Blue Ribbon Day

Extreme sports can bring many kinds of adrenaline rushes.
Raising Sophia, in her infancy (especially) seemed a lot like what we imagine it was to participate in extreme sports. Although we were NOT extreme athletes. We learned to become ones, quickly.

 We had no choice, it was a matter of life or death, HERS!

That pump of adrenaline when you’re running a race but instead the race to the ER or scurring to meet the next specialist, like an athlete takes the next plunge.  The heightened feeling of pressure in your chest because your child is seizing and all you want is to pull her through.  On the brink of collapse because she is breaking the natural law of an appetite and is not eating enough to grow and we’re feeding her around the clock, 24/7!
NOT because you’re exhausted after breaking your latest record (or someone elses) because your exhausted after it seems futile and you’re faith and energy are running thin and doubt and sleep become your foes.
Not to mention all the negated, accomplished feeds! That was terrifyingly nerve wrecking.

Then she crossed a finish line, today! It was hers to cross, not ours.

I wish I could tell you I could see her cross the finish line triumphant, someday, but unfortunately, I lost sight of the waving ribbon a while back. Probably weeks after her diagnosis at 6 1/2 yrs old and learning... growing slowly (very) is part of her syndrome and we were participating in the wrong race category (measuring her success on typical childs growth chart) which only brought failures and many frustrations.  When we learned WHS had it’s own growth chart and when she was put in the correct category, she was winning. We thought that was the finish line. The blue ribbon was taken home that day. 
But...an unexpected adrenaline rush, this morning. The kind that brings extreme, perplexing laughter and unimaginable hope and joy.
She received a beautiful blue ribbon! She made 3rd percentile (in height) on the typical child’s growth chart!! What? That’s HUGE!
She did it! She’s won with God’s grace
Always has and because of God’s gift, HER (the real blue ribbon) I was reminded to keep cheering her on.
Every. Step. Of. The. Way.
And looking to Him and not at the waving blue ribbons at the finish line.
This kind of adrenaline rush is an extremely satisfying, intense feeling, of gratitude!
Thank you God and Congratulations Sophia!

Together

Sophia taught me this from the beginning of knowing her spirit in my womb.  Of course, then, we did everything...together.  Now it takes more purposeful focused attention to detail.  Here's my latest understanding "of getting" Phia, by listening to her words and by participating with her actions.

"Shopping, Mom? Go shop?"  She saw the shopping bag, next to her car seat, as she climbed in the car after school. I forgot I needed to return the items in the bag she just pointed out. She has a great way to help me accomplish my "to do" list.  Sure, why not, let's go get that done, I thought. I had a few other errands, so this is a perfect time to get that one accomplished, too.
Shoe shopping.  Always fun for, us, girls. Am I right?! Yet, because Sophia's feet are long and skinny we have but a few (if not just one pair) to choose from most of the time.  She can independently put on her own shoes and is very willing to do so and most of the time on the correct feet.  She loves this independence.  Often when I go to assist, she pushes me away and says, "me do."  And she does! :-)
What an achievement.  She is made of determination.
Most all her shoes are pull on or Velcro closure.  These type of shoes have helped her gain independence. (Independence is a rare milestone, so, it's automatically how I help her shop for her shoes, since her achievement.)  She showed me otherwise, this particular shopping day, Phia style! :-)

She tried on all the pairs that met my qualifications but she insisted on a cute pair of Chuck's, pink Chuck's.  I quickly dismissed her choice because of all the laces. She picked them up again and this time said, "Mom, let's do it!"

Then she tried putting them on and it was difficult for her but she never gave up. I bent down, next to her (to get it over with more than to really help her be successful) in trying on these shoes. She was proud when they fit and tried to tie them. She made knots, a lot of knots, that is how she tried to tie the laces. That's when I stopped to join her, really stopped to shop, for new shoes, together...I remembered how I love Chuck's and one of the first pair (fashion statement shoes) she wore (that I picked out) was a pair of high top Chuck's.
Pink to be exact.
Stopping to join her flooded my mind with this memory. It was a sweet memory, an easier time of shoe shopping, when not much criteria needed to be met, just fashion statement. I often miss her prompts of wants and needs by listening and focusing on only what is easy.  I sometimes fall into the habit of thinking easy is best but Phia showed me the deep lesson of understanding, relationship.
My being prone to the rut of easy, steals from my heart, her heart. It steals our relationship.
She has a way to capture my attention and brings understanding in relationship.
It takes relationship to get her, of course and put "to get her" together and awe, together is to get her!

Me and Phia, at sunset, together.

Rare Moments in Sharing a Rare Syndrome.

Coming home, after the 4p - Conference in California, I had high ambitions of writing about our time treasured, together. Our cup has been so full and overflowing that I haven't been able to express, into words, all that was experienced. Where to start?

This was our second conference but our first, REAL attendance at a conference! (Many of you know, our first conference, two years ago, was mostly attended in the ER and doctors office.)

Meeting another family, living with WHS, from Montana, was another highlighted first!

Because of Phia living with Wolf-Hirschhorn Syndrome, we've met this kind of generosity...a family of people, of deep longing, to see each other, where they are.

We are more than missing some genes.

Sophia and her friends are physically and mentally delayed, because of their broken chromosome but I can be in their presence and see more of what they are made of...unconditional LOVE.
She and her friends, living with this rare syndrome, clearly radiate love and I can't soak up enough when I'm around them.
I'll let these pictures show you what I can't put into words. Since we were in Hollywood why not let the pictures be the voice.

And action...

Evie and Phia

Party!

Kaylee and Phia

Camilla and Phia

Aiden and Phia

Emerson and Gabe

Rachel Coleman!

Phia and her Daddy



Phia and Evelyn

Montana Mama's

Phia and Ryan

Phia holding Josiah

Rebecca and Phia

Vincent and Phia

Phia and Savannah

Phia and Mia

Kaylee

 "Cut and that's a wrap!"

Living in the Woods

This.
This has been in my mind and on my heart, for a very long time.
This was something I wish I could have written but I didn't, now glad to see someone else did.
This was like walking into a Hallmark store and reading a card and thinking...how were they were able to read my mind?

This one hit home. While living in the woods, I'm thankful God is with me, casting back the fears that lurk here.

"This is is why we’re stressed out and why we can’t completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we’re waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we’re out of the proverbial woods because mentally, we can never really leave the woods. It’s all we’ve known since our medically complex children entered our lives, and we can’t erase the memories we’ve made there. We see terrifying and devastating things happen to the friends we’ve met while living in the woods, and we understand those things could happen to us too. Next time, it could be us."


This article, in it's entirety, can be found on Themighty.com

When Your Medically Complex Child Is Never Really 'Out of the Woods'

By 

Brandis Goodman

4-16-2016 Undeniably Supported by Me because of YOU

It all began with you, Sophia.  The moment I sensed your sweet, soft spirit, tumbling inside me.

 Undeniable you are.

Forgive me, for wrestling with denial, of living with your syndrome.

Today. 4/16/2016, we officially support 4p-/Wolf- Hirschhorn Syndrome as the National Awareness Day.

As our own state, Montana, recognizes this day (that is tied to your chromosome 4.16 band, that is missing some genetic material) from the office of our Governor, Steve Bullock, I'm grateful.

Side-note: (The date posted, on his official stationary, reads the same month, March, that became the month I found out, I was officially carrying you, 11 years ago.) Wow.

Knowing God scripted our story, before we even entered the first scene, he continues to stretch me out, to the end of my limits. I've come to accept ,that He does this, so I can fully trust Him to stretch you, to be limitless.

For that alone I will recognize my own state, of wrestling with the painful truth, that this is our new normal. 4~Phia. 4.16. 4-16. 4:-)16.

Undeniable that is. 

I love you, Sophia.  I'm learning to understand God's love for you, as well.

I'm seeing you, I choose to. Both of you.

Your eyes have the power to speak the greatest language.

Your eyes capture my heart, every time.

 LOVE

 So faith...don't fail me now, together, we've got this. 

Being a back seat driver, on this ride of living with WHS, is all good.
With God at the wheel and you, Sophia, by my side. We are moving on.

Undeniable.

LOVE.

The Heart of a Child

The days of the Spirit, working, in Phia's heart.
This is such one of those days.
This particular evidence, of the Spirit, began last night. An urgent prayer request on a friend's Facebook status. Another child living with WHS, like my daughter, was in distress.  We stopped everything, muted our devices and t.v. and went before God's throne, for this family and their little one.
We've been there.
Knowing it could be us, in need of prayer, at the next moment.  Knowing God is with us and knowing the need to draw closer to Him, in prayer, during these times.  Knowing how good God is, we took to heart their need and gathered together.
After each one of us prayed, Stuart asked Phia if she wanted to add to the prayer.  She kept her hands clasped tight and bowed her head, again and shouted out, "AMEN."  We all shouted back, "YES, AMEN!"

We continued our evening... holding on to the Amen (may it be so) attitude.

Before we tucked in for the night, we thanked Jesus for the good report. The child was stabilized and safely in the hospital.  Our continued prayers (we offer for this little one) at the request from her family, as they heal and trust God.

This (Monday) morning was a continuation of last night. (Monday mornings are the days I get to spend, with a group of Mom's, praying on behalf of our children and their school activities.)  My Bible and folder were ready, on the kitchen island, to grab on my way out the door.

During breakfast, Phia, left her counter stool to go find her eyeglasses.  Coming back into the kitchen, with her eyes perfectly framed by her glasses, she approached and flipped my Bible open and cleared her throat to read... "18 and 19," she said.
Pointing at the words on the page, she pretended to read and continued,  "Love you, honey, " with such conviction.
She then looked up (to see if we were all listening) and when seeing she had captured our attention she smiled, tenderly, into our hearts the very words she just spoke. 
We all smiled back and praised her for her Scripture reading and understanding.


"Thank you, Jesus, Amen!"

 Side note:  She is wearing her purple hair strand today! 

Top 10 Things My Children Have Taught Me...

This was written in my journal, two years ago.
I'm ready to post and have it serve as a reminder for me to remain teachable.

Sophia's nicknames:  Phia, Phia doll, Eyeballs, Lovey B., Sweet Pea, Sugar Plum

10.  Hardships happen. Life often brings surprises ~ unexpected and planned.

9.  Life is precious, sweet and good, always.

8.  Everyone needs to be seen and recognized.  Phia's way, in doing so, is with a persistent smile and simple greeting, to everyone who crosses her path.

7.  Let someone else help  ~ we need each other.

6.  Persevere, it is the way, you gotta go through it. (You can't go over it, and you can't go under it.)

5. Overflow with joy and give generously.

4.  Be empathetic, see pain and people and offer encouragement.

3.  Be thankful ~ it's the road to God.

2.  My abilities are my disabilities.

And the number 1. thing she has taught me... Simply be who you are ~ it's valuable and true!

Gabriel's nicknames:  Gabe, Gabers, The Gabester, Cheese Ball, Cheeks, Love, My Boy

10.  Love does begin at first sight.

9.  We are not our own.

8.  Having fight isn't always bad ~ can be a strength that needs direction.

7. Fighters have a super sensitive side and to handle that side with care.

6. Trust is hard but definitely worth it ~ Trust requires relinquishing instead of fighting.  It truly is what makes you strong.

5. Lighten up ~ laugh, play, enjoy life.

4.  Life is full of grace and charm.  Remember to remain thankful.

3. Protect what you have ~ it is priceless.

2.  Boys hearts are fragile.  Be careful with their heart.  Speak life.

And the number 1. thing he has taught me...Simply be who you are.  Embrace all of what makes you ~ YOU!

As it should be.

I believe God sent me the two children I needed to learn to become the person He needed.
The person He needs is the person who needs Him.
Thankful to God for my two children.
Blessed, indeed.

God's Mercy

"David said to Gad, I am in deep distress. Let me fall into the hands of the the Lord, for his mercy is very great; but do not let me fall into the hands of men."
1 Chronicles 21:13

A time of prayer, a loose tooth, a nap, a good night's sleep and a visit from the tooth fairy, all the while in the palm of his hands.  God's mercy.

It's a new day, travelling the stations of grief and growing. God's mercy.

Phia will possibly try a half day of school.  This morning will tell the tale.  She awoke wearing happiness as usual. God's mercy.

Not wanting to miss another day of school, she fixed her own hair.  (She has been trying to get a pony holder in for hair for about a year or so.)  This is most amazing coordination. Still in her pj's, I took a series of shots, capturing this miracle.  God's mercy.

I call out to God because I believe He hasn't overlooked me and that he is listening.  I'm hoping that because he is God, Father God. 

God's mercy.  I'm never out of his sight.  Never out of the palm of his hands.  Never out of reach.  Never too far from his grace and mercy.  Never ever.

Thank you, Father God, for opening my eyes to see your love and adoration in this life. Continue to guide my trust to your relentless love that never fails.  And when my trust is tested (like yesterday) hold my faith and help me grow stronger.  

Amen.

WHS Never Sleeps

January bares all. A stubborn virus hanging on to Phia's body and January blah-ness has me daydreaming

Some days I dream the old, familiar daydream, of the early days when the doctors sent me home with the diagnosis of a wellness child. In my dream I remember thinking in 7 months she will be fat and sitting up on the kitchen floor, playing with toys and squealing with delight and all this smallness and struggle will be behind us. In my dream I feel I can manage this hardship and in just a few short months my child will fit the wellness diagnosis. I hear the relief in my mind and heart and sense joy.

A decade later, Father God, I still long for those feelings of having a wellness child. Grieving and growing. Growing and grieving.

Will it ever be just growing, God?

WHS never sleeps and it doesn't get tired. It has gotten easier, as she grows stronger, in some ways.

Today is a struggle...

On my knees. Holding on to this prayer, that I read this morning, for caregivers.

"Dear Father, sometimes my grief seems to much to bear.  Help me treasure the past without getting stuck there. And help me make my way through the grief while giving myself permission to acknowledge my pain and the loss. Forgive me for the mistake of ever blaming you for suffering instead of seeing you as my Savior in the suffering."

Friendship or Phriendship

With few words Phia communicates friendship.  A simple, "hello" to everyone she crosses paths with is, genuine, heartfelt.  She has deep indigo eyes that light your soul, if you look into them.

At the school Jog-a-thon, Phia's Aid told me that Phia has been a friend to this new student who was struggling and pointed him out.  I was expecting she would be pointing to a classmate but instead she pointed to a bigger boy (actually a young man) an eighth grader.  I remember, nervously laughing,  unsure how she could be a friend to an eighth grader.  I was told he was outside his classroom one day, having a hard time, when Phia passed by and she engaged with her usual joy and compassion simply saying, "hello." But then stopped and added, "are you o.k."  He looked into her eyes and lit right up, kinda smiled and said, "yeah, I'm o.k."
(It's not often the younger kids cross paths with the older kids. It does happen, occasionally, as this is a rural, county school.)

Since then she continues to greet him (like she does everyone) when they meet at school and he gravitates to her happiness.
Here's such an occasion..arriving one morning we saw him, with two other eighth graders, hoisting the flag outside the front of the school.   I recognized him from the Jog-a-thon.  Phia engaged with, "Morning!" He stopped and turned and said, "Good morning, Sophia!"  She then stopped and asked, "what are you doing" to which he said, "lifting the flag."
"Why?" came her next words.  He said, "Because we raise it everyday and today I get to do it."
"Oh, bye, " and off she went on her way to class. "Bye, Sophia, have a good day", were the words following us into the building.
I was impressed, kids his age often just pass by or ignore Sophia. He really cared and I chalked it up to being in this rural, all inclusive, class setting we are a part of.  That must be the reason. Yeah, that's it.

Then this very unexpected gift happened this morning.  Phia was stuffing her cubby with her coat,hat, lunch and backpack and then she grabbed a ring from her shelf and handed it to me and said, "Here."  I knew it wasn't hers so I replied, "Oh, honey, that isn't yours, I'll find out who it belongs to."  She said, "Mine, Mom" and I could tell she wanted me to take it home.
I showed it to her Aid.  She smiled and said, "Yes, that is a gift from her friend, you know...the eighth grader."  I became a little uncomfortable listening to Phia's Aid, she continued, "He said it doesn't fit him anymore and thought Sophia would like it.  I told him, I don't think it would fit Sophia, because she is so small, with which he responded, well maybe she could put it on a chain or something. I want her to have it." 
My thoughts...unreal, sweet, amazing, maybe even strange... that an eighth grader would be giving her a ring?

My heart became at ease when Phia's Aid helped me accept his offering, with these words,  "You should know he is from a very broken home, he has very little, almost nothing and gave this to Sophia, because she means a lot to him."
Swallowing hard, I left, clutching the ring in my hand. I walked to the car thinking, he looked into her indigo eyes and saw pools of joy and embraced her friendship.

Entirely on their own they each understand the privilege of sharing.  No one prompts them.  They give of themselves, first.  They truly are friends, navigating this life together.  Wow.

This comes on the day when Phia's has her first play-date, with a classmate, another friend.  This is the first of many, I can tell!

Friendship or Phriendship...Phia's Friends!

I brought the ring home to find a chain and took this pic, along with these notes from her classmates, (they tuck them in her backpack.) Smile. Almost everyday she has a new note.

 I'm collecting them all and I'm going to make a book.

I think I'll call it, PHRIENDSHIP.

3rd Anniversary Diagnosis Reflection: Keep Moving from Purple to Orange

Here she is, making a {~SPLASH~}
After three years, knowing her diagnosis of living with Wolf-Hirschhorn Syndrome, I'm still moving from Purple to Orange ( my first year Anniversary post, re-posted below) by wearing AND carving Orange for Phia, celebrating with her WHS community the character of our children!  I have posted this collage in the 2015*WHS Halloween Event on the website, wolfhirschhorn.org.
My reflection this Anniversary is to keep moving forward in tucking the purple folder away and remain determined to keep learning and growing in love and courage. I still cry, but acceptance doesn't negate the pain, right?  Here is my heart, still, from my 1st Anniversary Post~
"Purple to Orange, 2013" 

As I go to unpack, another file box, from our recent move.  There it is.  I pull out the purple (“puhpo”, as Sophia would say) folder.     

                                                                            

As I open the stuffed folder that holds all the information given to us about Sophia’s diagnosis, last year, I’m silent and still.  That hard-to-swallow feeling is back in my throat.  I know what I’ll see when I flip the cover.  The words, “ABNORMAL Micro-array Result, Female”, will be glaring back at me.

My head starts spinning and my pulse quickens.  My nerves are raw.  I’m more in control now than when I was sitting at my kitchen counter a year ago and heard those words (out loud) for the first time.   

There they are--in permanent print--staring me in the face, just as cold today as they were twelve months ago in audible form.   My granite counter top was warm compared to the voice of the genetic counselor who called to inform us of our daughter’s difficult medical facts and test results.

“She has a terminal deletion on her 4..."

okay, you lost me, I'm officially numb.

 Some time must have past because the next words I remember hearing are, "Hello, Janet, are you sitting down?"  Thank goodness I was and just to make sure I look down to check and yep...since the first thing I see are my knees (as I'm almost in a fetal position on the chair).

The memories of that day make me cry.  Every time.  Why am I opening this tattered and tear-stained folder, again?  I want to slam it shut and file it under: NEVER OPEN!  Instead, what I find is courage.  Courage to keep reading in which I discover a found determination. Determination to mark this Anniversary with the pursuit of learning something new.  Determination to glean all I can from this past year now knowing Sophia’s diagnosis and her need for advocacy.     

                                                                                                                                                 

       

Sophia turns 8, this December!  The realization suddenly takes my breath away.  With each passing birthday I have the opportunity to embrace and accept “she is who she is.”  I believe God hasn't overlooked anything in her life.  I can honestly admit that I’m most grateful to God for revealing her diagnosis in His time.  The past six and a half years (desperately wanting to know Sophia’s diagnosis) was time of bitter sweetness and years of God finding me.  For that reason alone I wouldn't trade those years of NOT knowing for knowing that our little girl was living with Wolf-Hirschhorn Syndrome.  

"Wolf-what?”

       

I repeat a little slower and with enunciation, "Wolf-Hirschhorn Syndrome.”  This is the way the conversation goes when trying to explain to someone what Sophia has—trying to communicate why she is uninhibited socially, yet with few words at her disposal to communicate her delight at meeting new friends.  I say the name again, “Wolf-Hirschhorn Syndrome” for the second or, (GADS)...the third time.  Then, I start spelling it: W-o-l-f (hyphen) H-i-r-s.., and so on.  One would think Wolf-Hirschhorn Syndrome (WHS) would resonate with people, right up there with,...Cancer?  After all,  the syndrome is associated with the words, terminal, it’s complicated and when you say it, "Wolf-Hirschhorn Syndrome”, it is often followed by silence.

       

One reason, the name doesn't resonate, with the vast majority of people, is because of the syndrome’s rarity.  WHS affects only a handful when compared to cancer; with odds of 1 out of 50,000, give or take. Another reason is because it isn't curable. So, #1 on my bucket list, raise awareness for WHS.  Yep, right next to going to New Zealand (dream trip with hubby) and meeting Ellen, someday!  (Ellen is all about sharing the same kindness that pours out of our kids.  I would love for her to meet THIS blessing of kindness.  Plus, she made me laugh during the hardest, homebound years of parenting.  I’m grateful for her gift.)

       

Earlier this month, near Sophia’s Anniversary date, I found myself at her annual I.E.P. for school where we discuss her ongoing style of learning.  Towards the end of the meeting I realized not one person on her team had recognized or talked about her recent diagnosis.  It hadn't been brought up at all during this meeting.  So I ask what seems to me to be a logical question, “Has Sophia’s diagnosis been added to her I.E.P?”  Maybe there had been an oversight.

"Yes, it's there.....somewhere.”  The team is rifling through their files to find the name of her syndrome. “What is it, again?”  Not one (there are 7, on the team) could tell me from memory or from prior knowledge; it surely wasn't for lack of care.  On the one hand, this isn’t so terrible because her diagnosis doesn't define who Sophia is.  But on the other hand we must attend to the fact that familiarity with the name and what it involves does play a major role in Sophia’s life. 

I find myself hard pressed to pave the way for others.  My goal is to offer someone else...HOPE!  This is my opportunity to bring awareness for my daughter living with WHS and all others living with WHS. 

I begin to say it…(again), then spell it…(again), and I’m grateful to be able to then share this website—www.wolfhirschhorn.org—the same website my genetic counselor shared with me.  The same website where I found comfort and a much needed sense of belonging.  Now a place I've become a team member to raise awareness advocating for my daughter and others.

.

     Thank you…Kevin O (*smile*) and community; together we are empowered and encouraged given the charge to share our story and children.

                       

                                                

           

Along with the rarity of this syndrome is the scarcity of information in the reality of what it is to live with Wolf-Hirschhorn Syndrome.  Yes, it’s a struggle and sometimes dire.  Mostly I've come to know living with WHS can bring support and support brings understanding and understanding brings knowledge and knowledge brings power and power helps our kids. Not only that but much, much bigger than the support, (that our children so desperately need) are the gifts our children bring to the world:

    ~ pure love

    ~ precious innocence

    ~ unending amounts of generosity

    ~ sheer happiness

    ~ complete joy

    ~ astonishing beauty

    ~ unabashed friendliness

    ~ captivating goodness

The list is endless.

                                           

                                      

                      

As much as we need to share with the world about Wolf-Hirschhorn Syndrome, the world needs our children!  Each child captivates anyone who is willing to be inspired by their sheer being.  So, this year and the following years to come, as I hold this ratty, purple folder to my chest, I will tuck it away because I realize that we are no longer bound by this folder’s contents.  Our lives are now tied by a ribbon...ORANGE in color.  Worn in support of those living Wolf-Hirschhorn Syndrome.

                                   

                                 I wear orange for my daughter, “Phia”.

  End of post.

This December she will be in double digits, 10!
We will PArtY...look for that post soon.

A Beautifully Successful Experience

I have a few moments to update you, all, on Phia's new school experience.  Before having a fully inclusive classroom, I saw Phia slipping away from me in going to school, not in being apart from me but in being...whole.  I'm also not just talking about her being able to ride a bike, articulate all she knows, play on the playground with other kids.  To be whole ~ to be needed by somebody like she needed them. Not giving up on someone.

I believe Phia being atypical doesn't mean she doesn't belong.  Her difference does not infringe on the right of others to learn, like I've been told. (What a burden that was to carry.)
Difference is not a liability. Difference is looking at what is real about ourselves, others and life.  When you see what's real about yourself, you don't infringe on anyone for that.

I wrote, in my previous post, that we were just beginning the collaborative promotion in belonging.  We were looking forward to a classroom where everyone is the whole.  Where everyone benefits in educational and social development.  Where learning, working, growing, and sharing, together, is normal.  I'm happy to report this way of living and learning is a beautifully successful experience.
One of her peers made this comment, (when she needed to go home with being ill) "there is a big hole in our class when Phia is gone." Nuff said, wink.

My heart is bursting, really enjoying Phia taking on her own life, who she is, without fighting and pushing for acceptance. She is needed and that is beautiful.
The burden has been lifted. On her horizon she has three playdates lined up and she is being found in living her life and that is all she has ever wanted.