The High Cost of Victory

Well, it would seem that no sooner did we post our incredible victories of this season of our life with isms, that we were asked to count the cost of such victories. This entry could also have been entitled – I temporarily interrupt this blog for a nervous breakdown – not by the children - but by the mom.

The following is a very long – it has been three months in coming – and hopefully honest portrait of the high cost of isms this mom has experienced in our journey. It isn’t meant to be bleak or harsh, but it is hard to write authentically about a “grown up melt-down” without some tinge of sadness, anger, despair, but hopefully, ultimately – Hope and Joy.

Let me start by saying that in the last three months since our last post, we have continued to see INCREDIBLE victories that I cannot wait to tell you about in another post. We have started a new type of therapy in conjunction with our other therapies and dietary changes, and as I said are seeing tremendous strides. We are MIRACULOUSLY not the same family we were a year ago. PRAISE GOD! But I truly sense that if I only share with you the great highs of this journey, then when you hit the place I hit a few months back, you may find yourself wondering if you are doing it wrong, or if you are the only one who doesn’t have the “super power” to do this unscathed. I can assure you – you are not.

About three months ago, I began to realize that while my children were excelling and exceeding beyond where I once thought even possible, I was reaching a point of no return physically, mentally, relationally, emotionally and yes, even spiritually.

In the season of my dad’s illness and subsequent death, stopping to refuel was not an option. There wasn’t margin with a dying father and two small children to stop and “be good to myself” – It was a comical idea. But because the season had an “end” I could keep pushing through when I thought I had reached my end. When we once again found ourselves in a do-or-die season of life – this time diagnosing and treating said “isms,” I remembered what it took to get through that time with my dad. So I strapped on my proverbial boots and got on the “healing treadmill.” I suppose it is instinctive to search and hunt for life when you feel your own is spinning out of control. When our oldest daughter’s ism hit a place that we were literally scared to death that she might not ever know the full joy God has intended for her (as well as our entire family), I set about this arduous journey begging for, expecting and searching for healing for her. Yes, I feel like Frodo – big feet and all.

I don’t think I was prepared for the marathon it would become. Sprinting through seasons of difficulty was manageable, but the seemingly “neverendingness” to these isms has taken a toll in ways I never thought possible.

I’ll lay it out in categories as I experienced them.

Emotionally – Isms are what they are. No one asks for them, but when they are presented to you, sometimes the package is broken, but cheerfully wrapped and you can find a way to successfully deal with it day by day. Often the packaging is wet and soggy from tears that never end because everything is always just too overwhelming. Sometimes the packaging is ice cold and won’t let you near it – no matter how much warmth you offer. Other isms come wrapped in explosives that have to be handled with care lest you lose a limb or an eye trying to unwrap it. When you receive these types of isms all at one time, the things that are said and done as the isms present themselves rip away at even the thickest skin. There is nothing more difficult as a mom than seeing, hearing, and trying not to believe the things that isms sometimes do and say. Nothing can really prepare you for how you will feel. It is shocking how much fear and anger the idea of lost hope can bring. It can be an emotional roller coaster that finds you screaming one day, crying uncontrollably the next and ultimately staring at walls wondering how you will get through another day. Then just as you think you have no more emotional fortitude, there is a spark of hope, a light at the end of the tunnel that doesn’t feel like a train, and you begin to remember what joy felt like, what hope felt like. You dare to imagine feeling anything again. It is enough of an emotional boost to see you around the next corner.

Physically – Unlike a real marathon, my journey with isms has not landed me on “Runners Weekly” but more like the American Medical Journal with the title – “Adrenal Fatigue Strikes Again.” Apparently there is a limit to the amount of consecutive stress one body can withstand and mine has reached it’s limit. Several of my very important systems, glands, hormones, etc. have decided to go on strike. While they have great sympathy for my on-going battle with these isms, they no longer feel they can adequately supply what I need. The demand is just too high. So a Venti-Decaf Mocha from Starbucks has stepped in and offered to do the job instead.  In return it has promised instant chocolate addiction, weight gain, but a smile to get through the hardest of ism days. In all seriousness, running the race to reach some sort of finish line with the most difficult of our isms brought about days in the last few months where there was no more “pushing through.” My body called it quits and demanded that I listen and obey. And so I am trying to slowly find a balance in all of this that will keep my body functioning and the isms at bay. Not an easy task and not my greatest area of victory at the moment. And before you begin thinking “Well, you just need to....” Please read the next high cost of victory section – the toll it takes on Relationships.

Relationally - One painful lesson I have learned in this particular season is that no matter how hard you try, people on the outside often just don’t get it. They are either quite certain you are doing too much or not doing enough. The response upon first sight of the ism cloaked in behavioral issues was often “You need to be stronger in your discipline – she has just got to learn that she can’t act that way,”   - as if we hadn’t already gone there and read every book known to man on daring to discipline. Another awkward moment was trying to describe how trying our days were only to hear, “That is just typical sibling behavior” – all the while knowing there was nothing “typical” about what we experienced. To these voices it was clear that I simply was doing too much the wrong way. On the rare occasion that people saw what we saw and the light bulb finally went on that we were indeed living with an ism and not a lack of discipline or overprotective parenting, we would actually get, “We thought you were exaggerating about your daughter’s condition until we saw it for ourselves.”

There was of course the ever-helpful, “You know, you need to get her medicated. You can’t live like this.”- the ultimate black hole of  “you're not doing enough.” Last but not least was the always-delightful doomsday scenario - “I saw on 20/20 where a child like this never got better. She’s in jail now.” All of these incoming voices served to make the journey I was undertaking all the more stressful and lonely. There were the dear few who, while not fully understanding our situation, offered no advice, just sincere love, prayers and the shoulder to lean on. Like the friends of Job in chapter 2 “They sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.” What a beautiful thing it is to have friends who know how to just shut up and make tea.

And then there were those who live with isms themselves – the ones who get it in a way no one else really can. This isn’t meant to sound harsh of those who do not live with isms, but like any type of suffering season, the best ministers are most often those who have walked or are walking in your shoes. It is just the reality of 2 Corinthians 4. “The God of all comfort who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”

Mentally – Ha! I have to laugh as I even try to begin to explain the high cost here. I really think that I used to have fairly witty banter in social settings and somewhat interesting things to share. Now, I mostly hope I don’t sound like Billy Crystal from “When Harry Met Sally” – “You look like a normal person, but really you’re the Angel of Death.” Nothing stirs a party more than a ragged “ism mom” babbling on about IgG’s, IgE’s and brain hemispheric delays. When you are constantly fatigued – hence the adrenal fatigue diagnosis - you find yourself saying things in public you never thought you would. I realized somewhere along the way I had lost my filter. You know the one that helps you answer the question, “How are you?” with a lovely, polite, southern – “Fine, just fine.” Well, when you are constantly paying the high cost of victory at home the answer to that harmless question becomes a game of Russian roulette depending on the day. To be fair, I think I also lost practice in things like social graces because one of our isms for almost a year has kept us under house arrest. We couldn’t go to the places where I could always refuel before due to out of control allergies. We couldn’t go out to restaurants so all meals have to made from home, from scratch with allergy friendly ingredients.  For a time there was no – “Get out and pamper yourself moments.” The ism wouldn’t allow me to leave its side even for a moment. I remember throwing a temper tantrum with Lord over my “imprisonment,” and he quickly reminded me that my “prison” was a mansion to most of His beautiful saints in the world. I was immediately humbled and begged Him to never let me go that far down the self-pity road again.

I do however dearly miss the ability to remember something – anything - from one day to the next. I find I can spout off the latest findings on neurological pathways but can’t remember what I did or whom I talked to yesterday. Lord forbid someone send me an email or phone message – most of which I think I have already responded to only to discover that I never did. A mind is a terrible thing to lose.

Spiritually – This is a tough one. In my 41 years, I have been blessed to learn more and more about the true nature of God. He has shown me what He looks like when He is forgiving the grossest of sins, what He looks like when tearing away parts of me that are cancerous, what He looks like when He asks me to wait and in return moves mountains to give me the desires of my heart – however “delayed” they seem. He has shown me what it means to share in his sufferings in death and how He blesses those who mourn. In this season He most often just reminds me of what I already know of Him. He has asked me to allow HIM to be the savior of my children, not me. He has asked me to acknowledge my limitedness and His limitlessness. He has asked me to remember that He has already WON. The Victory over all these isms is His and His alone. He has asked me to remember that the heart of a mom pales in comparison to the heart of The Father. His love for my girls and their God-granted isms exceed my capacity to understand. He has also asked me to rest in Him. This marathon cannot be run without rest, without patience, without refreshing and so that is where I am today. I watch Him heal my daughters. I watch him heal my family. I watch Him heal my broken body and my broken heart. All that I have gone through and listed both on here and in my head as I have grumbled through this process is a joke in comparison to His High Cost of Victory.  The High Cost of Victory in this – as in all things was His. I am so grateful and so humbled that the only reason I am able to perceive healing and hope for my family and for myself is because of His Great Cost of Victory.

 “Though he slay me, yet will I hope in him.” Job 13:15

Ism Friendly Curriculum

Ask any homeschooler and they will tell you there are as many flavors of curriculum as there are ice cream at Baskin Robbins - oohh the days of dairy - Anyway, ask those same families what is the "best" curriculum and you will get some pretty passionate responses. Ask a family "livin' with isms" about curriculum and you will get a WHOLE different answer - usually followed up with the phrase "for now."

To explain, I have been to more seminars than I can count on the way to best groom a future Einstein for college that include well-trained minds, copywork, Latin, intricate math skills, circus-like acrobatics when it comes to language arts and science lessons fit for Copernicus. And all these I am sure are wonderful in the rare home without an ism. In our house, however, we have tried and failed, tried again, and have finally landed on a theory that seems to work. Our educational philosophy comes from the classic - What About Bob. We are in the school of "baby steps" or so as to not give the impression we are weak on the emphasis for maturity - how about "doing everything in bite-size chunks."

Being in the dark about our isms initially served to rip every stitch of pride I might have ever had about my own abilities, creativity or sufficiency - all a good thing. Once the light was turned on, I was so grateful for the pruning season and the sheer kindness of the Lord to bring us home completely. It forced me to rely on Him for guidance and creativity. We learned pretty quickly that the sin of comparison is nowhere greater than in the homeschooling community. I wanted so badly at the end of every school year to be able to say just how many poems, soliloquies, symphonies, theorems and diatribes my children had learned. The truth was I was wincing in shame when I had to admit to myself and everyone else that we were still learning addition - for the third year in a row. But slowly, as He so often does, the Lord moved my humiliation into a place of humility, which far better served my girls. I took a deep breath and soaked in the realization that our homeschooling journey was different, slower, and sometimes even sweeter than what I heard about at the conferences. We work best in peace, joy, adaptability and making the most of every opportunity. The curriculums He led us to fit our girl's personalities, learning styles and isms so well. As with all things on this journey, we hold it all with open hands acknowledging His sovereignty over it all.

I say all this to give the disclaimer that these are the curriculums we have found work best for US. They may spell disaster for someone else, but they might be worth at least investigating if you too are livin' with isms.

This is what they consider their "seatwork."

Ellie's 4th grade curriculum
Growing with Grammar - Grade 4
Handwriting Without Tears - Can Do Cursive
Math U See - Beta
Math Skills 3rd grade
Kumon - Multiplication
Rosetta Stone Chinese
I Can Do All Things - art book
She learned State Capitals and the US Presidents

Annie's 2nd grade curriculum
Explode the Code
Growing With Grammar - Grade 2
Math Skills - Grade 2
Math U See - Alpha and Beta
Handwriting Without Tears - Printing Power
Rosetta Stone Chinese
I Can Do All Things - art book
She learned her states and presidents this year - well the first and the last president anyway.

We do Science and History together
We use My Father's World as the backbone and then often diverge from there depending on our speed and interest. We have slowed down and spent months on the American Colonization, Revolutionary War, George Washington and Ben Franklin. Just too many good books and stories to speed through them. MFW supplies the science, literature, etc. We are looking at doing Apologia Science this year - we'll keep ya posted.
And our dessert of the school day is the Narnia series by C.S. Lewis. It also serves as our current Bible lesson. As soon as I pick up on where Lewis is going or has gotten the theme, we turn to it in our Bibles and drink it in. There is not a chapter that does not represent scripture or a biblical lesson in some way. I am usually in tears during our read-a-loud-time because Aslan always makes an appearance.
The funny thing to me about hoping for an Einstein is that poor little Einstein was riddle with isms and was thought a failure for most of his young life. It wasn't until he was unleashed in an environment suited for his isms to thrive that he did. I wish I could say that my girls are thriving in their homeschooling environment. I'm not sure I am that brave, but I do feel like we have at least moved away from mere survival mode.

Ellie's View on Education

Q - What are your first memories of school?

A - Loud and a little overwhelming.

Q - At home?

A - No, at the hybrid school we used to go to in Kentucky and here.

Q - What else do you remember?

A - I remember making lots of friends and doing lots of art projects that I love and coming home with lots of goodies. I remember that the boys were VERY loud and the girls were sometimes loud.

Q - Did the noise make it hard to learn?

A - Umhm...too much was going on and I couldn't focus. And usually when I came home, I had a big tantrum.

Q - Was there anything you liked about the hybrid school?

A - You got to make new friends, arts, crafts and games, but you did have to study a lot.

Q - What about school now that you are just at home?

A - I like it better. It's quiet. You can sleep in. You don't have to wake up at 6 and you don't have to wear those collared shirts. And I take it one step at a time. In hybrid school they made me write stuff down and say that I learned it when I really didn't.

Q - You mean that things moved more quickly than you did?

A - Ummhmm. I used to take forever in my math book - like two hours and like 30 minutes for grammar. My favorite part of hybrid school was science. I liked all of the experiments. My favorite was making snow out of just chemicals.

Q - How long does school take you now?

A- 30 minutes to an hour for my seat work and then history and all that stuff till three. My seat work is math, grammar, spelling, handwriting - all that stuff.

Q - Do you have a favorite subject?

A - I think it's still science.


Q - What was school like when we first started doing it at home - before we started therapies and the new diet?

A - It was very challenging. It took me till supper time to do school. It felt like the days were longer and the nights were shorter. My sister got done around lunch time and I felt lonely.

Q - What about after we started therapies and the new diet? Was school different?

A - Yes, we mostly did therapies and a little school.

Q - Do you enjoy school?

A - Not love it, but sometimes I do. It's just something you kind of have to learn to like.

Q - What is your favorite part of our school day?

A - Narnia time.

Q - Do you mean our read-a-loud time? What do love about the Narnia series?

A - It just takes me to one world after another, and I love stories. It reminds me of the Bible. Like in the Voyage of the Dawn Treader where Ramandu had a bird that dropped something in his mouth just like Elijah. I also like the part in the Magician's Nephew where Digory was desperately wanting to heal his mother and he didn't listen to the witch. I had a dream about Aslan asking me if I wanted him to heal me and then we found out that C.S. Lewis had a dream about Aslan too. That's how he came up with Aslan.

Q - How did that dream make you feel?

A - It gave me hope.

Q - Is there anything else you want to tell people about homeschooling with isms?

A - Yes, lots of things. I kind of hold my pencil funny and it makes my hand sore and makes me not want to write paragraphs. I have this grip that is shaped for your hands so it won't get sore. Oh and about my glasses...That my glasses help me see words better - The End - Goodbye.

And Digory could say nothing, for tears choked him and he gave up all hopes of saving his Mother's life; but at the same time he knew that the Lion knew what would have happened, and that there might be things more terrible even than losing someone you love by death. But now Aslan was speaking again, almost in a whisper..."What I give you now will bring joy. It will not, in your world, give endless life, but it will heal. Go."
C.S. Lewis - The Magician's Nephew

Isms in the Kitchen Part 3 - Annie's Thoughts on Dinning without Dairy

Q – How long have you been livin’ with isms in the kitchen?

A – About probably 2 weeks.

Q – Or maybe since November?

A- It’s not November. Oh, you mean since we started Gluten Free?

Q – Yes. Has it been hard to change your diet?

A- It was hard when we started it, but it’s not now since we can find food that taste like the real thing.

Q – Do you still miss certain foods?

A - I miss cake, cinnamon rolls, oh and MILK! That is a certain one! I can’t live without milk, well I can – it’s just a certain one.

Q – Do you still get to have cake, cinnamon rolls and milk?

A - Yes, but not the same kind. They taste different, but very good.

Q – What is your favorite new food?

A - Chocolate milk – you know the Almond Chocolate milk? Mom, when I come home from the pool, do I sound funny?

Q - Sometimes :) Can you tell a difference since we changed foods?

A – Aaaahhh little bit. I can tell a difference since we tried the gluten free diet, but I can’t tell a difference when we try something if we don’t know we will have a reaction to it.

Q – Help me understand what you mean. Can you give me an example of how it feels different? How does your brain and motor feel now.

A – When I do school I feel focused. My mind is clearer. I don’t read so much backwards – when I have glasses on.

Q – Do you feel like it’s been worth it to change your diet?

A – A little bit. I’d rather be able to read and think, but have my diet back.

Q – So for now, if you can’t have both, which would you choose?

A – To read and think clearly.

Q – What would you tell another child who has to change their diet?

A – You can push through it. You can do it! Don’t give up.

Q – Has the Lord helped you through the diet change?

A – Yep. He’s helped me to push through.

Q – Is there anything else you want to say about isms in the kitchen?

A – That the food is good.

In the course of this interview, Annie cleaned her room and the living room. She also nibbled on a gluten free pancake – all in about 20 minutes.

Isms In The Kitchen Part 2 - Ellie's Culinary Point of View

Q – How long have you been Livin’ with Isms in the Kitchen?

A – Since November (2009) – Back in November I could have dairy. I remember I used to go to Chick-Fil-A and have ice cream.

Q – Why can’t you have ice cream now?

A – Because I can’t have dairy because it messes up my brain.

Q – Do you miss dairy?

A – Oh YEAH! I miss everything.

Q – What do you miss the most?

A – Phenols.

Q – What are phenols?

A – It’s kind of hard to explain in kid language. Something like strawberries and tomatoes – things that taste yummy, but kind of messes up your brain and causes you to react and not think.

Q – So you miss strawberries and tomatoes, anything else?

A – All of the above. Just everything. Dairy especially. I could live without gluten, but dairy and phenols are hard. I miss like ice cream, milk, and yogurt.

Q – What do you have instead of ice cream, milk and yogurt?

A - I have milkshakes like I have now made out of Silk vanilla almond milk, ice and allergy friendly chocolate chips blended all together.

Q – What other new foods do you like?

A – How many more questions do we have mom? I really want to watch Design Star.

Q – Just a few – so what new foods do you like?

A - The Udi Pizza with garlic, onions and meat and the new pancakes. (We just tried the new King Arthur Gluten Free Pancakes – a big winner – does not taste like corn cakes or sand :)

Q – Do you think giving up or substituting foods is worth it?

A – Yes, my allergies are better. My reactions have changed. My anxieties are better. I don’t imagine things. I still come down at night and make sure the doors are locked, though. I can be in noisy restaurants and it doesn’t bother me if people touch me. I used to melt down if I got touched.

Q – Tell me about your birthday cake.

A – It was made of yummy stuff. I don’t know what. It was dairy free, gluten free, all of the above – All the “Frees,” and I’m glad we still have some in the freezer. The icing was made with grape jelly to make a color since I can’t have dyes or anything. Mom’s best friend made it.

Q – What would you tell another kid “livin’ with isms in the kitchen”?

A – To never give up even if it’s hard, even if you have lots of meltdowns – in a few months it will get better.

Q – Anything else you want to share about isms in the kitchen?

A – Oh yes, I love “Living Without” and “Gluten Free” magazines. They are pretty and elegant. I like the way they put it together. I like that they show me new products I can have.

Q – Has the Lord helped with your isms in the kitchen?

A- Yes, He is helping me keep my self-control, even though it is hard and still is a little hard. Can we watch Design Star now?

Q – Yes. You’ve been very helpful.

A – Good!

Isms in the Kitchen

If you live in the land of isms for any length of time, you discover that it affects EVERY aspect of your life – nothing goes untouched - from the house you live in to the food you eat. One of the biggest “breakthroughs” we have seen in the world of isms is connecting the dots to the food we eat. It is only one piece of an enormous puzzle, but one that I will try to explain as best I can.

Several years ago, the Lord – as many of you will remember – asked me to have the courage to transform not only my heart, but my kitchen as well. Ellie still says to Annie, “You never got to taste Fruit Loops, but they were AMAZING!” And it’s true, sweet little Annie has grown up on organic this and free-range that. I thought I had “given up” all I needed to for my family to be healthy and to keep this ever-aging temple holy. Well, like Gideon and his army, the “reduction” had only just begun. With the introduction of names to our isms, I researched like a crazy woman (all those years watching episodes of "Quincy" have really paid off) and sure enough - there is often a direct correlation to isms and the food we eat. I know I shouldn’t have been shocked, but what I found challenging was that even foods that you buy at organic grocery stores may not be best for your body. In fact they may be just the very gasoline used to ignite a volcanic eruption in your home. That was certainly the case for us.

I will try to make this brief – no snickering – and there is probably no way I can cover everything in one post – so you will just have to keep checking in :)

Where to start – OK – A little “Isms 101” – Two acronyms that if you spend anytime livin’ with isms you will not only come to know, but will be seeing in your sleep. They are IgG’s and IgE’s – they are two responses sent out by the body’s immune system to handle what it “perceives” as an invader – key word here is “perceives” – but I’ll come back to that later.

I am a visual learner, so as soon as I realized these two would consume my life and thought process, I had to find a word picture that made it easier to keep them straight. IgE stands for Immunoglobin isotype. Translation – these are the “soldiers” immediately sent out to fight at the first sign of trouble. They cause an immediate reaction in the body that is EASY to see. They cause the body to itch, sneeze, break out in hives, etc. It is what everyone thinks of when they think of an allergic reaction.

IgG stands for Immunoglobin antibodies, and they are the soldiers that are a little slower on the uptake. They don’t clue in immediately that trouble is on the horizon. They are only sent out in defense mode after something has gone through the GUT. The reaction to these perceived invaders can take hours, or even days to show up and often it may take the form of bowel issues, sleep issues, or more importantly behavioral or cognitive issues. They are most often referred to as food sensitivities or food intolerances. Again, these are only my ways of trying to keep these two straight – I don’t claim to have the technical end of it just right, but you get the idea. IgE – Easy to see – IgG has to go through the Gut before you see it. In our home, we battle both IgE and IgG reactions, and by reactions, I do mean like Chernobyl.

If you are still with me after that – you deserve a medal. OK, moving on... You may have noticed in the grocery store more and more items that are labeled “Gluten Free” – Unlike the days of “fat free” and “sugar free” marketing, “gluten free” is not a way to fit into your high school jeans. It is targeted to people dealing with Celiac’s Disease and families livin’ with isms. Gluten is a protein that is found primarily in wheat, barely, rye and sometimes oats. The reason families with isms buy an inordinate amount of gluten free everything is because gluten can cause some pretty severe IgG reactions. It is just one of the many foods that do so, but it is one of the heavy hitters. I could do a whole post (and probably will) on the affects of gluten.

But for now, what you have all been waiting for – our list of ism-contributing foods: drum roll please....
LOL – I just listed them all and then deleted them, because it would have taken up two entire pages – you heard me right – two pages of reactive foods. So instead, I will give you the categories that I have found (after every kind of testing you can think of, and some I am sure you did not).

We are still waiting to get our IgE testing done, so these are only our IgG categories, but rest assured, we spot those IgEers pretty quickly and therefore stay away.

*We have removed the Gluteney grains - especially wheat. There is an uber-long list of things that contain gluten at the bottom of the post.

*We avoid Cow's milk (all the proteins including lactose and whey - not just casein that many families steer clear of).

*We also stay away from Molds - which include things that get moldy or are fermented like mushrooms, vinegars, soy sauce, ketchup, etc.

*One category that really sends us into Post Traumatic Stress Syndrome is MSG (or more accurately anything containing free glutmaic acid.) I twitch just thinking about it. Even "natural foods" can contain free glutmaic acid under a different name. Much like a KGB secret agent of the Cold War, if you see words like Carrageenan, or Yeast Extract run the other way, comrade. Just know that they affect the body the same way MSG does. Our rule of thumb is if we have to google the word, then we should probably stay away from it. Again, I will tackle the evils of MSG and it’s founding father - free glutamic acid in depth another day.

*Two other categories that send us running for the hills are foods high in Histamines and Phenolic Compounds- I wasn’t the president of the science club for nothing - Some foods naturally produce more histamines than others. For instance shellfish, chicken, turkey and tomatoes love to produce histamines. Any plant-based foods contain some level of phenolic compounds. They just have varying levels. Berries and spices tend to be high in phenolic compounds. We cannot even go to restaurants that serve spicy foods right now – the reaction is just too severe.

*We also boycott Smoked goods (and consequently places that have people who smoke) because of a chemical called Toluene. Is it just me, or is this starting to sound like I am doing an episode of “Good Eats?”

Anyway, when all is said and done – and I’d be happy to explain all this in more detail and am sure I will later, but didn’t want to make your eyes bleed first time around – we end up with about 10 foods that are “safe” in our world right now. That is why our diet looks like we live in Siberia. No offensive to the Siberians, but must livin’ with isms mean I have to be a MacGyver in the kitchen every day? Evidently it must. In all honesty, as difficult as it is to make 98% of all our food from scratch - and as bland as toast – gluten free toast of course, it is SO worth the dividends.

The goal is that as our daughter’s gut heals, we will begin rotating in some formerly frightening foods so that her menu doesn’t look like an episode of “Chopped” with the same mystery ingredients over and over again. And yes, we watch a lot of Food Network – or at least we used to :) I also realized that I have included a lot of Russian references in this post – who knows what that is about.

To give you a visual, here is a sample menu that I left for Rob when I was out of town one week – Yes, I was actually able to leave for a few days and the nuclear meltdowns were minimal – healing is real!

Our SPD Friendly Menu

Remember basic rule of thumb – when in doubt – don’t try it – not worth the fall out.
Every meal should have a large protein, a grain, and something of color (veggie or fruit).

Wednesday night – Roast in grape juice, garlic, garlic salt and salt, onions. Side of broccoli, roasted red potatoes

Thursday
Breakfast – SPD breakfast casserole - egg (scrambled with hemp milk), ground beef, hashbrowns, and onions – start it on the stove and then broil in the oven.

Lunch – Leftover Roast beef sandwiches with Udi bread, fruit – almond butter and apples. *Don’t use deli meats for lunch they have WAY too much MSG in them to be safe for your world – Sorry.

Supper – Fried Quail (again your only seasoning option is salt and garlic salt, garlic or garlic powder), Sautéed cauliflower, green beans

Friday

Breakfast – pancakes – Better batter flour mixture – it has rice flour, tapioca starch, etc.; add oil, baking powder, dash of salt and sugar. There is the maple syrup and a new thing that is supposed to be good for hypoglycemia – the Agave Nectar.

Lunch – Leftovers

Supper – “SPD chili” – Stew meat browned in oil and brown rice flour and then allowed to simmer for a long time *the longer it simmers the easier it is to eat. Organic chili beans (they have NO MSG or pseudo MSG) remember you have to read ALL labels. You really can’t trust anything from a can, package or freezer without reading and rereading it. I brown the meat (that has been marinating in grape juice and garlic salt) with chopped onions and oil, add the beans with their juice, add corn flour to thicken, and a little purified water if needed. Add minced garlic in the last 20 minutes of cooking.

I hope this little jaunt through our “ism-filled kitchen” has been worth getting through all the lingo. And sadly – this is just scratching the surface.

http://www.msgtruth.org/avoid.htm
http://www.gfcfdiet.com/SalicylatesGFCFfood.htm
http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
http://www.godairyfree.org/Food-to-Eat/Food-Label-Info/Dairy-Ingredient-List.html
http://www.allergy-details.com/mold-allergy/mold-free-diet/
http://www.alcat.com/
http://www.greatplainslaboratory.com/home/eng/home.asp

Invisible Miracles

To the naked eye there is nothing miraculous or extraordinary about this picture. In fact, it might appear rather mundane. A veritable snapshot of Americana - young and old alike waving the red, white and blue in the middle of the town square as the locals float by in 90 plus degree heat. The entire town comes out to participate for just one moment of Mayberry every year. Most everyone is completely oblivious to the miracle that stands beside them.

This is not a post about the virtues of our American culture or of small town life or even of our amazing liberties. This is instead a moment as a mom to thank my God for the miracle that this picture captures.

It has only been in the last year and a half that we could appreciate the intensity of this miracle. Had we not known the complete opposite of this moment for so many months, we might have missed the sacredness of it.

Zero in on the young girl with the silk black hair standing less than a few inches apart from the people around her. She is standing at the front of the line watching the boisterous crowds go by. It may be 99 degrees outside, but her summer scarf is tightly wrapped for security purposes. The revelers standing next to her cannot possibly see or imagine what a holy moment this is for her and her family. How I wish I could have given them my eyes to see that moment for what it really was. They all would have left there blessed beyond their wildest imagination.

If I could have given them the eyes of this mom who is Livin’ With Isms, they would have, as I did, have to turn away and catch their breath from the beauty of it all. If they could have seen this same girl just a few months prior, they would never have believed it possible. They would have seen this girl and her family living like hermits to avoid the pain that so much “fun” could cause. They would have been horrified to witness this stunning young girl curled up on the floor begging not to go where it was loud, or people might touch her or where she would have to stand and wait. They would have been dumbfounded at how such a bright and promising young girl could appear so childlike and regressive when everyone around her was celebrating.

Had I the presence of mind, I would have asked for the power of Elisha in 2 Kings 6:17, when he asked the Lord to let his terrified servant see the invisible army that was waiting in arms to help them fight their battle. It was an Invisible Miracle just like ours. There on a hilltop stood a vast army of angels waiting to fight alongside Elisha and his servant. Elisha could see them because he had seen these kind of invisible miracles before. He knew the power of the unseen to affect the seen. He knew he was not alone in this battle. He knew that God would not have put him in such a position without power and certainly not without back up. It was his joy to pull back the curtain and let his servant see what he saw. “And Elisha prayed, "O LORD, open his eyes so he may see." Then the LORD opened the servant's eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.”

This Fourth of July was such a moment for us. We stood there together after months and months of therapy, tests, counseling, praying, fasting, doctors, tears, screams, fits, and trusting. We have believed this army is there, battling it out with us even when we cannot see them. They were there in the middle of the town square, helping my little girl use all that she has learned and enjoying the healing she is experiencing. They were there. More importantly He was there. He was there encouraging her every moment that He was healing her and that these were moments meant for her enjoyment.

I am truly in awe of my daughter’s determination and perseverance. She continues to fight even on days that don’t look as miraculous as this one. I am in awe of a God who speaks to her heart in ways that I couldn’t possibly to assure her it is all worth it. I am in awe that He pulls back the curtain and allows me to see what is not seen and enjoy the mystery of His kindness. Perhaps there were hundreds of invisible miracles that day and I was only privy to one, but that one continues to bring me to my knees and beg for more.

An Interview with Annie

Q - How long have you known you were Livin' With an Ism?

A - Two days - wait - no - how long have we known it? What is an ism again?

Q - An ism is something that challenges us, but that God is helping us through. Let's redirect. Tell me what it's like when you read a book?

A - It's kind of complicated, especially when there are BIG, BIG words.

Q - What makes it complicated?

A - When I read words they wobble, jiggle and bounce off the wall.

Q - Does that make it harder or more fun to read?

A - Makes it kind of hard to read, especially if my mom wants me to do it.

Q - Are words the only things that wobble, jiggle and bounce?

A- Mmm.... Sometimes numbers and also they flip upside down.

Q - What does your brain tell you when they flip upside down.

A - My brain says, "This is a different word, so just guess what it means."

Q - And do you guess what it means?

A - Sometimes I ask mom or look at the pictures to figure it out. Or I just get it wrong.

Q - Do you like to wobble, jiggle and bounce around yourself?

A - Yes! That was an easy question.

Q - Why do you like to wobble, jiggle and bounce around?

A - It makes me get more attention and people laugh.

Q - Do you ever get in trouble for wobbling, jiggling and bouncing?

A - No, but sometimes my mom says to "slow my motor down," which means not to be so hyper. (said with a giggle)

Q - What are you doing while we are doing this interview?

A - Making sure the Monopoly Deal cards are in full sets.

Q - Do you like organizing things like that?

A - Umhmm... It makes me kind of focus.

Q - What other things do you like to do that help you to focus?

A - Umm... Organize, cleaning up, coloring, doing art and gymnastics.

Q - How does your brain feel after gymnastics?

A - It feels really sharp. I feel proud because when I do something right, I'm proud I did it.

Q - Is it ever hard to find the words you want to use?

A - Sometimes.

Q - What do you do when that happens?

A - I think very hard and then it comes back to my mind. I have to search in my mind for the right shelf and then I have to get it down.

Q - Is that ever frustrating?

A - Sometimes. It's frustrating because I really want to say the word I'm looking for and it might take a long time to find it.

Q - Do other people ever get frustrated when it takes you a long time?

A- No. I just say, I kinda forgot the word and they say, "OK" (She has now taken a break from organizing the cards and has done pull ups on the chairs)

Q - I notice you are counting the cards now, how come?

A- Counting helps me pay attention too. Math is my favorite subject in school. (Now she is drawing the number of cards in each stack in the carpet with her finger.)

Q - What do like most about yourself?

A - Ahem......I'm smart. That I'm cute - nooo wait - I'm funny. I'm a great servant and hostess.

Q - What do you think makes you wobbly, jiggly and bouncy, smart, cute, and a servant?

A - My God.

Q - Tell me about your relationship with God?

A - When I was young I didn't have a relationship with Him because I did a lot of bad stuff. I said all my sorrys and He forgave me and I got baptized.

Q - Does God ever help you when you are feeling frustrated or wobbly, jiggly or bouncy?

A - Sometimes He tries to help me be nice and calm. He helps to be smart and not pretend that I don't know what you mean.

Q - Is there anything else you want to say or share on your first interview?

A - Did we put goofy in there?

Q - No. Would you like to end with the word goofy?

A - That and that I don't like certain textures in my hands or on my body.

That concludes our first interview with Annie, who has consumed three gluten free crackers, organized a deck of cards and rearranged furniture during the course of this interview.

An Interview with Ellie

Q - When did you first know you were livin' with an ism?

A - Since I was three.

Q - How did you know?

A. Well, you see, things just didn't seem right. My meltdowns would last longer than most 3-year-olds. Remember they were like 5 hours.

Q - Yes, I remember. What do you remember feeling about yourself then?

A - I felt sad and a little bit embarrassed.

Q - Were meltdowns the only thing that didn't seem quite right?

A - I totally remember tearing things up, especially in my room. Because my body wouldn't hold it all in and I had to do something. Other kids would spill things and not get upset, but I would always have a big tantrum if that happened to me.

Q - Why would spilling something cause you to have a tantrum?

A - It was really wet, cold, and smelly (because juices smell) and it didn't dry quickly so I just started crying because I didn't know what to do.

Q - Why couldn't you stop crying quickly?

A - My brain kept screaming, "IT'S COLD, IT'S SMELLY, IT'S GOING TO SEEP INTO YOUR SKIN." I couldn't hear the part of my brain that tells me "This is fine. This is no big deal." I couldn't hear that then.

Q - Were you ever afraid of things?

A - I was scared of the dark because I imagined things. And I also have a thing called silent migraines that sometimes scared me. I didn't know what they were then. They are these little dots you see that squiggle like worms and come at you.

Q - Are you afraid those now?

A - No, not really. I've gotten used to them because I know they are caused by my allergies.

A - Water really frightened me too. I would not put my head in water.

Q - Why were you afraid of water?

A - Because I was afraid it would get in my eyes or that I would sink.

A - I was also afraid of bees. In fact all types of bugs, especially worms. I was even afraid of my books. I thought the pictures would come out at me.

Q- What other things bothered you at three?

A - Loud noises made me feel trapped, alone and tired. Textures, like jeans and turtle necks would make me feel hot, sweaty and not able to hold in my emotions. Toys that moved frightened me because I thought they would jump out at me.

Q - So textures, fears, meltdowns all bothered you as early as age three. Did you think everyone felt this way about those things?

A - No, I knew everyone else did not feel this way about these things. I felt embarrassed, left out and like everyone was angry at me.

Q - What did you feel good about yourself at age three?

A - That I told the truth. I LOVED to do art. I like that I can remember things that most people forget about at age three. I could remember mom's shopping list or directions just by hearing them. I liked to watch the news only (the morning news shows). I didn't like cartoons. I called Sesame Street - "Stress-A-Me Street" cause that's how it made me feel. I didn't like Veggie Tales either.

Q - That was also the time when you memorized the entire movie of The Sound of Music. What did you like about that movie?

A - They sang. There were lots and lots of children. There were no cartoons. And there was a fun person that came to live with them.

Q - At age three, what do you remember about your faith?

A - I had a dog named Gigi who died back then and I would say that Gigi died on the cross like Jesus because I thought everyone who died - died on the cross.

Q - Did you understand what Jesus' death on a cross meant at age three?

A - Not the whole picture, just little glimpses.

Q - Did any of that help you when you were feeling alone, embarrassed, or trapped by your feelings?

A - Sometimes. My brain can't think right now because my hypoglycemia is in control right now.

We need to end our interview for now to eat because hypoglycemia makes Ellie's brain sometimes refuse to cooperate if she doesn't eat on time - and it's time.

Hope this is helpful.

What Are Isms?

Over the last couple of years, our family has discovered that we have been given a plethora of "isms." They have unveiled both our challenges and our strengths. Our hope is to honestly show the ups and the downs of livin' with isms. While the labels to our "isms" may not match yours, perhaps our struggle for peace and understanding will. We will throw out the names of our isms from time to time, but will rarely focus on them since knowing what "it" is - is only half the battle. The reality we have found is that the name of the ism does not define who we are or what the Lord has planned for us. We greatly live in the hope that while our "isms" help to shape us, they do not limit us. They are simply God's tool to sharpen us.

This is our family - isms and all. We sometimes make great steps of faith and find amazing victory despite our isms. Other times we feel as though we are slipping in the mire of the grip of an ism, but despite it all we remain a family deeply committed to each other and to the Father who allowed the isms to influence our lives.

Our prayer is that none of the journey will be wasted and that anything we have learned along the way, will be of use and encouragement to others.

You can look forward to writings from Ellie, a talented, bright, intuitive, 10-year-old who has lots to say about her isms. You will hear from Annie, a warm, loving and caring 7-year-old who wants to help everyone else who might have an ism. You will get a bird's eye view into Rob's world as the head of a household full of isms. We feel the need to include the occasional picture or anecdote from our dog, Chloe who is - well- just too darn cute not to include. The majority of posts will probably come in the wee hours of the night from the mom, Denise, who has learned that Livin' With Isms pushes you to the worst and best places of yourself.

So look for our future post while we are Livin' with our Isms.