Bitter or Better, Our Choice

I rounded the corner at the end of the hallway and realized I knew where I was. This was a familiar place. When it dawned on me, I looked to my boys, now 13, and with a smile, pointed to these two chairs and said, “Boys, I nursed you in those chairs and on the floor of one of the exam rooms in the back. Initially, I recounted this to them as a fond memory, filling them in on a time they were very much a part of but would have no remembrance because they were just babies, days old as a matter of fact. 

But then, as I took a seat to wait once again for an ultrasound to be taken of my oldest’s (by two minutes) eyes, the tears welled up in my own eyes. Surprised by this rush of emotion, I tried to quell the sobs that were building, to no avail. There in the pediatric division of Wilmer Institute at Johns Hopkins, I sat and sobbed. My sons inquired; a nurse walked by observing and offered us dum dums, the quintessential, “This will make everything better” offering to all children in every hospital or medical clinic worldwide, I am convinced. The external stimuli jolted me out of that traumatic place the sight of those two chairs took me, and I was able to compose myself enough to decline the sweet nurse’s offer of comfort in lollipop form. 

• 
  

It’s been 13 years walking a road I never could have anticipated traveling. When we were first told about our son’s diagnosis of Sturge Weber Syndrome and all the potential havoc it could wreak on his, and subsequently our lives, we were shell shocked. Entering Hopkins’ clinics just days after my twins were born introduced us to a world of specialists, medical jargon, tests, procedures and surgeries we would not know anything about should God have spared us from this lot. But 13 years later, I can see how much we have all grown through what God chose for us. I can see we have learned so much; we have grown in empathy and informed compassion for a whole segment of this world that we may have otherwise overlooked or even ignored. I can see our endurance for life’s challenges, curve balls, unexpecteds and unknowns has been strengthened. 

• 
  

 I want to take this opportunity to encourage anyone who’s been thrust upon a life path you never would have chosen and can’t get off of. Or maybe you did run after & welcome a certain life trajectory, but it’s all new and proving to be harder than you thought it would be, with costs you aren’t sure you’re prepared to pay. Time really is an important player that you will either thank or regret depending on what you cultivate with that time. 

It may be cliche, but the truth nevertheless remains. Circumstances can make you bitter or better, and it’s time that will deepen what you chose to cultivate. Let me be a voice in your life today urging you to fight to be shaped for the better by whatever it is that is pressing down hard on you right now. Be vigilant about uprooting those bitter seeds that want to grow deep in your soul. They often sound like, “This isn’t fair. I deserve better than this. I hate my life. Why do things go well for everyone else but me? What have I done to deserve this? How will anything good come from this?” 

I’m not saying that there won’t be struggle or that I never thought these things or still don’t sometimes think these things. But, let’s together remember we have a choice in what we’re going to do when these thoughts come. We can choose to nurture these embittering thoughts or reject them and replace them with God’s truth. He has promised to work all things together for the good of those who love Him. He has promised to fulfill His purposes for our lives, and as those who love Jesus and have given our lives to Him, we can trust His purpose is to prosper us and not to harm us. It might look oh so different than we could ever have imagined, but He is wise. He is good. And He will sustain us even through the darkest of times. 

• 
  

We received another diagnosis yesterday for my son, one that likely has been there since he was born. And despite the numerous eye specialists who have spent hours, that could likely amount to days if added up, looking into the depths of my son’s eyes, this anomaly was not discovered until yesterday. It’s likely the cause of his extremely poor vision in his one eye, at least according to the doctor we saw yesterday. Honestly, who really knows? 

I could be tempted to anger over this, but for 13 years, I have sought to cultivate a firm belief that God is my son’s Creator, Sustainer and his ultimate Physician. And He reveals what He wants and keeps hidden what He wants hidden even to the “Best of the Best.” And because I’ve cultivated that truth over a long period of time, I do not have to get angry about this potentially missed diagnosis. I do not have to wonder if we could have preserved better vision in that eye had this been discovered earlier in his journey. I can fully trust that we have sought God throughout my son’s whole life for help with his needs. We have followed through on what God led us to do, the doctors to whom He led us. And we can have confidence that though we undoubtedly have not walked this out perfectly, we have a God who is perfect in all His ways even when His ways seem to run counter to our finite wisdom. For 13 years, I have imperfectly but genuinely cultivated trust in God, and I’m not going to stop trusting Him now. 

Today, I’m beckoning you to do the same.

Sunday Night Summary, August 30, 2015

Reading: A friend (thank you, Jen Fisher) allowed me to borrow her copy of Jen Hatmaker's "For the Love," and I am so glad she did. This book. This woman. I love it and her. I love the journey God has taken her on in discovering how to truly love Him and people well. I love that she is not only willing but also incredibly gifted in telling the story of her journey and all that she has learned along the way. In her early 40's, Jen Hatmaker has a wealth of wisdom mixed with a lot of humor to offer in her latest release, "For the Love."

From blog world this week, I read this post by Ann Voskamp at A Holy Experience, the heart of which has been challenging me significantly, causing me to ask myself, "How am I really living out the good news that Jesus is and declared through His life, death and resurrection to ALL people, those inside and outside the church?"

Make time to read this all important, incredibly relevant post of Ann Voskamp's. Let this paragraph whet your appetite for the entire post:

When we are against abortion but are for the cutting of social safety nets, when our political agendas are loud but our daily schedules are pretty quiet about serving people different than us, when we get up on our soapboxes about morality but don’t get out of our comfortable boxes to make real friends with those who live a different lifestyle —— we look like we’re more about pro-birth than we are pro-life, we look like we’re more about self-preservation than community transformation, we look like we’re more about judgement than Jesus.

The life of Jesus would radically suggest: The most conservative in theology, should be the most liberal in loving.
The life of Jesus would radically suggest: Don’t advertise your beautiful faith without advertising your broken-down faults — because those broken-down faults are the exact reason why you need your beautiful faith.

Both Jen Hatmaker and Ann Voskamp, in their vastly different yet uniquely beautiful writing and speaking, articulate so many things for which my heart beats loud and hard. These women use strong words and better words than I seem to be able to put together to communicate so much that rings true for me in the walking out of my faith. I am grateful for their diligent pursuit of the gifts God's deposited in them and sacrifices they have made to see those gifts enjoyed and benefited from by others, far and wide. 

Eating: I scored a glut of re-fried black beans at BB's several weeks ago, and have been making a layered taco dip with them that has been a huge hit at several summer gatherings we've had to bring a food dish to.
Here is the ever so easy to put together layered dip, a spin on the traditional taco dip.

1 can re-fried black beans 
Sour Cream or Greek Yogurt (your choice; I use greek yogurt)
Guacamole (homemade or store bought, your choice)
Salsa (same as above)
Shredded Cheddar or mozzarella cheese 

Simply layer the above ingredients and serve with your favorite tortilla chips. It's delicious!

Running out of quick breakfast options this past week, I had to resort to making an overnight french toast. Pioneer Woman's recipes never fail me. I looked up an overnight french toast recipe from her, and I was again pleased. Try it. You won't regret it. http://thepioneerwoman.com/cooking/cinnamon-baked-french-toast/

Doing: Many returned to school this past week, and so did we. Though, I have learned over the last 5 years of doing this home school gig that a gentle easing back into school goes much better for us than jumping into a full schedule from Day 1. As such, I begin a little earlier than some of my com padres and affectionately call it our "Soft start."

We only took on about half our subjects this week and even then, only completed four school days out of the five. Midweek we took the day off for one final girls' day for Bella at a friend's house who lives right on the waters of the Chesapeake Bay.

My friend, Jill, has gathered Bella along with a handful of other girls Bella's age at her house several times this summer and throughout last spring to spend time with the girls and teach them all things domestic arts related. 

This last girls' day, Jill's focus was spending time with God. Jill graciously allowed me to lead a small time of teaching the girls from what I have learned over my life time about developing, sustaining and strengthening one's relationship with God through Bible reading, prayer and journaling. 

I have to say these are the kinds of opportunities that absolutely make me feel so alive and purpose driven. I love talking about my relationship with God. I love teaching others, especially girls and women, about spiritual things. It was by far one of the highlights of my week, especially the time we had with the girls, talking about what they did and/or learned after they practiced some of the things I taught them. 

We had several doctors' appointments this week. Do I say that a lot? I feel like I say that a lot. sigh. The kids and I all had dental appointments. The kids managed no cavities for which I gave much thanks. I, however, did not fare so well. 

I am telling you, I am the most ardent brusher/flosser in this family, and I always end up the one having the most dental procedures. sigh again. In the midst of scheduling two different teeth extractions, I now have to get a filling to boot. Seriously?  I am ready to have them yank all my teeth and fill my mouth with dentures. I'd have a new party trick at least. 

We enjoyed a more fall-ish feeling week weather wise, and are beginning to see other signs of fall like dried, brown leaves already coating our yard and spiders spinning some rather impressive webs right outside our windows at night. 

The kids and I enjoyed one final "Fun Friday," with some of our home school buds again at our friend, Jill's house. Jumping off her pier, playing "King of the Inter-tube," and eating take out pizza was a great way to celebrate the end of summer and our first week of school simultaneously.

I had my own unintended celebration, winning at my neighborhood Bunco that night. Woot!

I put in just under 10 miles this week running, less than I want but more than nothing. And all my runs were under a 9 minute/mile pace for which I am thrilled. I am just grateful to be out there. 

Oddly enough, one of my favorite things to do all month is my big grocery shop at a discount store 50 minutes from my house. I wake up at 6:30 a.m. on the first Saturday of the month typically, am on the road by 7 a.m. and arrive to BB's as they are opening their doors at 8 a.m. I spend 4 hours grocery shopping and love every second of it, except for maybe the 120 seconds I spend in the deep freezer. That's not as much fun.  But, this grocery store fills my freezers, fridge and pantry for about a quarter of the cost of shopping at any of my local grocery stores. It is so worth the time and trip in this season of my life. And, I get a solid 6 hours all by myself. I catch up on podcasts I want to listen to. I sit in sheer silence and breathe a little deeper. I pray. I love it. 

Saturday afternoon, I attended a baby shower my church hosted for the Greater Baltimore Center for Pregnancy Concerns.  I had never been to a baby shower like it, and was so grateful for the ways in which my church seeks to play a role in a number of ministries reaching out to and meeting the needs of communities outside its own reach.

Along those lines, as a family we attended a special evening potluck and service at our church tonight that gave attention to the various international missions folks from our church have been on and/or are still a part of. My soul was lifted and enlarged to hear about the activity of God and the unity of His Spirit across the world, specifically in the Dominican Republic, Guatemala, Scotland, Sudan and Russia.

Looking Ahead: I gotta say that I am fighting to look at the week ahead with a cheerful outlook. The heavy circumstances of various friends and family are weighing on my heart tonight in addition to my own little family's needs for this week ahead.

Our truck barely got us home tonight, dash lights indicating several things, more things than we already knew about, needing our attention. So, we need to get that taken care of. 

I am scheduled for my first tooth extraction on Wednesday. I cannot tell you how much I am not looking forward to this. The thing I keep consoling myself with is the thought that maybe, just maybe, I might lose a pound or two due to not being able to eat solids for some time while I heal.

And, hey, because this is how we roll around here...why don't we just end this banner week with a laser treatment for Judah. Friday afternoon, we would love your thoughts and prayers. 

Sunday Night Summary, August 16, 2015

Reading: This wasn't a super exciting reading week. What little time I took to read, I spent it in a book entitled, "Seizures and Epilepsy in Childhood, A Guide," by John Freeman, Eileen Vining, and Diana Pillas.  Published by Johns Hopkins Press, it was a book recommended by Bella's neurologist. Admittedly, I did not get very far into this book before wanting to put it down. Not exactly a page turner, but something I feel I need to read to best understand what is happening in my daughter's brain. 

The definition of absence seizures, the type of seizure Bella has is thus, An absence seizure, formerly called petit mal, is a very special and uncommon type of seizure.  It starts suddenly and without warning.  The child displays a glazed look and stares.  She doesn't know what is happening and usually cannot later recall things that occurred during the seizure.  Occasionally, there is a little eye-blinking or head-bobbing.  The episode usually lasts seconds, occasionally as long as fifteen seconds, and ends as abruptly as it started.  When the seizure ends, the child is immediately alert.  There is no confusion afterward.  These seizures may occur many times a day and are often mistaken for day dreaming."

Thankfully, Bella has never been hurt during one of her seizures, and they do not last longer than a few seconds.  Nevertheless, we are still trying to work on controlling them through medication and other means. 

Another book I continued this week was a Bible study on the prophets of the Old Testament by Nancy Guthrie, entitled, "The Word of the Lord: Seeing Jesus in the Prophets." I read to the end of Jeremiah this week and started reading the book of Daniel. 

Watching: More exciting than reading about seizures, LA and I started a new Netflix series called, "Chef's Table." This series ropes me in on many levels: the food, the psychology of each chef featured and the journey they have taken to arrive at the status of a world renown chef.  

We have only watched two of the six episodes in this series,but I wonder if I already watched my favorite episode, the 2nd, which highlighted Chef Dan Barber.  Aside from his near constant, foul language, his passion for flavor and as a result for the ways in which food is grown and soil is cared for really resonated with me.

Lawrence had a meeting one evening this week, so the kids and I watched "Harry Potter: Goblet of Fire."  The boys have read devoured the entire Harry Potter series over this past year. It has provided much fodder for imaginative play and thoughtful discussion with our kids about good vs. evil, what the spells in Harry Potter mean (I am totally counting this as a Latin credit for my boys!), about magic and the way it can appropriately be viewed as entertainment but also inappropriately applied when one tries to gain control over someone or something over which only God Himself has control. 

On family night, we brought out a classic to watch with the kids, "Chariots of Fire."  Competitive running for the glory of God versus one's self glory is one of the themes of this film and why I love it so much. "When I run, I feel God's pleasure," a statement made by one of the film's main characters, Eric Liddell, is a sentiment I share. 

My children did not share my appreciation. Sigh. They were bored and respectfully bit their tongues throughout the movie so that I alone could enjoy it. 

Eating:  We enjoyed one of my summer favorites this week: Tomato Pie. You don't have to love tomatoes to love this savory pie.  It seems I was the last of my friends who I know also love this dish to make and enjoy it. Here is the recipe link:  http://www.home-ec101.com/tomato-pie/

Doing:  We continued with musical practice with the performance scheduled for September 27th.  J and T are both working on speaking parts, and B is working on a special dance the 7 and 8 year old girls will be doing. 

Judah had his annual follow up with his eye surgeon. After many tests, pictures, dilation and bright lights shone in his eyes, Judah was sent off with the great report of stable eyes.  We are so grateful. 

Providentially, we were at Hopkins the same day a friend of ours' step father was admitted for brain surgery. Judah and I had the opportunity to take some small snacks to them and spend a few minutes talking and praying for God's peace and healing.

Hopkins is a "home away from home" for us, an oddly comfortable place for us to bring a familiar face and hopefully the presence of God and His goodness to those who might find themselves there. 

This past weekend, we had three different sets of friends who were there for one reason or another. It's not a place of ministry I would have ever chosen for myself or my kids, but it has become a place where God has shown me so much of Himself, His provision and many mercies. It is a place in which I am grateful our family can serve and bless others in ways we have so richly been blessed. 

We enjoyed lunch dates, play dates, and more swimming this week.

Bella had the opportunity to have her hair cut with a friend which was so fun for both girls. My only regret is not getting this done at the BEGINNING of the summer rather than at the end. Duh!

We continued with our Trust Based Parenting class, the third of four sessions we will have. I am grateful to be exposed to another way of thinking through and responding to my (and others') children's behavioral challenges.  If nothing else, it is growing in me more empathy, compassion and understanding that people, like books, cannot be judged by their "covers." 

It was so refreshing to be at church this morning; I needed to hear truth and laud truth after the day I had yesterday. A conflict between LA and me spiraled me into a web of lies that I pondered and perseverated on until it literally wore me out physically. By the end of the day, when we were scheduled to have a family over for dessert, I was "stuck" in bed. I crawled in bed at 6 and slept heavy for 2.5 hours. When I woke, I was postured so differently, level headed and reasonable, patient and willing to be entreated. 

I am not much different from a child, I suppose. I need to have proper rest, exercise, good eating and my meds. all on board to function anything close to normal.

And, here's the thing. The conflict remains unresolved. Honestly, I don't know how it is going to be resolved. I don't even really know what needs to happen, who needs to move on his position. But, LA and I are united again to persevere in grace with one another. We are committed afresh to keep fighting for peace and further unity, and that alone is a huge victory or at least a huge victory for us.

This morning, we listened to a message our pastor boldly delivered on self deception. It happened to Saul. It happens to all of us. His big idea was that self deception is not in itself evil, but rather the means by which many evils are done.  

I topped off the week running a 5K at a local vineyard. It's a race I did with a group of girlfriends last year and had so much fun. This year for a variety of reasons, all the girls who registered to run with me couldn't make it. So, my hubby and kids came with me to cheer me on and watch me run.  

It was a hot run and not the time I was hoping for, but an opportunity to run nonetheless. And, I am always grateful for each time I complete another run; I know I am not owed any of those paces. But, boy do I love running!

Looking ahead:  This is the last week of summer vacation for us. We will have our "soft start" to school on the 24th of August. So, I am sure I will pack in as much fun as I can possibly muster amidst the ordinary needs of life.

Wrist Pain is My Gain

Every morning, I try to take some time to sit and read from God's Word. I wipe the sleep from my eyes with a steaming cup of coffee, cream only please, and stare out the oversized, sliding glass doors to our stone porch, chicken coop and woodsy back yard. I love it. 

One morning recently, I turned to Matthew 28 and read, 

Now after the Sabbath, toward the dawn of the first day of the week, Mary Magdalene and the other Mary went to see the tomb. And behold, there was a great earthquake, for an angel of the Lord descended from heaven and came and rolled back the stone and sat on it. His appearance was like lightning, and his clothing white as snow. And for fear of him the guards trembled and became like dead men. But the angel said to the women, “Do not be afraid, for I know that you seek Jesus who was crucified. He is not here, for he has risen, as he said. Come, see the place where he lay.

So they departed quickly from the tomb with fear and great joy, and ran to tell his disciples. And behold, Jesus met them and said, “Greetings!” And they came up and took hold of his feet and worshiped him. Then Jesus said to them, “Do not be afraid; go and tell my brothers to go to Galilee, and there they will see me.”

My heart thrills when it sees the red words, imagining the women's stunned delight to see Jesus post resurrection.

He's ALIVE!

As I read, however, and try to fully engage emotionally with this remarkable passage, my wrist burns with pain. The pain has moved a few inches up my arm since the last time my husband asked me about it. And on this morning it is distracting me from fixing my mind's eye and heart's emotions on the glories and reality of Jesus's resurrection. Rather, I find myself imagining all the things that could possibly be wrong with my wrist.

My imagining persists and within less than a minute, I am meditating on how young I will be when I receive the cancer diagnosis. You see, anyone who has died in my family, died from cancer. I think it's only a matter of time for me to receive such a sentence. 

I start mentally playing out a scenario where none of the few medical specialists I have seen about my wrist catch the cancer. I end up fighting a short battle and am dead before I can leave notes for all my children's rites of passages and secure a spouse for Lawrence. These meditations come so quickly; I am far too familiar with them. Can you tell?

A second scenario pops in my head of finding cancer early enough to do something about it. But, what am I going to do? What medical facility will I choose? Doctor? Conventional or alternative medicines and treatment?  How much will we be willing to pay?  How much time will we give to my health and a cure?  Will we send the kids to school?

Yup...this all happens in a flash. These are the musings that start my day. It takes just minutes, if that.
The mind is amazing, isn't it?

The Holy Spirit is more amazing and kind.
He gently stops my runaway train of unhelpful ponderings and prompts me to turn to the Psalms. 

150 chapters to choose from, I make a simple, straightforward choice because, really, I have had enough of complicated for at least 30 seconds.  I pick today's date, the 6th. I read Psalm 6 and in reading, my attention and heart are fully captured. I become enraptured afresh with my God who loves to lavish good gifts on His children and is profoundly aware of the personal details of my life.  

Be gracious to me, O Lord, for I am languishing;
    heal me, O Lord, for my bones are troubled.
My soul also is greatly troubled.
     But you, O Lord—how long?
Turn, O Lord, deliver my life;
   save me for the sake of your steadfast love
For in death there is no remembrance of you;
    in Sheol who will give you praise?
The Lord has heard my plea;
    the Lord accepts my prayer.

That God would prompt me to THIS Psalm on THIS calendar day with the crazy thoughts swirling about in my mind is no coincidence. God is real, friends. And, He wants to speak to us in real ways, in ways that are practical and personal. 

This prayer of petition and praise reminds me that my Heavenly Father determines my path here on earth and I can trust Him. My mind flutters on faster than a hummingbird's wings trying to anticipate and plan for every possibility--but God comes and quiets me. 

His awareness of me quiets me. 

His love quiets me. 

The pain in my wrist is still present and persisting but I have turned to God. I look to Him for each next step.  I trust He will be gracious and gentle with me. He is in control, working all things together for my good.  I don't have to be smart enough or educate myself in order to be well taken care of.  I am in His arms, that are not only loving but all knowing!  

He knows exactly what is going on in my body.  He can heal me. He can show me the healers whom He may want to use. I believe that He will preserve me that I might praise Him, magnify His power and declare His reign over all things and His love that is like no other.

Perhaps, friend, you are in similar circumstances. Your body, mind, soul or all three are in some sort of turmoil or pain. Your mind races with what to do, where to go, who to talk to, how to find answers and peace.
Go to God who is gentle, wise, patient and loving toward His own. Open up His Word from which He longs to reveal Himself to you. Allow yourself to be quieted by a renewed revelation of His love for you.

______________________

Sometimes God leaves us to mysteries, medical or otherwise. We have to wait and trust. But sometimes we receive answers and solutions to problems. 
After seeing a hand specialist about my wrist, it seems I have what is called "de quervians" which should improve over time by wearing a custom made splint to immobilize my wrist. 

The Unexpected Gifts of Chronic Pain

I just ended treatment with my chiropractor of the last 3 1/2 years, and I started sobbing. 
Yes--sobbing. 

Chronic pain has a way of taking you to a place of desperation and humility like very few other things can.  So when you find someone who relieves that pain even in minute ways, you give sincere thanks to God above and you think long and hard about ever parting ways with said care provider.

But, it was time. 

I have had pains creeping, now constant, in other joints without relief or any guess as to the cause. After waiting, praying, talking with others and trying once to leave, it came time to confidently end treatment with my current chiropractor in order to try yet another specialist with the hopes that a new set of eyes on my scans, my history and me will perhaps gain me more ground in recovering a pain- free body. 

But, I wonder often if my quest is a worthwhile one. How much money should I spend?  How many different specialists should I see? tests should be done?  Self doubt enters in and I beat myself up, (figuratively because you know, I'm kind of already feeling beat up enough physically) with thoughts of others who have "real" chronic pain (the kind that has a diagnosis). I think, 
I must just be a wimp or overly sensitive or too attune to my body.  
I'm too high-strung, and my character flaws are actually the root cause of my physical ailments. 
I think too much about myself and my body. I should pour myself out more into the pains and problems others are facing. 
I need to toughen up and deal with it; I am just getting older and this is life. 

And, you know what? All these thoughts MIGHT actually be true. But, it is of little consequence really because whatever the source of my (or your) pain might be, it is for us a context from which to live desperate.

Desperation is likely not on anyone's list of New Year's resolutions. It's not something most people aim for, pray for or welcome into their lives. But, out of desperation comes the sweetest intimacy one can experience, the most genuine experience of Immanuel, God with us, the One whose birth we just finished remembering and celebrating. 

We so often want to do anything and everything we can to rid our lives of pain whether it be physical, emotional or otherwise. We want to dismiss it, deny it or mask it but not press into it, feel it fully and allow it to just be present without answers or remedy to take it away.

But, one thing I have learned over the last seven years of  living with pain is that this thing that I would swiftly kick to the curb if I could, is the very thing that keeps me ever so close to Jesus. It is one of the most pronounced tools God uses in my life to draw my heart closer to His, to experience His abiding love for me, His mercy sustaining me, His ear bent to listen to my cries for help, His hands extending to be that help I need.

The pain that I often wish I could numb is the thing that keeps me from being numb to others' pain. In its height, it heightens my awareness of others' suffering. It fills me with great empathy. It fuels passionate prayers on behalf of others. The thing that I think is stealing my life away is actually what is making me live it more fully, more deeply, more keenly aware of what is worthwhile and eternal.

Today I am seeing a new-to-me doctor with the hopes that he will help me discover the causes and cure for some of the chronic pain I experience.  While I still hold out hope to lose the pain, I pray I will never lose the unexpected gifts pain has given me. 

Are you living with chronic pain, physical, emotional or spiritual?
I would love to pray for you.
No need to write specifics if you are not comfortable doing so; you could simply leave a comment of, "Yes," and I would be honored to pray for you today. May you, too, see and relish the unexpected gifts of chronic pain. 

Health is a Gift

Sometimes I am lulled into thinking of health as a given in this life.  We go a week or two or an entire month--which is always and usually, only December simply because I have set a boundary around that month of not scheduling any doctor's appointments unless emergent--without having to see a doctor. An entire season or even two may pass without any of us catching a virus or other infection of any sort, and I begin to think health is ours for the taking.  This week is reminding me it is not. This winter has reminded many that health is not a given. It is a blessing and in many parts of the world, a mark of the privileged.

At the outset of this week I had four doctor's appointments scheduled. As the week has ensued, it looks like I will be making a fifth appointment.  Only one of these appointments is routine; all the others are for some kind of ailment.  And, even the routine check up was with a doctor I see an hour's drive from my home because she specializes in a pain disorder I have.

I do not feel sorry for myself. And I do not want anyone reading this to feel sorry for me or my family. I mention all of the above to draw out a point that health is not a given in this life. Not just in my life but in any life.

Health is a gift.

God grants this gift ultimately, but uses genetics, our diet, fitness, environment and/or medications/suppliments/oils/vitamins, etc. to sustain this gift.

For so many around the world, pursuing health is not an option. Needed medications are not affordable or available. Doctors or otherwise knowledgable medical persons are not accessible.  Environments are polluted or less than sanitary.  Nutrition is not optimal because the funds to acquire quality food are lacking.

So, when I waited an hour in the doctor's office today and was tempted to complain or be frustrated by the long wait, I was grateful for that nudge from God that reminded me that my complaint would stem from a life that has only known privilege and blessing, wealth, abundance and even, relatively good health.

Lemon Chicken Soup

My mom served this soup to us over Christmas vacation which proved to be timely as all of my kiddos and my husband have come down with some kind of respiratory virus in the past week. It is kicking their little behinds. I made the soup twice this week! I think the first to get sick may be on the mend given his complaining tonight at dinner, "All we have eaten this week is soup, soup, soup."

Here is the original recipe with a few of my additions:

2 Tablespoons of olive oil
1 large onion, chopped
2 large garlic cloves, finely chopped
1/2-3/4  teaspoon of pureed ginger (or you can grate some fresh ginger which would be even better!)
2 carrots, diced
2 stalks of celery, diced
1/2 large red pepper, finely chopped
8 cups chicken broth
2 cups bow tie pasta
2 cups chicken, cooked and diced or shredded
2 Tablespoons fresh lemon juice
2 tsp. lemon zest
4 cups of fresh baby spinach

Sautee onion in olive oil for about 4 minutes. Add garlic and ginger and sautee for an additional minute. Add carrots, celery, and red pepper. Sautee vegetables until crisp-tender.  Add chicken broth and bring to boil. Turn heat down and simmer for about 20 minutes with lid on top. Add bow tie pasta, chicken, fresh lemon juice, lemon zest, and spinach.  Allow to simmer until noodles are al dente and spinach is bright green.  Salt and pepper to taste.

Balance

Balance.  

We’d all agree we need it. We’d all agree it’s something to strive for in life.

I wasn’t born for balance. I am wired for extremes it seems.  Swinging from one end of the pendulum to the next is something very familiar to me no matter the context. But, I am making concerted effort at finding balance in my life. The irony of that statement is not lost on me. Note: “concerted effort” connotes extreme.  Even in my trying to find balance, I operate from my tendency toward extremism. I find this comical at best, frustrating, defeating and hopeless at worst.

Since July, the same month we moved into our new home, I have been experiencing a physical hardship that is perplexing to many.  The skin on my eyelids, lips and a small orbital spot on my inner elbow has all been red, itchy, burning at times, flaky at other times, inflamed, swollen and mildly to wildly painful.

I have seen the dermatologist twice, optometrist once, read online forums, and consulted friends and family. I have tried various creams, facial washes along with washing regimens and leaving it alone. I began taking a probiotic and even have applied a stinky oil, called “Neem Oil”. It smells like garlic! I haven’t made out with my husband in months!  L

Could it be allergies? Maybe.  Could it be autoimmune? I think it might. Could it be something in our home and/or property that I’m responding adversely to? Yes, yes it could. Could it be stress manifesting itself in a rather painful, ugly form, declaring to all who set eyes on me, “This woman is way over her head in life and needs H.E.L.P.?” Probably is.

These are all the things I have heard as I've polled the field. And, here's where my mind goes...
I could see an allergist who would likely set up an appointment to do allergy testing. What if that's not conclusive? He may ask me to try elimination diets. What food would I eliminate first and how many do I eliminate before I conclude it's not a food allergy?

I could see an infectious disease doctor or an immunologist who would prescribe his own battery of tests. More appointments. More wait and see.  And, what if it is autoimmune?  I'm not going to hop on prescription medicine before I try a more natural approach via diet and lifestyle changes. And, what might that entail? How long would that take before I would be willing to try prescriptions?

What if it is something in my home that I'm allergic to?  What then? Air purification? Water treatment? Mold remediation? Sell our dream home and move?

My mind is spinning at this point and balance is NOWHERE to be found.
So, stress then is a very likely candidate. Nullifying all the other possibilities? No, but certainly compounding the problem.

Oh, this vicious cycle I can find myself in whenever dealing with unknown health issues or any unknown really.

God has been kind and persevering with me over the years, though, and I think there's been some movement toward a more godly, balanced response to unknowns. It is probably still not my "knee jerk" response, but I'm moving closer.  I push the "stop" button on the thoughts with which I can barely keep up, take a deep breath, and  pray. I affirm that God is in control and I am not, that He loves me and will not withhold His good from me.  I ask Him to reveal JUST the next step to me and provide what I need to take it.

And, then I do all that over again. and again. and again.


**I began pecking out this post a week ago, at a “breaking point” with my eyes. I was hurting so much physically and really having a difficult time persevering with it in my soul. I needed to get typing. It’s a catharsis for me.  I did see my general practitioner this week who thinks what I have going on with my skin is not a systemic issue because it’s so localized and specific. So, he suggested I try one of the creams that had worked temporarily for me before, along with taking fish oil by capsule and using vitamin E oil topically.  After 5 days of this regimen, my skin is feeling and looking much, much better. I’m grateful.

Judah's pituitary stimulation test

We did this nearly 4 years ago. We woke our kids up out of their sleep, ushered Tucker and Bella to various sitters and told Judah that we had to go to the hospital for a big test. Different from when Judah was 3 yrs. old, this morning he knew a lot more what those words entailed.

I was anxious to say the least about how waking up to this news would sit with Judah. Fearful that he'd break out in fitful tears and pleas of dissension or inwardly struggle with bitterness toward us for not giving him more time to process, I waited to see his response. But, I also asked a lot of people to pray for us, too.

Those prayers were heard and answered today, exceeding our expectations.

We are grateful to so many of our friends and family who prayed for this test and who have walked this journey with us all these years. We do not take it for granted at all. We are so blessed. And, in this past year as I have begun to welcome Judah into the reality that others pray for him, he has expressed his own gratitude as well. He has said often to me, "Please tell people to keep praying for me" or "I like when people pray for me."

Along with your prayers, many of you have played in supporting roles by keeping our other two monkeys for us while we attend to Judah. I cannot say thank you enough. I pray for you each and every time, and I trust God is using all of this for everyone's good. He's always doing 1,000 things at once.

So, today's test for those who like to know details involved an IV catheter placed in Judah's arm. Something new this time as compared to last time was a device called the "accu-vein" (or maybe that's the manufacturer?). In our pictures below, you'll see one has a red light hovering over Judah's arm. This machine detects de-oxygenated blood, veins, and helps the nurse find the best vein for whatever procedure she is doing. We all thought that was pretty cool and had a fun time exploring the arms of everyone in the room.

There are no pictures of Judah having the catheter initially placed because that was "all hands on deck" time--one nurse trying to get the catheter placed in just the right spot, another nurse holding Judah's arm ever so still, my hubby holding Judah on his lap as I was talking Judah through his emotional response to the pain, reminding him to take deep breaths, encouraging him to keep still, and commending his courage.

Aside from the actual "stick", Judah did not cry for the rest of the test, nor did he cry at the news of having to have the test done. My boy grows braver and more mature each time.

Along with maturity comes the switch from rewarding him with donuts to giving him a $5 limit on Legos of his choice. Given today's rather lengthy test and intensity of it, we felt it was worth at least $15! ;)

So, he chose "Kai's Blade Cycle" and worked on that for almost the entire 3 hours. Once he completed putting that together, he was able to use the computer in the room to access internet and watch videos from Legoclub.com, his latest obsession. On days like today, it's very helpful to have a kid obsessed with something such that it will hold his attention for 3 full hours...on an empty stomach I might add.

Judah mentioned a couple times throughout the test how hungry he was, and we even heard his stomach growl, but overall responded really well to not having anything to eat until 1 pm today! I didn't make it, however, and had to sneak out of the room to grab some breakfast and coffee mid-morning. I think I'd rather have a blood draw than have to fast. Seriously. And, my buddy did both this morning and did so in such an exemplary way.

It is a joy to see Judah grow in these contexts. As difficult as they can be and as weighty as the health issues are at times, I see God using it to grow my son in character and maturity and courage and probably other things that I will only see later down the road.

He engages with his care providers with confidence and maturity. I want to believe that for some of his nurses and doctors at least, Judah is some sunshine in their day. The care providers we interact with treat some very sick children who can be incredibly affected by their ill health in heart breaking ways. Judah doesn't have an easy lot by any means, but he has been relatively very fortunate, and I want to believe brings some joy and hope to the care providers with whom he interacts.

We had great nurses today, and let me tell you what an incredible blessing that is and difference it makes in how Judah, and I would guess any child, responds to these circumstances. I have immense respect and great affection for pediatric nurses and doctors especially. They are a special, special group of men and women. If you are one and reading this, thank you, thank you, thank you! I think you could have one of the most challenging, at times heart breaking jobs on the planet. I pray the rewards far outweigh the costs to you.

So, here are some photos from our day. You can click on the image to see all of them. I'm relieved we're done with it, and elated that it went so well. Now, we wait for the results and pray for a miracle.

Pituitary Stimulation Test, 2012

In my shoes (which happen to be from Target clearance racks).

Yes, my shoes are indeed from the Target clearance racks. I will spring "good money" for the sneakers I work out in, if you consider "good money", $100. But, otherwise, the majority of my clothes are hand-me-downs (thank you, kind sister-in-law!) or from Target, the thrift shop, or discount department stores like Marshalls.

Where I don't spend in clothing I do spend on food and health care. Some of my spending in this area of life comes from necessity. We were entrusted with the care of children with chronic medical needs. I, myself, have chronic medical needs, and that has forced our hand in where we spend a lot of our money. Nevertheless, there is room for me to be frugal and thoughtful about spending in this area and that's what I want to discuss in this post.

My husband and I are fortunate to have health insurance provided to us via LA's employer. I know health care is a hot topic and in the process of change and potential overhaul, but for now, we are still carried under my husband's employer. Is it the best plan out there? That's a rather difficult question to answer, and I would love to have some time to do some research on it. But, at the moment, I'm trying to teach my kids, get dinner on the table nightly and keep my home in some semblance of order and cleanliness.

This week was a difficult one because it involved several decisions for our family's health care.We found a great pediatric dentist when my children first started needing one. At that time, she was covered by our insurance. Three years ago, she stopped participating with our insurance; it was a sad day when we learned this fact. We LOVE our pediatric dentist. For locals, it's Dr. Diana Capobianco with Growing Smiles. Not only is the office super kid friendly, now with 5 IPads loaded with games, every employee from the hygenist to the billing clerk is friendly and helpful. To boot and most importantly, Dr. Diana knows about Sturge-Weber Syndrome (SWS), my sons' diagnosis, and how to deal with Port Wine stains (PWS) in the mouth, which my son also has.

I have opted to have my children remain patients at Growing Smiles, but I have had to be thoughtful about managing our health care costs. So, instead of going every 6 months, I have had two of my cavity-free children go for cleanings and check ups only once a year. I have one child who is prone to cavities, and now apparently after this week's visit, two children (sigh).

After this week's check up, it was discovered that one of my children needs a filling. Add to that life's curve balls; this week one of my sons chipped his adult tooth, and it needs repaired. Decision time.

Instead of having our pediatric dentist do the filling and repair, I decided I would have my husband and my dentist, who is 100% covered with our insurance, give it a try. He's a great dentist as well, just not specialized in pediatrics. Nevertheless, I have confidence that if my children cooperate well enough, he is a very capable dentist and will do a great job. He doesn't have the lovely air balloon murals on his walls or IPads in the waiting room, but he'll get the job done. Compromise is the name of the game when managing health care costs.


This was difficult for me because it meant that I had to tell our pediatric dentist that, "Hey, we can't afford the care we think is best for our children, so we're going to go with what we feel is second best." Ugh. That was humbling for me. For some, this might not be an issue. But, for me to tell a health care provider, "I can't afford your services" whether it is for my children or myself is very difficult for me.

At least in the United States and in particular, Maryland where I live, options for how to pursue optimal health are abundant. In my own journey toward good health, I have sought out professionals or services not covered 100%  by my insurance. I have made changes to our eating habits and lifestyle that are costly. And, I continue to face decisions on how much to spend and how far to take this pursuit of health.


How much is enough?

We have a heart to give as much as we possibly can to the advancement of God's Kingdom albeit through supporting the ministries of our local church or through organizations other than our local church. We want to support teenagers wanting to do summer missions' trips. We want to fund adoptions for those pursuing them. We want to support many of my friends doing campus ministry among college students, the "game changers" of our future. And, I recognize that the decisions I make for our health care directly affect how much is available to give to these and other important causes.

So, here are a few (humbling-at least for me) ways I've attempted to do the best I can in this area:

1. Ask for samples. I have had to regularly call my primary care provider (PCP) to ask him to set aside samples of a medication I take daily. Recently my dose was increased, and the way it works with insurance, I would be paying the price for two prescriptions in order to fill my dosage correctly. That may sound complicated; it is. So, my solution has been to call my PCP once a month or so and say, "HI, this is Briana again calling to see if you have any samples of ....that you could set aside for me?"  Thankfully, they have samples in stock and are kind enough to set them aside for me thus far saving me a ton of money!

2. Take time to think about the treatment plan. Unless one is facing an emergent situation, such as an asthma attack, TIME is on your side. I've been in numerous situations where we have a problem, the doctor has a solution but it's costly. Rather than cower to the pressure of the "expert" telling you what your best course of action is, ask for time to go home and think about it. Do research. Talk to your nurse/doctor friends if you have any. Especially with issues that affect children, in talking with other parents, you may find someone who's been down the same road and pursued a diffferent and less costly treatment plan. Facebook and other social media can work for you in this way! Use it. Remember that doctors, while most sincerely want only the best treatment for their patient, can still be driven the insurance companies who pay them, which are undoubtedly driven by the bottom line!

3. Say "No, we're going to wait and pray." This may raise an eyebrow or two, but I can attest to the faithfulness of God when I have trusted my "gut" and followed this course of action--no action. Thankfully, in our country we still have the freedom to go against medical advice, especially as it concerns our children. There are doctors advising all kinds of treatments for children these days--anti-anxiety medications (ask me how I know this!), other behavioral modification medications, and even flu shots. Now, I am certainly not opposed to pharmaceutical interventions when they are necessary, and at times they certainly are necessary and helpful. But, I do believe pharmaceutical medicines are quickly and  incredibly over prescribed before time has been given or other options considered.

As a believer in Jesus, I know the greatest Physician of all time. I know the very ONE who fashioned and formed my very being. I know the ONE who knit my children together in my womb and knew of them before I even did. I have access, FREE access, to the best, world famous, as my son would say, Physician of all time-GOD. There are times we need to manage our health care costs by managing our hearts to remember Who really is the One who heals us and sustains us.

Money doesn't grow on trees, at least not in our back yard. So, I've had to learn ways of managing an area of significant expenditure in our family. I have more to learn, I am sure. But, I hope what I have gained along this relatively short journey I have been on for the last 8 years may benefit someone else.