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.

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






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