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

Isms in the Kitchen Part 4 - Insights from Sir Robert

Sorry for the delay in posting our next installment in the Isms in the Kitchen series, but I was trying to tie down Sir Robert and get his take on all of this. Sometimes that can be like trying to pick up mercury – he is on the go – a lot. (Sadly all of us who grew up with mercury thermometers know that visual too well. Can’t even imagine the amount of mercury poisoning one class of 5th graders was exposed to in 1981 because Johnny wanted to show off how “cool” mercury was. It boggles the mind.)

Q – So you have isms all up in your house. How does it feel to be the priest of the home in a house full of isms?

A – Exhausting and..... An Honor.

Q – The girls are not the only ones changing their diets these days. How long have you personally been eating differently?

A – About 8 weeks or so.

Q - Why did you change your diet?

A – Well, I’m 40 – my dad died at 51 and that didn’t happen overnight. I really want to take ground where my health is concerned. My eyes have been opened since learning all we have about the girls and how food affects them, but really I started being more conscious of all this when you had cancer.

Q – That was in 2003 and we went pretty much completely organic, but this is a much deeper change. So what have you cut out or done differently in the last 8 weeks?

A- I definitely don’t do dairy – refined sugar, gluten –well for the most part, I did have a flour tortilla today. Sometimes gluten is tough to stay away from when you eat out and many of my meetings are at restaurants. I avoid MSG for sure. Processed food is something I’ve really cut out. I’m trying to eat whole foods when I can.

Q – Why did you choose to cut out these foods?

A- From all I’ve read and heard (he’s staring at me now) it seemed like it would be beneficial. I’ve really enjoyed the books, Body by God, The Ab Diet. What the Bible Says about Healthy Living and The Maker’s Diet.

Q - What changes have you seen?

A – Physically, I’ve lost 25 pounds, but honestly cycling has made a huge impact on my weight as well. I used to cycle in high school and have picked it back up in the last several months. I love it now.

Q - Do you have a goal with your cycling? (hope you hear the set-up).

A – I’d like to ride a century – a hundred miles – by September.

Q – How far are you now on that goal.

A – I’m up to 52 miles.

Q – Why is that important to you?

A – For most cyclists the first goal is a century. And it’ something I’ve never done before.

Q - How has the diet affected you otherwise?

A - I feel great. I have more energy. (This is starting to sound like a commercial.)

Q – Do you feel you can think more clearly now?

A - Do I think more clearly? – Well we’ll see.

Q – Has making this change been difficult?

A - I used to crave sugar and dairy, but now hummus and almond milk have been there to help me along.

Q - Do you feel like you had an ism growing up and didn’t know it?

A – Oh yeah. Back then people didn’t call it ADD or ADHD; they called it daydreaming and forgetfulness. The HD part, I know now is just kinesthetic processing. I know now that if I am working on something or trying to learn something, I need to be moving to do it. Sitting still for 8 hours a day doesn’t work for me. I was also always very tired. When I was about 8, they thought I had Leukemia because I would have these horrible bruises on my face. I had headaches that would cause me to throw up. Most people know them as migraines, but in the south they were “sick headaches.” They told my parents that I had a Vitamin C deficiency. I was never able to tolerate whole milk as a baby. They didn’t call it lactose intolerant back then just a colicky baby. I still to this day get car sick if I don’t ride up front. I suppose my vestibular hicky is off.

Q - What foods did you eat as kid?

A - Sugar and Milk. :) I Loved Fruit Loops and milk. (truly the breakfast of champions)

Q – What didn’t you eat as a kid?

A- I didn’t eat chicken, rice, noodles, eggs, cheese, potatoes - unless they were French fries, mushrooms, or anything of the maggot texture variety. I didn’t like steak – loved tuna fish sandwiches, though. Bacon, toast and jelly were my staples. I ate it every day of my life for 15 years.

Q – Tell me about what you eat for breakfast now?

A- Hemp Protein mixed with Almond milk, a bowl of granola, with coconut yogurt, blueberries and hot sauce.

Q – For our readers, that is not a typo. He does indeed eat hot sauce on his breakfast yogurt. Can you say sensory seeker?


Q – Back to your childhood. What about textures?

A – I didn’t like certain fabrics. I loved terrycloth and t-shirts. Church shoes were hell. No belts. Didn’t like collared shirts – especially if the material was itchy.

Q - How was it when you read?

A – I could never read during the day – nothing else could be going on. Even now in my office, I have to turn out all the lights with only the light of the computer on to be able to read. When I was a kid, I used to read the same sentences over and over again. It made me feel stupid. Then I began to believe that I was stupid. My grades reflected that – really until you taught me how to study in college.

Q – How did you move from feeling stupid to getting a master's degree?

A – Learning some study skills from you and finding my identity and self-worth in Christ versus what I could or couldn’t do.

Q - Now for the big question. Eating this way can cost more. As the one who brings home the bacon (the organic, beef, uncured, non-smoked, non-MSG-infested bacon), do you feel it is worth the dent it is making in the budget?

A - YES!

Q- Is there anything else you would like too add to your first interview?

A – Nope. I think I’m good.

This interview was conducted mostly over the phone and riding in the car (both while Rob was driving.)