Glory To God!

It's been 3.5 years of struggling with Silas's skin.  We have tried SO many things.  Dozens of diet changes and natural options and nothing seems to help.  After much agony and prayer we finally decided to try intensive steroid treatment.  Strong creams applied to  his skin twice a day.  After just 1 week his skin is significantly better!  Amazing healing!  It's easy to say that the creams healed his skin.  And yet, in a way that I can't fully explain it's also God healing Silas.

Years ago I was a science minor at a Christian college.  There were a lot of discussions about how science and faith mixed.  One of the main things I remember was one of my professors who said, Don't let God become a God of the Gaps.  Often we explain what we can with science, leaving the rest as something God miraculously does.  Then God is only in the gaps, only in the things we can't explain with logic and research.  But this is dangerous.  What happens when one of the seeming 'gaps' later gets explained by science?  Is God suddenly powerful, just because as humans we understand more?  Instead we should learn to see God in all of the amazing things of the world, even those that we CAN explain!  

This brings me back to Silas.  We have prayed constantly for healing.  So many people have prayed with us.  I hoped for a miraculous, unexplained healing.  Then it would be so easy to give all the glory and praise to God!  But instead, the healing has come through the steroid creams.  But we still need to give praise, glory, and even credit to God!  God is healing him!  Just because it's a method I can 'understand' doesn't make this any less of a miracle.  It doesn't make God any less powerful.  

Thank you God, for healing.  Glory to God in the highest!

Reflections on Grandparents

(from Anna)

I was very fortunate to grow up with all four of my grandparents living and fairly close by.  In Kindergarten I went to school in the morning where my Grandma Lehman was my teacher, and then took the bus to their house where Grandpa Lehman would watch me for the afternoon.  In my totally biased opinion, I think this gave me a special bond with them, especially with my Grandpa Lehman.  My Grandma Lehman died, quite unexpectedly when I was in high school and then my Grandpa Lehman died in 2004 while I home for the summer whilst working in Germany.

Since my dad's parents lived just down the road, we spent a lot of time there when I was young.  They lived in a big farmhouse, so I remember playing in the barn, in the empty corn bins, the fish pond, and any kind of outdoor activity we could think of.  There were also lots of fun toys to play with inside, and I particularly remember spending lots of time with my cousins playing with (and fighting over) the pretend money.  Another fun memory was each summer when most of the family would gather together and do a big day of 'freezing corn'.  The men would pick the sweet corn from the field and bring it up to the house.  Boys would husk the corn.  The women and girls would work in the kitchen to boil, cut, and bag it up.  I remember being proud when I was old enough to be able to cut the corn on my own.

My mom's parents - Grandpa and Grandma LeVan lived about an hour away.  We did go there are regularly as well and I have fun memories especially of riding on their homemade merry-go-round (yup, by grandpa actually made a merry-go-round, mostly with pieces from the dumpster)!  But more of my memories of Grandma and Grandpa LeVan are from my adult life.  Our boys both got to know Grandpa Ernie and Grandma Helen fairly well, despite the distance.  They remember playing at the playground near their house and go for tractor rides with Grandpa Ernie.  Clarence remembers Grandma Helen's famous apple dumplings, vegetable soup, and deviled eggs.  We spent many hours sitting on their swing in the backyard and watching the trains go by.  We would make predictions about how many cars would be on the train, and then count them as it went.

Grandpa Ernie died in the summer of 2014.  We were in North America for the summer and were able to attend the memorial service.  Grandma Helen passed away just last week and hers will be the first funeral that I won't be able to attend.  I definitely feel sadness and even some confusiont about how to grieve from afar.  It seems weird that the next time we go home we won't make our regular trip to West Manisfield to visit Grandma and Grandpa LeVan.  Reflecting on this also makes me that so thankful my boys get to know their grandparents well, and we can stay easily stay in touch with them and talk to them regularly.  Praise God for grandparents!

 No trip to visit Grandma and Grandpa LeVan is complete with a tractor ride from Grandpa!

Ironically, Silas's onesie says, "Everything's Better At Grandma's".  This picture was taken at Grandma's house, but he doesn't seem too happy!

Four generations on the backyard swing.

A Day in the Life of Silas

I go into Silas’s room to wake him up.  I sit on his bed and gently talk to him and rub his back to wake him up.  I also discreetly check his neck and behind his ears to see they’re oozing and/or bloody.  Silas, in a state of being half awake/half asleep, immediately starts scratching his eyes.  I gently move his hands, holding them so he cannot scratch.  He buries his head in his sheets rubbing vigorously back and forth.  Controlling the hands does little to stop the itching.

Eventually he gets out of bed.  I check his bed.  It is covered with dead skin cells or whatever it is that got scratched off during the night.  There are blood stains on the sheets from rubbing his eyes.  I try to evaluate how bad the damage is.  Do I need to change the sheets, or can I just vacuum up the worst of it today?  I see Silas coming out of the bathroom.  He can’t really walk properly because he can’t bend his knees.  His pajamas are sticking to him around the legs and arms, which means the skin is totally raw underneath, oozing and bleeding.  He comes to me for a hug, which I gladly give him and I notice that he smells.  He just a bath last night, but he has a certain smell.  The only way I can describe it is the smell of rotting skin. 

Breakfast time.  No dairy, no grains.  I’m debating hashbrowns, but wondering if nightshades might be irritating him.  I guess it’s eggs again.  In the back of my mind I wonder if eggs might somehow be irritating him even though they didn’t show up on any of the multiple allergy tests we’ve had.  Silas takes three vitamins/supplements each morning, thankfully without any complaining.  But looking at his skin, I’m wondering if these are just a waste of money.

Now it’s get dressed time.  Along with getting dressed is always ‘lotion time’.  Clarence and I discreetly fight about who gets stuck doing his lotions today.  Multiple creams and bottles are pulled out.  A mental battle: do I use the strong, steroid creams and risk long term effects; or one of the many more natural options we’ve tried.  Nothing really seems to help anyway.  Silas cries as I apply some of the lotions because it stings his raw skin.

We head out the door for kindergarten.  Usually at some point there is a temper tantrum or crying from Silas.  I wonder how much of his emotional and behavioral issues are related to his physical well-being.  I know MY emotions are strongly connected to his physical well-being.  I constantly remind Silas to please stop scratching.  If he seems to be exceptionally itchy I give him some antihistamines before we leave the house.

A few hours later, I go to pick him up from kindergarten, wondering what awaits me.  Sometimes Silas is playing and enjoying time with friends.  Other times he is sitting off to the side by himself, scratching away.  Lately it’s been mostly the latter option.  I feel discouraged and helpless as I see more blood stains on his jacket from rubbing his eyes and neck.

We go home for lunch.  What am I going to feed this boy?  No grilled cheese sandwiches around here.  Thankfully I find some leftover meat and veggies in the fridge.  At lunch he also has kefir water for some good probiotics.  After several helpings of food Silas is complaining that’s still hungry.  I pull out some fruits and nuts and eventually tell him that’s done eating.

Silas and I enjoy a quiet afternoon at home.  We read and play games and I continually remind him not to scratch.  Eventually Clarence and Austin come home from school and he enjoys times playing with them.  Meanwhile, the battle to get Silas to stop scratching continues during all of this.

After dinner comes the bedtime routine.  Usually Silas has a bath 3 times a week.  He hates bathtime because the water stings his skin.  We try adding various things to the bathwater to help soothe the skin, but nothing ever seems to really help.  After bath comes lotion time again.  A dreaded and painful process for all family members.  Silas often starts crying even before we start because he knows it will sting and burn.  I feel so discouraged and frustrated looking at his skin.  I often end up losing my temper and yelling at Austin who is just an innocent bystander to the whole thing. 

Before bed we pray together.  We thank God for His amazing love and goodness to us.  And we pray for healing.  My heart hurts as I struggle to keep trusting.  Some days I feel so overwhelmed and discouraged that I cry as we put the boys to bed.  I give Silas a hug and tell him I love him.  He usually responds with either, “I love you, too” or “I know”.  J  I remind him to do his best to try not to scratch during the night. 

[Disclaimer:  I, Anna, wrote this in a first person context, usually mostly ‘I’, but I should state Clarence is also super involved, and extremely helpful in each of these steps every single day.  His support is amazing.]

I’m not really sure why I felt drawn to write this blog entry.  I don’t want to be one of those people who constantly complain about her life, trying to win some kind of prize for the ‘biggest problems’.  I KNOW that many, many people have a yoke MUCH heavier than mine.  And often when I’m talking with friends, Silas’s skin/diet/health is the last thing I want to talk about!  But I guess I still need some way to wade through my thoughts and emotions.  Thank you for your prayers and support and we continue this journey. 

No sugar, No dairy, No grains....JUST WHOLE FOOD

For the month of September 2015, we decided to try Whole30 as family.  You can see more details at www.whole30.com, but basically it’s a very strict diet that focuses on eating only healthy foods (meats, eggs, vegetables, and fruits) and eliminating ALL others foods (no sugar, no grains, no dairy, etc) for 30 days.  The main objective for us choosing to do this was in hopes that it would begin to heal Silas’s gut, and eventually heal his skin.

So, how did it go?  Well, that’s a complicated answer, of course.  ;)

First of all, I should say that the boys did AWESOME!  Their attitude was fantastic!  Thankfully, they are generally good eaters, and most of the time I could still serve foods that they enjoy, so they really didn’t complain about the foods they couldn’t eat.  A typical meal would be a meat, a starchy vegetable, and another (non-starchy, usually green) vegetable.  Breakfast was mostly eggs, with fruit or maybe potatoes.  We snacked on lots of nuts and fruit.  The ‘results’ varied quite a bit for each person.

Clarence – did great, with no cheats for the entire 30 days.  He even lost 10lbs, which I was quite surprised about, since he had lost quite a bit in the beginning of the year, and didn’t need to lose any more, IMO.  He is super self-disciplined, and already has way less cravings, etc. for ‘bad food’.

Anna – I did good for the first 3 weeks, but ended up quitting at Day 23 – for a variety of reasons.  I only lost a few pounds and still have lots of unhealthy cravings.  Oh well.

Austin – we basically just had him do the Whole30 at home, and allowed him to eat others things when he was out.  This seemed to be a good compromise for him. 

Silas – the biggest questions, of course, is ‘Did it help Silas’s skin?’  Unfortunately, not yet, since the skin is such a huge organ.  We have decided to continue with the program for him.  Three years of skin issues and probably a leaky gut will take a while to heal.  We’re hoping that if we continue the diet we will see changes in the next month or two.  We will allow a few exceptions to the diet – particularly eating rice again (this is not allowed on the Whole30 diet, but adding this back in will make life much easier for everyone). 

I’m not completely sure yet how this will look for our family with Silas still on the diet, but the rest of us not really.  I will probably keep most of meals still gluten free, dairy free, and sugar free, since these are especially problematic for someone with a leaky gut.  But I might sneak a few sandwiches into Austin and Clarence’s packed lunches when Silas is not around.  ;)  I have to say, again, how impressed I am with how well Silas has handled this and how he really hasn’t complained.  But of course it wouldn’t be too polite of us to eating macaroni and cheese right in front of him and telling him he can’t have any!

So, we continue to persevere and pray for God’s healing on Silas.  Thank you to everyone for your support and prayers during this journey.

The Good, the Bad, and the Ugly – an update on the 30 days of prayer for Silas

Let’s start with the ugly: Silas’s skin.  Yes, unfortunately, much of Silas’s skin is still ugly.  We have seen a little improvement over the past 30 days, but honestly not much.  L

The Bad:  It seems in Western Christianity we often feel that unanswered prayers (aka , prayers that were not answered the way we wanted/hoped) are BAD.  I certainly feel that way most of the time.  I prayed for complete healing on Silas’s skin during these 30 days.  Many, many people joined us in prayer.  I prayed, read Scriptures, fasted.  And yet, still God is saying ‘Not yet’.  This is hard.  It seems bad at the moment, but I am trying to remain hopeful and continue trusting God for His perfect timing.

The Good: Yes, there is some good!

1.       Silas is starting to take a lot of ownership over his skin. 

He is really trying (for the first time) to NOT scratch.  This is actually a huge improvement!  He has told me that he prays for God to help him not scratch.  Even just being able to WANT to not scratch is a step in the right direction.  At night, he often sleeps curled up on his side with his hands tucked in between his knees to help control himself. 

2.       We usually just do lotions once a day now. 

Lotions and moisturizing is a complicated thing.  Using too much can hinder the body from producing its own natural oils, but Silas’s skin has always been SO dry and awful that we felt we couldn’t get ahead of it.  We were doing a minimum of moisturizing once in the morning before kindergarten and once at night.  Now we generally just do nighttime.  It’s been nice during the summer that he is usually with us all day and we can keep an eye on him to prevent excessive itching during the day.  Hopefully, we will not have to starting doing twice a day again when he starts schools.

3.       People praying. 

So many people have prayed with us for Silas, and people praying is always good!  Also, it has been super encouraging to us as we often feel weary after struggling with this for so long. It’s has been a wonderful reminder about the family of God and wonderful community that we have!

4.       Some answers?!? 

Maybe, hopefully we might be finding some answers.  As we have been praying we always ask God for wisdom in how to help Silas.  We continue to feel that this is an INTERNAL problem – related to digestion/gut health.

 

Our next step is to try a diet called Whole30 (more details to come, or you can just google it) starting September 1.   We continue praying and believing in God’s great power and healing abilities. 

Silas' skin: Two steps forward, two steps back.

Today is Day 12 of our 30 days of prayer for Silas.  We are asking people to join us in prayer for complete healing on Silas’s body.  Following is an update from Anna.  J

First of all, praying in faith poses a small but constant theology debate in my head.  I absolutely believe that God is MORE THAN ABLE to heal Silas.  I personally believe that someday Silas will have total healing with his skin issues, but I’m not really sure of WHEN.  We have been praying daily, usually multiple times a day for 3 years, and so far God has been saying ‘Not yet’.  Now we are asking others to join us in prayer, and I mostly believe that this is the time when Silas will receive healing.  For the most part, I pray in faith, believing that at the end of these 30 days we will see miraculous changes and recovery.  I pray and believe.  I can quote verses about God caring so much for us and God wanting to answer our prayers.  Silas’s story can be a great witness to many of God’s amazing power!

However, I certainly do not claim to know the mind or will of God.  My own mind often wonders, ‘but what if God is still saying not yet?’  I realize that God often has a bigger plan of which we are completely unaware.  Am I trying to force my own will on God by praying for healing now?  We certainly pray for God’s will for both of our children, but only praying for God’s will seems too generic.  Is praying for specific things testing God?  Or is NOT praying for specific things showing a lack of faith?  And then, what role do I play in helping Silas to heal?  Should I keep trying new medications and diet changes or does that seem like I’m trying to ‘help God along’?  Is it better to let God take all the credit by not doing anything ourselves?  These questions bounce around in my head daily. 

Speaking of medications and diet changes, here’s our latest theory.  [Disclaimer: we have had lots of theories and tried many, many things to help Silas.  Thus far, none have seemed very helpful, so I have no idea if this current theory will end up helping or not.]  We believe that Silas’s main problem is a digestion issue/leaky gut.   Basically, his body is detoxing through his skin.  The main way to heal leaky gut is through major diet changes:  no regular dairy, very few grains, no sugars or junk food, no processed food or conventionally raised meat.  To be fully committed to this, takes a LOT of discipline and commitment from everyone in the family!  We started eating this way around the beginning of July, and seemed to see some improvements.  Then we started our big driving trip down to Sicily, Italy.  We just spent 1 week ‘on the road’, and while we tried to eat somewhat healthy, some days it was just way too hard.  A few other factors working against us were the extreme heat and a sort of stressful daily environment (Silas doesn’t do well with changes, which would include traveling and crowded sight-seeing) which seemed to really irritate Silas’s skin again.  He was starting to look much WORSE again and I was feeling SO discouraged.  I was questioning this whole trip and wondering if Silas would ever get better.  We were both praying constantly for Silas, laying our hands on him and begging God for healing. 

Last night we arrived in Sicily.  Now, we get to stay in the same place for almost three weeks, which will help with stress level, sleeping habits and especially eating habits.  Also, we are near the coast, so hopefully the salty air environment will help Silas’s skin.  Again, we acknowledge that ultimately healing will only come from God’s grace and power.

Interestingly, when Silas woke up this morning his knees (which were by far the worst thing this past week) looked MUCH better!  I was so happy I almost cried!  We are hoping and praying that his knees will continue to heal and not flare up again.  I have so many theories as to why it got worse and then better, but only God knows! 

Thanks again for your prayers, encouragement, and reading this long update!  We are so thankful for each of you!

Silas's Skin

The continuing saga.  The struggles with Silas's skin.  Bad rashes, eczema, dermatitis, whatever name you want to choose, they could probably all apply.  I'm sure it's not the worst case of eczema ever seen, but it can be pretty bad.  Some mornings his eyes are so crusted over he can't open them.  His sheets have many blood stains from itching during the night.  He has big crusty spots on his scalp - kind of like cradle crap.  He constantly itching everywhere and I'm constantly trying to get him to stop; usually with little success.  I get super stressed out.

Tonight I was lotioning him and he started crying because the lotion stung.  I cried a little, too.  And then I yelled a little.  I shouldn't have; obviously didn't help the situation.  I just feel so frustration and exasperated and tired of dealing with problem.  Two and a half years.  We've been to so many doctors.  We've tried every lotion/cream imaginable.  Actually, we have seen some improvement.  I try to remind myself of this and stay positive, but the severity of the skin rashes still ebb and flow and these last few days have been bad again.

And then I try to get some perspective.  It's just skin.  As far as physical ailments it's really NOT that big of a deal.  So many people deal with much worse and for much longer.  I should not be this bothered by it.  But instead of having a more positive outlook, I just add guilt to my pile of feelings.

I feel like as a missionary blog, this should have some sort of positive spin at the end.  i.e.: And then I turned it over to God, and here's my spiritual insight . . . But at the moment, I'm not there yet.  I'm trying to give to God.  We pray for healing and patience and answers.  And some days, it's a struggle.