Friday, October 24, 2014

CP Sucks

We have a rule around here that you aren’t allowed to say something “sucks.”

It just doesn’t sound very nice coming out of a little girls mouth!

But with having big brothers (who aren’t perfect….can you believe that?!!?) you might still hear that word around here from time to time.

So why pick the title that I did???

Well, becuz this week I had a nice long chat with Miss Josie.


She has been moody and giving us (and her nurses and teachers) an attitude. You can just hear it in her tone of voice.

So I sat her down….and after she got through her bumbling, messy, not pretty cry fest she was actually able to put into words how she is feeling.

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(Now I still think that at least half of these issues are hormonal related. And the above picture was back from 2012….but the expressions haven’t changed.)

It boils down to: She is frustrated.

She is frustrated that her body doesn’t work the way the rest of ours do.

She is frustrated that school is getting hard and the things aren’t coming as “easy” as they were before.

(She is on a K level for math and a 1st grade level for reading to give you an idea of where she is at.)

But she tries soooo very hard. And she puts soooo much pressure on herself and hates when she gets things wrong.

So we talked about it and I told her that she shouldn’t get frustrated, that school is the place where she is to learn, if she knew everything she wouldn’t have to go to school.  (And since she loves school that made sense to her.)

And I told her that if she is frustrated she is to use her words and ask for help.  She should not start crying and giving people attitude.

She seemed to understand what I was trying to tell her.

And then I told her that if she gets really frustrated with her body that she should just say, “Having CP sucks.”

Becuz you know what?

It does.

So let’s just call it for what it is.

She smiled at that but then I reminded her that Jesus can heal her body.  But until He does we need to just keep plugging along and trying to accept these limitations.


It is really hard for her living with siblings that are all able-bodied.  She realizes and knows that her sisters have passed her in reading.  She knows that she just can’t do everything.  She wants to be able to run around with her sibs.  And some would say, “Well, just push her outside and let her watch.”

That is harder on her then if we have her do something she can do and enjoys doing.  (i.e. the ipad or building legos)

One part of this journey that is (very) hard is that everyone has an opinion or judges the way we do things.

Just this week her teacher flat out told me that she doesn’t agree with one of the decisions I made concerning Josie and the cafeteria line.

Well, you know what??

I’m her mom. So what I decide goes.

And then at Josie’s IEP meeting this week we were going over Josie’s goals and such (these meetings are so painful) and Mrs. Kline wanted to have Josie go to the “regular” 5th grade art class.  The whole “inclusion” idea.

Now imagine me sitting at a table with 3 therapists, a psychologist, Josie’s teacher and the SN coordinator from our home district….so lots of “experts” around little old Mom who doesn’t “know anything.”

Well. I kindly but boldly stated that I did not agree with this decision.  Josie already struggles with not being able to do what the other able-bodied kids are doing already.  She already puts so much pressure on herself and then for her to be pulled out of the class that she LOVES and can SHINE in to a class of “typical” 5th graders…that just wouldn't be helpful or good for Josie.

And you know what the “experts” said??

“Oh, wow, we didn’t think of it that way.”

“ That is a great point, I can see how it wouldn’t be healthy for her.”

“We agree with you, we will keep her in her lifeskill class fulltime.”

Why, thank you for agreeing with the woman who isn’t an “expert,” who doesn’t have the “degree” but just has some Mama instincts and some common sense to go along with it.

Still not everybody agrees with the decisions we make or the way we do things.

(And trust me, they let me know!)

But I know that I know that we make decisions and do things a certain way for the health of our WHOLE family unit. And also what is best for Josie.

For someone looking in from the outside it can look like Josie isn’t included in everything….and unfortunately it is impossible for her to be able to do everything the other kids can do. 

Is she sad that she can’t do it all?


It sucks.

But she knows that she gets to do different things and we make her special things, special.


And unfortunately it is something that she will have to come to terms with….

Unless God heals her soon!

Wednesday, October 22, 2014

Just when I thought….

she couldn’t get any cuter.


She goes and gets her first puppy cut.


But getting all prettied up is tiring I guess…..


all she wants to do it sleep this afternoon.

I wish I could join her.  It is so dreary here.  55 degrees and rainy.

She is the needed sunshine in my days.

If you are local I would highly recommend Funky Pup Grooming in E-town.

Tiffany was very nice and Willow came home smelling soooo good.

She is getting lots of snuggles, which is pretty normal…..


‘cuz who can resist this face?

Monday, October 20, 2014


So guess whose birthday it is today?!!?!


This guy.

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Logan turned fourteen years old as of 7:55 am this morning!

He was born, at home, after many painful hours of labor.  He was “supposed” to be “easy” as Jared took just 2 pushes and was came out to greet the world.  Easy-peesy (as far as labors go!)

But Logan decided to greet the world coming out face first.  He wanted to see where he was going. And I’m sure he was wondering what the world he would now eat, in this brand new world, as he was leaving his comfortable little womb which has a direct feeding line attached to him.

This boy does like to eat.

And he loves pineapple.  So for his birthday cake he asked me to make a pineapple upside down cake.


I had never made one before. 

And guess what?!?! 

He didn’t like it!!! lol

It called for almond extract so I think he didn’t like that flavor.  But Steve loved it and I had made a back up chocolate cake dessert just in case the pineapple cake flopped!

We had a fun and special day just lovin’ on Logan and celebrating his day.

(We celebrated last evening as it was easier being a Sunday night.)

His G & G couldn’t come over since they are off tripping through the US of A.  They checked off an item on their bucket list.  They have now been to ALL 50 states!!!  We are ready for them to come home though!

But Grandma had his present waiting for him to open.  And he loved his new computer gaming mouse!

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It is pretty sweet having big brothers who now have paying jobs and get you sweet birthday gifts!

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Travis had gotten a new phone a few months ago and decided to give Logan his old iphone 4S.

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Logan was shocked!

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Now that calls for a hug!

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Too bad it is just a “glorified” ipod as we don’t get the boys a cellphone line until they are 16.  But he is having fun with it and can get some of the apps and games he has been wanting.

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Uncle Persy and Aunt Joy had come over to take some pictures with the boys so they stayed for the party then which was quite fun and we laughed a lot!

On August 22nd they celebrated their 5th year wedding anniversary.  And they decided it would be fun to do “re-do” their wedding photos.

It was a fun thing to do….albeit it SOOO cold out!


My goodness how the boys have grown in 5 years!!!!!



And to think we have have added 3 more kids since the wedding!!?!?


We actually had received Lena’s referral the day before Joy and Brandon’s wedding.  We were supposed to be at rehearsal but we just couldn’t as we had to decide if we were going to accept the referral of a sweet little girl named Dang Shuang Shuang.  It wasn’t Li Li’s file so had some processing to do…..

Dear Steven & Lynnea,

Here is the information on Dang Shuang Shuang.  She was born on February 5, 2006, and has cerebral anoxia and infant cerebral palsy. Please look over her information and let me know if you would like to consider adding her to your family.

Dang Shuang Shuang 1

Boy, am I glad we said YES! <3


Logan has such a tender heart.  He would give you the shirt off his back if you needed it.

He is so sweet with his sisters and helps them a lot. 

He has really stepped up to the plate around here and has helped get the chores done, with Jared and Travis working and at school they just aren’t around as much to help.

And so Logan has been doing all the wood splitting, dishes and yard work, for the most part. And has done an amazing job.

It is no wonder he eats a lot.

He works a lot!

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And it is so hard for me to grasp that you will be 18 in four short years.

It just seems like yesterday you were snuggled on my nap, with your nuk, wanting to me to read Sheep in a Jeep again.  And again.

I love you sweetheart.

You will always be my little boy.  The one whom I prayed for and the one who God told me to name Jeremiah when I was bleeding and at risk of losing you during my pregnancy. It gave me comfort and peace and I knew God has a very special plan for your life!!!

 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11


Thursday, October 16, 2014

What my dog taught me today….

To be kind to those that annoy you.


I had caught Boomer “being kind” last week but today our nurse caught him and it melted both of our hearts.

Willow can still be (very) annoying.

(Albeit this week she has been on her best behavior and is more settled and not chewing everything in sight anymore!!! Knock on wood. Getting a puppy gate for the kitchen has helped too! Winking smile)

Boomer is very patient and tolerates her very well……but when she gets all excited and gets in his face he growls a little growl and then she rolls over on her back and submits.


But today when Boomer went to eat his lunch, he took a few pieces of his food and went over to Willow and dropped them right in front of her so she could have some.

(We have had to put Boomer’s food up on a pallet and 2 by 4’s as Willow kept sneaking his food. It is horrible looking but does the job!)

Then he went back and got a little more food in his mouth and went over to where Willow was and dropped some more for her.

It was the sweetest thing ever.

(I’m not kidding when I say he is THE perfect dog.)

After that Boomer went about finishing his meal as little dog was content and happy that he shared with her.

A little bit of kindness goes a long way.

And arriving at the destination of becoming best buddies shouldn’t be my goal for these two….it is the journey and memories being made getting there that counts.

“I’m still learning that the arrival is truly not the destination, that somehow the journey is the destination itself.”

Brandon Hatmaker in Interrupted.  If you want to be challenged and get even more messed up I encourage you to read this book. 

I’m guess you can teach an old dog new tricks.

Friday, October 10, 2014

Don’t let…..

the cuteness fool you.

She is rotten.


And getting into SO much trouble this week.


Of course I’m talking about Miss Willow.  Not Miss Ava.

Miss Ava is doing awesome. Smile

Willow on the other hand…Yes, I KNOW she is a puppy.

You don’t have to keep reminding me of it. (as everyone in my house is)

She chewed Ava’s shoe this week:


She also snuck into Josie’s room and stole our Nurse’s shoe and chewed it!!!!!

So if you are keeping track that would be TWO pair of shoes I’ve needed to replace this week alone.

She is under house arrest right now under she gets through this stage.


At least I hope it is a stage!

And of course I have gotten her MORE chewy toys.

Except Boomer promptly stole them and claimed them for himself!


Oh the life with a puppy.

It is a good thing she is cute.

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Wednesday, October 8, 2014

Why vs.Who

So lately I have been challenged by God (and through Susanna's heartfelt words) to stop focusing on all the “Why’s” of Josie’s needs and health problems and instead focus on WHO God is.

I’m asking God to continue to show me WHO He is.  (And be patient with me as I lay down my questions) And I’m trying to continue put my faith into action.

Even on the days when I feel I have no faith or hope left.

It is very easy to lose hope and to become jaded.  These past few months have just felt like it has been one obstacle, one more diagnosis, one more person/entity fighting against us. Over and over and over again.

The “day to day” things are stable….right now. But we have come face to face with the reality of how little help and programs are available for kids like Josie. And it has been eye opening.  And sad.

Josie’s future is so uncertain.  I know I’m only supposed to look at today and not worry about tomorrow.  But….there are a lot of things we need to practically work through and think ahead about as Josie gets heavier and bigger and continues to have some major health issues.

BUT yesterday I did receive a bit of good news.

When we were fighting for our nursing hours to be re-instated, one of the steps was that an external review company reviews all the facts in the case and then they make a decision based on what is presented to them. We submitted TONS of documentation, as did the insurance company.  And then whatever this review company decides is what goes. So either we would “lose” or we would win and the insurance company would then have to abide by the decision.


Yesterday I received their decision and WE WON!!!!!

Which made everything I did and fought for feel worth it.

(It is a mute issue at the moment as Josie’s insurance company has already admitted they were wrong and re-instated our hours 2 weeks ago.  BUT the new approval is only good till March. So of course we will have to fight again for our hours in the future but now if they give me any problems, I’m told by the lawyer that helped me with the external review, that I just need to send them this 6 page report and it will carry much weight!!!)


Now maybe God will heal Josie by then and we won’t need nursing anymore…..but she continues to have seizures and have new weird symptoms.  It just never ends and is always something. 

Now she has episodes where her lips turn purple and she is shaking….like she isn’t getting enough oxygen.

I have felt like Job a lot lately.

And I have felt at times that God has been “out to get” us.

And I have been quite honest with God and let him know my thoughts and frustrations. (Which is pretty funny as He already knew….but just in case! lol)

I “know” in my heart that my God isn’t a God that is hurtful or mean. I “know” He isn’t out to get me. But the day to day struggles and stress that our family has felt with all of Josie’s health issues have totally worn me down and made me question why we were called to adopt her.

But  instead of focusing so much on the “why us” question, I’m trying to remember and focus on WHO God is.

He is kind.

He is in control.

He is patient.

He is a healer.

He is loving.

He is good.

My devotional today was so timely:

“Job was a righteous man who, from a human perspective, did not deserve to suffer. He lived a blameless life and followed God’s laws to the letter. As he was experiencing great tribulation, Job cried out in frustration and questioned why God was allowing him to suffer.

God came to Job in the form of a whirlwind with His answer and asked him several sobering questions:

“Where were you when I laid the foundation of the earth?

Where were you when I set the oceans in their place?

Where were you when I put the constellations of stars in position??”

God’s questions humbled Job and reminded him that his own wisdom did not begin to compare with God’s.

At times you may not understand why a loving Father would allow you to suffer as you are. Learn from Job. Remember the awesome power and wisdom of Almighty God.

Have confidence that this same God is directing your path.

(Excerpts taken from: Experiencing God Day by Day)


“Hey Soul? Those places you're feeling empty?

Those formless places in you, your family, your week --
"In the beginning ... the earth was formless and empty, darkness was over the surface of the deep, & the Spirit of God was hovering over..." Genesis 1:1-2
Where your hopes haven't happened yet -- the Spirit of God hovers now.

Where it's dark & it's deep, Your Divine Helper hovers close.

Where it's formless, it's not hopeless, because you have a Father who hovers near, His love spread over you like wings.

Hope holds you, your breaking heart together.” Ann Voskamp


Sunday, October 5, 2014

You might be a redneck…..

If you use a shotgun and carburetor cleaner to get rid of a hornets nest!


Steve just happened to look up the other day and saw this big nest hanging on a little branch high up in the tree right at our deck.


So we took a vote and decided the best way to get rid of such a nuisance was to shoot it down.






And then run like little girls back into the house as fast as you can. Winking smile


I did scream as the boys came tearing back into the house as I thought they were being chased by hornets.

But it was pretty cold out and there wasn’t many left in the nest.

Steve had a direct hit and the nest landed right on the wicker chair!

(So thankful we got it down in a “controlled” manner and it just didn’t fall on top of someone while they were sitting in the chair!  That would have be horrible!!!)



There were still some hornets alive though so the boys got it in the fire pit and we torched it.


What we do for entertainment!

(oh and the pictures and video are for you Dan F! Winking smile)


Thankfully no one got stung in this adventure and the nest is safely down.

I think  (based on a quick google search) we had baldfaced hornets: