Hands and house

Hands and house

Saturday, September 16, 2017

Zeke's Heart


"There is no fear in love. But perfect love drives out fear."
1 John 4:18

A year ago we were told that Zeke's pulmonary valve had become "essentially non-functional."


The Cardiologist said that Zeke would write his own story of what happened next. He was amazed at how well Zeke's heart was handling the stress of the non-functioning valve.

We were told, "Only time will tell if or when he will need intervention."
The hope was that he may never need intervention.


In May, Zeke had a what everyone's best guess was a hypoxic seizure while swimming at the pool.




He was fully checked out by the Cardiologist and seemed stable but a Cardiac MRI was scheduled.

 Zeke and I went to Portland for that MRI on Wednesday....


Sweet boy did such a good job listening to the medical staff and getting ready for his sedation...







Even though he looked back with a quivery lip, he walked hand in hand with the nurse to the MRI room.

She said she set him up on the big table and he said, "I'm a little bit scared..."

So they had his ladybug breath the sleepy medicine first.

I was not so brave and stood there in tears long after he was in that room...


During the MRI they said that they would be stopping his breath multiple times to get the images that they needed.

From the waiting room I could hear the MRI machine stopping and starting and time felt like it stood still.

At the end, the attending Cardiologist came out, when I asked how his heart looked she said, "Well, the right side is pretty enlarged. I am guessing that your Cardiologist will want to do surgery sooner than later." 


Yesterday we got a call from the hospital scheduler saying that the Cardiologist would like to schedule Zeke for a heart catheterization with the hopes of placing a Melody valve via catheter.



The crazy thing is that when the call came in, I was sitting in a cafe reading a devotional about the "In-Between"

I literally didn't have anywhere to write down the details for surgery, so now they are written in the edges of the book.


"So I stand, looking at the ground, smelling the faint fragrance of God. Never once did it occur to me that when I found God's trail again, it would ruin my life forever - for once you feel the breath of God on your skin, you can never turn back, you can never settle for what was, you can only move on recklessly, with abandon, your heart filled with fear, your ears ringing with the constant whisper, "Fear Not."
Mike Yaconelli


The verse I had just read...
"Be still and know that I am God" 
Psalm 46:10

So...October 30th Zeke will be having heart surgery.

Yes, Georgia will still be recovering but that is as far as we can push his heart.

It is super scary.

I have cried buckets of tears....

both out of fear and gratitude.

You see,

he is one in a million.

He is the 'Perfect' candidate for the Melody valve.

Most patients with TOF need to have a pulmonary valve placed via open heart surgery first before their next surgery can be via catheter.

Literally, this doesn't happen.

The only other child that I have come across that was able to have a Melody Valve placed without an open heart surgery first...

is our Georgia Mei.

So I sit in their shared bedroom,

and pray over them,

watch the rise and fall of their chests,

soak up their sweet snores,

try to memorize the curve of their innocent cheeks,

the way their hands curl in rest.

I don't want to walk this road.

I am full of fear,

of 'what if's',

and yet somehow in it all,

the promise is that Perfect Love casts out fear...

drives out fear.

So I lay my heart and my fear in surrender,

before the One,

Who is Perfect Love.


Thursday, September 14, 2017

We Have This Hope

             "We have this hope as an anchor for the soul, firm and secure."
Hebrews 6:19




      So much has happened...so much that I have needed to let sit in my heart and lay before the Lord. I know that some have been asking, thank you for giving us time.
    We have a plan, it is a good one. It is a hard one....and yet I am bursting to share what the Lord has done!

We spent the first night in a hotel with Miss Georgia and just spent time loving her, playing with her, cuddling her and playing round after round of 'Two Truths and a Lie Pokemon Style'...seriously, the girl knows her Pokemon facts!
She soaked up every second of it and so did we.

Hitting the pool at way past bedtime...



Up bright and early for the first plane flight she remembers!


Even though she knew exactly why we were going, she was all smiles all day long. Even on the way back when we had to run to catch our flight she said, "Mama, now I get to be like one of those people in the movies who runs to catch a flight!"


Trusty Mei-Mei was by her side the whole way.

"Mama I can't wait until we blast off!"

Seeing the tops of clouds for the first time




Rocking the giant paper shorts



This is where the amazing part starts....we absolutely loved the CHLA team, Dr. Goldstein told Georgia right off the bat "Georgia, you are the star of this show, what questions do you have?" She let her choose whether to stay and hear about surgery, to which Georgia chose to stay. Dr. Goldstein proceeded to explain everything in a detailed way that Georgia could understand but without any scary words. 
One of the first thing she said was, "You know that Georgia's popping hips have nothing to do with hip dysplasia right? That is her tendons popping."

The popping has nothing to do with what is wrong with her hips! Yet had her hips not started popping, we would never have had even the slightest reason to x-ray those hips and find the dysplasia. 
We asked what would have happened if we hadn't found the problem now....the answer, we probably wouldn't have until there was irreparable damage or her hips got to the point of an accidental dislocation which would have torn muscles and ligaments.

Do you get that? Her hips started popping at a point when her heart is functioning  'near normally' and there is NO damage in her hips!
What started the popping? Only the Lord knows. 


The plan....

Georgia will be having a Triple Pelvic Osteotomy on her left hip on Sept. 26th. We will be in Los Angeles for 2 weeks. She will be in a wheelchair/walker for 6 weeks. 4-6 months later she will have surgery on her right hip. To do both at once would be a 10-11 hour surgery and too dangerous for her heart.

BUT

That is not all. This morning I started working on how to fly her home and avoid the 16 mile rutted dirt road to camp.

I called Life Flight, they said they couldn't do it.

I called Angel Flight, they said it would be $10,000

They suggested we start calling Fire Departments to see if they could do something.

It felt super helpless.

I drove out the road today and wept.

I prayed and told God that I surrendered my little girl, that I trusted that He could open the door but if He didn't, I would trust driving back in with her.


3 hours later....

I get a text from Doug,

"Got us air transport"

What???

"Redmond or Portland to the Ranch. It is the ideal guy to do this. Check your email."

Doug has a co-worker,

who has a plane,

a 6 seater plane,

and is on Angel Flight's pilot list,

who has enough flight hours to qualify to land at the Ranch,

who is willing to fly her home for free!

Oh and he has transported wheelchair bound people before,

the plane happens to have the perfect doors for it.

I can't stop crying happy tears...

...and that happened hours ago!


I don't know why we have to walk this road.

I can't understand why our daughter has to go through this,

but I have no doubt Who

will carry us through.


"We will sing, to our souls

We won't bury our hope

Where He leads us to go

There's a red sea road

When we can't see the way

He will part the waves

And We'll never walk alone

Down the red sea road."

Ellie Holcomb Red Sea Road


*** Yes, Zeke does have some stuff going on with his heart. I will update when we know more but would love your prayers.***







Wednesday, August 23, 2017

Lemonade




       "When life hands you lemons...make lemonade."




   We have been sitting on some news that has kinda blindsided us over here...hitting summer fun hard in light of it too. A few months ago Miss Georgia Mei came to us and said, "Look what I can do!" With a big grin she swung her sassy little hips back and forth and a huge, loud "crack, crack, crack" came out...like the sound of popcorn only louder and more clear. Doug quickly said, "Maybe you shouldn't do that!" followed by, "we should probably have a doctor look at that."
      Georgia said that she wasn't in any pain, so I figured we would just showed the Pediatrician at our next appointment...but we began to notice the cracking when she sat down, climbed onto something and sometimes just when she stepped funny. So I loaded her up for the next appointment and off we went.

     As soon as the doctor heard the cracking she exclaimed, "That is so not ok..." plopped Georgia up on the table for an exam where it was discovered that Miss Georgia, pain free could place her foot into her armpit (think right foot into right armpit) on both sides. Her sweet legs also rotated WAY farther than they should to each side. We were sent immediately for xrays and knew that our doctor was deeply concerned about structural hip issues but also about a possible connective tissue disorder.

    That next Monday, we had a stat opthamologist appointment (because of the connective tissue concerns which can affect eyes). Driving in, I knew we would probably get a call concerning the xrays and what they found. In praying I told the Lord, "If it is bad news, you know I need to see you quickly in this..." At the eye appointment, they dialated her eyes and as soon as the nurse left the room, my phone rang....we had a diagnosis of bilateral hip dysplasia which our doctor described as "a big deal." Literally, as soon as I hung up from the call, my phone buzzed with a message from my friend Leah saying, "I'm thinking of you and Georgia and praying for you." The phone buzzed again and was an email from another friend saying, "I just want you to know that you are an incredible mother who stands in the gap for her children." I literally had time to read those, take a deep breath and then the doctor walked in....but honestly, it was just enough for me to hold onto knowing that the Lord was there, He hadn't dropped us, He would carry us.



     So...many Xrays, an MRI, consults with Shriners, Children's Hospital of Philadelphia and Children's Hospital of Los Angeles...we have a plan: Miss Georgia has bilateral hip dysplasia (DDH). Basically, this means that for some reason her hip sockets did not form correctly. Typically, this condition is found at birth and can be corrected with a hip brace...but the story is pretty different when it is caught at 10 years old.


Xray of normal hip sockets




Georgia's hip...the other look almost identical.



So...Miss Georgia Mei needs  Bilateral Triple Pelvic Osteotomies and possible Femoral Osteotomies (they will not know about these until they are in surgery and can rotate her bones around). This means that her pelvis will be broken in 6 places and puzzle-pieced together with plates and screws. Both femurs may possibly also be broken, screwed and plated to help the head of her femur fit into the new socket.




We will be going for a consult/surgery plan appointment on Sept 6th to Children's Hospital of Los Angeles and surgery Sept. 26th. Why all the way there? Because it is that complicated. At 10 years old, Georgia's growth plates are close to closing and she needs someone who has specialized in older child hip dysplasia. The 2 top hip surgeons at Children's Hospital of Los Angeles have agreed to do her surgery together to give her the best outcome. As far as the future goes...Georgia is at high risk for early onset arthritis and will need a complete hip replacement. This will be a lifelong journey for her.

The surgery is a really big one. So big that there are differing opinions on whether it can safely be done in one surgery or needs to be done in two. We will be making that decision on the 6th.





So, we are sharing this news to say that we desperately need your prayers...on so many levels this is hard and scary. We trust that this is not a surprise to God and that He will carry us and our sweet little girl through. If you are interested, here are some specific ways that you can pray:

* For Georgia's joy to be protected. Georgia is such an incredible girl who loves the Lord in a way that is so deep and so beyond her years. More than anything we want to protect that sparkle in her.

* For protection of her heart. She just had cardiac clearance, her heart is doing really well right now and is functioning the best it ever has! Still, she has a major heart condition and this is a really big surgery that will tax heart entire body so prayers for her heart will be huge!

* For Georgia as she processes. Unfortunately, at one of the first consults the doctor said, "Georgia would you like to see you hips?" then went on to explain what was wrong...and said, "So we will cut here, and here, and here..." sweet baby girl's eyes filled with tears and turned to bear hug me. They kept going and she heard it all...the surgery, 6-8 weeks in a wheelchair, then a walker, then crutches. She has had a hard time getting to sleep and is asking about these details each night, usually while wiping away tears.

* For wisdom in how to get Georgia home. We live 15 miles out a VERY bumpy dirt road. Honestly, I cried the whole way back down that road after diagnosis thinking about trying to drive a child with hip surgery back home. There is an airstrip at the camp where we live so we will be trying to figure out if there is a way to fly her home but really need the Lord to line those details up.

* For us as a family as we are in different locations. This will be really hard, our family is really close and I hate the idea of being split up for any length of time. We don't know how long we will be separated yet. Prayers especially for Zeke as he still thrives best when we are all together.

* For Zeke's heart. In the midst of this, we also have found out that Zeke's pulmonary valve has failed and that he will need heart surgery at some point. We are currently "pushing him into heart failure" until his arteries get bigger and a larger valve can be placed. They could do the surgery now if need be but would like to wait if we can. He has a cardiac MRI on Sept. 13th which will give us a lot more information about how he is handling having a non-functioning valve.

* Lastly, for safety as we travel. We have 6 medical appointments in the next few weeks, 3 which are in different cities, 2 that require flights. We would love it if you could cover those in prayer.

This hangs above our stove


So...why title this 'Lemonade' because through all of this, we have learned just how deeply blessed we are both in the love of our families and in our friendships. You all carry us in beautiful ways. It is difficult to see how this can be good and so beyond anything words can describe to think about handing our daughter over for something so huge...but hard things do not change the goodness of God and I know that in the midst of it all He will keep showing up.  



Monday, November 28, 2016

So Much Good...

     I am sitting here at one of my favorite places on earth, Mago's cafe in Mulege, Baja. Young girls in school uniforms are chattering by on their way home from school, cars pass slowly blaring announcements from loud speakers strapped to their roofs....and it feels like home.
    We have been in Baja for a little over a week, life is beginning to slow down and our hearts are beginning to reflect and breathe a bit more. It was a crazy, painful couple of months before we left. We arrived more broken and in need of time to heal than ever before. As I begin to sit, pray and reflect one thing keeps bubbling to the surface...there is just so much good when you stop to look.



Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things. Philippians 4:8

     Whatever is true, noble, right, pure, lovely, admirable, excellent, praiseworthy....why is it so easy to lose sight of those things? We all have our differences and yet when we stop and really look, isn't there always one of those things above that we can find in our lives, in the lives of others? Yet, it is so easy to get wrapped up in what is different, frustrating, challenging. 
   So, I find my heart wondering....why did God so strongly command us to seek out the noble, right, pure, lovely and admirable, excellent or praiseworthy. Not only to seek them out but to fill our minds with them?
     Nights have been rough down here, beyond rough with Zeke. He is having lots of belly pain due to his GI issues, these cause him to kick and cry, toss and turn every 5-10 minutes. We are beyond tired most days. Yet, all it takes is slowing down down, hold his sweet body in my arms, looking at the dimples on his little toddler hands and I melt. Having him as my son is so, so good.... beyond miraculous, me getting to be his mom.
   

     Living in a 19 ft trailer for 6 weeks in a foreign country can be a bit challenging :) Sometimes it feels like the dishes are constant, something is always being spilled and someone always needs to know where something is....and yet, the laughter of my children, the way they embrace new kids that come, the language of serving that I hear coming out of them....is stunning. They can't wait to serve, keep dreaming of new ways to help kids down here and sometimes, not always (but sometimes) are trying to help each other. 
   As we were driving down this year, our oldest two kept reminiscing about years past...and I realized, 8 years of dragging them down the Baja to serve has produced fruit....this trip is becoming their own. They are dreaming and planning their own future trips with their own children, they have their own parts of this trip that they are looking forward to most...

When I sit before the Lord, with all of my pain and brokenness...and realize how crazy much I am loved, the gifts that I have been given in my life, the pain begins to ebb away, my own frustrations begin to be crowded out because there is something shouting so much louder...the true, noble, right, pure, lovely, admirable, excellent, praiseworthy, it outshines the things that seem so loud when I rush through life, outshines the frustrations, the hurt, the fear....and guess what? God's promise is true:

"And the God of peace will be with you."
Philippians 4:9

Oh how I need this, how I need my heart to be re-set, reminded of where to fix my eyes.



Monday, April 25, 2016

What If We Did??? Mark 2 Ministries

There have only been a handful of times in my life where I have felt so certain,

so sure that we were supposed to do something.

Doors have flown open,

serious mountains have moved.

We have fallen in love with a program so beautiful...

But first I need to tell the story of how we got there.

I need to tell it because it is beautiful.

because it has been astonishing,

because it gives us the courage to jump,

because we may need the reminders,

that God has led us here.


So....

The sweet people at Washington Family Ranch 

told us to come on out and chat.

As we drove the long and winding road out to the ranch,

snow began to fall....

It was less than 10 degrees outside and everything was frozen white.



The perfect time to go and visit a giant summer camp right?

We pulled up at 3:00,

camp was nearly empty.

There were two staff there.

They were so welcoming,

we talked for over an hour as our kids ran around,

Zeke spouting out Chinese as he giggled and ran circles around the office.

In talking the staff  were really honest,

camp life can be really good and really hard.

They asked about our backgrounds,

and then said,

"Have you talked with Mandy at Mark 2 Ministries?"

"You are from Hood River, do you know Jeff Strong (Mandy's brother and our good friend)"

They took us on a tour....

on the very coldest of days.

Frozen waterslides,

dark dining halls,

everything empty.

Our kids were so, so cold.

We left thinking,

"Well, I'm not sure what to think of all of that."


Our drive home was full of conversation about what God might be doing.

We left feeling like we were supposed to do a few things:

Email Mandy,

and meet with Jeff.

Not sure what to tell them, we just told them both the story of what God was doing in our hearts...

and we committed to praying.



We heard back from the email,

they were glad I had written but didn't have any openings at that time.

We went back to 'normal' life.

I had major knee surgery,

and started adjusting to life in a wheelchair and on crutches for six weeks...

All while soaking in and pouring out love to our new little guy.

Even through all of that chaos,

we felt like God was preparing us for something.



We would find our conversations circling back to Washington Family Ranch.

What was that all about?

Was God doing something?

We would always land on,

if something was going to happen,

only God could open the door.


In mid February,

I got an email from Mandy at Mark 2 saying she and the Director of Mark 2 were going to be in the area and would like to have coffee with me.

So, I crutched on in to coffee with them!

It was a great conversation,

they are incredible women.

They told me a lot about the program,

and I told them about us.

Many things lined up...

but they didn't forsee having any openings for staff.

At the end of the conversation they said,

"Well, I'm not sure what God is doing but maybe the next step is to have you guys come down to spend a weekend at Mark 2."


So, we started planning,

so many questions and doubts swirling in the background...

What are we doing?

How can we be of any help at all?

We are not a small or quiet crew..

.are we nuts to keep taking steps in this direction?

Yet, every time we prayed we felt like this was a path that we were supposed to follow...

So we would take each next step.

(Zeke really loved my wheelchair!)

We set a weekend in April to go down and visit Mark 2,

fully expecting that the door God was opening was one where we would have a relationship with this ministry...

probably one where we would come down and volunteer on weekends sometimes.

Then an email came,

they had created a new position at Mark 2...

one working with the ladies house.

We started to pray hard.

Was God opening a door?

It seemed impossible.

So many things would have to happen,

so many mountains would have to be moved.

Our conversations started to turn to all of the impossibilities:

We are so rooted in our community,

the kids love their school,

I love my job,

our kids have medical issues,

we live in a gorgeous home,

we just moved in September,

the housing open there was a 2 bedroom condo,

we would be further from family....

and the biggest,

Doug had recently switched positions at work,

it would be impossible for him to work remotely.


As much as we had doubts we kept coming back to the conviction of,

What if we did?

We needed to keep walking this path as God unfolded it...

because He is a God of miracles.

We didn't understand but knew that God was leading us.


So...a few weeks ago we headed down to serve at Mark 2.

During that weekend, 

Doug was also attending a Men's retreat that was also at Washington Family Ranch.

Mark 2 is this beautiful ministry for adults with developmental disabilities. 

The "Friends" live at Washington Family Ranch in two houses (one for men and one for women).

The aim of the program is for the "Friends" to have meaningful work and to live in a community that

 values them as individuals and the gifts they bring to the community.

Let me tell you....

it is amazing.

Each Friend has a job that uses their personality and their giftings to serve the camp....

they help make the camp run!




So, we loaded up our craziness and headed down to spend the weekend at Mark 2...

well my friend Sarah and I at Mark 2 and Doug a few minutes away at the men's retreat,

popping over for visits when he could.

The weekend was incredible,

we fell in love with the women at Mark 2...

we saw the school,

met tons of people who live their and work at the camp.



Our kids ran and ran,

climbed the hills,

searched for treasure...

and fit right in.

By the end of the weekend we found our hearts begging God,

to somehow open the door for us to move down and fill the position.


It seemed like their were still some huge mountains.

Some, were crumbling already...

instead of a two bedrooms condo,

a five bedroom condo had opened up,

our kids,

we were so sure they would not want to move....

they love their friends and school!

By the end of the weekend they were asking how soon we could move there!

Mark 2 was asking us to consider coming...but they would need some sort of answer within a week.


As we drove home,

there was only one mountain left to move...

but it was huge,

Gigantic.

What about Doug's job?

We went home and kept praying.

We felt a ton of peace.

This whole story has been marked with crazy Peace.

We knew that Doug need to knock on that final door.

It seemed impossible....he works for a big company and changing positions has to go through a ton of approvals and can take months.

He emailed his boss.

The first day,

things did not seem promising.

It sounded like anything that would be open for working remotely would be a HUGE decrease in pay,

like back to just getting out of college.

There was no way.

I started to assume it wouldn't happen,

to gear my heart up to be happy where we were (which IS amazing).

Doug?

Decided to fast and pray 

The next day, things looked a little better but still nothing definite.

So he fasted and prayed for another day.

That morning he called me saying....

"You are never going to believe this! One of the managers was just about to post a telecommute position that she would love to have me for! It honestly would be a job I would love!"

The final mountain was beginning to crumble.

Within days the position was solidified,

the #2 in the company signed it,

Human Resources approved it...

and by Friday Doug had it in writing!!!

The final mountain completely gone!

And so.....

here we jump!!!

We will start serving at Mark 2 on July 1st....

and we can hardly wait!!!!

Look out Washington Family Ranch,

here we come!!!

If you want to know more about Mark 2 Ministries Click Here

for Washington Family Ranch Click Here

He has told you, O man, what is good;
and what does the Lord require of you
but to do justice, and to love kindness,
and to walk humbly with your God?
Micah 6:8


























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