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
                                        
 






 

Six Word Fridays: Leap, sometimes you must bravely jump.

Joining Six Word Fridays for the first time:





Sometimes you just have to leap,
Close your eyes and bravely jump,
Trust in the Lord of All,
To catch you should you fail.

Wild Horses-keep dragging me away AND setting me free

The family and I recently hiked a special land set aside for the few remaining herds of wild horses. And on our way back, after silent and spoken prayers to the Lord, we got to see two of these unbridled equine species. One coal colored and the other a coppery brown. We could see their long, uncared for manes and tails. They peacefully foraged the cliffs for grass since they somehow know winter is coming soon. And we were in awe at the view from our binoculars.

Here is a picture of the brown horse.

 And my sensitive, albeit quirky self (awareness) kicked in and I heard the Lord speak to my heart once again from his creation. It seems to be a thing with God and I. Maybe it is one of the easier ways God can get my attention.

Moving on...while admiring the horses' freedom and wildness it came to me:

We are all wild and free at the same time.

Okay, some of us have crazier manes or need a brushing more often (wink) yet, don't we all struggle with control? In some way? I desire to live free, but often my own unruliness places a saddle on me. One that God didn't create.

 And then, well this is hard to admit, but just as I am sure those wild horses would have bucked and kicked if we had attempted to ride them I know that I throw fits and kick when I feel controlled. 

Sometimes I like to rebel (against norms and people, not purposely against God). 

Yet, there's a certain freedom in the untamed life and I am not talking about disobedience, but living 

free, unhindered in Christ.  Where we relinquish ourselves from rules, and have-to's and pretenses...where realness & honesty are unhidden and it is safe to boldly go to God with every part of ourselves.

What if we did that?

Not just believing, but living truly free?    

Today. 

Where freedom is trusting God that we can dwell tangled and unkempt with him

and still be considered righteous.

We can forage peacefully, rest in His shelter (the cliff).

He wants us to.

 

Five-Minute Friday: Broken

He comes down the stairs heavy hearted with his head hanging as low as possible. He says, " I broke it." I know he was messing around and it is his fault, but God doesn't rub my mistakes in my face so I tell him, "Sometimes that happens...things break down."

No sooner do those words come out that my heart is heavy. 

I have one of those moments where God uses my own words to my son to speak to me: things break down... 

There are so many possessions that decay, but the deterioration of a relationship grieves me most. I think the withering started when I was child, but no matter how many times I tried to revive, reconcile or fix this relationship...God was wanting me to let it be broken. To give him this fractured connection.

A couple of years ago, I gave him this broken lineage with much trepidation because it felt foreign to let this remain broken-humanly speaking.  I can't convey words easily that explain how this giving away has been for me, but I know that the Lords got this and I will let things go, whether broken or not, to Him.

What broken things do you need to give to God?

Linking up happily today at Facebook with Lisa-Jo Baker! Go here to join the blog party!

Gratefulness, sickness and Free Will isn't an obstacle...

I'm gonna praise God first and then below you will see my Hannah (Biblical Sarah's nemesis) sized temper tantrum after that...

-God healed my friend's Placenta Abruption, but baby will probably be born early because my dear friend is already 3 cm and 90% effaced. Yet, baby is already 4.4 lbs at 32 weeks and healthy thus far. Praise! The Lord is carrying my friend and his creation.

-The Lord helped me finish my MOPS year strong...he continues to deeply change my perspective and patience on how waiting is good, trust shouldn't be an option and that as God is faithful so my faith deeps. Can I get a Hallelujah, amen?

And of course, my veggies are growing, I have two sweet boys, a hubby who treats me well and loves me, a home, and all my true needs met...shouldn't my praise never cease?

So why do I complain below? I am human and I love and care deeply.

NOW for my brattiness ( I don't care if that isn't a word):
                  -Someone in my family has had trouble getting pregnant and no one understands and well, they've told us that they have seen why God has made them wait, but I admit that I understand their struggle and now none of us get why they are waiting (2 years) and possibly longer. I want to see  them blessed with a child and I find my self begging God and teary-eyed for them.

I AM SO OVER SICKNESS and health issues that as I type this I role my eyes and question if I am a sitting duck since hubby has had the flu (one not covered with the vaccine) since Wed. night and I will get to enjoy this misery in a few days? UGH!!! Hubby had a 24 day headache that he just fixed only to be plagued by the flu, but he is in his second year as a teacher (all teachers are nodding in understanding right now).
   Hubby has seriously been sick, some of which was food-induced headaches and nausea since October. Nope, not kidding. Of course, may I add that I got sick and so did my kids over Christmas and it lasted a month for all of us with two of us on antibiotics?

 ********

Then, I realize how powerful prayer is...how life is just hard and why anyone wouldn't hand over at least some of life's hurdles to a loyal, loving God is beyond me. The fact that my friend and family member can still say (despite scary, hard stuff) God is good, still follow him and trust Him shows me that prayer and true faith is powerful. 

Then, I read about the Lord, and somehow, I come to this understanding that I have at times believed that prayer isn't as powerful as I think it is. What a lie! How can I believe that when I have seen 

it's power?

Oh, my heart and head are traders, thieves...

Then, God speaks to me and I admit that I know why I struggle and I feel his grace once again. My brother and dad...they haven't changed...actually my relationship with them and their choices have actually gotten worse, not better. That's it. I see impossible and I fly a kite called, doubt. 

Another whisper:

Free Will is not an obstacle for Me.

Somehow, I forget that although we always have a choice, that doesn't stop God from intervening or pursuing us. Think of Paul, God struck him with blindness (no choice there), but of course Paul had a choice to respond to God (free will). He could have ignored the flash of light on the road to  Damascus. Who says that God won't flash a light or "blind" my brother or father? Why do I limit God as if free will is some wall in God's way? Really, where do I get this false stuff ?

Mark 10:27 says, "With man this is impossible, but not with God, because nothing is impossible for God."

No. Thing. Is. Impossible. For.God!

I feel faith and hope increasing in my head and heart.

  


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In which I think I am ready to jump

My palms are sweaty, my heart's racing, while fear courses thru my heart and veins. There's never a moment that I think of jumping out into the sky...of letting it all go. He has strapped me to him. He has a parachute and so do I. He's got my life literally in his hands and well, he knows it is okay if we jump. Gulp. I don't desire it. I can't do it. He says I can. I don't want to, thank you.

Instead, I would rather be strapped to my chair until I touch ground. It's safer on the ground. My feet can touch and I have some control. 

To make matters worse, I have to jump twice. Um, yeah. Twice!

What if's run through my head. I ache. I am torn. What if I am hearing it all wrong? What if the jumping leads to injury that's permanent? One that I feel for sure I can't recover from. At least that's how it feels right now.

My first jump involves my first born child. He's five. School is looming. Decisions, deadlines, meetings, paperwork and defining choices hang in the air. Every inch I move toward the inevitable makes me ache. Like pushing through deep snow with a layer of ice on top each step stings. I've entertained home schooling, half-day kindergarten and we are signed up for popular schools with lottery systems.  I am not sure what is best for my child. Not entirely anyway. Some of of this I can't control and this is good. No control means God is in complete control.

This is what I really want.

 For God to be in control. Complete control. Here's my recent conversation, "God, you can go ahead and do all the work. You can go ahead and make the decisions for me. I will just sit back and be the chicken, wimpy mommy I am. Okay? Great."

        I also realize that not being ready to send my child off into the world without my hovering, without my protection isn't wrong. In my opinion, it is great. It makes me a loving mom. Okay, yes, I know eventually I have to let him grow up and grow away from me, but how long can I hold that off cause I only think I am ready to jump.

MY SECOND JUMP? It has more consequences than the first. Really!

It involves letting go of relationships where the two involved don't respect me. Where their selfishness gets in the way. They are volatile, unsafe and toxic. I mentioned in a post recently that I don't know why I hang on. This jump feels raw. It feels severe and yet, necessary. There is no point in keeping relationships with family or anyone where there is no reciprocating. Where investing only leads to more hurt, more agony. I haven't even spoken to one in over two years. 

I think I am ready to jump. I hold on tight as the wind of fear slaps me in all directions. God holds me close and whispers, "I know what is best for you and for your family. I hold a parachute of truth you can trust. Hold onto me, jump and I will catch you, always."

I close my eyes...

Your turn, is there some area of your life where you need to jump?

Happily linking up at Jen's Soli Deo Gloria