Big Day...

When the appointments for Parker's eyes were scheduled it seemed like July 9th was so far away.

Well, here we are.

This afternoon we meet with the Retinal Specialist to talk about what he thinks we are dealing with in Parker's eyes.

In some ways I want to hurry up and be there and in others I am dreading sitting down to hear the news.

We could really use prayer.

Parker on the other hand just continues to amaze us.

The other day I found his journal from school tucked into his bed.

In reading through it I found this:

It says, "I will be joyful in hope as I wait for God to heal my sisters."

Yesterday, as we pulled up to church we saw a new little pagoda with some benches.

As soon as he saw it Parker shouted out, "Oh cool! A place to sit and talk about Jesus!"

He just amazes me.

I am learning to slowly surrender.

The Lord keeps whispering "I will never leave you or forsake you."

This may not be a road we have chosen,

or one we are strong enough to walk,

but God is strong enough.

He will be our strength.

Never will I leave you;
never will I forsake you.

Hebrews 13:5



A Long Overdue Update!

  Ok...so life kinda swallowed us up, mainly in a really good way lately. This is just such a sweet time in life and there are so many moments where I just want to freeze the kids right where they are and savor every moment.

First, this sweet gal turned 7...

I still cannot believe it.

She is such a joy, so bright & spunky, more than a tad mischievious...

cram packed with compassion

I just adore her.

For her party she came up with the idea of letting her friends decorate their own cupcakes...

To say it was a hit is an understatement...

Just check out the masterpieces...

 and the subsaquent spastic merriment...

                          

 This one of Ravenna is a bit blurry but I just love it...20 kids hyped up on sugar with hoards of balloons...

And this little guy....

had his first kiss....

like not a Mama kiss...

We were at a prayer retreat with some of our very favorite friends

When it was time to leave his sweet little friend Sydney yelled from the door "Parker, I need to give you a hug..."

So he scooted back up to the door. After a giant bear hug she turned and planted a big kiss right on his lips!

His little cheeks turned red, they hugged again and as we were driving away she yelled, "I love you Parker!!!"

He yelled back out the open window, "I love you too!!!!"

Then she yelled, "I love you all the way to the moon Parker!!!'

and he replied, "Me too!!!"

So darned precious.

This little missy has just been full of goodness and joy. Sometimes I think God placed her in our family just to fill up all of my cuddle needs. Mulitple times a day I hear, "Georgia and Mama stick together like glue and paper, paper and glue!" and "I love you my little Mama!"

I could just dirnk her up!

Medically things are in about the same place. After the positive MRI I was hoping we could skip the 48 hour parent torture chamber inpatient EEG but the Neurologist feels that it is still necessary. I know compared to so many other possible situations this is no big deal and keep trying to remember to be thankful that it will be my healthy child that I am entertaining in a hospital bed for 2 days (yep, she cannot leave the hospital bed). I am praying that we can also get to know and encourage others that are there for much more difficult reasons. She did throw another curve ball tonight with her whole hands and feet turning purple (all the way to the wrists and ankles). They pinked back up after a few minutes. Then about 10 minutes later she started crying in bed. When I went in she said, "My chest feels funny Mama...it goes Boom, Boom, Boom"...

Ravenna's tests came back late last week. The doctor said that he did not feel comfortable trying to diagnose her condition and feels that we need a very specialized Pediatric Hematologist. His receptionist said that he has been talking with and faxing information to different Hematologists to figure out which one can best help us. Talk about an amazing doctor!

I am learning so much in the waiting. Just how easy it is for me to stand in the shadow of worry and 'what-ifs' only to have my day eaten up and nothing to show for it. I went for a hike last week to spend some time talking with God. What I kept hearing was, "Let me hide you under my wing, let me shelter you, let me rush over you with my strength."

I am learning that it is a discipline to hide in the shadow of God's wing. If I do not deliberately put my mind there, remebering who He says He is and who He says I am, I am washed over with a tide of fear and worry, every time the phone rings and is not the doctor I have to recover. But as I keep my mind on Him, I can weather those things.

I have been looking up verses about this and these are what I have found:

Have mercy on me, my God, have mercy on me,

for in you I take refuge.

I will take refuge in the shadow of your wings

until the disaster has passed.

Psalm 57:1

Because you are my help,

I sing in the shadow of your wings.

Psalm 63:7

For in the day of trouble

he will keep me safe in his dwelling;

he will hide me in the shelter of his sacred tent

and set me high upon a rock.

Psalm 27:5

For this is what the LORD says:

“I will extend peace to her like a river,

and the wealth of nations like a flooding stream;

you will nurse and be carried on her arm

and dandled on her knees.

Isaiah 66:12

He is able, so more than able...every.single.time.

Oh How He Loves Us!

"Let the name of the Lord be praised,

both now and forevermore.

From the rising of the sun to the place where it sets

the name of the Lord is to be praised!"

Psalm 113:2-3

This sweet munchkin sailed through her sedated MRI!

They gave her a little versed before she went back and she cuddled up on my lap saying over and over,"G.E.O.R.G.I.A spells Georgia!"

They wrapped her in a warm blankie and cuddled her up...

I don't think it will ever get an easier to watch my precious child be carried away down a long white hallway (or any hallway for that matter),

but my sister-in-law kept me company and before we knew it they were calling us back to be there when she woke up!

They said she fell asleep great still spelling her name for them!

and the amazing part?

I called the Neurology office to find out when and how they would give us the results and the nurse said, "wait just a minute and let me look at her file..." and then, "Oh! The results just came in! Looks like preliminary results are completely normal!"

There is a normal healthy brain in that adorable little head!

She also has not had any 'spells' in over a week so we are praying that maybe she is growing out of whatever has  been going on!

Ravenna's blood draw went well and we should hear more in the next few days. The doctor said that we will meet with a Hematologist once we get the results to figure out what tests to run next...but she is feeling much better and had a fun birthday weekend (pictures to come) full of fun time with cousins and friends!

Today Georgia and I are having a date day, some cuddles & coffee and her favorite books are on the schedule for my littlest brave one!

She also has been so into the fact that when the sun goes down it is night time and when it comes up it is morning....and I think of the verse above everytime. God has know exactly what I needed to get through this hurdle of medical stuff!

Prayers Please!

   Ok...I know that I ask for prayer a lot on here but it is because I truly believe that God wants to know our hearts, to hear our cries and to meet us in the midst of the muck.
     Tomorrow morning Georgia has her sedated MRI for her brain. Sometimes when childre have midline heart abnormalities, they can also have brain abnormalities as these parts form at the same time in-utero. The whole procedure takes about 3 hours. I know that it is a minor deal but I still want to cover it in prayer. That her heart stays stable, that she feels peace and not trauma, that they get the images that they need.
   Also, we heard back from Ravenna's doctor and know a little bit more about her blood stuff. She actually does not have VonWillebrand's Disease...but her bloodwork was still off. They tested one vial of blood incorrectly so she will have to have another blood draw tomorrow :( So while I am at one hospital having Georgia sedated, Doug will be at another with Ravenna getting her blood drawn. From there, we will now be referred to a Hemotologist. Because it is not Von Willebrand's, it is something more complicated and rare but still will require more testing to figure it out. If the one vial that they need to re-test comes back abnormal then, from what I can tell it would point towards Hemophilia A which is very rare in females but not impossible....if not, her clotting times are still too long so something else is going on. Nothing like waiting to keep us on our toes!
    I keep thinking today about these Scriptures:

For you created my inmost being;

you knit me together in my mother’s womb.

 I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

 My frame was not hidden from you

when I was made in the secret place,

when I was woven together in the depths of the earth.

 Your eyes saw my unformed body;

all the days ordained for me were written in your book

before one of them came to be.

Psalm 139:13-16

 

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

  Matthew 6:34

 
I am just so thankful for these kids, they make my whole life sparkle and I would walk through fire for them. So tomorrow may be a bit rough but getting to be their Mama far outweighs it all.

Memorial Box Monday- His love outshines the sun!

So I met God at the beach again today :) Just before sundown I headed out for a walk in the pouring rain. It has been such a sweet day...Ravenna has felt a little bit better and has not had one nosebleed all day (thank you for praying)!!!! She was cuddly and funny and goofy again and it was just so good to see. Just before heading out on the walk I made myself a to do list for the week. On that list:

Monday : Call to schedule Georgia's sedated MRI

Monday: Call the Hemophilica Clinic to schedule further testing for Ravenna (she does not have Hemophilia but something similar called Von Willebrand Disease that will probably need to have ongoing treatment there)....

After my wave dancing yesterday I have been able to keep my eyes and heart more on the Lord and how He is going to carry us through. I was able to just sit and be with the kids as we played in the tidepools, searched some old army bunkers and just played & climbed around. After making that list some fear had crept back into my heart. Not fear of the unknown as much as deep grief of what my sweet girls will be going through. I know in the grand scheme of things, these tests are not that big of a deal. But to hold Georgia as she is sedated...to comfort Ravenna as she is poked...to walk sterile hallways one more time, boy it can feel overwhelming...and I just want to protect my babies who have already walked through so much.

So there I went, me and the storm, rain running down my face, waves crashing in my ears with my heart just begging, "Lord, I need to see you again." I felt so selfish because just yesterday He had met me so powerfully but here I was again just really wanting something tangible to help carry me through these appointments. So I asked, "Lord please, I need something that I can touch that I can carry in my pocket to these appointments. I just want to remember that You are there."

I searched the beach thinking maybe I would find a stunning seashell or something...then I started to feel silly. Who was I to ask that of God? But He does say to ask, He says He wants to know our hearts so as I walked up the beach I wrestled. As I neared the end of the beach I decided that maybe I was supposed to go and find something to remind myself of His goodness. So I turned and headed into the little town thinking I could find something little to bring in my pocket as a reminder...only to find all of the shops closed!

So back to the beach I went, this time feeling frustrated. I stomped my boots and muttered out loud (yes, anothe crazy lady sighting for those around me!) telling Satan that he just isn't going to win, that he can just bugger off because God wins. He. Wins. Every. Time. Say out loud that I was not going to give in no matter what. Then praying for God to fill my heart again and guide me.

As I began to walk some more...a bright purple piece of glass caught my eye. It was sticking out of the sand...and I heard, "My love outshines the sun" 

Commit your way to the LORD;

trust in him and he will do this:

He will make your righteous reward shine like the dawn,

your vindication like the noonday sun.

Psalm 37:5-6

 

As I began to walk more, I found blue and pink and red pieces of glass...and I heard

 

but those who hope in the LORD

will renew their strength.

They will soar on wings like eagles;

they will run and not grow weary,

they will walk and not be faint.

Isaiah 40:31

 

For my whole 30 minute walk, wherever I stepped I would see little bright bits of glass shining out of the sand....even up the little ramp to our hotel! As I type this I have a pocket full of beautifully bright shiny reminders that God truly is with me....and His love does outshine the sun.

Oh the Goodness of God...and please pray for us!

    I am sitting here on the Oregon Coast listening to the waves crash against the shore...and it is nothing short of a balm to my weary heart right now. We have quite a load of medicial stuff going on right now but I learned something more important today that feels far more important.
    This morning Doug watched the kids so that I could go for a walk by myself on the beach. Heavy hearted I headed out really needing to seek God on how to navigate what is next on our plate. My feet felt heavy as I drudged towards the shoreline. My prayers began honestly as a bit of a whine, "Lord why me? Why us? Isn't it all too much? I'm just so tired..." Heavy clouds hung in the sky but just as I looked up and started to pray a faint rainow appeared. I began to see the majestic power of thew waves crashing before me....to remember just how big and loving and powerful God promises that He is.

   As I walked along I noticed some little children playing right by the edge of the waves, laughing and throwing sand...the adults however, tended to walk up higher like I was, staying far from the places where their feet might get wet. I felt like I heard the Lord whisper "move closer", so I steered my steps towards the edge of the waves. As I walked along, I was so struck by the beauty, the lacy weave of the bubbles as the thin water slipped up the sand. Still, I stayed on the dry edge, quickly retreating when the water sped in.
   I found as I walked along that I longed to walk in those delicate bubbles, to trace their weave with my feet. So I tapped my boot clad feet into their little world, only a few inches deep, delighting in the rush of the lacy pattern playing over my shoes. As my heart began to feel lighter I thought, "Why did I hesitate? Why was I worried about keeping my rubber boots dry? How incredibly silly and how thankful am I for this dance in the baby waves now?" For everytime a wave rushed in my worries left as I got lost in the exhileration of the beauty around me.

     Tiptoeing light heartedly now in my little world of ripples and frill, a giant wave rushed right up to my knees, soaked my pants and filled my warm boots with icy March seawater. My first thought? "Crud, now I need to turn back!" The next? The Lord asking, "But why my child?" So, conflicted in my sloshing boots I kept walking forward. As I walked the Lord spoke again, "Little one, why do you fight so hard to stay where it is safe? Why do you fear the uncomfortable so? Do you not see?"
    I stared hard out at the crashing waves trying to understand. Again a wave rushed in dancing around me and once again I was lost in the beautiful delight...then without realizing it tears drenched my cheeks and I could see...
    The beauty far outshines the fear every time. He has NEVER failed me. In every trial, I have walked away in awe of how close I felt to Him and with what intimate love He carried me....His beauty has shone brighter than every hard thing, every fear, every discomfort has washed away in comparison to who God is and how deeply He loves me.

Do not fear, for I have redeemed you;

I have summoned you by name; you are mine.

When you pass through the waters,

I will be with you;

and when you pass through the rivers,

they will not sweep over you.

When you walk through the fire,

you will not be burned;

the flames will not set you ablaze.

For I am the LORD your God,

the Holy One of Israel, your Savior

Isaiah 43:1-3

 

Every time that I have stood with fear and trembling at the edge of something about to happen, the depth of His love wins out.

Deep calls to deep

in the roar of your waterfalls;

all your waves and breakers

have swept over me.

 

By day the LORD directs his love,

at night his song is with me—

a prayer to the God of my life.

Psalm 42:7-8

   As I stood on the beach this morning, I found myself searching for the next wave, not to run away from it but to let it wash around me. I danced with delight in that water letting it soak me through praying, "Lord, I want all of you, crash around me, wash over me let me be uncomfortable so Your beauty can shine" I am sure some people walked away from the beach talking about the nutcase woman dancing in the cold March waves...yes, there are still things we need to walk through soon but I know what unfailing love carries me through.

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Ephesians 3:16-19

A few prayer requests:
* Miss Ravenna was diagnosed with a genetic blood clotting disease on Friday. We need to do more testing to understand the severity. She has a really bad cough/cold right now and is having massive bloody noses multiple times a day. Please pray for peace for her (and us) as we tread into these new waters and for healing so that we can figure out how to treat this new need. Also these nosebleeds need to be under control so that she can go back to school.
(one thing I am becoming more aware of as I learn more, please if you are of Asian desent...give blood!)

* Georgia had her Neurology appointment on Friday. She will have more upcoming testing to ficure out if she is having seizures. She will need a sedated MRI and a 48 hour in patient surveilance EEG in the next week or so. Please again pray for peace as we go through these procedures.

Thanks my sweet friends!