Update to Difficult Decisions and Diseases SUCK!!

Diseases still SUCK!!!

The middle of this post has more details regarding Ben's disease and how we have come to today...the end has an update on where we are today.

There are honestly a whole lot of unanswered questions with the decisions we face in choosing what route to take for Ben's future.  Dr Furuta (gastroenteralogist), Dr Atkins (allergy) along with a nutritionist work together to determine how to best maintain Ben's overall health profile.


History:
When Ben was just 18 months old, he was a sick boy with failure to thrive.  We found that due to his disease and food allergies, he was not and had not been absorbing nutrients as he should have been. His esophagus was swollen with strictures from eosinophil cells that do not belong in the esophagus.  These strictures look like coral reefs and keep growing until eventually the esophagus could be shut off.  The section of the esophagus could be cut out and the esophagus stretched but this is dangerous because it would cause thinning of the walls and a sharp piece of food could puncture the esophagus causing a life-threatening emergency situation.  SOOO... the main way to handle the problem is through diet.  It is so much more than "normal food allergies" - in that things that most people might have sensitivities to but be able to tolerate cause more damage for Ben.  If food restrictions are not effective, they use steroids to control the cells.

I'll save you the disgusting actual pictures but if you do a yahoo image search of what is EoE, there is an image with three shots of the esophogus - we have never seen the "normal' one - but we have seen the likes of both of the other before.

Recents History:
At this point, Ben's allergy tests are actually looking positive.  We left the office a few weeks ago with hope that he would actually be able to introduce most everything back into his diet.  They did three different types of tests.  As long as there was no allergic reaction in each of the three tests, our expectation was that he would be able to introduce that food back into his diet.  The only two items that showed up in any of the three tests was peanut and dairy.

You cannot imagine how elated we were to think he was going to be able to have ALL these food again - soy being the most exciting because it is in everything.  In fact a whole new genre of food he has never had would have been possible - Asian - with the introduction of soy!

We had one more hurdle to jump over before we would get to start introducing food - a baseline endoscopy.  This would be his 14th endoscopy and because he hadn't been having any significant symptoms and the allergy tests were so positive, this "scope" was just a routine scope in our mind.  The thing we had to do to reach the promised land of food :)

The day of the scope, I sat down with Dr Furuta to look over the images.  He showed me and I could see a bit of swelling and a few strictures in his esophagus, but honestly his esophagus looked better than I had ever seen it.  His stomach and upper lower intestines looked great in the images.  We still had to wait for the biopsies to be sent to the lab and hear back about those results.

The scope was on a Monday.  On Friday, Dr Furuta called back with the biopsy results and the news that there was swelling in both the esophagus and the stomach.  I asked what the eosiniphil count was - 72 and 36 respectively.  I was encouraged by the numbers to be honest.  72 was the LOWEST I had ever heard.  He's had them in the thousands before.  Dr Furuta did not sound as excited as I was.  He said he wanted to run more tests to find out what might be causing the swelling in the stomach.

Dr Atkins was out of the country for two more weeks and they work as a team.  Dr Furuta said we would wait until he came back to make any further plans.

I was honesty not worried at all.

Ben had an episode of his stomach hurting really badly soon after that essential oils, benadryl, nor tums would touch.  (well, the essential oils actually did give relief for 20 minutes at a time)  I wanted to ignore his stomach pain as "one incident."

So, when Dr Atkins' nurse, Jenn, called on Friday, I was really shocked to hear that not only were they NOT going to introduce any new foods to Ben's diet but in fact, they wanted to take more out - eggs and dairy OR he could go on steroids (for life).

Current Thoughts/Decisions:
Because this is a follow-up to the last post, I am not going to go into the details of the choice but tell you where we have landed at this point.

Ben does not want to go on steroids.  He is not interested in living with the side effects of steroids.  So, he, with a good attitude, will be choosing to alter his diet.  We do have a meeting (yet to be scheduled) with the Drs before anything actually changes.  Ray and I don't understand where they came up with egg and wheat as the choices to remove from his diet.  Because Dr Furuta and Dr Atkins are the leading docs in this field, we are choosing to trust their judgement but now without question :)

Specific Prayer Requests:
1.  If you could pray for us to ask the right questions that would be great!
2.  Also, assuming we change his diet, we know our diet will be altered as well.  There is a part of me that is super excited about the changes because the reality is we will be healthier than ever.  But I do pray to be able to find recipes/food that Ben will get excited for.
3.  The part of me that mourns the most is the fear of relationship.  When a diet is restricted, it is intimidating for others to invite you over.  I don't want his or our lives with others to be restricted.  He can bring his food, but others need to feel comfortable enough to know that he'd rather bring his food than be excluded.
4.  Then there are other things like youth group, sports, school, etc in which he will be the kid who has to exclude himself.  We know that a year from now all of this will be normal for us and although we will look back at this and know it was BIG then, it will not always be big; in fact, it will just be normal.  But I don't want to discount the life change now either.
5.  Pray for us to choose to take it moment by moment - one step at a time - to not look too far into the future or for us to be sucked in by the fears of being different.

Our prayer is that this verse we didn't even know we needed to commit to our heart but chose to commit to memory this month as a family would be one that is not just head knowledge but becomes heart living!

That is why,

for CHRIST'S SAKE,

I delight

In Weaknesses

In Insults

In Hardships

In Perscecutions

In Difficulties

FOR WHEN I AM WEAK,

THEN I AM STRONG.

2 Corinthians 12:10

We can only be strong when we know He is our strength.  I pray that as we walk through these difficulties, we will choose to delight in Him and be strong!

Ben's Week
This week I have seen Ben press into God and reach for strength that has been amazingly encouraging.  He is not looking forward to changes he knows is coming but also has a great attitude.  He has had adults and peers reach out to him which has brought much encouragement.  Thank you to each an everyone of you who commented on Facebook, this post, sent text messages, called, and grabbed him when you saw him.  It has meant A LOT to Ben (and me)!!! Not one name has been missed in his telling me who has showed him care.  He has been floored and definitely knows he is loved.

Live Life Everyday - Oridnarily Extroidary

I was just reading a post from Jon Acuff who his helping to launch an initiative for women coming out of prostitution.  I first thought to myself, it is cool that because of his notoriaty that he is able to help bring awareness on such a grand scale.


That made me think of how my everyday, ordinary life is not for naught.  I can make a difference everyday in the space that is around me.

I do not ever want to rest on my laurels of believing that because I reached out once in life (or maybe 50 times) that I am done; however, I want to share a story to hopefully inspire you - and remind myself.

In May a woman came to church with a little girl.  She looked like an ordinary, everyday woman living her life.  When I introduced myself to her I did not expect my life to be altered.  We had a bit of small talk to begin with.  When we realized we had lived in the same state and in my little, itty bitty hometown of 1800 people resides one of her best friends, she began to open up.

"Marie" has 2 boys she has not seen in years and a 6 year old little girl she hasn't seen in 6 months.  Her husband left her last year with her girl.  She stopped using Meth in January and alcohol is her drug of choice at this point.  Marie is a stripper by trade as her felony history makes getting a "real" job almost impossible.  Marie wants to change her life but her history keeps her returning to what she knows.

With a houseful of 12 people (who were all at church too), I invited Marie to lunch, with just me.  Ray took care of all of our company.

At lunch, accompanied by the adorable 7 year daughter "Megan" of a man Marie is residing with, I heard stories of hope and hopelessness.

Marie's husband was the owner of a club she worked in previously.  He was "proud" of her for getting back to work and earning her own way.  This pride was devastating to Marie.  She wanted to know what man actually takes pride in a woman sharing her body with the world.  Marie said no woman she knows can go into these situations without an intoxicated brain - "no woman wants a man to look at her that way.  We all have to have an altered brain or there is no way we can do this work."

Marie and I did not talk in too much detail because of Megan's presence.  Megan left the table here and there when Marie would open up more.

I offered to have some conversations on Marie's behalf and gave her my information as she had no phone or address to offer.  She was going to be displaced of a home within the next two weeks.  I encouraged her to take a few action steps and promised information upon her return to church the following week.

Before we left one another I told her I would really like to understand the tears and sorrow in her eyes.  She asked why I care.  I told her that I have a 13 year old son that I would love to protect from the pain of pornography but feel a bit hopeless as it seems like an impossible snare.  I told her that from her tears I know there is pain and to understand that pain helps me to understand more about why this snare is so terrible.

Marie told me, "I have two sons.  I have a daughter.  I have read the Bible.  I know my life is wrong.  I know I destroy marriages.  I know Jezabbel from the Bible and I am her."   She went on to tell me that one night when she was at work, she went out for a break.  "Across the street was a field of horses.  They were all dark.  They were dead - not dead as in death - but had no life, you know?  There eyes were hollow, they had no fat on their bodies, they were skeletons.  But then, a white horse, full of life came up in the midst.  God showed me that the white horse was me - the white horse was full of life in the midst of death.  He told me that I was choosing to live amongst the dead and it was time for me to move through death and into life."

We said our good-byes and looked forward to meeting the next week.

The next week came and Marie DID show up.  She had moved to another strangers home during the week and got a cell phone.  We exchanged information and prayed - we prayed for a long time with lots of tears and time.

Marie told me that some Christians won't speak to her and others just tell her they love her no matter what.  "They don't encourage me to change - they just 'love' me."  She told me that she doesn't think either Christian is right.  "What I do is not ok - it's not ok with me and it's not ok with God."

I looked at Marie in the eyes and with complete genuine love told her, "Marie, I love you.  I don't love you because of what you do or don't do.  I don't care if you are the CEO of a large company, a mom, a stripper, or a prostitute, I love you because you are a wonderful, beautifully made princess of the One true King - and that alone is enough of a reason to love you."  I went on, "I don't want you to continue to hurt yourself.  I don't want you to continue to live in this life that brings misery.  I want you to choose a new life - a new life that brings the fullness of everything God desires for you.  I want you to choose a new life - a new life that you can be proud of.  I want you to choose a new life - a life free of addictions and pain."  I further explained, "Marie, I want to walk through this with you - but if you come back next week and have continued to do that which you do not want, I will still love you.  When I see you, I see a child of God - a woman of love - a woman of desire."

This is the last time that I have seen or talked to Marie.

Unfortunatley, our church closed it's doors two weeks later and she did not attend either of the following two weeks.

I don't know why God chose for our paths to cross for this short period of time.

I was just living my everyday ordinary life - God brought Marie into it - for a short period of time.

She hasn't returned any texts since two weeks after our last encounter.

Marie changed my life - she allowed me to see into the life of one who lives very differently than me.  She allowed my family to see that God is everywhere - even in the strip clubs - even in places where others do not want him to be.  I pray that my sons have been saved from a life of addiction.

My hope is that Marie knows she is loved by God but honestly, I hope she knows she is loved by me.

I will never stop praying for Marie.

...and Megan - the 7 year old little girl - I don't know much of her story.  I know she does not have a mom and lives with secrets.  I pray for her safety.  I pray for her to be loved and loved well.  I pray that the God of this universe would protect her and make himself known to her.

May we all live our everyday, ordinary lives for the One we call Father, King, Savior, Counselor!

Romans 12:1-2 - MSG
So here’s what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don’t become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You’ll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you.

What is a Spiritual Post?

 

I learned today how to add new posts to the home page and link them to their correct page tab on the blog.  This is all a bit new to me and something I am striving to learn - blogging and all that it entails.  I am glad that I am someone who is always striving to learn as this task is no small feat for me ;)

As I was testing out my newfound skill, I realized that there is "nothing" to link to the spiritual tab and since the heartbeat of who I am is spiritual, I felt faint.
 

 
That's when I was gently reminded that ALL of who I am, all of who you are is spiritual.  We are all connected to God in each and everything we do.



1 Thessalonians 5:23 reminds us that we are whole only when we recognize that we are not one dimensional...

Now may the God of peace make you holy in every way, and may your whole spirit and soul and body be kept blameless until our Lord Jesus Christ comes again.

In this way whether I am shopping, exercising, straightening my hair, eating food, whatever I do, I am living for my creator – the God of peace – the One from which all things began, from which all things are, and from which all things will ever be.

So although I may have one particular tab that says “spiritual,” truly if I am seeking wisdom for life, no matter what the “word” on the tab may be, it is a “spiritual” post.

In some ways I feel like I am writing this post as a comfort to myself, but I hope that this simple message is one that helps encourage you as you walk through your day today.

Life is all connected and all that we do brings glory and honor to our Lord (or not).

In short, there is no post that is not a spiritual post; however, on this blog, the posts labeled "spiritual" will include food for your mind with Word that will encourage growth for my (and your) spirit.

Love, Renee'