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."

Purely, Unabashedly Herself!

Just a quick share of some unexpected joys that have emerged, lately.  (Since we just came through some unexpected hardships it makes this post all the more sweet.)

Phia has been modulating her receptive language to expressive speech!  She is adding more words and making sentences. Her latest and longest sentence..."You give me that face!"  (We were teasing each other and I gave her a look as she was being feisty.)  Out came that sentence...the one she was thinking and without hesitation, she could express her very thought.  We were shocked and thrilled as we quickly started counting the words...5!  Smile.

She is also singing more words to the songs she knows. She loves music and keeps the beat, a future drummer.

She is watching Sesame Street and interacting with the characters and trying to do what the characters are doing and she wants to know their names!  Names have been a big concept that she is learning.  When she meets people or pets, she asks, "name" as she points to them.  After she learns their name she asks them, "why?"  Love it!

She is also very helpful in her chores.  She reminds me of what needs to be done. She really thrives on routine and order.

She learned to scooter this summer.  That brought some hardship as she broke her first bone in her arm.  The flip side of that... she caught her herself by extending her arms which is something we have been working on in therapy... for months!  Yay!

She also is loving to jump rope.  She picked it out of some toys at a store and asked to have it!  She can do many things with her rope than just jump. Smile. She can tie knots with it, twirl it around her head like a lasso, wiggle it on the ground and pretend it's a snake, with hissing sounds and all.

Imagination is coming into her play in many other areas too. Interacting with dolls and making tea in her kitchen is common.  She is naming her dolls as of late. Rhon-a seems to be her favorite name.  (We know very few Rhon-a's or Rhonda's.=)  She also likes to name her dolls after family members, like Auntie or Papa.  Love, love it!

Tattling!  We all have to watch ourselves now...HA!

Just a few unexpected joys with Phia, purely, unabashedly herself!

Kindred Spirits, Phia and Austin

"You're visiting Seattle?  This is our home state. Wow...would love to meet your daughter, we have never met anyone with Austin's syndrome before." =)

This was the message in my inbox after posting a few Seattle landmarks on my Facebook page, while on our Spring Break vacation!  Such a fun surprise after we tried to meet another family but were unable to arrange a time.

"We are staying in Mukilteo...how close are you?  We leave Friday but have some flexibility. We tried to meet another family but it hasn't worked out. We haven't met anyone in person, either!" My response within a few minutes after receiving her message.

How exciting is this.  Hoping to meet another family has been a dream to us.  Living with WHS AND living in Montana hasn't given us the opportunity to share in this way.  We've depended on social media, online, since Phia's diagnosis.  This was worth changing plans and making time for.   A dream come true for our families.  Truly exciting.

A few more texts and we were able to pinpoint a time and we were on our way!

As I walked through the door, Val reached out her hand for a greeting and I couldn't help but embrace her. Another Mom, acquainted with the journey of living with WHS... in the flesh. (Somewhat like pinching yourself when you think you are dreaming but find out your not!)  This was happening, really happening.

Then came her children, bouncing to greet us with a hello.  Austin was bashful and in the background taking it all in.  Reserved but with a smile that melted my heart.  A few moments passed as we were all talking and greeting one another.  Then the wave emotion hit me.  Austin was so similar to Phia.  His mannerisms the same.  WOW, another kiddo like mine! Tears of joy and relief as I witnessed another miracle before my eyes.  (Here's a pic to show what I am describing in these two.)  It didn't take long to be comfortable. *Smile*

The time we had together was full of embracing our likenesses and capturing as much on camera as possible. We had a short time to simply smile and express gratefulness.  It was perfect!  I'll let the pictures speak for themselves...

 

Later, that same day, as we were sharing photo's and texting, Val wrote, "seriously, how cute are these two? So many similarities!  The best smiles!"

Yes, seriously, kindred spirits.  The best smiles that leave us smiling until we see each other, again.

 

Thanks to Val, for reaching out and making this happen.  Looking forward to growing together in this amazing friendship.  Truly exciting and blessed.

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!