Wednesday, April 23, 2014

10 things I’d love for you to know…..

No Hands But Ours Blog: http://www.nohandsbutours.com/blog/

(I’ve shorten the below blog (in blue) from NHBO so that if you are skimming you will get the gist of my heart….but if you have time PLEASE click on the link above and read the entire blog post…it is good! <3)

Our plane from China touched down 2 years ago with Josie.  And we were off to the races in terms of medical appointments and diagnoses.  Becuz until you get a “diagnosis” you don’t get any help.  It is a looonnngg process to get in at the specialists and get in at the therapy centers.

Appointment after appointment. Phone call after phone call.

And when we were doing our research about cerebral palsy we realized that every child is different.  There isn’t one CP kiddo who is exactly the same.  So it is really hard to get a “true” picture on what the future will hold. Some kids with CP have no cognitive delays but have trouble walking.  Some have little trouble walking but can’t talk, you get the picture. 

But with Josie we “kinda” knew where she was at. We had a “plan”.  Do therapy once a week and she will continue to walk with her sticks and get stronger and stronger.

P4200034

Now we didn’t know that her hips were so out of line and would need surgery and would set her back A LOT. We didn’t know her eyes were so bad and needed surgery.  We didn’t know that she has dyslexia and so many cognitive delays and will struggle with school.

And in all our reading “they” tell you that CP is NOT progressive.  Meaning it doesn’t get worse.  Which is true….but it my opinion it is progressive. Her brain damage won’t get any worse but as kids with cerebral palsy grow their bodies can’t support themselves as well.  And then their muscles get tighter.  And it is a snowball effect.

And that is the part we didn’t really understand.

We can see Josie is getting “worse.”  Her body is growing faster than her muscles can keep up. Her body functions will get harder and harder as she gets heavier and heavier.

Just the other day she couldn’t pull herself up anymore just using her arms.  She is 83 pounds now. (She is still 50% on the growth chart for an 11 year old!) She has made up for a lot of malnutrition and is healthier….so I’m thankful she is growing.  But it makes life interesting.

She may really gain strength again this summer being able to walk outside more and get some intense therapy.  BUT I’m not convinced she will ever get back to her forearm crutches…..when she was lighter she could use her arm strength to use her sticks.  Now she can’t do that and her motor planning skills have gone out the window since her seizures started. 

If you adopt a young child with CP you do have a “better chance” of them regaining more function. Therapy and surgeries done at a younger age make a HUGE difference.  But Josie didn’t have that option.  Unfortunately.

Many of our adoptive friends share a version of this story, and if allowed to speak for them, these are some things we’d like for you to know.

1. Sometimes, “How is she?” is a hard question to answer. We’ve probably answered it at least five times that day at church, school or gymnastics. Spoon up some grace if we hesitate and fumble through a response while passing each other casually in a hallway. We might just not have the energy for a coherent, summed up response for medical issues that are complex and heavy on our hearts. Still, know your remembrance was appreciated.

2. Sometimes it’s easier to share medical updates on FB, a blog, or in group email updates. We do want to express our hearts, and these help us do that when we can string our thoughts together to share at once with everyone we care about. Most likely, we can’t remember who we’ve updated and who we’ve missed. We want you to know the latest medical details, and we deeply cherish your walk alongside us.

3. All the time, we need you to PRAY. Nothing is more comforting to us than knowing that our girl has an army of prayer warriors fighting for her health and heart. We’ve felt the covering of your prayer during surgeries and procedures, and it has carrying power. We are always ready with an answer when you ask, “How can we pray?” And it matters much to us when you simply say, “We are praying.”

4. All of the time, your messages, texts and phone calls are of high value. When you email us prayers, we’ve probably read them two or three times. We likely have listened again to your phone messages while waiting for a doctor’s update. They are instruments of God’s provision of peace. Unfortunately, our to do and to go lists are long, and the thoughtful responses don’t happen. Don’t give up on us. We need you more than ever.

5. Sometimes we’d rather just hear about you. If we tend to constantly push the conversation back in your direction, go with it. Know we appreciate your effort to ask about us, but we still want to know how YOU and YOUR family are doing. Our path doesn’t eclipse yours. Have a struggle or need to vent? Tell us. We can handle it.

6. Sometimes we worry that we are burdening you with too much medical talk, and we find ourselves pretending to be more positive than we feel. We don’t share because we’ve already shared so much. Our medical journey doesn’t end after a surgery. There are always appointments, therapies, decisions, more surgeries and more days of at home care, and we wonder how many times we can ask for your prayer. We wonder how many times we can tell you that we are worried and weary.

7. Often we hear, “Let me know what I can do.” Though so grateful, most likely we are clueless about how to answer. We appreciate your offer and likely need help, but probably don’t have the energy to let you know how. It is a gift when someone asks specifically, “I would like to help you. Can I babysit your kids for an appointment this week?” Or, “I am planning to bring you dinner. Does Tuesday work?” While an incredible blessing, being served over a long period of time is also stretching. We see the care overall as extravagant provision from God, but on an individual basis, we feel like a burden.

I have to cut in here and say that just last Sunday a friend at church came up to me and said, “I want to help you.”  And I could tell she was serious. She wanted to truly come and help. And as we were talking I suddenly thought of a way she could bless me immensely.

She is going to come 2x’s a week over the summer and will take Josie to her intense PT sessions up at Hershey for me.  THIS IS HUGE! Barbara Ann….thank you.

And meals have just “shown up” on random days from Grandma Janet.  And every time she “just happens” to bring one it is a day that I have therapy or something going on that it is sooo timely.

Another way God whispers in my heart that we aren’t alone on this journey.

8. Sometimes people praise us for adopting a child with medical needs, or they praise us for caring for them. Know that we didn’t say yes to a diagnosis, we said yes to our child. Most parents wake up each day and meet their child’s needs. Please don’t see us, because we are weak, grumpy, and utterly insufficient. See a God who meets needs for His children. See a God whose heart beats for the least of these. Don’t praise our messy selves, praise God for work that is so evidently only Him.

9. Often, laughter is a load lifter. Milton Berle once said that, “Laugher is an instant vacation.” Mini vacations are always a yes. A Jimmy Fallon clip sent while we sit in a hospital room is a good dose of medicine. When you opened the fridge to get milk, did you find your cell phone? Text us. Our house is crazy, and it’s great to know yours is too.

10. Often we are told that God doesn’t “give us more than we can handle”, but we are finding the very opposite. This is way more than we can handle. We are far outside the borders of our own capacity, but every morning God meets us where we are, replacing our weakness with His strength, our fear with His hope. Experiencing what it feels like to take steps forward only because of God is the greatest blessing of this journey.

Thank you, family and friends, for journeying with us. Our family is weary, but has had to learn to trust, release control, pursue joy, find hope and live with more intention. God has much to say, and He often speaks most clearly through the little people that He gifts us with.

 Let’s all lean in and listen carefully, as the fragile ones have mighty lessons to share.

P4190004

Tuesday, April 22, 2014

Mundane

“When something spectacular happens, we can easily be sidetracked. If Elijah lived today, he may have begun a “Calling Down Fire From Heaven” ministry!”

Destroying hundreds of Baal’s prophets would appear to be a climatic victory for any prophet of God. Yet Elijah persisted in his assignment, of telling about the coming rainstorm. Even though calling down fire from heaven was way “cooler” he didn’t get distracted by his success and finished what God’s primary assignment was for his life.

“The dramatic is far more appealing to us than obedience to the mundane.”

 (paraphrased from Experiencing God Day by Day)

I read about other families who are going back again for another child….and I wonder and pray asking God, “Do you want us to go back again?????”

And you know what???

Each and every time I pray/ask I just don’t feel the calling to go back and adopt another child.

I asked someone awhile back, “How do you know you are done adopting/having kids???”

(They have more then we do!!  So I was curious.)

And he said to me, “You will have a peace that you can’t really explain.”

And after Lena we didn’t have that peace.

After Ava we didn’t have that peace.

(and I see now God’s hand of Josie’s file not getting done quicker than it did.  If it would have been ready after we got home from Lena’s trip we most likely wouldn’t have gone back/be able to go back for Ava.  And then Lena wouldn’t have the awesome sister/playmate that she does.  The combo of  having “just” Josie and Lena wouldn’t have worked so well. God’s timing of it all is evident now but while Josie’s paperwork was stuck in a drawer for months and months it didn’t make any sense!)

BUT now. 

NOW we have a peace that can only come from God. And I feel He is encouraging us to walk out  the mundane things of these journey’s now.

But a big part of me wants to travel again to China.

To experience it all again.

To get a young child, with a minor need, and have that “ fairytale” ending so to speak…..but God is saying to stay the course of pouring into the girls we have been entrusted with.

To not long for the “happily ever after” experience……but to see the HIS perfect storybook ending.

Not the fairytale version.

Steve and I were questioning which trip I had to hold Ava’s ears closed for the ENTIRE flight home from China. (yes that would be 13 hours!) I said it was Josie’s trip….he disagreed.

So I looked back in the blog (the main reason I blog…..to be my memory!!!! lol)

And sure enough it was Josie’s trip.

And as I was re-reading about our “adventure” coming home we both laughed and said, “What are we nuts?  We NEVER want to do that again!!!” lol

(click HERE if you want to re-live it with us!)

Now we still need to have an attitude of openness for where God may want us/lead us.

When we are IN China we have a feeling that we just KNOW we are in the center of His will for us.  We LOVE being there.  It is a hard feeling to describe but when you know that you are in the exact center of God’s will for your life it is a great encouragement to your spirit.

But to be reminded that it is ok and still part of His will that we do the every day, mundane, things of this adventure He called us to. 

As you move away from the center/mountaintop experience  it can be easy to lose sight of the calling that God gave to you.

And it is easy to want and crave that mountaintop experience again!

But life isn’t always mountaintop experiences (like we experienced when we are in China) A lot of times it is just the mundane things of wiping noses, going to therapy, and being fully present, that we need to walk out after we answer God’s call for our lives.

So when there is a peace that your family is complete we need to just sit back and be obedient and do the mundane things of life.

P4120024

Day by day.

It isn’t as dramatic, like calling down fire from heaven, but it is no less important to God.

The rain was just as important as the fire!

Monday, April 21, 2014

Easter 2014

IMG_7194

So while everyone was still dressed nicely and happy and the sun was shining I tried to grab some pictures of the kids!  And Boomer too! <3

IMG_7200IMG_7233

IMG_7289IMG_7277IMG_7279

IMG_7205

IMG_7178

IMG_7239

And then it was off to put on play clothes as we had some very FUN and special friends coming for lunch!!!

P4200008

We have a tradition of doing Easter with the Schlicher family….and you never know who will be there or if the food with be cooked thoroughly (this year the pork wasn’t quite done so we ate later then expected!)

This year we had a VERY special (fake) guest….LIAM HEMSWORTH showed up at our table!

But we missed Miss Carolyn and Simeon!!! Sad smile

But having to stare at Mr. Dreary Eyes through the meal certainly wasn’t a bad thing! Winking smile

Before church we were setting the table and Lena asked me in all seriousness, “Mommy, should I set a place [setting] for the fake person??”

Of course they don’t know that Mr. Hemsworth is Lissy’s dream future husband!

P4200009

Thankfully it was a BEAUTIFUL spring day….so everyone got to soak up some sunshine!

P4200017P4200021

We can’t wait for next year’s Easter dinner….wonder who will show up next year??

IMG_7245P4200029

It is good to know that girls never outgrow their Daddy’s lap! <3

Then it was time for Part 2 of the Easter celebration……Grandma and Co. showed up with LOTS AND LOTS of fun activities.

They made resurrection rolls

P4200032P4200036

Dipped peanut butter eggs and peeps!!!

P4200041IMG_6202

Sugar onto Sugar…Yum!

IMG_6203P4200049

They painted eggs…..

IMG_6212

And painted birdhouses!!!!

IMG_6239IMG_6242

Did I miss anything!?!?!  The girls were tired last night!!! Smile

Oh and don’t forget Boomer and Cricket!!! Grandma didn’t forget them either!

IMG_6215

Cricket is my sister’s dog…..and very much loved when she comes to visit!

P4200052

Daddy talks tough about Ava not getting a puppy…..but I have a feeling one will be coming sooner vs. later! Winking smile

P4200057

P4200059P4200060

She LOVES that dog…….

P4200063

And then the kids had fun just being together and blowing bubbles…..the simple things in life.

Lena on Gotcha Day 2009:

Lena bubbles Oct. 2009

Lena Easter Sunday, 2014

IMG_6257IMG_6264

So it was a special day full of memories that I will treasure forever…..

But the most special part was sharing in communion at church and remembering what Jesus did to pay for my sins on the cross.

And that He arose!

The tomb is empty.

He is alive!!

IMAG3154

Josie may not always remember to put her shirt on the correct way.

Or know what 4 + 4 is.

Or write her name correctly.

BUT she GETS what Easter is all about……that Jesus died on the cross for her.

And that is the most important thing in this life.

IMG_7274

Sure the egg hunt was fun.  And having yummy food in our bellies was delicious.

But remembering the sacrifice that happened on the cross is what really matters.

IMG_6271

He is alive!

Friday, April 18, 2014

In Christ Alone.

Crazy squirrel

When I saw this picture on someone’s FB post I laughed out loud.

There have been soooo many times when I’m talking to someone and we are going over dates to do something together, or just talking about life, and without fail the other person will say, “Well my schedule/life isn’t near as crazy as yours.”

And I cringe.

(and if you are one of the ones who have said that in the past…no worries!  It doesn’t upset me!)

It just makes me want to say, “Look, we are ALL busy and crazy in our own way.”

My crazy isn’t any different or more than yours.

God gave us each certain responsibilities in life.

And how we handle them and give Him the glory is what is important.

So yeah, of course I’m busy.  I have 6 kids going in 6 different directions.  And homeschooling on top of it all.

But it isn’t a competition!

As long as we are all relying on Christ ALONE and not trying to do it on our own strength we are all in the same boat!

In Christ Alone my hope is found!!

Here in the death of Christ I STAND.

Please take 4 minutes out of your crazy day and listen and remember what Christ did for us today.

http://youtu.be/OmGJ5WW5HEk

 

Thank God today for His son dying on the cross for your sins today.

And rejoice knowing that Easter Sunday that is coming!

Christ is Risen!

He is Risen indeed!!!!

Sunday, April 13, 2014

SUNSHINE!

This makes my heart happy!

P4120027

The deck furniture is ready to be relaxed and sat in!

(we had lunch on the deck yesterday!)

The sprinkler is watering the newly seeded grass!

And it is SUNNY and WARM!!!!

P4120014

But Josie said it best…..

IMAG3070

“I can FINALLY be outside!!!”

It has been a long cold winter! But spring is here.

The promise of new life.

But this past week has been hard though with facing what “new” life truly means for Josie.

Josie’s seizures are FINALLY under control! (Praise God!) BUT now that we are out of survival mode and not dealing with medical “emergencies” I was once again realizing, on a whole new level, this week that caring for her is going to be a LONG TERM thing.

Even though she is “better” she will never be able to live on her own.

Of course we “knew” this before but during the seizure phase we were just trying to survive and were living day to day.

And she was only really getting “settled” and acclimated to America and her new family when the seizures started.

But now reality is truly hitting me.  And it is a hard thing to process.

Now that she is “healthy” again I was struggling with the future and what it will look like.

Especially after she was telling me how she wants to move out and live on her own someday.

And how she can’t wait to drive when she is 16.

But those things will never be….unless God heals her from her cerebral palsy.

But last night I was reading in Beth Moore’s book, Believing God Day by Day and it was just what I needed to soothe my overwhelmed spirit.

God alone can give us the daily dose of grace not to grow bitter in a long-term battle. But Satan will do everything he can to try keeping us from receiving the grace God extends.”

Grace.

Daily doses of Grace is what I need.  And to guard against the overwhelming feelings I get when I think about the future.  To just live for today.

But I do need wisdom in knowing how to answer her so she isn’t discouraged but enabled.

She is dif-abled.

So instead of using the sidewalk chalk on the driveway like “typical” kids.

IMAG3075

IMAG3072IMAG3074

She gets to make designs on the side of our old, falling down barn.

And someday she may go and live in a group home, with a helper aide.

And maybe she will be an amazing Walmart greeter.

But whatever she does she will be doing exactly what God wants her to do.

To bring light into a dark world and speak volumes to others just by being who she is.

“Every effort we make to love sacrificially never fails to get the priority attention of God, to ultimately and undoubtedly be rewarded, and to have a profound effect either in the person we are trying to love or in the circumstance.

Or in us.”