EDS: Ehlers Danlos Syndrome-What you talkin' about Willis?

Both my husband and son have been diagnosed with a once thought rare condition called Ehlers Danlos Syndrome or EDS for short. I have to share this story because MANY people have it and do not even know it. They need to know what it is since it can be debilitating and even deadly...

 Around the age of four, I noticed my son's ankles. They drooped in towards each other. It looked bizarro, and wrong, so at age 6, I finally took him to the doctor. And she referred him to a pediatric orthopedic. I figured this doctor would look at his ankles, measure his height, ya know, go through the typical procedures and routine. Then, offer us an explanation and a solution. Uh, nope. Bigger deal than weird ankles.

She looked at him from head to toe. Asked a billion questions and then preceded to tell me, "Your son has Scolios and I am recommending he be checked by a geneticist for EDS." ...Silence, confusion...huh? Say what? 
 She let me know (very respectfully and gently) what in the world EDS was and the concerns and the best place to get information. We took an x-ray of his back and it confirmed the Scolios. We had to go get his feet molded for inserts he will have to wear for the rest of his life. 

Before I tell you what EDS is in case you don't know, I will be honest...I was shocked, wanted to panic/worry, and melt into a puddle on the floor, but I kept it together long enough to break down a bit at home. Then, after much prayer and with renewed strength/faith in the Lord, I was on a mission to help my sweet boy!

Ehlers Danlos Syndrome is a genetically inherited disease that effects all connective tissues, think joints/tendons, etc. Those who have the disease don't produce collagen so their joints are very loose. There are 6 major types and my son and husband (who passed on the syndrome) have Hyper-mobility Type. This means they can do cool party tricks with their body (think double-jointed which is actually what EDS is). 
On a serious note, it really means a life time of fighting your body! It can cause random pain, chronic pain, dislocations, trapped and or stretched nerves, sprains/strains and muscle tears as well as other physical problems to the point of not being able to use parts of their bodies. One can injure themselves just through ordinary activities.  EDS has been called the invisible disease and here is why...

What is really hard is that those with EDS look normal and healthy on the outside so people have acted like my family is making this up and many doctors have misdiagnosed my husband, ignored the diagnosis or worse told us it was "all in our heads."

However, many people have believed us and been supportive and that is huge when you are facing something daunting like a diagnosis.  
Sometimes it is hard to swallow the blows of living in a fallen, imperfect world, but I am finding that as I have placed this crazy EDS in God's hands, I have been better at supporting, advocating and being compassionate towards my husband and son. This answer, although not one any of us want, has brought so much understanding to past peculiar injuries and physical problems my husband has had in the past. 

I know God is carrying my family gently through each day, week and month that EDS makes itself known that it is still there. The greatest reaction I can have is giving every part of this to our Lord Jesus and in return he meets me right where I am...and yet, where I am moves and changes...my respect, my reverie, my understanding who he really is grows.
  
To learn more about Ehlers Danlos Syndrom go to Edsawareness.com 
and or  www.ednf.org

Happily linking up with Jen and other sweet sisters at  http://www.findingheaventoday.com/p/about-soli-deo-gloria.html
                                        
 






 

Challenge(s)

Write a post inspired by the word: challenge

Once again, I find myself baffled and challenged to help my husband figure out which bazillionth, stupid thing is causing his headache, nausea and weird shaking. And no, it isn't coffee.

The challenge doesn't just come in the mystery trigger, but also in the shopping, planning, preparing, and cooking of meals. I am the grocery CEO and chef so the burden of managing this portion of our lives has fallen so kindly on me. And I am tired. I have days where I hate food.

For roughly two years, we have been creating a color-coded, beautifully crafted spread sheet of what food items cause awful symptoms. This includes a dinner menu, slash grocery list so wifey here doesn't kill her hubby with food.
    My spouse (the sweet, special one) has food allergies to oats, chocolate (that is SO wrong), many preservatives and is gluten-intolerant so cooking is rarely ever convenient. If food comes in any packaged, boxed, or canned form, it must be inspected, scrutinized, analyzed, criticized, and often snubbed. 
If you need a vegan, vegetarian, gluten-free, raw, or grain-free recipe-I'm sure I have one. 

Yet, there is more to this story than frustration... 

 I have risen to these challenges. We eat more whole foods in there natural state and we all feel better. Not that we never eat junk food.  I have just had to learn to look at food differently, have had to cook more items from scratch and it does taste better, but most importantly...

  
I have found God faithful as always...providing strength and ingenuity. I have grown immensely in planning, organizing and executing in ways I did not before and my compassion, patience and gratefulness have deepened for my husband. I find myself getting better at serving others instead of myself. I know that is because of God's work in my family and in me. 

Changing because of God's doing is always beautiful, but more often than not-painful. I have had to hand over a TON of insanity-sick-of-it moments, but God has exchanged these with periods of peace, joy, laughter and bonding. So even though I still sometimes loathe dealing with food, I know that this is more about his work in my family and me and less about the food.  

 P.S. I will always miss the convenience of eating out. It is rarer these days and yes, I know that is a spoiled luxury we have in this country.

Linking up at : MamaKats 

Don't ever post pictures of your kids! Here's why...

About 6 months ago, I noticed a pattern on my blog statistics...I was looking at who was reading and following my blog. Discovering a certain follower who seemed to target my posts that ONLY had pictures of my children on it, I became alarmed.
 So I prayed and gave it some time because I am capable of jumping to conclusions without evidence and sometimes truth.

Sure enough, I saw God lead me to another post about stalkers (unfortunately, I have had one)...well, this blogger's post was actually about blog stalkers, however, it brought to my attention something I had never thought about. Silly, perhaps, but I realized how naive or thoughtless I can be about the internet even though I know that anything put out in cyber space is usually permanent. Ugh!

I conducted an experiment on my blog.  I took off all the pictures I could find of my children and EVEN ones of me that showed more of me (not that I post scantily clad pictures of myself anywhere).
Did you guess it? That follower quit following me! Hmmm, seems a bit suspicious to me.

During this process a question came to mind..."Should I really be posting pictures of my children on my blog?" It isn't as if they gave me permission. And, well, we live in an ever growing perverse world where access to people's private lives is so easily attained with a click of a button.

 It is your choice, but I urge you to reconsider giving anyone the temptation to use your pictures for their impure, unholy choice of pleasure!

*I also deleted a lot of images from my social media page even though that has some limitations to access and privacy I can set compared to my blog. 

Linking up here: http://www.solideogloriasisterhood.com/

Writer's Workshop...defining emotions in pictures...

Thank goodness for Kat Bouska's Writing Workshop...let's just say my motivation for blog writing lately has been practically zilch.
Want to join the movement? Follow it all @ Mama's Losin It

Prompt #2...Define goodness...joy...sorrow...and anger in pictures I have taken.

Goodness.

Strawberry ice cream popsicle? Goodness.

JOY

Maybe you're thinking how in the world is the below picture joy?

Well...because my house is filled with Star Wars!
Okay, yes that is joyful, but really what brings me joy is the gift of my two sons who just happen to like Star Wars as much as me!

Sorrow

The grass is crying.

All by itself.

A lonely place indeed.

That's how sorrow has been for me, a lonely place.

Anger

"He had it coming."

This really only covers a few of my emotions ya know, but that is another post for another day.

Somewhere between Sheltering and Exposing

"Aren't we supposed to be in the world...just not of it?"
"Yes, we are, but..."
"You can't shelter your kids too much, we all have to face the world at some point."
"True. but..."

When do you know the line between sheltering or exposing too much? Who wrote the rules that said I need to throw my kids to the wolves/the world if I want them to grow up healthy, normal, socialized and so they won't resent me later or run away screaming at the age of 18?

 I home school my kids. I am that mom, but this is not a post to convince you to do it and I am not going to whine about my rights.

It is just lately, I have felt uneasy. Not because I am second guessing that God called me to do this for my children at the moment, but because my feathers have been ruffled, so to speak (see conversation above). I don't shy away completely from opposing thoughts. However, my mind gets pinched with doubt. I am great at doubting myself which is why I have to be really intentional at getting hard tasks, etc. accomplished. Since this person challenged me, my thoughts have lingered to questioning if it is less about home schooling versus public school (and it is) and more about fear.

See, I want to be somewhere between sheltering and exposing...balancing...That. Can. Wait. You will learn it soon enough coupled with what do you do when? If ? Can my children be polite, but powerful when they need to stand up for themselves or others?
Yet, my greatest desire is the opportunity to preserve the child in my children a bit longer more than seeing how they do when they fall.

 Roll your eyes, but 

it comes from the fact that before the age of 8, I was super-overexposed to  

sex, adult content, very disturbing/scary images and movies. I was abused by family members and friends of my family and I was blamed! Yes, you read that right.

Perhaps, I am only fueled by fear. Sure, I won't deny it. Yes, I am sometimes guilty of being over-protective. Yet, I know I need to loosen the reigns each year as they grow from little boys, to big boys to young men. Both of my sons need to fail, they need to problem solve on their own and think for themselves. They need to be challenged and tempted.

I know it is a trust issue. I was so mistreated that I fear the breaking of 

their hearts and the aftermath that comes with it. How it destroys innocence and trust. 

I need to trust God with them...with me...knowing he gave them to me...He chose me to be their mom and no matter how I may fail them, he will redeem it. His plans and purposes for them will not be thwarted.

Happily linking up here today for some authentic sister hood:

Why I vaccinated my children

I really believe that if my Mamaw (name for my grandma) had the choice to vaccinate my uncle from Polio, she would have, but she didn't have that choice and he died at the age of 5.

Her story is a huge reason that I chose to vaccinate my children...

Have you noticed the new trend to not vaccinate children? Like breastfeeding, our culture is shifting its values. Some people are misinformed and have been lied to about vaccinations.
It is the parent's choice-well, at least for now.
I believe in the freedom our country gives us and the right to choose what is best for the health of our children, but not vaccinating scares me. 

I am not writing this to judge anyone, again-it is your choice. 

However, there are some really important aspects to consider when deciding to vaccinate or not...

1. Vaccinations eradicated small pox and practically banished other deadly diseases from our planet. What a major break through for our world!  

2. If someone from another country comes to ours with measles, mumps, whooping cough, etc. And your child or you are not vaccinated, you both will have a greater chance of getting it!!!

3. Many of those diseases have, can and will take the lives of those who are not protected by vaccines.

4. Vaccines can be spread out through the course of a child's life to make it safer for them and those whose body might not be able to handle so many germs all at once.

To me vaccination is NOT a conspiracy by the government as a way to control us...if any thing, it is a way to protect us! 

Who wants another plague after all?

Silence is Golden

Sing with me if you know the song...

"Silence is golden, golden."

I grew up hearing this song when my mother was chasing away the chaotic atmosphere and again when in that rare occasion-she experienced actual silence. 

She sung it sarcastically when she couldn't fix the crazy times of life. She sung it sincerely with a hint of humor when the house was actually quiet.

Now, I am finding I do the same thing. I have sung the same words to my husband as our two sons are playing louder than a room full of cawing crows. It is hard to converse when they are so noisy. Harder to concentrate. I often long for a moment to speak without interruption or an opportunity to be alone with my thoughts...drift in dream land.

Yet-sometimes the silence scares me. 

 A part of me knows that there will be more silence then I care for when the boys are grown up and leave our home. And I loathed the times when I was by myself with my grieving heart after my mom died 8 years ago.

Perhaps, silence is not always golden.

Leprechaun Trap...rats, we didn't catch him!

We thought our trap was fool proof! Surely, the little person couldn't escape? I mean, we put a false path and he fell in a hold, was trapped in a box with no way to escape, right?

See the false path? The big clover and sequins are disguising the hole.

My boys wanted to finally see a leprechaun. I don't have the heart to tell them the truth yet. I know it is lying, but they are little only once...only vivid imaginations and make-believe for so long.
PERHAPS, if they hadn't set up a party for the leprechaun, who brought reinforcements (friends that is) then we would have caught one...finally!

Well, here is what happened instead of catching the wee, green people...

His vest and hair got left behind, we received a letter and a package that was a green treat (Pistachio pudding).

And he turned our milk green!!

Well, maybe next year. Either way, we had fun learning about Ireland and all the legends, myths surrounding St. Patrick's Day.   

First 2015 Post on...My Unique Friendships

I have a confession to make, not all of my friendships are equal. I am sure I will get an unhappy text for writing this, but there are some friends who will probably never reach the best friend status. It isn’t their fault. They may bear a different label, but I can’t live without them.

             

       The No-pressure friend. I bet you have one too. This is the kind of friend who doesn’t see you for at least a month or maybe a year, but doesn’t mind playing catch up. I have several friends who moved to this category without asking because we live so far away from each other, but I look forward to our long banters over the phone. I still feel loved and supported and in the end I cherish every one of them.

             

       The Play-Date Friend. I only get to hang out with this gal pal when we can get our kids together. We often meet at a park after texting all the information of when and where to connect. We weave our conversation in and out of distractions or interruptions such as when our children need a snack or want help swinging on the monkey bars. We may struggle to bond at times, but more importantly, we call each other friend.

The New Friend.  This comrade is similar to dating. It has the potential for more or it can cause a speedy trip to the nearest hiding place while repeatedly whispering, “What was I thinking?” While the process and time it takes to move a relationship from stranger to acquaintance to friend can be awkward and perhaps even painful, it is without a doubt a relationship full of hope. And she doesn’t know the real me yet!

The Wipe your Nose, Childhood Friend. Yes, you read that right. I might be the only one who possesses this kind of friend. Her name is Viviane. That’s all I am going to personally divulge about her because she has dirt, LOTS of dirt on me. I met her when we were 13 and in the 27 years and counting, we have witnessed each other graduate, date boys we shouldn’t have, attend college, discover truths about ourselves(whether we will admit them or not), get married, have children and learn to trust God even when it is most difficult.  And yes, she wiped my nose during my mom’s funeral. I know. Can you believe she did that for me? Really, she is family and I am barely scratching the surface of what makes her so special. I cannot and refuse to imagine my life without her.

Even though these relationships are less than perfect, even strained at times, I am grateful for them. Better to have any of the above friends then no friends or worse...only fair or foul-weathered friends-those are friends I can live without!