Thursday, September 4, 2014

Say WHAT?!

Just a little double take happened for me today.  I happened upon this photo

shortly after our bible lesson this morning.  I was teaching on where power comes from and our bible verse was from Zechariah 4:6. "Not by might, not by power, but by my Spirit says the Lord Almighty." 

Lucia felt confident and wanted to recite it herself.  Seeing her brought chills to me- watching her, listening to her voice speak such truth.  There was power radiating so I went ahead and videotaped her and put on Facebook.  I told her that I knew that she would bless someone by hearing her share the verse and so she said I could put it on.

Then I saw this photo.

She came home in May of last year.  Just a tiny one at 16.

No schooling.   Every breath painful and labored.

We didn't know what tomorrow looked like....and now it's been about 420 tomorrows later!!  Just astounds me! 

And this is what my girl is doing this afternoon

She has gone from 48 pounds to 80 pounds and I can no longer carry her as I once did so easily.  She wore size 7/8 and now wears 14/16!  She has stretched out considerably since having her spinal fusion in January and while she isn't eager for another surgery, we are all anxious for her hip surgery in November that will eventually lead her to sitting up without pain.

I wish so much that I could come here more often to update all of you on her progress because there is just SO much to smile and give thanks for.  Thank you again to so many who have invested prayers into her life. She is taking the gifts God has given to her and is sharing them with those who meet her.

Hope is a beautiful thing.  And when it meets opportunity, it's pretty amazing to watch unfold.

Tuesday, June 10, 2014

Are We Moved in Prayer to Action?

Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.  Psalm 126:6

   Ever since 2004 when the suffering of orphans became real to Randy and I, we have carried a burden on our hearts to see every single orphan be nurtured in family.  Naturally, this burden then extended to those families who were yearning to the depths of their souls with this same longing.

  How do I describe the cry in the belly?  It's the answer to prayer when we asked God to keep alive inside of us the pain of the orphan who knows no hope.  It's the constant reminder of who we were before we knew the saving grace of God.  It's a holy ache that we pray everyone in the body of Christ knows and grasps; that compassion be awakened to a full measure of movement of prayer and action to touch the very least.  It's the deep love of Jesus who lives inside of us, prompting to become a vessel of His healing on earth as it is heaven.

     Lately, the waves of cries feel weightier than ever as families walk this journey feeling the rejection of the world as Christ did when they said YES to the orphan.  We are not without hope, and these families are not either- but they do need a support system as the spiritual battle that rages against them is fierce to keep the lie of defeat screaming in their ears.

    Friends, I am asking you to join Grace Haven.  I am asking you to begin praying as Randy and I do to carry the voice of the voiceless within your heart and let it out to be heard readily with song to heaven and to not fall victim to the hopelessness of LACK and impossibilities that the world provides.

   How do we enter in? First, we present ourselves emptied and ready to be filled with the love of God through humble spirits who know all power is through Christ Jesus.  Then, we ask to be used to bring what is poured through our vessels to be handed on to the weak who need Him.  And we ask to SEE through the lens of compassion who holds not judgment but seeks righteous redemption through forgiveness and grace.  Glory be to God!

We are calling on our brothers and sisters to lift up the families who come to us, crying the belly ache not for themselves but as carriers of the Lord's heart for a precious jewel held captive.  Near or far, doesn't matter.   Let's just love and carry their ache.  Ask them how you can help.  Rally your life group at church to set up a 24 hour prayer vigil for their family and child.  Prayer moves hearts.  There is no movement like the move of God.

I want to highlight a few families who are in need of your prayers and if you feel moved to give, than give freely and cheerfully and FAITHFULLY with blessed words of life.

The McDonald Family blog
Immediate $1500 NEED

The Kunkle Family 
Dale and Buffey leave JUNE 20th for Ukraine.  Please keep them in your prayers as they travel for their first time to a country who is in distress to say the least.  Prayers for protection, wisdom, revelation and divine appointments.  Please pray that their families here at home would be prepared and bathed in God's grace and peace while they are away.

They are in need of $5,000 still with a short time left before travel.  They have $375 more to go towards their $500 matching grant at Grace Haven that goes through Thursday.

Right now, Project TLC is offering a t-shirt fundraising effort for both the Kunkle's and the McDonald's.  Just go visit Project TLC T-shirt Fundraiser Details

The Menges Family is in the middle of making fresh strawberry jam to raise funds.  This family just touches my heart!  They have sowed and prayed and we currently have a $500 matching grant that ends at the end of Thursday at midnight.  So far - $0 dollars have been given.  Will you please help share their story and link and ask for prayers for the floodgates to open?

The Simmon's Family
 They currently have $300 more to go on their $500 matching grant at Grace Haven.

The Johnson Family
has a $500 matching grant at Grace Haven through Thursday and has had $0 donated since the announcement.  Please pray for no paperwork hindrances and for His provisions to be poured out generously.  Grace abound!

All Grace Haven Families
have prayer need as they travel and await the birth of their child.  Please pray for hearts to be prepared to bond and against the spirit of rejection.  Pray for Holy Spirit guidance to minister to their children.

Praise God that He uses us, weak ones, to be renewed and to become moving, living vessels with all GLORY to the ONE who does it all.

12 I thank Christ Jesus our Lord, who has given me strength, that he considered me trustworthy, appointing me to his service. 13 Even though I was once a blasphemer and a persecutor and a violent man, I was shown mercy because I acted in ignorance and unbelief. 14 The grace of our Lord was poured out on me abundantly, along with the faith and love that are in Christ Jesus.
15 Here is a trustworthy saying that deserves full acceptance: Christ Jesus came into the world to save sinners—of whom I am the worst. 16 But for that very reason I was shown mercy so that in me, the worst of sinners, Christ Jesus might display his immense patience as an example for those who would believe in him and receive eternal life. 17 Now to the King eternal, immortal, invisible, the only God, be honor and glory for ever and ever. Amen.     1 Timothy 1:12-17

Tuesday, May 27, 2014

Swing Time in Seasons

Changes are happening.  The Lord is shutting doors and opening new ones.  Learning to embrace new things and letting go of old can feel shaky in the beginning but as we have found before, it is always for our good.  No matter what, we will still declare the goodness of God!  So, let me share some GOODNESS!

First a quick update on Jubilee (and Holden too).  These two struggled for so long.  I mentioned it in an earlier blog post titled Jubilee's Breakthrough but as only God can do, he not only brought them closer but used the heartbreaking news that our family was not welcome at their school any longer to rise up in Holden a beautiful response.  God is stirring in him a compassion towards the weak as he processed injustice.  We see his heart expanding.  While no one ever wants to hurt, we are getting to witness new growth and a new season in our children because of it.  And the most exciting news of all is that our family has been warmly embraced at a new school where all of our children are welcome. That means, we get to go to one location!  (That's feels like a small miracle!) 

Many have been asking me about Cephas or "Mr. Awesome Sauce" since his double amputation last month.  His legs were healing nicely the first two weeks and we went back for a check up giving us the go ahead to allow him to begin moving about to see how he would find his way.  Soon we noticed that one of his legs was rubbing and re-opening the incision.  We've had to deal with a small infection and lots of drainage again in the one leg and so we have gotten acquainted with the Wound Care Clinic in our town through Mercy.  They have been SO good to us.  Must put a little shout out to Dr. Friesen.  He has such sweet bedside manners and his love for his patients so very obvious.
Surrounded by his AWESOME friends!

We have also been given a bit of discouraging news about Cephas' legs.  His thigh bones are pretty severely curved from malnutrition over many years and with his hips being dislocated and no glut muscles, it's very very difficult for him to pull his legs together- they want to fall out to the side.  When he is in his wheelchair we put a strap around his legs to keep them together and from rubbing on his wheels.  Because the wounds haven't healed entirely (close though!), he hasn't had as much opportunity to try and pull up but the couple times I have seen him he is quite challenged with the spreading of his hips to the side.  Please pray with us for him to be strong in his upper body and that he would not lose his freedom in mobility.  We know that his lower limbs really needed to go.  They were in the way and it was a matter of time before his knees snapped the way he was putting weight on them.  They continued to bend.

So while no one is sorry about the amputation, Cephas also hasn't really had the opportunity just yet to discover what new things await him on the horizon. We continue working on stretching and strengthening and in usual Cephas fashion, he finds a way to see the positive.  His loaner wheelchair has provided him some entertainment.  He really enjoys wheeling himself and so I am prayerful that his joy remains full and that he is patient as he works each day as they come.

Lovely Lucia!  She has new things to share too.  After that long four month wait to get out of her body brace, she had a chance to try that swing at the park she had been watching everyone else use.  It was hardly cozy but it was doable.  She continues to have increasing pain in her hip as she spends more time sitting upright in her chair and we will soon be discussing this with an orthopedic surgeon (or two).  Even so, she squealed at the opportunity to get in this swing!  So here she is!  She handled about ten minutes which we think is pretty fabulous.

Lucia's First Swing

Life is full, so very full.  Pain is part of that fullness.  It's through our pain, we have learned to appreciate more, recognized it's use to take us to new places, causes us to press in to Jesus and not rely on ourselves.  I'm counting it all good, because my Father in heaven is ALL GOOD!

See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.   Isaiah 43:19

Thursday, May 15, 2014

Lucia, Tall and Strong

    Oh the long, long road.  Sometimes I can start to think things are hard, like I can't catch a break.  And then it doesn't take me long to shake that thought loose.  I've got some kiddo's who know the slow and steady trek all too well.  I think Lucia and Cephas have touched so many lives because they have illustrated a  crazy kind of joy under trial.  They truly are filled with a light that could only come from a supernatural Preserver and Protector.

   So this photo you see?  This is the straightest Lucia has EVER sat.  She looks HUGE to me and it seems in appearance she has matured as well.  I think it's the way she holds her head so high, and the hair that has grown (no more shaved heads!) and now even gathers just a bit at her shoulder. 

    She sit up higher in this new borrowed chair (until her own arrives) that is allowing her to see up and over our counter tops so her new favorite thing to do is watch us cook.  She is seeing the world from a new vantage point. 

    Today we went for a walk around the block and then she "helped" me pull weeds.  I noticed a new ease over her.  She asked me loads of questions.  How did you meet Dad?  When did you move to this house?  How did God show you Grace?  And as I shared the story of my life, I could tell she was expanding her processing too.  "So mom, God had to show you how to be a parent to Grace. And you had to not be scared to come back for me and Cephas."  Yes, I told her.  "God had to show me that He would take care of me every time, if I would listen to Him. Sometimes that is hard for us to do." 

   Then she said, "I don't feel scared anymore.  I have a home.  I have a family.  And God has helped me.  It took a long time."  About then a robin landed on the ground nearby and I pointed it out to her.  That bird sat for an exceptionally long time and I was reminded of Matthew 6:26 and shared it with her.  "Lucia, God says that if he can take care of all of the birds, how much more will he care for us?"  She gazed for a long time at the bird.  I swear that bird knew not to move, that she was enjoying him.  "God is good.  All the time.  Never leaves us.  He touches our hearts," she said quietly.

    I was behind her pushing her along and tears welled in my eyes.  People will never know her suffering.  Never know the kind of time and torment she has endured.  She will always express life to those who see her and yet the kind of lessons she has learned - none academic - have prepared her for so much more in this world than those who were raised "having it all."  Thoughts came flooding of those who feel sorry for her or look on her thinking she doesn't know anything....and my oh my,  she knows so much more than we can imagine.

    She is gifted in relationship.  She sees hearts.  She wants to understand them.  Doesn't get impressed by a thing, only moved by the love she sees.  So quiet she often is,  and sometimes silly, she has a precious personality.  She was a gift to me.  God chose her to quiet my own heart.  No mountain I wouldn't climb for her.  How God can take those things we are certain we couldn't do, and then mold us to be so in love with them, that we think how did we ever live without them, blows my mind! 

And we all, who with unveiled faces contemplate the Lord’s glory, are being transformed into his image with ever-increasing glory, which comes from the Lord, who is the Spirit. 2 Corinthians 3:18

Thursday, May 8, 2014

Living as Light Under Trial

     I have a few desires with our blog.  I love that I can record our life happenings as a remembrance and to share with our friends and family.  But I also want to be honest with those who are walking similar journeys, so they can be encouraged and to know it's not about perfection, but lots of grace.  I want those who are about to step into adoption, to look at us, and to be encouraged that God's grace is more than enough. 

     At the same time, I want to honor my children and their stories.  There are pieces of their stories they want me to share and pieces they don't.  And there are aspects of our journey I don't share in order to protect and other aspects I feel prompted to share for understanding, education and ministering to hearts. 

    A couple of posts back I wrote about Jubilee's Breakthrough.  I waited to share some of the challenges she had walked through because I didn't want it held against her.  Our pasts become our testimonies of what God has done in our lives.  And so, because Jubilee has had such incredible breakthrough, I wanted to share it as encouragement for those who had been in the trenches doing hard work for many months without seeing success.  While we are in the middle of many BIG blessings and expansion in our home and hearts, we can, at the very same time be reaching down into a pit trying to pull another one up.  Highs and lows come together many times for our family.

    I was excited to share Jubilee's new found freedom and the joy that comes with it - until that blog post was used against her.  Can i just say - if we ever hold someone's past against them and decide they should not be given a chance then we have shot ourselves in the foot.  What chance should we be afforded? 

    Randy and I pray about the experiences we place our children in.  We think we are a bit on the conservative side and cocoon with our children, being careful with what they participate in until we feel a prompting by the Holy Spirit and see the fruit that has come from our cocooning period.  Only then do we consider placing them with others.  We take into consideration who they will be with, even the room they will be in, the duration of time of the activity and the subject. 

    We have a little girl who has overcome a mountain, is beginning to feel as though she belongs.  Joy is filling her heart.  Peace rests with her.  New steps are being taken.  But fear came to meet us a couple days ago.  When we signed her up to join Rainan in two, one hour classes (I am able to be there for), we were told the school was unable to care for her needs- because of the blog post I had shared. 

     Fear prevented any openness to meeting her, to giving her a trial period, to trusting the wisdom of Randy and mine in allowing her the opportunity to grow in experiences that bring her joy!  Fear read my blog and instead of seeing where she is now, decided where she was is still present.  I have to be honest, I have wondered if I harmed her by sharing.  We certainly didn't imagine anything but for the body of Christ to celebrate with us, and to partner with us in encouraging her successes.

    God has been so good to minister to Randy and I to remember that this ministry goes far beyond what we do with our children but our battle extends to stand in faith and truth against the fear that still permeates within the body of Christ, unable to see the abounding good works that God is doing.  For a moment, we trembled in the sting for our daughter.  For a moment.  But through forgiveness, God reminded us that this is still Grace Haven.  In the safety of Jesus, no matter the injustice or unfairness of man, God reigns and will make overflowing joy abound for our daughter!!  Her fate is not determined by man and so OUR joy overflows too! 

    Certainly we pray for healing to happen and Jesus to break His light into the areas of fear but whether or not that happens this time and incident for Jubilee or not, we believe He is using this opportunity to grow us.  Jubilee has witnessed our hurt for her, she knows without a doubt that when we told her she couldn't join Rainan, that it wasn't us rejecting her.  She laid her head on my shoulder then looked at me and said, "So they don't like me?"  I told her, "Sweet girl, they don't know you!  If they knew you, they would absolutely like you! You just keep praying and doing your very best and God will show you amazing things."

    As I was meditating in the word, the Lord brought me to Isaiah 49:8-9.
I love it as I noticed that the background of the verse is probably the year of Jubilee!

This is what the Lord says:

In the time of my favor I will answer you, and in the day of salvation I will help you;  I will keep you and will make you to be a covenant for the people, to restore the land and to reassign its desolate inheritances, to say to the captives, 'Come out,' and to those in darkness, 'Be free!'

    Our freedom wasn't stolen!  Jubilee is being set up for greater things.  God will make a way so that the living testimony of His grace in her life will be made known.  We will not be shaken!  We will not stop sharing the amazing work God has done.  Glory be to God!

Please join us in prayer for families and for God's people that no offense of man can become a snare to the transforming work of the Cross.  Jesus said, "It is finished."  His love is made complete in us!  (1John 4:12)



Sunday, April 20, 2014

First Easter Fun

We are getting ready for Cephas to have surgery in the morning so I wanted to take the time to put up some sweet photos from yesterday.  It was a beautiful day in Arkansas.  Not too hot and not too cold.  Perfect breeze.  As Cephas said, it was the perfect day.

We don't do baskets, but we love the whole egg hunt experience and everyone participated.

Cephas was SPEEDY!

Lucia said this was a special day she would never forget.  

Grace was a FIERCE competitor!

Liam raised the bar for the egg hider requiring some tree climbing!

Rainan acted as encourager and helped Lucia and Jubilee score a few finds.

Cephas retelling just how amazing the whole hunt went and his score of nine eggs!

Holden caught off guard while explaining the most current airline industry news with Grandma.  This was his first year not participating in the find part of the hunt.  He has grown up so fast!

Rainan's face made me laugh!  

    Just quick thought to share....something I noticed and want to remember to take note of.  We were at the store and I had Rainan and Liam with me to pick up some fun festive things for Easter.  It's difficult to spend money on trivial things at Easter but we do want the kids to have fun memories.  Once upon a time we did big baskets with treats and candies but we have moved away towards activities and to choosing one candy treat per child. 

    At the store,  I found myself observing Rainan and Liam looking at each of the chocolate bunnies and candy options and discussing what each child at home might like.  They picked out their own too.  Something was missing that I used to remember vividly.  They took pleasure in thinking of what their sibling would enjoy.  They contemplated what they would like to choose for themselves without begging me for everything.  I hadn't even had "the talk" with them.  

   Right there in the store, I felt myself getting teary eyed.  We made our purchases and their hearts were filled.  They didn't feel slighted!  I know this might not seem like a big deal but for me it was huge.  We have turned a corner from feeling entitled, to feeling thankful.  They know that Jesus rose from the dead.  If you ask them about Easter, they can tell you what that means!  

    No condemnation on baskets and candies and bunny's.  We love fun stuff too.  But we have wanted to be mindful that we cannot press into faith while also indulging.  The other day reminded me that we can have both deep love, appreciate what we are given and feel satisfied.  

    They won't remember a specific candy on Easter, but they will remember feeling the "perfect day." the morning....Cephas has his legs amputated at the knees.  We head to sleep now, knowing 24 hours from now will be a new journey started.  Thank you to those who have continued to keep him in your prayers.  He's such a little love.  I cannot imagine life without this guy.  So very blessed!

Thursday, April 3, 2014

Jubilee's Breakthrough

Last fall on our walk

I haven't shared a lot of Jubilee stories since she has been home the last two and a half years.  To be quite honest, she has had lots of challenges and I didn't want the kinds of things I would be reporting to be simply negative.  We weren't seeing lots of breakthroughs.  There were many long, long days.

But today, I am sharing.  I'm sharing because today has been combined with several days the last month or two of big breakthroughs and todays was pinnacle for her.  We celebrate it with her as it does bring relief to our hearts too but nothing like seeing her experience THIS success.  

For those who don't know, Jubi (pronounced JU-Bee) has spina bifida and hydrocephaly (with a shunt).  We knew she had much difficulty maneuvering her body and seemed very stiff and rigid in her upper body but it wasn't until Cephas joined our family that we could see such a marked difference in their abilities to use their upper bodies.

Our sweet girl (she really is!) can sound a bit more like a truck driver when she is frustrated and it seemed anything asked of her that was beyond her comfort zone (that means, effort was required) would turn into screaming fits, name calling and even throwing her head onto the tile floor.  I knew she was able to do so much more, but the inner strength and motivation to do it was needing to be found first.  That's not something that can easily be bribed or talked into with this one.

I knew I had to have her heart, but I also knew that she was smart enough to stay weak and unwilling.   So these couple of years have involved lots of tears.  LOTS of tears.  Lots of prayers.  Lots of do overs.  (That last one times 100).

"Jubilee, I want you to know what you CAN do.  I want you to see what I SEE!  And the only way that will happen is if I let YOU do it."  Those were often taken as fighting words and as rejecting words.  Those words had to be wrapped in all kinds of other words but they had to be expressed and they needed to be enforced with love.  

Before Christmas one day, she was particularly angry and had used bad words.  She wanted to put herself to bed but she was in her walker.  I told her if she wanted that she could do it herself.  By golly, having never done it before she figured a way to get herself into her room and turned around and up into her bed getting her braces off.  And- she did it quickly!  This was the beginning to a whole new way of how I began to approach most everything with her.

When she was given a paper to do her handwriting, she would write backwards.  I learned to take her finished paper and without reacting, just say, "Oops, time to redo."  She thought certainly I would become exhausted at wasted paper.  But she didn't realize I was aware that being able to write backwards took a lot of smarts.   After the tenth sheet, her paper was turned into me, every letter forward facing.  I let her pick out her sticker and hang it up.  I let it be something SHE was proud of and not about getting my approval.  I wanted her to know I was pleased but I really want her to see her possibilities when she doesn't give up. 

Bit by bit- task after task, screams became less intense, not as long and soon the efforts she was putting into her tantrums she began to put into working her body.  Her challenges are greater than Cephas.  He has great fluidity in his upper body.  She is much stiffer and it takes her twice the effort to do what he does.  She has one leg that doesn't bend and is hyper extended which often gets in the way too.  She's got reason to be frustrated.

Then- come February she decided to shock us.  She knew Cephas was doing his own catheter and I found her in our bathroom doing her own!  HUGE triumph!  Monumental.... I knew then that this sassy pants was more capable than any of us imagined.  And her patience had been growing....along with her self confidence and trust.

But the final HOORAY came today.  She has had a love/hate relationship with doors.  Her last hurdle was to figure out how to go in and out the door.  She had been watching Cephas do it effortlessly for months.  She was still caving into her scream fits and this morning she let it out...for the last time at that door.  She pulled and prodded and grit her teeth.  She winced and glared and reset her focus some more.  I LET HER GO FOR IT.  She was regulated.  She knew what she was after.  I was watching her move into productive determination. And this is what she learned to do today:

Jubilee's Success

My children are each unique with their own trials and they test us.  They cause us to have to press in to love,  patience and endurance.  But then there are these days, beautiful breakthrough days, that we get to celebrate with them if we will stay on the journey and see them through.  It's tough to be both the soft place while being the one who presses them out of their comfort zone.  But that is what God does with us too.  He doesn't want us to get so cozy that we don't grow, and move into all He has for us.  He doesn't want us to be satisfied with lukewarm faith.  He sees in us all the things we don't see in ourselves, and when we pray, He is faithful to press us into growing up into Him where we are most safe.  It feels vulnerable to grow.  Success is found in our mistakes too.

I think Jubi is beginning to have these glimpses of truth building up in her, and as her mommy, I am so encouraged.  Thank you God for walking these days steadfast with me as her mommy.  They are good, meant for good and goodness will be the fruit from the trials.



Tuesday, March 25, 2014

Sonya's Hope

     When Randy and I traveled to Ukraine last year, we were blessed with a surprise in new friendship with Christina Rudenko. She and her family are a very dear part of Eli Project our ministry partner in Brovary Ukraine. Christina's daughter Sonya is a special little girl who has been living with terrible hip pain for several years and is in need of surgery that cannot be done in Ukraine. After a lot of travel and visits with doctors, her hope is a surgery that costs $48,000 euro . They have been told by a German foundation that they will consider a possibility of providing a partial amount, but only after at least 50% has been collected.

      As the mom of five with special needs and knowing the challenges, I cannot imagine the added efforts of visiting doctor after doctor trying to find someone who will even bring help. I am asking you to consider reading about this precious little girl and her plight.

      I praise God that she was born to these parents who have trusted faithfully in the midst of much. Thank God Sonya was not orphaned! The Rudenko's represent HOPE to many in Ukraine.  Can we help them?  Can we blow their sock's off with Jesus love?  Can't wait to see what God will do!
Click on this link to read ALL about sweet Sonya and to see the documentation on costs. And by all means SHARE on FB if you can!! 


Lucia and Cephas story by KSDK's Mike Bush

Lucia and Cephas video -KSDK tv January 12, 2014

Cephas's Awesome Video's

 Next week we travel to St. Louis for his pre-op appointment with anesthesiology and his last visit with the doctor before the big surgery.  He understands his legs are coming off.  I'm not sure he can fully grasp what that will be like but I don't think any of us could completely prepare for a double amputation.

I decided to take some video for our own recording and memories and wanted to share with you all too.

Cephas crawling and going upstairs

Cephas going downstairs

It's sort of hard not to notice how sweet he is!  God has been so good to build up trust in his little heart and to give him such a joy for life. 

Lucia speaks!

 So many of you have asked how Lucia is doing so I thought I would take a little video and have her tell you herself!

Lucia speaking about how she is doing

If you couldn't make out what she said, she was letting you know she is doing great and working hard to sit up in her wheelchair for longer periods of time each day.  :)

She is very ready to be out of her brace.  The days are long in the brace.  She is keeping a good attitude as you can see but I know she longs to move on to other things.

Just some tidbits of information for those who might be curious:

- Typically when children or adults undergo a surgery of this magnitude they can begin a more rigorous schedule with therapy.  Because of malnourishment and being non-weight bearing for many years, her bones are very soft.  Her therapists are only able to work on helping her stretch her neck, move her arms and stretch her feet.  They want to be sure that her bones attach well to the hardware.
Lucia with her physical therapist, Tonya (WE LOVE HER!)
-She is in her brace except for tiny breaks from time to time.  Even when she bathes she is in a special brace made for bathing.  This means that snuggling together is pretty impossible.  Her greatest yearning right now is to snuggle with mom on the couch.  That's top priority when she becomes brace free!

-Lucia cannot come higher than a 30 degree angle until her brace comes off May 10th.  She has some fairly grandiose ideas of what that day holds.  While we are excited for all the future holds for her and have great expectations, we know May 10th begins a new journey of learning to sit up straight and holding her head up for extended periods of time.  Pray for peace and grace as she waits.

- She is scheduled for an appointment with orthopedics July 3rd to address her hips.  They are out of socket and on one side has no socket.  Pray we have wisdom in making decisions on how to help her be able to sit straight and onto her hips comfortably.

-Lucia has dreams to walk.  It's her hope to stand up.  The doctors don't think that is likely but haven't really told her that.  We know our God is a God of miracles - nothing is impossible with him.  Pray we are ever strengthened in faith and that Lucia will trust God, seeing him as good in everyway no matter what the future holds.

-We are so eager for beautiful weather outside.  Last week we had an extra nice day and she spent most of the afternoon on the covered front porch.  I thought I heard her so I went to the window to listen and she was singing!  She spent a good deal of time belting her heart out.  These are the simple pleasures that bring such joy to her and those who watch her.  

Thank you so much for praying for her! 

Wednesday, February 26, 2014

Lucia and Cephas Surgery Updates

  I promised an update to so many of you so long ago......

It seems my moments keep slipping by me.  So before I close my eyes for the night I wanted to check in here and thank all of you who pray for our family and who love us so purely!  Truly, I feel so grateful for the encouragement many have poured out over Lucia since the beginning of the year.

Lucia......sweet, sweet Lucia.

She is hanging in as best as she can.  She had lost weight since surgery and our ride home from the hospital - 6 hours - from St. Louis was tremendously challenging.  She vomited most of the way and we ended up taking her back into ER in the middle of the night to get her pain level under control to stop her. 
Lucia with Dr. Luhmann...the doctor who did her back fusion surgery
After two very intensive weeks, she finally began to smile again.  Oh how I had missed her smile.  She has several weeks to go yet still in her body brace.  The official date we can toss it out is May 10th.  She just had her check up on February 21st and the doctor says everything is going well. 
With Dr. Tam Williams - her pulmonologist (I LOVE HER!)
She will return to the hospital for her next check in July at which time she will meet with orthopedics about her hips.  Her greatest pain isn't in her back right now, it's actually her hips.  She has bone on bone rubbing and finding her right position is sometimes difficult.  She has some very big goals.  She told her dad at bedtime the other night that she plans on doing gymnastics!  Until then, we are anxious to see her sitting upright.  She can't come higher than 30 degrees angle and she can't tolerate much stretching.  Because her bones are so soft the doctor has ordered she be still to allow her bones to attach to the hardware well.

Cephas also had a big appointment on the 21st with orthopedics and he will be having both of his legs amputated at the knee on April 21st!  We are all excited about this....him too.  His legs have just been in the way of all he really wants to do.  Both legs, but the right leg in particular is so severely deformed with his foot completely rotated, his heel facing up and his shins curved from breaks and malnutrition. 

He is making HUGE strides!  He now does his own toileting and catheter.  He goes up the stairs and uses that bathroom to give HIMSELF baths....climbing in and out of the bathtub.  In order to come down the stairs he has to sit like a V with his feet up by his face and he slides bottom first coming down.  It's slightly terrifying as mom to watch but he really does handle himself well.  I'm not sure its the best thing for his hips but then again I dont know if he can do too much more damage there either.

So the big question everyone wants to know is if Cephas is going to walk with prosthetics.  We don't know.  His spina bifida is at the L2 level.  He has some quad muscles that work in his thighs but both of his hips are dislocated.  There isn't really a way to fix that at this point.  He has no feeling from his bottom on down and no glut muscles.  With all of that said, the doctor made it clear that about the time he tells someone they can't do something, they prove him wrong. 

He will start off with learning to get around and see what he does on his own on his stumps.  After that we will shoot for getting him up. He is so highly motivated!!  So yes we are believing with him for walking and we ask that you would join us in believing for his miracle too.  He knows he won't feel anything and he remembers his spine surgery this last September and feels good about that too.  We are told he will be in the hospital no more than three days and recovery is about 1 to 2 weeks so in the scheme of things it seems really quite short.  It will be all of the physical therapy and work afterwards that will be needed for him to reach his full potential.

Thank you again for praying and I apologize for not updating sooner.



Sunday, January 26, 2014

Feeling the Heart

   This morning I felt compelled to type out exactly what was on my heart right out onto my FB page.  It was stirred in the night as I had dreams of injustice being made right.  When I woke up I felt the cries of some adoptive mom's return to me.  So many times they reach out and their hurt one bats back or they think they've come so far only to find out new hurts peek from around the corner.

   What I wrote truly can be for anyone, going through ANY difficult circumstance but I wrote this in particular for my mommy friends who are fostering, have adopted, or are working with children who have been traumatized. 

   I want to preface this just a bit with a note to my struggling friends:

 I see YOU from the top.  I see your capabilities and the possibilities even as you list for me all that is set against you.  I see myself IN you.  And even more, Jesus does too.  He already knows what he set into you for this journey.  You are so very precious.  You have been chosen to CHOOSE back that you would be the vessel in partnership for your child. 

  If it's been a long while that you have struggled and you think you can't possibly do it right today, will you find yourself a mirror.  Look into it and will you recognize the miracle of you that God created?  (You had nothing to do with that.) What you want to do for your child, you must see in yourself.

Here's what was laid on my heart.....

Choice requires faith and courage. Every time you choose what is both right and difficult, whether you realize it or not, you have stepped into greater strength even as you feel yourself weaker. Doing this repeatedly develops the change we have hoped and prayed for. Not that the circumstances in front of us changed but that we were lifted up and over them. Our view of them is no longer looking up at a giant, but from a higher standpoint we can see the intricacies of that situation and this is called wisdom. Looking up to God for our answers and in our yes being risen over our circumstances to understanding.

The fear of the Lord leads to life; then one rests content, untouched by trouble. Proverbs 19:23

Walking toward the fear, not running from it.....its how we fly into victory with Jesus. He is the lift to the mountain top and the beauty that we can look up to along the way.

Maybe loving a child into healing feels like the impossible as you run to it, know that your heavenly Father not only waits on the mountain top, he not only lifts you up when all hell seems to break loose, but he is with you now as you take the first step and what he whispers is, "I did it all for you and I will bring you with me into perfect peace if you will keep focused on my voice, my deep love for you." 

Come away, my beloved, and be like a gazelle or like a young stag on the spice-laden mountains. Song of Songs 8:14

 You are able...more than able to live your life as a hero in faith. You are able to leave a legacy of wisdom and truth starting with one choice- to respond to His invitation.

Will you believe? Your child might not be seeing you as the hero right now and maybe you dont feel like one. Maybe you dont even feel like you have a choice in the matter but you do now. You choose how you will perceive. You CHOOSE to stay when its hard. Choose faith again today even if you have to do it intentionally every minute so you dont lash back in their pain.

Some who first sang out in joy to the world that God will never leaves us as orphans are singing it now, with tears streaming down, on their knees, outside the bedroom door of their broken hearted child who now to needs to know this truth.

Rise up mama and papa, you can do this love walk and you will experience the most alive in Jesus as you choose to see them with His heavenly lens.  Those tearful cries are a beautiful fragrance to your Father in heaven.

Breathe. Hear His voice. Look up. Let the tears fall through your smile and song.

 Love is worth it all.

 In the last days the mountain of the Lord’s temple will be established as the highest of the mountains; it will be exalted above the hills, and all nations will stream to it.  Isaiah 2:2

Lord, give them ears to hear your songs of invitation and eyes to see your working behind the scenes.  Let grace rest on their hearts today and mercy on their lips.  Your word does not return void.  You are our GOOD daddy!  Amen!

Monday, January 13, 2014

First Update Since Surgery

We are so excited that Lucia came through surgery so beautifully with no trach and she was extubated quickly.  She also showed off by spending less than a day in the PICU.  Her first night on floor she got some great sleep and we thought she was cruising for some sort of record.  Perhaps she remembered how things went with Cephas back in September.

Come Saturday morning she began to struggle with nausea and getting her pain under control.  Nothing unexpected or out of the norms for all she has just gone through, but my normally positive girl was struggling to see the good in what had just been done.

Dr. Luhmann explained that he was able to get a 50% correction due to her age, inflexibility of her bones and the softness of them.  But as far as we are concerned, she looks like she got much more than 50%. 

This morning began day three of recovery and it wasn't looking so good.  I was beginning to feel the lack of sleep and that helpless feeling of not only being unable to take her pain away but to know I was causing discomfort each time I tried.   I surprised myself when the nurse practioner came in and asked how I was doing. Tears fell like I turned on the faucet.  The kind of cry you didn't know was coming, and you aren't really so much sad as you are tired.  I recovered quickly.  I totally know its okay for me to cry, but I just didn't want to make time for it right then when we had important things to talk about.

Ortho came in to change her dressing and I was able to see the incision for the first time.  (Lucia says I can share it with you because its "not scary." (She is brave!) It's simply amazing to see how straight she looks. 
She let out some screams and yelled "no" at the therapist coming to work on breathing.  After they left I reminded her of the many talks we had about the after surgery days.  She asked me if they made me sit up and stand after my neck surgery and I told her the details.  She asked me if I liked it.  I told her that I hated it very much but I knew they were wanting me to get better.  I told her that when I made the decision that I wanted to work through the pain, for some reason the pain didn't seem as bad anymore.  With that, she looked at me and said, "Today is work day."  (She seemed to appreciate I went through my accident and recovery at 16 too.  She said, "I am like you.")

Soon the therapists came in with a wheelchair to take her to get xrays.  Her FIRST time sitting in a chair without hanging off the sides.  She looked at me with some determination in her eyes and I couldn't have been more proud watching her press into the pain.  She told the therapists thank you.  That's my girl!  Thankfulness DOES so much to help pain.  It just DOES.

Enjoying her grape popsicle with a movie.

She told me I didn't have to go with her into x-ray and when she came back they all said she was in good spirits and talking about her brothers and sisters waiting for her at home.  She has STAYED in the chair and is now eating a popsicle and watching the movie Enchanted.  She looked over a bit ago and asked for a pickle - her very favorite snack.  She got one down and its stayed so keep those prayers going!!

I keep thinking back on Peter getting out of the boat and walking on water.  DON'T LOOK DOWN!  Thankfulness keeps our eyes looking up today and the many days of hard work for her ahead.  Special thanks to those who have sent pictures and messages.  I want to get back to each one of you and its my hope to do that.  Each of you bless us in your encouragement and prayer.

Thank you God for all that you have brought my girl through.  Thank you for answering our prayers and helping us take the next step when it seems difficult to do.  Thank you for your provisions of loving mercy and reminders that your grace is all we need.  Glory!  Amen

Thursday, January 9, 2014

Lucia's Day

Lucia's last night "curly" she says so we decided to take a last photo.  She has a GREAT sense of humor.

     The weeks heading up to this moment have required much patience.

                                       But tonight, we celebrate!

Lucia made it through the having her picc line put in this afternoon. She was great about it.

This will make administering other medications later, much easier for her.

    We started our day getting the kids ready for a television news taping.  We were met driving up in big Gloria, the 15 passenger van and were followed throughout the day.  There was an ease about the whole thing.  Cephas was a great source of joy and laughter for everyone and most importantly kept Lucia's smile bright.

    We picked up some packaged PF Changs at Target and decided to make it a party night back at the hotel eating ice cream and candy.  We've been singing praises to Jesus and trusting Him in all things.

    In a bit we will take the time to read the special messages that have been sent to us for Lucia.  Thank you so much for continuing to pour out those prayers and messages of love.  They mean the most to Lucia.  She is so relational and that anyone prays for her, just blows her mind.  Today she told the camera man that Jesus saved her and that he makes everyone perfectly.  She knows He loves her well and your messages remind her of that love.  I know it will be incredibly encouraging in the days ahead.


    I will restore to you the years that the swarming locust has eaten......You shall eat in plenty and be satisfied, and praise the name of the Lord your God who has dealt wondrously with you.   Joel 2:25-26