A leap of Faith

My heart is overflowing, and my mind is exploding... 

I sit here in the vastness of our creator, and I am in complete awe that he choose me for this journey in life.

 Me? Why me?

 I ponder this often- not for any negative reasons or impulses you might be quick to think of,

 but questioning "WHY ME", because of the vast blessings and life changes He has sent my way.

"Why do I deserve to have this abundant, blessing overflowing life?" 

"Why am I the one that gets to see God's hand work in and around my life, day in and day out, time and time again?"

I don't deserve it. I know I don't deserve to be where I am today...  but by God's AMAZING grace- 

I am here. 

I am alive. 

and by nothing but His saving grace- 

I have a Christ Filled Journey ahead....

What has set me off this time you may wonder?!? 

Well, I have to be honest with you... at first- I did not want to tell anyone... I wanted to go- see God's hand work, then come back home, proclaim God's Glory, and tell everyone how wonderful He was... 

Yeah- pathetic... I know...  

But wouldn't that be simpler?

 Wouldn't it be easy just to tell everyone about the positive results, and not have to face the negative relm, if there is any?

 Isn't it easier to go do something, then tell others about it after you return- 

just incase it does not work out?

 Have you ever experienced this?!? 

BUT- I simply can not do that. I can not keep this to my-self.

 I have to tell..

 I have to share...

God is tugging at my heart strings, telling me to proclaim His good works.

 He is leading me to share this journey with everyone. 

It is scary. Very scary....

I am laying my heart out on the line. I am opening up and sharing with you a very personal leap of faith.... 

Rejection, I do not like rejection-

but I embrace the comfort in knowing this journey is from God.

He knows. 

These next few months are all but a glimmer of sunlight in His eyes. 

He KNOWS- 

He is the Alpha and Omega, the beginning and the end. 

SO WHAT IS IT?!?  

A leap of faith. 

A long airplane ride. 

A stand in Christ. 

A tip to a foreign country. 

A journey to a land far away.  

An adventure that will bring healing and health to my daughters, and to my family.  

IT IS: 

A trip to El Salvador.

Yes- El Salvador. 

as in the country SOUTH of Mexico. 

WHY?

Because God is calling us there....

He has opened the opportunity for us to accompany friends that are natives of the country, to seek healing for our daughters. 

We have known about this for the past few years. 

The opportunity has always been there, 

but we have NEVER felt a calling/ peace to act upon it. 

UNTIL recently....

We have feverently prayed for peace... 

Prayed for clear direction... 

We have prayed God would provide a way for us to go... 

and we now are on our way.

Do I understand?

NO! 

Can I explain everything? 

NO! 

In fact, 

I probably sound like a crazy person... 

Who WANTS to leave 3 children behind for 2+ weeks? 

Who WANTS to go to a country that is on the verge of another civil war?

Who WANTS to accept the financial ramifications of flying across the country? 

Ummm... Not me! - I don't want any of that...

BUT- I do want to be obedient to God's calling...

I yearn to be a ship at sea- guided by his wind and waves... 

I want to see the goodness He has in store for my family....

So therefore- 

WE GO- 

It will be the 4 of us: Casey, Denalli, Ryka and I. 

We will fly out on Christmas day. 

Casey will fly back after 1 week or so. 

Natosha, Denalli and Ryka will stay in El Salvador until January 11th.

Then, Natosha will fly back into SLC with Denalli and Ryka.

January 13th- Ryka will have her Trial Study Check up in SLC.  

then POSSIBLY- Denalli will start her Drug Trial Study again- which could potentially take another 2+ weeks in SLC.... (by the way- the FDA gave the "green light" go ahead on the ISIS Drug... PRAISE THE LORD!!!!!! Now we have to wait for a few more approvals of the study, then we will be notified when Denalli can be re-injected with the drug. Thank you JESUS~) 

THEN WE WILL COME HOME.... 

The mama and the 2 girls could potentially be gone anywhere from 3 weeks to over 1 month... 

MY, OH MY........

Am I ready for this?!? 

NO!

 - Not yet at least. 

I do have peace... please don't get me wrong. 

I know in my heart, this is the journey we are ment to travel.....

but my head and my heart are fighting once again... 

I don't know how to get past the ache that I feel, when I think about leaving my kids. 

Especially when I think about leaving them for such an extended period of time...

I pray they will understand... 

I pray they will not grow bitter... 

I pray God's Grace will surround them....

I pray. 

I am thankful. 

I am blessed beyond measure... 

-Jesus Calling for Kids by Sarah Young- 

"Think of your life as an adventure, with Me as your Guide and Companion. Don't worry about where our path will lead tomorrow - just live in the adventure of today. Keep your mind on staying close to Me." 

Reality is setting in...

Trying to put into words the emotions and thoughts that run through my mind and body, is like trying to capture the ocean in a bottle. I have so much I want to express, but it seems like I can't  get the words to come in the right way, so bear with me....

Fact is: Ryka has SMA- yes we know this, but now I am SEEING this in day to day activities...

I have again learned first hand- that knowing and seeing- are two completely different things.

I knew this day would come. I knew it was going to be hard. But, I was not prepared for the emotions and feelings it has re-created and brought back to life.

Seeing my little girl struggle at 9 months old is gut wrenching. Talking with a friends about their children that are 1-2 months younger than Ryka, is heart wrenching. I have to turn away with tears in my eyes when they tell me that their baby was crawling at 6 months and now their babies are all over the place and getting into things. My baby - at 9 months old-  struggles to reach forward, grab a toy and sit back up. It is all still so raw right now. It's like having the diagnosis all over again. When the tears come, it's not that I am un-happy for other babies, quite opposite really- I am thrilled their babies are able to do all the normal things, it's just that I ache to see my baby do the same. And then the ache in my heart is intensified when I realize yet again- her life with SMA will not allow that. It will not allow her to freely move- get into things, and explore her environment. Oh, it is so-so hard.

Before Denalli was diagnosed, the Dr. told me over and over that she was a "lazy baby". I wanted to scream in his face and tell him she was anything BUT a lazy baby. The determination and frustration in her eyes spoke volumes to me. She wanted to go, she wanted to move, to stand, to crawl, to get across the room-but she simply couldn't.... Now-5 years later- I see that same determination and frustration in Ryka's eyes. And let me tell you- it was hard to see the first time, but to see it again.... I have no words, just the ache in my heart. 

October 24th was D-day for Denalli. I always wondered what 5 years with SMA would look like. Five years of living and thriving with SMA. Pretty sure, my picture of 5 years down the road of "then", is nothing of what "now" is like. I hoped and prayed for a healthy 6 yr old little girl, and I have that. Casey and I prayed God would bless us with more children free from SMA-we have three beautiful, amazing, healthy kids, with out SMA! Then our hearts were set on adoption. We felt God had a big adventure ahead of us. We started getting the house ready, and setting dates to begin the adoption process... Then we quickly learned that once again- God had different plans for our lives. His big adventure for us, was not adoption at this time, but a blessing by the name of Ryka Kathleen. 

Ryka is a HUGE blessing in our lives. When she is with me- she is one of the most happiest babies in the world. Her big, big smile lights up every room we walk into. My mind knows everything will be okay, but my heart just needs to catch up. And it will... I know it will. There will be a day, when I can accept this journey I have ahead of me- without a tear in my eye... but not today. 

I will smile because of the beautiful life that has been given to us. 

 I will cherish the moments- like the one pictured of her just waking up from her nap and coming into the light- showing off her "squinty face". 

I will hold onto the memories of seeing this beautiful little smile every time she wakes up from a nap. 

 The determination and strength in her big blue eyes will keep me focused and fighting for the things that she needs. 

And my dearest Denalli will help me fight for her and pave the way to a better life and future for both of them. 

We will NEVER GIVE UP. 

An evening in the saddle- (An older post that never got published...)

How blessed we are to live the life we do! Here are some fun pics of this summer when we were able to saddle up the horses and go out for a family ride. Sorry for the delay in posting this... Hope you enjoy seeing pics of green grass and sunny days! :) 

 Denalli, her baby, and Casey on "chris". Chris is a colt that Casey trained last winter... she turned out to be such a jem! At the end of the ride, Denalli informed us that her baby "liked it very much!!". 

Here I am with Denalli and our trusty old steed- Cisco. The wind was blowing, the grass was green, and it smelled heavenly!
 Fun fact: This wonderful horse carried me to the wedding alter! (~love him so very much~)  

 Snickers brings nothing but smiles and giggles to the little cowboy and cowgirl. Our friends gave us Snickers last summer, and the kids enjoyed her SO SO much! She was especially good for Denalli. Snickers' stride was shorter than a big horse, and Denalli was able to hold on better and ride with confidence. But, unfortunately; Snickers passed away- due to the winter storm "atlas" that came at the beginning of October. Our hearts are sad for the loss of such a good little pony... 

 My little pebbles always has smiles for the camera. She really enjoys her saddle time and can't wait to take off on her own. I can though... boy how the days fly by! It seems like yesterday it only took 2 horses to go on a "family ride"... Now we are all doubled up or tripled up when it comes to a "family ride"! Casey just got done training 2 colts this last winter (Chris being one of them), but he had better keep going and get another couple more a-goin' to satisfy the little cowboy and cowgirls coming up!!



 Such fun times! Thank-you Lord for the life that we are able to live! 

Rykas Giggles- Laughing away SMA

Hello! Lots to say and share, but not enough time to get it all in. So for now, enjoy my happy little baby that is full of joy-giggles-and sweetness!  

SHARE the video- Lets laugh away SMA- Help CURE SMA and keep the Giggles Coming!

Participate - Donate - MAKE A DIFFERENCE

Tomorrow will be the third annual 5K to CURE SMA. This year we are raising funds for the Gwendolyn Strong Foundation. (www.theGSF.org) 

Denalli requests that you come out and support this event. Denalli herself will be racing in her power-chair and Ryka will be pushed in a stroller. 

Look at her GO!

Why not participate?!? YOU have the opportunity/privilege to WALK or RUN! 

Why not show YOU care about THOUSANDS of other kids that will never have the chance, the opportunity or strength to walk or stand on their own? 

What a HUGE gift you have. You CAN WALK! 

5K=3Miles

 Walking 3 Miles=1 HOUR

1HOUR= changing the LIVES of so many!

 Participate- Donate- MAKE A DIFFERENCE

See you tomorrow: 7:30am at the Durkee Lake Boat Dock. 


BE THERE! 

A little bit of Fun

So a while ago, a kind friend let me borrow her Maxi dress to wear to a special occasion. (Thanks again Megs!!)  Before that day, I had never worn a maxi dress, or even been remotely interested in EVER wearing a maxi dress... or ever thought about the slightest possibility of me trying on a Maxi dress... Why was I so opposed to a Maxi dress?!? I do not know. Now that I have experienced the comfort and goodness of a maxi dress, (and put my boots and jeans in the closet for the day) I just can't seem to get enough of them! :)

Here is a picture of the original dress. (and my chunky little 5 month old...)  After wearing the dress, and falling in love with it, my gracious friend let me pack it up and take it home with me. I wanted so bad to re-create another one just like it.

When I got back home, I quickly realized I did not have the fabric that I needed to make the maxi dress I had in mind.... (insert very sad face) Thats when another friend came to the rescue, and gave me some fabric that she had in her "stash busting pile". The fabric that she gave me just happened to be my favorite color (purple) and it was PERFECT for the project ahead. YAY for me (and her!)!! So, with scisors in hand, I carefully laid out the fabric and the dress,  and started cutting and sewing away. After an evenings' worth of work, this is what I was able to re-create: 

I absolutely LOVE it!! I'll have to make a few minor adjustments to the next one I make, but in all, I think it turned out just right! 

I LOVE the feel and the movement of the fabric. Also, it isn't very often I get to wear something that fits me in the waist AND length. So FUN!!  

It seems to work very well as my "mama hippie dress"... My little boy seems approve too, as he compliments me every time I have it on. :) 

What are your thoughts? 

I say: 

Cheers to good friends and great Maxi dress' :) 

SPINAL MUSCULAR ATROPHY AWARENESS MONTH

Thats right folks, August is SMA Awareness Month! What does this mean? This means we need to rally together to let the world know about SMA, so that the horrible disease can be cured, kids can be helped, babies can be saved, and long futures can be a possibility.

Seriously people, this disease is so scary and so devastating. Just a yesterday, I was sharply reminded  yet again, how fragile and weak SMA has made my little miss Denalli... I know that that she is unable to walk, I understand that she can not bear weight, lift heavy things, take caps off of most markers, wash her own hair, wite with a pencil, dress herself, get out of bed, pour syrup on her pancake, climb up on the couch, swing in a normal swing, cut her food, put her shoes on, go the restroom alone, or run across the room to snuggle up on my lap and give me a hug. Yes, I get it... she is fragile. And yet, every time I see something else that SMA has stolen away, my heart aches, my soul aches, and all I want is for her to STOP GETTING WORSE >>>

Yesterday, I walked into the living room where Denalli was sitting on the floor watching a movie. I had Ryka on my hip, and needed the Wii remote that was laying beside her, so I asked her to hand me. She eagerly grabbed the remote with both hands, then with all her might she struggled and struggled some more to get it into my outstretched hand. 

At first I was impatient with her because for a fleeting moment it seamed like she was stalling, but then I quickly realized she was serriously STRUGGLING to lift the remote above her head. For a moment, I just stood there, unable to say anything, with a flood of tears burning behind my eyes. My mind was screaming, "NO, She is strong than that.. it is just a wii remote... ". I then reached down, supported her little hand and helped her lift the remote high in the air. "uhg, thanks mom", she said with a sincere smile, "that was heavy...".

I quickly thanked her then left the room to let the flood of angry tears and frustration go. I really do try not to let her see my heartaches of wanting "normalcy". To her, life is great and a wii remote is "really heavy".  After a while, curiosity got to me, so I grabbed the wii remote and went and put it on my baby scale... Do you know how much a wii remote weighs?!? To be exact, our wii remote weighs .36 pounds or 5.76 ounces, or simply put- it weighs less than 1/2 a pound... Because of this genetic disorder and because God has a plan for her life, Miss Denalli- at almost 6 years old- struggles to get 5.76 ounces above her head... And in all reality- and she is considered STRONG in the SMA world!!! The little episode that tears my heart in two, is so minimal compared to many other SMA families. A lot of SMA parents never even get to see their child sitting on the floor by themselves watching a movie....  

Wow, perspective is everything isn't it?!?!  

So, like I said before- we have to get the word out about SMA. We have to let the world know that this disease is SOOOO close to a cure and that they can help get the cure here faster too. It is incredible what the drug therapy has done for Denalli. I would absolutely hate to see what SMA would have taken away from her if we were not involved in the drug trial study. We are so blessed to be right where we are today. I just have to continue to remember that everyones' days are numbered, moments are precious and God's plan is everlasting!  

~Thanks for stopping by~