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.

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     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.