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. 

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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. 

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 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. 

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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.

To honor Rare Disease Day, 2017

Initially, the OB said he was bruised from the birthing process which I found odd because he was pulled out along with his twin, via emergency C-section.

The next day, however, we met our pediatrician who proceeded to clarify for us that our son, Judah, was not bruised but born with a permanent birthmark called a Port Wine Stain (PWS) covering 40% of his body, most of his face and skull, and carried with it the possibility of an accompanying rare syndrome known as Sturge-Weber Syndrome (SWS).

Five days after Judah was born, we drove to Johns Hopkins where skin, eye, and neurological evaluations confirmed Judah had two of the three markers for SWS: skin and eye. Neurological involvement was then unknown and since has been ruled out as much as medical knowledge can provide that assurance.

It is still essentially unknown if Judah will remain free of neurological involvement, but to date we are grateful God has not asked us to walk through those particular hardships.

Nevertheless, the challenges we have faced these past twelve and a half years have all drawn us closer to God, to each other, to our community of friends and fellow Christians who have more than done their part in shouldering this burden with us.

And by burden, I mean the surgeries, the procedures, the endless quest for a cure, the countless crossroads we have come to where decisions have had to be made on Judah's behalf--something that has at times evoked significant anxiety, self doubt and near paralysis as a mother.

But, never, never do I or have I seen or felt Judah a burden. He is such a delight to our family and all who know him.

He is a joyful, outgoing, intelligent, creative, opinionated, strong, compassionate little man who feels deeply, loves sincerely, sings sweetly, perseveres, has so many dreams for his future, is ambitious, and a conqueror.

I love this kid whose rarity exceeds his diagnosis of SWS and extends into his person-hood, his infectious smile and warm hugs.

I look at his red face everyday, left side more full with hypertrophy from the genetically mutated proliferation of blood vessels, and see nothing but a handsome gift from God.

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.

Sandy and the Giant Jesus

Staring at a fish tank can be mesmerizing and calming, but after an hour it's just boring. Judah and I sat in the basement of Wilmer Eye Institute waiting for the doctor to give Judah his annual eye exam. With no magazines to read nor electronic device with which to play, we were left with the fish. Does anyone know why a fish would suck up stones from the bottom of the tank and then spit them out? Maybe he was as bored as we were?!

Finally, we were called to an exam room.

If you've not had the opportunity to be a patient at a teaching hospital such as Johns Hopkins (and I hope you have not), it's like a party in the room. You've got your technician or nurse who does all the work, the expert doctor, the one whose name is on your bill, and then a myriad of others, some residents, some interns, some fellows. The doctor could have his plumber in the room, and the patient would be none the wiser.

After strange person #2 examined Judah, he asked, "Mom, how many doctors do I have to see before I go home?" We were lucky today. Only 3!

Reading charts, eyes dilated, the brightest lights on the planet laser focused on his eyeballs and a doctor, who likely has coffee breath looking intently at your eye through a lens that magnifies that bright light even more are the hoops Judah has to jump through before he is allowed to leave.

Now, don't misunderstand. I am so grateful my son is able to receive this kind of excellent, thorough care. Recently, Judah learned that Johns Hopkins is considered one of the best hospitals in the world. Since then, he's repeated several times, "I am so glad I get to go to the best hospital in the world." And, we are, too! Truly.

I wouldn't be recounting our visit today in such a flippant manner had the outcome of Judah's examinations been different. We received good news today. The surgeries Judah had as a baby are holding strong and keeping the condition in his eyes stable for now. We are grateful.

After a much longer visit than I anticipated, it was the dinner hour, and Judah and I were both in need of nourishment. I needed caffeine for the trip home. Judah needed pizza and root beer. :) So, we trekked down the hallway to the hospital cafeteria.

Fixing my coffee, I bump into someone and politely say, "Excuse me." Out of the corner of my eye, I wonder if I know the woman I bumped. We all have these moments. You see someone out of context, out in public somewhere and you wonder, "Do I know that person? I think I know that person. I do know that person. I wonder if she saw me. I wonder if she recognizes me."

And, it's at this point you have a decision to make. Do I initiate a greeting, wait to see if she initiates, or bury my head in my purse to look for something while I dart around the corner pretending I never saw the person?

God is growing me in making the most of these opportunities, especially when Judah and I are at the hospital in part due to the memory of our first trip to Hopkins. Judah and Tucker were only days old, and here we were at a world renown hospital. I was incredibly overwhelmed with our new reality. I wasn't but several feet inside the doors of Hopkins when a woman approached me who was accompanying her young daughter in a wheelchair with tubes coming out of her nose. She offered her smile, a warm greeting, reassurance that we were in good hands and a hug. I am convinced she was an angel sent from Heaven to me that day. I have never forgotten that experience.

And, now I want to be that angel to someone else, daunted by their new found reality of illness, weakness, and even imminent death.

So, I approached her. Not remembering her name, I asked her if she had at one time attended IUP and worked in the Writing Center. Indeed she did. I confessed that I thought I knew her but didn't remember her name. She graciously replied, "Sandy. Did you used to be blonde?"

After introducing Judah to her and a very brief catching up, I asked what brought her to Hopkins. She nodded to the right in the direction of an elderly couple, "My mom."

I gently touch her arm and ask her mom's name.

"Paula."

It must have been so fresh that she couldn't even utter the diagnosis.

Sandy was the deer in the headlights I remember being that first day we visited Hopkins.

I looked Paula and her husband in the eye and back to Sandy and said, "Well, I don't know specifically what to pray for, but I will pray for you on our way home tonight."

And, with that Judah and I left.

Instead of walking straight to our car, I took Judah to see the giant statue of Jesus that is so well known at Hopkins.

Jesus Statue in Johns Hopkins Hospital, a photo by integrity_of_light on Flickr.

Rounding the corner, I ask Judah if he remembers seeing this.
"No, mom. Why is it here?"

"I'm not sure what the history of it is, Judah, but maybe it's here to remind all the sick people and the smart nurses and doctors who the real healer is, who the Great Physician is." I replied.

And, with that we found a corner near the book where people write out their prayers and took a knee to say a prayer for Sandy and Paula and Paula's doctors.

I remember working with Sandy. She was an upbeat, perpetually positive person. But, I didn't know if Sandy knew the Creator who gave her such a disposition. Nearing the end of my stint as a writing tutor, not knowing if I'd ever see Sandy again, I asked her if I could share the "Four Spiritual Laws" with her, a booklet that takes a person through the Gospel.

At the time, it may have been just information, but I don't know what God's done in Sandy's life or heart since then. I don't know if she's run into other Christians who have shared with her the life giving truths of the Gospel. But, I do know she's likely feeling desperate tonight. And, I'm praying that if she hasn't made Christ her Savior and God, she will.

So, next time I'm staring at fish waiting for the doctor to call my name, I will remember Sandy and know that all timing is God's timing and that there might just be another divine run in waiting for me around the corner.