We Celebrate That

I've mentioned before about Sophia's persistence.  When she wants something, don't get in her way, she is going to get it. She can say, "NOW, Mom".  And she means it. This is can be an act of defiance or an attribute.

She knows going to school is associated with work.  So each day, (when she is done working) she responds with a "bye" and "work, morrow".  Which means, "See you for work tomorrow."  This is delightful as she's been trying to form sentences and may I just say...form personality.  She has worked so hard to modulate her language to speech.  It's great to hear words, Phia style.

Although the week-ends are driven by wondering and persistent demands of "work, morrow" (go to school), with continual pressing of the question. It can be exhausting. So we've come up with a way of helping her focus to be in the moment and not worry about "morrow".  We concluded that as long as it is today we play.  So when she asks, an hour after we've been home from school, "work, morrow?", we say, "no, it's today so we play!"  She understands and reply's, "oh". Sometimes she will come back in an hour or so and ask again, "work, morrow?"  and I smile and point to the window and she, nodding her head will say, "oh...day, play" and I will smile with a yes. I love this girl and her wonder and style. We celebrate that!

But I didn't always embrace her in the moment.

Working through this grief process, as I look back at those days of wanting a name (diagnosis) for what was happening, I was much like Phia.  Always looking ahead and not able to be present in the moment. Persistent focus of another time than "the time".  I guess this is when the attribute becomes defiance and she has learned this behavior from me....?  I take full responsibility. =) (And I have learned more about myself since having kids than I knew about myself before kids).  I believe God sent me the two children I needed to become the adult He needed.

It took time, patience and compassion from God and one day, while reading One Thousand Gifts, "Just naming it......Just naming it. When you don't have a name for something, you're haunted by shadows.  It ages you."  He spoke through her words with healing and He gave me the chance to name it.  He knew I wanted to stop the aging process and the haunting. He knew I wanted to be in the moment and celebrate His gift.  I just didn't know how.

During God's healing process I was able to look deep within our experience and while absorbing all of Sophia and focusing all on God, I spoke the name. "The Fountain of Youth".  We have the fountain of youth! Thank you God, what a gift. Truly.

Today, we soak in "the Fountain of Youth... Phia" and we are so thankful.  She is so lovely and her wisdom is crazy good.  God's good.

Learning to rejoice in the moment of every day with giving thanks.  Resting in God's goodness and faithful love.

I'm still persistent and so is Phia but with God's goodness we are learning to be persistent in the very moment that we have, with Him and each other.  We celebrate that!

Purple to Orange

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 were 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. 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’d 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”. 

Grace Soaked Soul

Rain brings thinking.  I'm melancholy by nature.  It's been awhile since I've written, no news is good news!

 We've come full circle of weaning Sophia off her seizure meds and she has done well. NO seizures to journal or neurologists to call!  We are thankful.  She has stayed healthy, which plays a huge roll in her little life.  We know this won't last, in this toxic world, but for now we are (again) thankful.  Respites are healing, as well as a time to allow our hearts to swell with remembering His Grace, for the next dip in the road.  All is Grace.

 Since the wean I've been able to have Sophia by my side and that has brought school home!  She has always amazed me but these weeks she has AMAZED me.  She is learning, not by "typical' standards but far greater!  She is missing 58 genes, but doesn't miss a beat!  No, not one single one.  So what if I prompt her to say her numbers or point the letter out for a reminder or use sign language.......she is doing it!  Progressing, rerouting her mind, to learn!  God's Grace.

 Her home bound teacher and I have discovered she works for "Goldfish"  She'll do just about anything to get a snack, another grace by God.  She is wanting to eat and a lot of them!!  You go, my girl!  Will she always need motivation to work?  YES! ( Hey, don't we all.......ours may be subtle and hidden BUT motivation is always the key.)  I love that it is food. God's grace (as I always wonder if she is getting enough calories.)  Grace.  

 The next bend in this road, is travel.  We have a couple of back to back events.  This is always hard on us, me especially. Remember, I'm the melancholy one... there will be bumps and bruises along the way and since mine are still healing the new bumps and bruises tend to hurt more quickly and deeply. I've been reminding myself to live in the moment, for that is all I have, and not to worry.  Grace, right.......I need His Grace! Grace to respond to insensitive remarks, grace to handle the misunderstandings, grace to face the challenges, whatever they may be.  It's all grace........and I need His!

 Sophia is missing 58 genes but she is NOT missing an ounce of His GRACE.  May I not miss it, either.

We've had days of rain, pouring rain. Sophia reminds me, like the rain these past few days......linger a while in God's presence, letting HIS Love soak your soul. Letting His Love Soak My Soul!

Halfway Around the Bend

    We have entered week 5, (of a 10 week medication weaning) without many concerns.  The first week she had two days of her eyes dilating, abnormally, then her eyes stabilized.  She has had her eyes dilate this way on and off her whole life so we didn't think much of it.  We just watch her carefully during these times.  Day 2, (of week 2) she had a tummy virus with low grade fever and she faired very well, meaning no seizure activity.   Very excited about that as she was down 2mls of med, with a fever present  The biggest change is her ability to process her world at a different rate.  Although, we weren't aware of obvious or negative side-effects of her being on this medication, I have to note, (as she is coming off the higher dosage)... she is more alert and focused.  I didn't realize the med was causing these changes in her.  Being on the med, (these years and raising the dosage gradually) we haven't been able notice the subtle changes.  Kinda like putting a frog in warm water, then gradually raising the temp to a boil and the frog doesn't realize what is happening...just remains in the water until it's too late...(scary thought) but the best way to describe being on a seizure med.  Please don't think I'm against being on seizure meds, because I'm not.  Seizure meds are necessary.  Just trying to explain all the unknowns and process.  We, (as parents) are the frog, too!

  This week, Phia has been a little more clumsy and has fallen down as she catches herself from stopping suddenly or running. She becomes unable to process where she is in space.   This could be the WHS and her sensory or the meds or a combo of both.  Again we are watching her close and taking notes.  She has had sensory issues all her life and we've helped her to be "grounded" on earth.  Her wings are large...*SMILE*,  so this can be difficult.  I often look to  Stuart and shake my head at the possibilities that are before us.   We agree in silence, with only a smile shared between us.  During our adventures, living with WHS in Phia's life, we have learned to be thankful.  Thankful.... for it all.  We find ourselves smiling in silence often....... a gift between us and God. 

"The Lord is near.  Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." 

  I must admit, living this out is NOT easy.  I've had to fight against anxiety.  It seizes me like a thick blanket, mostly at night.  I awaken to shear panic and I fear the worst.  As I gain composure to fight this giant, I find myself forgetting the Lord is near.  Anxiety wraps me up in myself. This is the test.....  will I remain trapped in my head and myself or will I trust and put my thoughts on Him. The fear has me gripped by physical ailments as well..... sweating, heart pounding so hard I hear it in my ears and the inability to move a muscle, sometimes vomiting.......the worst, physical ailment, of all!    So, when I most need to focus on Him, I'm mostly focused on the immediate fight against these symptoms finding a way to plant themselves deep into my thoughts, body and soul.    I face the shackles and I hate them.  The best defense is to be in Gods presence, communicating with Him. I remember, "He is near" and I pray, telling myself to get out of my head..........pray...... OUT LOUD.   The words are urgent and the cry is desperation and I pray a prayer so ugly and broken that I hope He doesn't mind.  I find He doesn't and then I fall limp and He is there holding me and His word is rising up over my fears and it speaks deeper, than any fear, into my being.  My thoughts and body are are being soothed by His love and fear loses it's grip. My prayer transforms into that of thanksgiving, I crawl back under the covers and find His peace and sleep.

 Jesus said, "Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength." 

 Halfway around the bend, we are fighting to remain thankful and finding His Love.  Still could use your prayers. 
  

 

Another Corner to Turn.

     We are back home ~ from our annual Dr.'s appointment that takes us to Denver. Sophia was amazing on this journey from her ability to communicate and understand more of the world around her.  She was brave to undergo the EEG which she calls, "owie" and points to her head several different places to show you where all the electrodes go.  She prayed for Jesus to take "owie away".  Our prayer as well, that Jesus would heal her.  She fought sleep this time, which is progress for Phia living with WHS.  Her emotions have developed this year.  YAH!  She is able to cry and fight sleep like a typical child would be able to do.  Without any inhibitions we sang her songs and prayed, all with her directing and telling us what she needed.  A sneek peek, for those watching, into her beautiful gift of compassion and empathy.  She sang, "This little light of mine."  I would love to change the words to, "This very BIG light of mine."  She carries a torch inside her little body that reflects Jesus.  People are stopped in their tracks when they meet her and can see her brightness, pretty magnificant.  His way, along this journey, of keeping this Momma and Daddy seeing Him, too. 
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 epileptiform 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. 
    The next 10 weeks we will taper Phia off the medicine and homeschool her during this transition.  Please pray for her and for us to put our fears to rest.  It is as uncertain to how she will do, (coming off the medication) as it was for her to go on the medication.  We are taking each day as it comes and trusting in His care.  I'm thankful for God to unmask my deep dark fears and free me from them.  So here we are, another corner to turn.  May it sink down in my heart to focus on Him as we start around the bend.  Trusting in a good God, always.  He gave me these verses the week before we started down the road to Denver. "Do not fear, O Zion; do not let your hands hang limp.  The Lord your God is with you, he is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."  Zephaniah 3: 16-17.  May I not let my hands hang limp, may I relinquish to Him ~ everything.  And when I forget and get tired, will you please help me....... reminding me and then, with one on one side and one on the other, hold each hand and help me keep them lifted up to God, ( just like Aaron and Hur did for Moses when they fought the Amalekites)..........please! I can't do this without you.  I also loved that Aaron and Hur provided a rock for him to sit on.

New Year, Develop a Devotion to Deep Love

     In light of the New Year and making resolutions I'm embracing this past years moments with God in hoping to receive more and develop more devotion with God.  Deep Love.  Sarah Young has spurred my faith from her devotional, "Jesus Calling."  She writes, "try saying, ' I trust YOU, Jesus' in response to whatever happens to you." 

O.k., this is where opportunity comes in.  The beginning of developing a habit with God.  Take time, think about who God is.... (remembering God speaking to Moses at the burning bush), "I AM who I AM."  Also ponder the deep Love of God. 

    So, indeed, I hope to allow this habit to see God in every circumstance, acknowledging and accepting God's Sovereign control over my life and the entire cosmos.   

Psalm 139: 7-12
"Where can I go from your Spirit?  Where can I flee from your Presence?  If I go up to the heavens, you are there.  If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.  If I say, 'Surely the darkness will hide me and the light become night around me,' even the darkness will not be dark to you;  the night will shine like the day, for darkness is as light to you." 

   Sarah also writes, (from Jesus' point of view, as Jesus speaking directly to you)....."As you view events from this perspective ~ through the Light of My universal Presence ~ fear loses its grip on you." 

   This is a gift from Sovereign God.  I pray to view my circumstances, this year, from this perspective and receive His gift.  The action of prayer and belief become part of my practice.  Crucial belief in God in crucial circumstances. These circumstances become growth opportunities as the action of trust, accepting God no matter what.  When I accept God in this kind of trust He has revealed blessings in my life, rather than adversity.    I, indeed, need to practice T-R-U-S-T so I can see more clearly and gain understanding as it comes from the God of Great Love.  By continually practicing trust, God draws me in his arms and I find rest.  I find rest in the beating of His heart.  I need to ponder Deep Love in these moments.  He molds me while I rest, against His heartbeat and He has me listen to His Love causing me to love and be strengthened.  I need to remember He is my heartbeat.  Deep Love. 

Psalm 62:3  "Your Love is better than life."

There is nothing more refreshing than a quiet moment and the gentle presence of God's treasure in my ♥.  Beginning with the opportunity of God's Peace today. This Year can bring more hope, devotion, Love, trust, faith, growth, acceptance, gifts, Light, understanding, prayer, grace and blessings because of Sovereign God.  Deep Love.   Remember.....try saying with me and Sarah, " I trust YOU, Jesus" in response to whatever happens to you, in every moment, this year!

Isaiah 40: 11  "He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart........."