Rare Moments in Sharing a Rare Syndrome.

Coming home, after the 4p - Conference in California, I had high ambitions of writing about our time treasured, together. Our cup has been so full and overflowing that I haven't been able to express, into words, all that was experienced. Where to start?

This was our second conference but our first, REAL attendance at a conference! (Many of you know, our first conference, two years ago, was mostly attended in the ER and doctors office.)

Meeting another family, living with WHS, from Montana, was another highlighted first!

Because of Phia living with Wolf-Hirschhorn Syndrome, we've met this kind of generosity...a family of people, of deep longing, to see each other, where they are.

We are more than missing some genes.

Sophia and her friends are physically and mentally delayed, because of their broken chromosome but I can be in their presence and see more of what they are made of...unconditional LOVE.
She and her friends, living with this rare syndrome, clearly radiate love and I can't soak up enough when I'm around them.
I'll let these pictures show you what I can't put into words. Since we were in Hollywood why not let the pictures be the voice.

And action...

Evie and Phia

Party!

Kaylee and Phia

Camilla and Phia

Aiden and Phia

Emerson and Gabe

Rachel Coleman!

Phia and her Daddy



Phia and Evelyn

Montana Mama's

Phia and Ryan

Phia holding Josiah

Rebecca and Phia

Vincent and Phia

Phia and Savannah

Phia and Mia

Kaylee

 "Cut and that's a wrap!"

Living in the Woods

This.
This has been in my mind and on my heart, for a very long time.
This was something I wish I could have written but I didn't, now glad to see someone else did.
This was like walking into a Hallmark store and reading a card and thinking...how were they were able to read my mind?

This one hit home. While living in the woods, I'm thankful God is with me, casting back the fears that lurk here.

"This is is why we’re stressed out and why we can’t completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we’re waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we’re out of the proverbial woods because mentally, we can never really leave the woods. It’s all we’ve known since our medically complex children entered our lives, and we can’t erase the memories we’ve made there. We see terrifying and devastating things happen to the friends we’ve met while living in the woods, and we understand those things could happen to us too. Next time, it could be us."


This article, in it's entirety, can be found on Themighty.com

When Your Medically Complex Child Is Never Really 'Out of the Woods'

By 

Brandis Goodman

4-16-2016 Undeniably Supported by Me because of YOU

It all began with you, Sophia.  The moment I sensed your sweet, soft spirit, tumbling inside me.

 Undeniable you are.

Forgive me, for wrestling with denial, of living with your syndrome.

Today. 4/16/2016, we officially support 4p-/Wolf- Hirschhorn Syndrome as the National Awareness Day.

As our own state, Montana, recognizes this day (that is tied to your chromosome 4.16 band, that is missing some genetic material) from the office of our Governor, Steve Bullock, I'm grateful.

Side-note: (The date posted, on his official stationary, reads the same month, March, that became the month I found out, I was officially carrying you, 11 years ago.) Wow.

Knowing God scripted our story, before we even entered the first scene, he continues to stretch me out, to the end of my limits. I've come to accept ,that He does this, so I can fully trust Him to stretch you, to be limitless.

For that alone I will recognize my own state, of wrestling with the painful truth, that this is our new normal. 4~Phia. 4.16. 4-16. 4:-)16.

Undeniable that is. 

I love you, Sophia.  I'm learning to understand God's love for you, as well.

I'm seeing you, I choose to. Both of you.

Your eyes have the power to speak the greatest language.

Your eyes capture my heart, every time.

 LOVE

 So faith...don't fail me now, together, we've got this. 

Being a back seat driver, on this ride of living with WHS, is all good.
With God at the wheel and you, Sophia, by my side. We are moving on.

Undeniable.

LOVE.

The Heart of a Child

The days of the Spirit, working, in Phia's heart.
This is such one of those days.
This particular evidence, of the Spirit, began last night. An urgent prayer request on a friend's Facebook status. Another child living with WHS, like my daughter, was in distress.  We stopped everything, muted our devices and t.v. and went before God's throne, for this family and their little one.
We've been there.
Knowing it could be us, in need of prayer, at the next moment.  Knowing God is with us and knowing the need to draw closer to Him, in prayer, during these times.  Knowing how good God is, we took to heart their need and gathered together.
After each one of us prayed, Stuart asked Phia if she wanted to add to the prayer.  She kept her hands clasped tight and bowed her head, again and shouted out, "AMEN."  We all shouted back, "YES, AMEN!"

We continued our evening... holding on to the Amen (may it be so) attitude.

Before we tucked in for the night, we thanked Jesus for the good report. The child was stabilized and safely in the hospital.  Our continued prayers (we offer for this little one) at the request from her family, as they heal and trust God.

This (Monday) morning was a continuation of last night. (Monday mornings are the days I get to spend, with a group of Mom's, praying on behalf of our children and their school activities.)  My Bible and folder were ready, on the kitchen island, to grab on my way out the door.

During breakfast, Phia, left her counter stool to go find her eyeglasses.  Coming back into the kitchen, with her eyes perfectly framed by her glasses, she approached and flipped my Bible open and cleared her throat to read... "18 and 19," she said.
Pointing at the words on the page, she pretended to read and continued,  "Love you, honey, " with such conviction.
She then looked up (to see if we were all listening) and when seeing she had captured our attention she smiled, tenderly, into our hearts the very words she just spoke. 
We all smiled back and praised her for her Scripture reading and understanding.


"Thank you, Jesus, Amen!"

 Side note:  She is wearing her purple hair strand today! 

Top 10 Things My Children Have Taught Me...

This was written in my journal, two years ago.
I'm ready to post and have it serve as a reminder for me to remain teachable.

Sophia's nicknames:  Phia, Phia doll, Eyeballs, Lovey B., Sweet Pea, Sugar Plum

10.  Hardships happen. Life often brings surprises ~ unexpected and planned.

9.  Life is precious, sweet and good, always.

8.  Everyone needs to be seen and recognized.  Phia's way, in doing so, is with a persistent smile and simple greeting, to everyone who crosses her path.

7.  Let someone else help  ~ we need each other.

6.  Persevere, it is the way, you gotta go through it. (You can't go over it, and you can't go under it.)

5. Overflow with joy and give generously.

4.  Be empathetic, see pain and people and offer encouragement.

3.  Be thankful ~ it's the road to God.

2.  My abilities are my disabilities.

And the number 1. thing she has taught me... Simply be who you are ~ it's valuable and true!

Gabriel's nicknames:  Gabe, Gabers, The Gabester, Cheese Ball, Cheeks, Love, My Boy

10.  Love does begin at first sight.

9.  We are not our own.

8.  Having fight isn't always bad ~ can be a strength that needs direction.

7. Fighters have a super sensitive side and to handle that side with care.

6. Trust is hard but definitely worth it ~ Trust requires relinquishing instead of fighting.  It truly is what makes you strong.

5. Lighten up ~ laugh, play, enjoy life.

4.  Life is full of grace and charm.  Remember to remain thankful.

3. Protect what you have ~ it is priceless.

2.  Boys hearts are fragile.  Be careful with their heart.  Speak life.

And the number 1. thing he has taught me...Simply be who you are.  Embrace all of what makes you ~ YOU!

As it should be.

I believe God sent me the two children I needed to learn to become the person He needed.
The person He needs is the person who needs Him.
Thankful to God for my two children.
Blessed, indeed.

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."