The Storm

I won't give you more, more then you can take

and I might let you bend, but I won't let you break

Listen here... Group One Crew, "He Said"


This is the promise I am clinging to today. I heard these lyrics in the car this morning--one of those times when I've heard the song a million times before but never really listened to the words. Now between the teary blur of these typed lines, I think this may just be my motto for the next three weeks.

So much has been going on lately... I don't know how to even put my mush of thoughts into words. People want updates on Sy and I love that--so many folks rooting for him! But if you ask me how he is doing, I'll probably just smile and say that all is well... but in reality, I don't know. I have no idea really.

I see the joy in his eyes when he tastes a new food but am so perplexed when he complains of stomach pain, has a bout of eczema, or just has an emotional breakdown. His spirit is different these days--very sensitive and struggling. We realize this may be a healing reaction, or a blood sugar issue, or just years of his little body fighting and it's all catching up with him. He has also dropped significant weight. I know that God definitely led us to this therapy and we still haven't been able to jump in full-swing because of our schedules and honestly, there are just not enough hours in the day. When we are on the full therapy, the prep, administering and clean up runs about 8 hours a day. Oh and I'm on bedrest, did I mention that? Jordan's schooling will be over in less than a month, so we are planning to get back on track and get totally immersed in the therapy--until of course, new baby arrives. :)

There is no choice in going back to conventional medicine at this point although I dream about it sometimes. His medical team was clear that there was nothing more that they can do beyond what we've already tried. And when I just want to give up and put Sy back on his formula boxes, God reminds me, "Are you trusting in ME (the Creator and Sustainer of the universe) or do you just want to go back to what is comfortable and put all of your faith in man?" It's much easier to trust in the "norm" even when it's failed us, than to step out onto somewhat unchartered territory like his therapy even when we know it's exactly where God wants us. I often feel like Sy's health is in now in my hands and God has to continually remind me that Silas is His; He is holding him in His hands, not mine.

So Jordan has three weeks left of school! Wow! Probably doesn't seem like that long to you all but each day feels like a mountain right now. He is hardly home and when he is, he's trying to do everything for me, the kids, and Sy's therapy, along with everything else--like some sleep. He's been sick a lot recently too which is so unlike him. I know the stress is immeasurable for him right now. He still has a lot of clinical hours to finish in a very short amount of time and he has people pulling from him on all sides. It doesn't help that his 33 week pregnant wife is having pre-term labor and is now officially on bedrest. Yep, bedrest sounds great in theory and I will do my best, but some things just can't be a reality right now. It's not that we don't care immensely for this precious new life and Jordan is willing to walk away from school for the health of this new baby, but complete bedrest for me just isn't an option--at least not for the next three weeks. And please know that our support system here is AMAZING! Friends are so awesome and they often ask us how they can help us, but ever been so overwhelmed that you don't even know where to begin to tell folks how they can help? This is the first time I can truly say that I understand that feeling.

I've learned a lot about myself lately and sometimes these self-realizations aren't always very pretty and definitely not easy to express to the world. (In fact, I'm pretty terrified to post this blog in fear that people will think I'm complaining, negative, going on and on about my kid again, or have some sort of expectation... But in reality, I feel that God is calling me to take a leap of faith in authenticity in hopes it can be an encouragement to others. So I guess I'm finally obeying.) In the past, I've always been very organized, remembered everyone's birthdays/anniversaries (even before Facebook), had coffee dates, hung out with loads of friends, etc. but now life just seems to escape by me. I can't seem to remember much anymore and I'm sorry for that. Please grant me a little grace during this time. I used to wonder how people could forget important dates and such things, and now I am one of them! I can also be one who can live a bit in denial and usually tries to look for the positive or the spiritual lesson to be learned in any situation. You know, in tough times consider it pure joy and then move on... Pretty easy. But God is now teaching me to accept this storm I'm in--not the storm I've conquered or the one that's past me by... but the one I'm currently walking through. I need to stop fighting it and count it a pure joy that God has chosen me to endure this time, under these less than stellar circumstances. He's bending me and molding me to be more like Him and I can trust that He won't let me break.

I guess today is song day! :) Let me end with these lyrics...

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Listen: Casting Crowns, "Praise You In This Storm"

What About the Others?

To say the least, we've been a bit overwhelmed with the work of the therapy, but I thought I'd share a pretty cool story with y'all...

Last night, when I was putting Sy in bed, I knelt down beside him for prayer (and some hugs/kisses). Sy's prayers have always been tenderhearted and it's amazing who comes up in them (a fellow firefighter to accept Jesus, those involved in accidents heard on the car radio, kids with broken bones, etc.) However, last night it hit me in the face how this boy looks outward even though his life is piled with issues that need miracles.

In his prayers, he was praying for his mom and her inability to eat gluten (Celiac's). "Dear God, please help Mommy to be able to eat gluten someday..." Along with this, he was praising God for a miraculous healing in our family recently (getting closer!).

How is it possible that this kid, whose diet consists of only a handful of ingredients, would be praying for someone who can eat just about everything but one? I definitely didn't stop long enough to soak in it, but the heart of Jesus was right there in the room with me.

As I recognize how often I act in selfishness, I am humbled that the Grace of God would provide me with a son who would point me back to Him.

My eyes are starting to water and I'm at a clinical today... Thanks for reading!

How Goes It?

Just a quick post to update y'all on our progress.

Sy has managed to give himself an almost permanently carrot stained Joker smile (look close)...

Sy has been on the therapy for several days now. As we expected, we are overwhelmed with work! We practically live in the kitchen as we prep juices/soup/gruel, clean everything up, and then start the process all over again! Over this time, we have learned how to hone our juicing skills and streamline the process as much as we can. Everyone in the family is committed to helping our one family member who needs it. We are all pitching in to help as Sy cleans up the table and floor, Es dries and puts away dishes, and Bee finds a pencil to write on our walls (grrrr).

Here's our little princess helping out.

As a quick side note, when a 26 week old pregnant lady stands on a tile floor for hours on end in a kitchen, it makes her feet have a sad face. One thoughtful friend sent an unexpected surprise that has turned those feet frowns upside down. A padded kitchen mat! Sweet!

Look at that space age softness! Tempted to put a glass of wine on one end and jump.

Sy, of course, is being a real champ through this whole thing. We do ask for your prayers with one specific issue... Getting the amount of juices down in a day is a tough task for anyone, especially a 5 year-old boy. Another issue that we've encountered is that he will break out in a small rash on his skin around his mouth. An opportunity to place a nasogastric (feeding) tube has become available to us and he actually loves the idea so he won't have to chug-a-lug. God has knocked down our obstacles so far, so we don't expect any different with this. We just need wisdom with every step.

More to come, so stay tuned!

P.S. As far as my diet changes with Sy, I've been amazed at the few noticable changes I've encountered...dropped some excess weight quickly, my appetite has been under better control, and just a better feeling all around. Keep the good changes comin'!

Details!!

We've had several people asking about what our next steps are going to look like for Sy so here it is in a nutshell...



After coming to the end of the road with traditional medical treatment, we were guided to a particular treatment plan that couldn't be more perfect for someone who can't eat...a therapy of food!!! I know this sounds crazy, but after more hours of research than we'd like to admit and comparing it to what I already know from my medical training, it made total sense. Sy has been on a no or very few food diet for the majority of two years. We have watched Sy develop signs that show his body is taking a toll (skin color, appetite, severe constipation, etc.). In passing, one would think that Sy's health is good (and it is compared to severely ill kids), but as a parent, you can tell when things just aren't right. Everyone knows that the body needs good, pure nutrition, and not the kind that comes out of a lab. Also with the amount of sugar Sy gets from his current artificial nutrition, there is the very real risk of developing type 1 diabetes in the near future. The bottom line is that Sy's body has an autoimmune & GI issue that we have only put on somewhat of a pause for right now. There are more things we could do to just "cover up" the disease, but we want real, lasting health. Sy's body has the systems in place to fight this disorder, but the cells of these systems need the right input to have the maximum healing output. Make sense?

The Gerson Therapy we are about to embark upon is anything but simple. Unfortunately, there's no shortcut and you either do it 100% or you don't. There are major costs of time and money, but this family will sell everything for the health of one of our loved ones. The folks from the Gerson Institute informed us that the amount of time it will take to prep, administer, and clean up each day will run about 8 hours!!! However, we have heard first-hand stories from people who have been amazingly healed from destructive diseases (like stage 4 cancers), but it does come at a great sacrfice. We will walk with him through this!

Below is an example of a condensed and simplified daily schedule for someone on this therapy. Sy's will be modified due to: his age, introducing very specific, organic food to his GI system, and to the systems that need repair. So here is what our new life will look like:

7:00 Wake up
7:15 Enema prep & administration
7:45 Special breakfast prep & juicing; prep and making of gruel*
8:00 Eat breakfast & supplements
8:30 Wash all produce for day (huge amount!), make enema concentrate, make special soup
9:00 More juicing, gruel, & supplements
9:30 More juicing, gruel, & supplements
10:00 More juicing, gruel, & supplements
11:00 More juicing, gruel, & supplements
11:15 Enema prep & administration
12:00 Special lunch prep, more juicing, gruel, & supplements
1:00 Eat special soup
2:00 More juicing, gruel, & supplements
3:00 More juicing, gruel, & supplements
4:00 Enema prep, administration, gruel, & more juicing
5:00 More juicing gruel, & supplements
6:00 Prep special dinner, more juicing, gruel, & supplements
7:00 Eat dinner, more juicing, gruel, & supplements
8:00 Enema prep & administration

*Gruel is made by slow cooking organic oats and then straining the them. The gruel is the white liquid that is left over. Sy will have to drink that every hour.

So this will be on top of my work/school/clinical schedule and Heather's pregnant mom/feeding/homeschooling/cleaning/shopping/dealing with me schedule. No big deal...ha! We repeatedly heard from people that you will easily lose a few years as you dedicate yourself to this and there is no way you can do this without help.

It's very easy to get overwhelmed by everything that is staring us in the face right now; however, we have been led through doors that have miraculously opened and brought us to where we are. We are confident that He will provide where we fall short. It's a new journey and we are excited to for Sy's healing and hope to be able to help others along the way.

To learn more about this therapy, check out these documentaries on youtube, Netflix or Hulu:

*Dying To Have Known

*The Gerson Miracle

*The Beautiful Truth

*Or "like" the Gerson Institute on Facebook.

Stepping Down...

The last several days have been chocked full of great information! Fortunately, this was exactly what we needed. We are gaining more confidence with every step as doors continued to be opened for Sy's health, but we are learning that we will be forced to make MAJOR changes to our lives to have a shot at Sy's healing. Thank you to those of you who have been praying and providing for us as we explore this new option.

So, what have we learned?

This new therapy option requires an unbelievable amount of dedication and determination before you even start anything. Do we REALLY want Sy to get better? To the point of putting almost everything on hold for it?

This therapy has been researched and proven for over 70 years. You either do it all or you don't. The problem is that doing it all will take more time, energy, and resources than anything we've ever done before (this is an understatement). This is fantastic timing with my 24 hour shifts, my full-time class schedule, and my clinical schedule that is heating up.

We have learned that as our little boy walks this journey, so will the rest of our family. We have allowed Sy to live alone in his foodless world as we all indulge in whatever we want. It's time for us to step down into his world until we all emerge together.

Here is the really amazing thing that has been in my mind as we are here: This new lifestyle and choice for health is an echo of what's required of my faith. Do I trust Him enough to let go of everything I think is essential to allow Him refocus me on those things that have eternal value? Convenience versus my son's health? Distractions versus leading my family? Selfishness versus selflessness? It sounds easy, but it will require more of me than I have. This is what brings me back to Him on a minute by minute basis.

Sy's health journey has been an opportunity to watch chained doors fly open but also an opportunity to turn the hearts of my family toward something worthwhile.

I know this post has been a bit vague. We will be posting more details soon about what is coming our way.

Thanks for reading!

More Windows...

FYI: We are doing a MAJOR overhaul of the blog so please pardon our appearance. We hope to get the permanent one up and running soon.

So I mentioned in the previous blog that the windows keep flying open for Sy's new therapy but I needed to save those for another entry. So here we go...

I wish I could sit here and list in detail all of the AMAZING blessings that we've received over the course of the last month alone but this entry would be too long. It has been so humbling and I long for the day that we will be the GIVERS instead of the receivers.

To start, we have had a couple of deposits in Sy's account from various folks and two recent fundraisers. One fundraiser was from the Land Of Lakes Montessori School here in Clermont. The students had a Pajama Day fundraiser back in December. The sweetest part was the precious HUGE card they made Sy! He loved it!! We are so grateful to the school and all of its wonderful students for thinking of us!

Secondly, Norm Duke (World Champion bowler) is still raising funds through his Strikes For Sy campaign that he initially started over a year ago. He recently issued us a check that will allow us to go out to the clinic in San Diego for intensive training for Sy's new therapy. This was totally unexpected. Thank you Norm for all you do for Silas and for spreading awareness about EE!

We've also had some other various blessings... We are more than blessed to be living in a community where we take care of one another. God has sustained our family through the loving hearts of those around us. It has been life changing both for us and our children.

Lastly, one of the biggest obstacles for venturing on our new journey with the Gerson Therapy was the cost of some of the supplies--one major appliance in particular. I'll spare all the details but I had a phone call shortly after the new year started with a friend stating that this item had been ordered and would be shipped out soon. I was beyond shocked! This was a major hurdle that needed to be jumped in order to get started and lo and behold, it was done. Speechless. Grateful. Awed. Indebted. Excited. WOW!

We just want to express that we wouldn't be able to get treatment for Silas (both past, present and future) without the loving donations from those of you who have given. That truly blows us away ALL THE TIME. I just hope we say thank you enough!!

A Mere Act Of Kindness?

One day almost two months ago, I was headed to a friend's birthday luncheon... I was super excited to celebrate my dear friend, but never in a million years did I expect that day to be so extraordinary... nevermind so life changing!

I was riding down to the celebration with another one of my sweet friends when we stopped to unexpectedly pick up the guest of honor's mother-in-law. She was visiting from out of town and was going to join us. I've admired this woman and was looking forward to having some time with her to chat and catch up on a beautiful, November afternoon in Florida.

So in the car we started talking and about 30 minutes or so later, she told me that she keeps updated on Sy and had been thinking of him a lot and proceeded to tell me about a couple of ideas that she had heard about. First of all, I was blown away by the fact that this busy woman who lives states away and doesn't even know our family all that well, takes the time to stay updated on Sy but also spends time thinking of possible treatment options for my son! How amazing is that?

Anyway, she shared with me about this new therapy that has a learning clinic in San Diego and a patient clinic Mexico... As she spoke, things started clicking in my mind and in my heart. I'm sure she thought that it was just another conversation and just a mere act of kindness by sharing some of her ideas and thoughts... However to ME, this was more than an "act of kindness" but rather a conversation prompted by the Holy Spirit himself. She had no idea that this was the prefect conversation spoken at the perfect time. Little did we know that a week later, Sy's doctor in Cincinnati would regrettably be telling us that "we are out of options" upon more failed biopsy results. Ordinarily this would have been completely overwhelming, disheartening, and saddening beyond words. My heart would have been shattered. Instead although a door was definitely closing, God had already opened a window a week earlier.

My friend's mother-in-law shared with me about The Gerson Therapy that day. This therapy has been used to treat many diseases--mostly those who have suffered severe stage four cancer where chemo and radiation have failed. This therapy is often found for those whom the doctors have said, "We are out of options." Granted Sy is not dying by any means, but we've noticed a gradual and steady decline. Jordan and I both have sensed that we're slowly losing his health. This therapy sounded crazy but perfect! At this point, what did we have to lose?

So we've spent the last two months researching and researching. We've read all the positives and all of the criticisms... So we gave it to God. We know He will heal Sy and will provide a way... This therapy was something we desired to pursue, but the regimen and cost are just overwhelming. You see, there is no way that we can do this on our own. It will take a "village" to help us. Although the theory sounds amazing, the reality of it seems almost impossible. But of course with God, nothing is impossible. Absolutely nothing.

Meanwhile, the windows have started flying open... And I mean FLYING!! (I guess those details will have to be for another blog entry.) :)

The point of all of this jibber-jabber is that words of encouragement no matter how small or mere acts of kindness are always needed and the Holy Spirit can use them to radically change or even save people's lives. Literally. That one encouraging conversation two months ago I will forever remember and I know Sy's life will never be the same. Thank you!


http://www.mosaicfl.org/?pg=cG9kY2FzdEVwaXNvZGVz&pid=RXBpc29kZXM=&sb=0&sid=Q2FycnlpbmcgVGhlIEdvc3BlbA==
For a great message, please listen to Carrying the Gospel/Active Kindness...