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.

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.

The Bar Has Been Raised

   This Mama's heart is excited as an issue I've passionately desired is coming to pass.  The bar has been raised ~ new school, new teachers, new kids, new philosophy...full classroom inclusion for Sophia.
Can you give us a WOOT, WOOT?!
   We are just beginning the collaborative promotion in belonging, in fact, school starts tomorrow.  We are looking forward to a classroom where we are the whole.  Where everyone benefits in educational and social development.  Where learning, working, growing, and sharing together, is normal.
   We will keep you posted on the thriving environment.  We ask for you to pray as a new team for Sophia is formed and paves the way for all children to experience standard classroom education.

   Look for her school pic tomorrow!  (Imagine me, photo bombing in the background, turning a cartwheel, smile.)


  

Great Darkness Needs Great Light

It took a sick child, need of peaceful sleep, last night's meteor shower and words from a devotional to see the gift of fragility. That's right, it's a gift...

 I shot out of bed as I heard an unsettling gulping sound coming from Phia's moniter and when I came to her room she was not where I last saw her...sweetly resting in her bed.  Pure panic gripped me...where is she, how is she, what will I see when I find her?  God, help me!
 Phia was in the bathroom, chugging water, rapidly, and then said these words when she saw me come in, "I'm thirsty, Mom."
 Wave of instant relief, she is guzzling water AND can keep it down.  The vomiting had ended earlier that night. All is well, nothing to fear.
 Thankful, I tucked her back in bed and prayed her to sleep, yet, I needed to breathe, as my heart was still pounding outside my chest. I walked out of her room with the thought, who was going to quiet me, so I could get back to sleep?
 Just then God reminded me, His sky had a special performance to offer, a meteor shower, all I needed to do was look up. So I walked outside and looked up.
 Weary and weak, I was so small under the expanse of the sky. I softly muttered, "God, HELP ME, this startling fear has overtaken my heart, again, please make it stop."
 Like the shooting stars that streaked through the night sky and captured by my eye,  God showed me (by several magnitudes) the gift in being fragile. What I detest in weakness He uses to speak into my life His compassion and I was enveloped in His comfort as I witnessed and relinquished into His presence. His peace rose over the fear.  He is bigger, always, than my circumstances. Always.
My heart was healing and I was able to accept myself in His gift!  Accept and know He is with me, to the very end of all time and space. He is with me, through balancing the parenting of a typical teenager and a special needs child. Through a life of difficult, unexpected twists and turns. Through darkness. Always.
 I remained in the expanse of His Greatness and enjoyed His Presence in the miracle of the meteor shower and was able to go back to bed, peacefully falling back to sleep, loved. 

Then His voice in these words, from Sarah Young, in the devotional, "Jesus Calling", this morning.  (It was yesterday's entry but I didn't read it until today as yesterday I was attending to Phia and her bug.)  After my encounter last night I deducted that He designed to meet me today in yesterday's entry all along, that's God!  You'll deduct the same, I hope... 
"Do not compare yourself with others, who seem to skip along their life-paths with ease.  Their journeys have been different from yours, and I have gifted them with abundant energy.  I have gifted you with fragility, (my epiphany happened here) providing opportunities for your spirit to blossom in My Presence.  Accept this gift as a sacred treasure: delicate, yet glowing with brilliant Light, (just like God, tangible in the meteors last night!)  Rather than struggling to disguise or deny your weakness, allow me to bless you richly through it."

The gift of fragility. Great darkness needs Great Light. Look up. He is with us. Always. Love. Accept it and be blessed. Abundantly.

"Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own understanding."
Proverbs 3:5






-++

Generous Girl

  Many times as I encounter (or Sophia encounters and makes) another friend, they often declare how she has touched their soul and I'm reminded of the miracle in Sophia's giving heart. Our "new" friend will quickly tell me how lovely and amazing she is and how she gives her all, in all, she does. I smile and rejoice with them and tell them, "that truly is her gift. She is a miracle and a generous being, always! She touches our family, each and every day, in the same way."

  When friends, (new or old) want to learn more about Wolf-Hirschhorn Syndrome, I extend this website, wolfhirschhorn.org (like our geneticist counselor shared with us) to give understanding and a full picture of what it means to live with WHS . I remember, distinctly, our counselor suggesting we visit THIS website, FIRST, before we navigate anywhere else on-line. She said, "It's the most real and comforting website, they have found, in regards to gaining understanding (with others) in sharing our newly given diagnosis."
I'm so glad I trusted her and when I found the site and when I pushed the "Home" tab (three years ago) I knew...I was home! The banner of attributes were all to familiar and so were the children's faces.  Just like my Sophia.

  I'm always comforted by the banner of attributes and pictures of our children, that runs along the top of the page, when I come "home" to the website.  I identify as I've known my daughter, Sophia, attending life with Wolf-Hirschhorn Syndrome. I'm thankful to know and adore many people, here, now.  We can add many, many more, to the banner of attributes because living with our children's wealth is immeasurable compared to their living without some genes.

  Since then, the acronym, WHS has come to mean... We Have Story (with heart and soul) more than it means Wolf-Hirschhorn Syndrome (without a part (deletion) of the short arm of chromosome 4.)

  Here's another part of Sophia's story, offering another attribute in a picture mosaic, freely being a generous girl!

GENEROSITY...Freely giving to those around them, an overflowing joy welling up, deep within them and even out of their most difficult trial.

Regret or Rescue, Fighting to be Fearless

"This is the last I need to write today and the first to read tomorrow as I'm pulling up from a painful day...
I took the exit Change, a long time ago and tonight I find myself watching the sunset not for its glory alone (as I've watched many others) but for its hope to rise again~holding promises so hard I will find them in my dreams~to rise up and in the dawn find a thankful heart, PLEASE be thankful heart... or....no, NO, my heart shaking, I can't find my way back there!
I'll watch, hold and rise up, changed more. God willing. May my first words tomorrow be...Thank you, Jesus."
  I regretted posting this on Facebook instead of my personal journal. Maybe, you've been there, too? I left it out there...exposed. UGH!  I lacked much, that moment, even so, I've been been given much since..
  One friend, of many, wrote to check in... wanting a status update of sorts and in her encouragement shared how often, she is awakened, at the 4th watch (3 a.m.) and gets up and goes to pray. She is awakened, the 4th watch. (3 a.m.) to pray.  She shared Matthew 14: 22-36 with quoting this passage, "and in the 4th watch of the night, HE came to them walking on the sea."
  Three things spoke to me, awakened, 4th watch (Jesus came to them walking on the sea (water) and to pray.
  Remembering this parable, about Jesus coming to them, walking ON water but not remembering the part about the 4th watch, I went to Scripture to find it myself.  After reading Matthew's account I also read Mark and John's.
   I identified right away, with, "A strong wind was blowing and the waters grew rough."
 John 6:18 shows this happened, "when the evening came." 
Distress. Storm. Darkness!
"Straining at the oars, because the wind was against them." is how Mark 6:48 shows the disciples response to the storm.  I, again, identified with the disciples.
Straining. Struggling. Exposed!
"About the fourth watch (there it is) of the night he went out to them, walking on the lake." ON the lake, that is the story I remember. Jesus showing up in HIS supernatural way. Such an awesome part of the story, the parable, we remember. Jesus is Majestically Amazing.  But this time, in reading Scripture, I'm looking specifically to the reference,"in the fourth watch of the night," that time of  awakening my friend mentioned and finding herself going to pray. Remembering she mentions, 3 a.m....that's the middle of the night!
  I see it. I see Him (Jesus) in the fourth watch of the night...going out, in the middle of the storm, in the middle of the toil... "walking ON water," in the middle of the fear. The fourth watch is in the middle of it, all!
  How often do I see Him but miss Him "in the middle" of my life because of lack and am terrified, just like the disciples? "They saw Jesus approaching the boat, walking on the water; and they were terrified."  John 6: 19  
  Here's where regret in posting a personal struggle on Facebook turns into a personal God reshaping me, again!  Awakened to understand if I leave my post with the feeling of regret, I am left in lack, yet, if I leave my post in hope, with God, I'm left in the middle of His mercy, reshaped AND rescued!
  To pick up where I left off, (of course)" in the middle" of the story.
"But Jesus immediately said to them: Take courage! It is I. Don't be afraid." .Matthew 14:27
 Good news, right? GOOD NEWS!
  Then I keep reading but flip over to Mark's account and see, "He was about to pass them by." Wait, what? He watched the disciples in the middle of it ALL and he went to them, walking ON the water and Mark 6:48 says, "He was about to pass by them." He Watched, Went, Walking on the Water and WAS about to pass by them?
Yes, go look it up yourself, that is what it says. I didn't remember that part either!
Then the disciples said these words, "It's a ghost, and cried out in fear."
Doubt. Cry. Fear!
(All to familiar, huh?)
  He knew what it would take for His disciples to see Him (walking on water) and cause them to cry out so He could speak to them, immediately, and in the 4th watch (in the middle) of it, ALL!  Just as he knew what it would take for me to see Him, (in the middle) of my storm, my doubt, to see Him moving and speaking (in the middle) of my heart, again.
  He knew who He was and his purpose! How?  I went back to the beginning of the parable, found in Matthew 14: 22-23, "Immediately Jesus made the disciples get into the boat and go ahead of him to the other side, while he dismissed the crowd.  After he had dismissed them, he went up on a mountainside by himself to pray."
  "Immediately made the disciples get in the boat and go ahead of him to the other side."
  I didn't want to miss mentioning this part because of the importance in finding Jesus, from the beginning.  Making them go in the boat ahead of him and then Jesus watching in prayer all the while fearless, knowing they would be together on the other side.
   Okay. So, back to the middle of the parable when they all saw him walking on the lake, they all cried out and were terrified. 
"Then he climbed into the boat with them, and the wind died down." Mark 6:51
 Amazing, isn't it? John 6; 21 says, "Then they were willing to take him into the boat." Beautiful! There is nothing against them when He is with them!
 His purpose... to bring us to faith by revealing himself and living with us, fearless and when we cry out He reshapes our hearts leaving no way back, willingly to be rescued!
  The parable begins with  "immediately made to go", and then in the middle "immediately he spoke to them saying, Take Courage! It is I.  Don't be afraid." and ends with "immediately the boat reached the shore where they were heading."
Faith. Jesus. Fearless!
 Please, go read the accounts yourself. ( I, intentionally, left some of the story out for you to recall and rediscover yourself.)
  My faith, fighting doubt, that I declared to believe (exposed and written on Facebook) that night,  "I'll watch, hold and rise up, changed more. God willing. May my first words tomorrow be...Thank you, Jesus."
 God, immediately, reminded me whose I am and I'm further down the road from taking the exit Change long ago, because His Son, Jesus, who is changing me with determination and courage of faith.  I'm watching for hope with prayer because God lifted my eyes to see Jesus, supernaturally dying on a cross and I'm holding His Promise that I'm not alone, ever! Rising up...thankful because He is my Savior! Thanking Jesus, who doesn't pass by me when I cry out BUT immediately speaks of His mercy and love!

 Facebook status update; "This is the last I need to write today and the first to read tomorrow as I'm pulling up from a painful day...
Thank you, Jesus! You (purposely) died on the cross and rose again, You are with us (promise) in the middle! When we cry out You speak (passionately)and rescue us in the Holy Spirit (power) immediately to go with (peace) in the direction where we are heading! Amen"

Life Without Prejudices, Please.

I came across an amazing, deep seeded writing by a very compassionate man of faith, Henri Nouwen. As I read it aloud to my sister-in-law, recently, she confessed it needed to be published, once again. I thought about it and agree, it needs to be told so others can see the wisdom - so eloquently shared - by Nouwen.

~ "One of the hardest spiritual tasks is to live without prejudices. Sometimes we aren't even aware how deeply rooted our prejudices are. We may think that we relate to people who are different from us in color, religion, sexual orientation, or lifestyles equals, but in concrete circumstances our spontaneous thoughts, uncensored words, and knee-jerk reactions often reveal that our prejudices are still there.
~Strangers, people different from us, stir up fear, discomfort, suspicion and hostility. They make us lose our sense of security just by being "other". Only when we fully claim that God loves us in an unconditional way and look at "those other persons" as equally loved can we begin to discover that the great variety in humanity is an expression of the immense richness of God's heart. Then the need to prejudge people can gradually disappear."

 I re-publish this on my blog because not a day goes by without somebody doing or saying something, forming an inaccurate opinion about Sophia, living, being, "other". This is hurtful. The pain runs deep as it (judgement) can be quite oppressive.

I know I am guilty of the very thing Henri writes about. I wrestle and find I spend more time (than I wish to admit) making up my own mind about people, inaccurately. The feeling that I need to sort it all out. I know that's not my how I should spend my time. May I not forget, may I continue to see and most importantly be transformed from oppression to freedom.

Hopefully, as God teaches me this lesson through living two amazing life applications, I will always be reminded of this freedom He offers.

Raising and relinquishing - both - my children in being "other" (one by adoption and one by ability) has God opened my heart and eyes to seeing differently. He wants me to be free just like my children are free to be "other".

May I see and live toward a nonjudgmental life and offer mercy instead of judgement as Nouwen provokes me and not miss the immense richness of God's heart. 

WHS and Seizures Relationship Status; It's Complicated

One of the distressing facts about care-giving for Phia, living with a deletion of some genes and having a duplication of others, is that you can't predict any moment in time.
Phia started having recurrent seizures or epilepsy at age three.

 Looking back, she had her first seizure (that I know of, due to witnessing it myself) at six weeks old.  It was very short and I didn't see this activity again until she was 1 year old. It was similar to what she did at 6 weeks old  but when I asked her Dr's they called it an episode due to her underdeveloped central nervous system. She then had a small seizure in her high chair at age 2.
 I was baffled.
  It seemed these "episodes" happened when she was tired or sick. So we tried our hardest to keep her rested and well.
I didn't mention her episodes again to Phia's Dr's until age three when we needed to call 911.
We had just finished a Christmas photo shoot. Phia was dealing with a mild cold, I had given her a cold medicine and within a hour of the picture taking she had convulsed for about two minutes and lost consciousness.
This time the Dr's called her "episode" a seizure.
  We hoped it wouldn't happen again and we figured the cold medicine was not a good fit for her well being.
 By age four her brain seemed to develop a rut and each time she was sick or with fever, seizures became more evident and attacked longer and also began happening when completely well.
After a six minute seizure we were on our way to adding another Dr. to Phia's medical file, a neurologist. He determined  Phia was having febrile, complex partial and tonic-clonic seizures. What wasn't determined was why, no history of epilepsy in either side of our family's.
 Her Neurologist suggested trying a seizure medicine to help control or stop her new rut of seizures after having an EEG and seeing epileptic activity. Her unexplained developmental delays and now seizures of more dramatic activity had us assessing the risks and benefits of putting her a anticonvulsant.
Heart wrenching to say the least. 
We chose the med.
She continued to have seizures but less dramatic. The continued break through seizures meant increasing her medication.
Within two months of her 7th B-day, she had reached her maximum dose and we had received her microarray test results. She was living with Wolf-Hirschhorn Syndrome all these years and we didn't know it but it explained why she was having seizures.
She was missing her LETM1 gene, linked to seizures in children living with WHS.
We were off to Denver's Children's Hospital in February to assess her new diagnosis and another EEG to evaluate a change in her medication. We found she had been taking a med that was not compatible for seizure control in people living with WHS. 
Trileptal, (oxcarbazepine).

This is quoted from my post two years ago...

"The following day the news of the EEG was discussed with us. Sophia had changed significantly from her last EEG, (two years ago.)  My heart started to race.
 Bracing myself for the news that will change our lives, once again.
Remembering the Psalm I had just read the night before, "He will have no fear of bad news; his heart is steadfast, trusting in the Lord."
The Dr reports... No epileptic activity was recorded. She had no spikes of seizure activity ~ at all.  A clear EEG....really, are you sure, check again.
Then came the news that she could taper off her seizure medication. A turn on the road that came so unexpectedly. When you don't expect good news it really becomes even greater news! This was completely refreshing .
We thought maybe a med change but to be rid of them altogether?  Amazing. The report from her appointments remained outstanding.  Good news after great news. Choking up, as I write, on the goodness God has provided this little girl. He has held her when I couldn't and still is, thankful.
 He is her Sustainer."

Her relationship status with Wolf-Hirschhorn Syndrome and seizures; it's complicated.
It's unpredictable.
It's living moment by moment trusting God, who is still on the throne (as my previous Pastor would say) a promise that brings me great comfort!
The best case scenario, she may outgrow seizures and remain seizure free the rest of her life.  Or she may have a respite and then they reoccur due to anything that would lower her seizure threshold, she may go back on an anticonvulsant.
The worst case scenario, she may have her next seizure and die or if not the next one the one after that or eventually.
As I write these words I also realize, He is my Sustainer too. 

We are celebrating two years seizure and med free!

~Isaiah 46:4
"I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."