective nature that she tends to be our babysitter. How could we trust anyone else when she has set the bar so high? She is very good at it too! Very responsible and highly trustworthy, there is no replacement.

I know that one thing is for sure, even with all of her many downfalls, this little girl is her daddy’s world and her mama’s forever friend! Who could ask for more?

This is Astyra! Oldest child, biggest pain in the behind!

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Meet Dad

He is the most loving, caring, compassionate individual on this planet. He works hard to take care of our family and doesn’t get the praise he deserves. 

He doesn’t even get far enough credit for putting up with my miserable behind. He takes everything I say and do with a grain of salt. The strength it must take to tolerate me is unfathomable. He loves me and all of my many mood swings, and crazy personalities unconditionally. There’s something to be said about that.

“If he puts his arms around you and kisses your forehead and it makes the bad more bearable, then you know it’s right!”

~Phoenix Rose Winchell~

He is the best father a woman could ask to have for her children. He has stepped up to the plate and taken on 6 that aren’t even his. He loves them and cares for them as if they were though. 

For several years he coached pop-warner football. He is an avid football fan so he brings a little bit of competition to our home during football season.

See, the majority of the household is divided by two teams; The Pittsburgh Steelers and The Dallas Cowboys! He is a Black & Yellow fan ’til the death! Tsk, Tsk!

He enjoys outdoor activities as much as I do. Four wheeling, camping, hiking, swimming, anything that gets us off the couch! However, he also enjoys a good Star Wars or Fast & Furious Marathon every now and again.

Bonfires, beer, great conversations, hard work and dedication, love and protection. That is what makes him who he is. No more and certainly no less. What you see is what you get and rest assured you won’t be disappointed.

He spent 19 years in the HVAC industry where he installed Furnaces, Air Conditioners, Geo-thermal Units, In-Floor Radiant Heating Systems, Boilers, and other similar systems and devices.

This type of work was extremely brutal on his body. Especially during the Winters here in Central New York. Eventually he made a switch to something less stressful on his body.

He dabbled in the General Maintenance industry for a couple of years. In this new job he worked with electrical and plumbing as well as using his usual heating and air conditioning skills. This was less painful but was still mentally daunting.

After several conversations, we decided to take a pay cut so that he could have a greatly deserved break. He accepted a part-time job.

He now works as a guard for a very high class golf resort. He loves his job and comes home with a smile almost every day. A new funny story or something interesting to share with the family every afternoon.

With less stress, and less tension, he has been able to build stronger relationships in our blended household. Relationships that were once strained have since been strengthened and grown immensely. 

This has led to some of the major changes that have recently taken place. (More on that later) Every day he amazes me more and more! He is truly one of a kind! 

 This is Ed. Man of the house, amazing husband and father!

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Meet Mom

I enjoy camping, swimming, riding bike, rollerblading, any outdoor activity in reality. I also have a deep passion for music, writing, and photography. 95% of the pictures that you will see on this blog will be taken by me.

I am married to my best friend and confidant. We have been together for 8 years and married for almost 7. This is my second marriage. My first was an epic failure.

I had married my first love, my high school sweetheart, when I was just 16 years old. He was 18, in the Army, and I was in a very unhealthy and abusive household. It was the perfect excuse!

My mother, from here on out known only as ‘The Incubator’, was all too happy to sign the paperwork to get rid of me and I was all too happy to go!

I had my first child, my oldest daughter, when I was just 17. Thus began my wonderful life as a mom. That’s when I found my true calling. I KNEW what I was supposed to do from that moment on.

I was supposed to be a mom! A job I would never regret, a job that was more rewarding than any paycheck.

“There is no monetary value that can be placed on motherhood. The payment comes in sticky handed hugs, snotty nosed kisses, scribbled artwork for the fridge, wildflowers in a plastic cup, driveway rocks on the coffee table, one last cupcake from their birthday party at school, rubbery microwave scrabbled eggs for a breakfast surprise, and cuddles before bedtime! Let me tell you, there is no greater pay! I wouldn’t have it any other way.”

~Phoenyx Rose Winchell~

Now, don’t get me wrong. There are PLENTY of days that I find myself freaking out and hiding in the bathroom, ‘pooping’, to cry it out. All because I had to yell and scream at, spank or ground one of my children.

These are the days when my anti-anxiety medications are just not enough and I find myself a hot mess. Pulling my hair out becomes a reality, not just a figure of speech anymore. My heart starts racing, my head starts pounding and my hands start sweating. I shake from holding in my tears and it presents as anger. I get ugly, loud and mean.

Then one of my babies makes a joke and I find myself trying to catch my breath from laughing so hard or one of them will give me a hug and say, “I love you mommy.” and I have to choke back tears as I say it back. Suddenly my heart rate slows, my headache eases and my palms dry. Those little moments make all the others worthwhile.

My husband and I surely have our ups and downs. Goodness knows that with our crew we never have enough time together to have a real conversation. So communications are strained. This makes for complications in our romantic life. These moments tend to spill over into our daily lives with the entire family.

However, my husband is my knight in shining armor, my hero. The love of my life and my one true best friend. I can not imagine my life without him. Although, there are days that I would love to take my scarf and strangle the sh*t out of him, I wouldn’t know what to do without him. He drives me bat sh*t crazy on a daily basis but I love him more than life itself! This man truly is my ‘Forever & Always’.

I am the mom of 7 children. 3 are in High School, 2 are in Middle School, and the youngest two are in Elementary. They are all. . . well let’s face it, children! But, I do my best.

WELCOME TO The Winchell Family Shenanigans! My name is Phoenyx and I will be your tour guide throughout our family adventures! Thank you for joining us!