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.

Sunday Night Summary, September 06, 2015

Reading: Much of what I read this week had to do with the refugee crisis. I am slain by the overwhelming need and fighting my cynicism to believe God's people in particular will not turn away in apathy or complacency but will do one.small.thing, as Ann Voskamp so eloquently encourages in this, her one of several posts on the call to the Church to be the hands and feet and mouthpiece of Christ. 

Please take some time to read some of the links she provides, to NOT TURN AWAY but to absorb and feel and then ACT. Though not in the same way as these refugees, I have nevertheless been a person in need. I have been a person who has grieved loss again and again. Life's circumstances could have broken me and made me bitter, but by God's mercy, they have not. They have shaped me, though, forging empathy into the fiber of my being. But, I am only one person. I have limited resources, but God has given me a heart that feels things so very deeply and a voice that I am not afraid to use to solicit others to action. 

Honestly, in light of what I have learned this week about refugees, I found it difficult to give emotional focus to anything else I read. Though, I finished "For the Love" by Jen Hatmaker and will say it was the most enjoyable and resonating book I have read in a long time.

She is beginning a book club of sorts for her book, and I am hoping to not only participate but include a few of my fellow "For the Love" local friends. I would much rather discuss the ins and outs of living out our faith sitting face to face with you, a glass of wine and piece of chocolate in hand, than online staring at a computer screen. Anyone in?  I'll provide the wine and chocolate. :)

Eating: This week it was a lot of smoothies and pureed food for me. I had my first tooth extracted. First, yes, of hopefully only two teeth that will ever be pulled from my mouth. The extraction itself wasn't so awful, but the recovery has been more painful and lengthy than I anticipated. By day 3, I fully expected to be back to normal. Instead, on day 4 I am still drinking smoothies, slurping soup, popping ibuprofen every 4 hours and icing the side of my face.

The upside to this is that I was able to pre-maturely prepare one of my fall favorites, Butternut Squash Soup. Of the plethora of recipes available, this is my current favorite.  Don't let the "vegan, paleo, gluten free" labels scare you. It's absolutely scrumptious.

I don't know about you, but I am eagerly anticipating the cooler temperatures of fall for the simple joy of making soup again. I am rather fond of soup despite my family's mere tolerance of it. I suppose it is too close to a casserole concept for my family's liking. I am one of those odd ducks that just loves casseroles, soups and salads.  Everything is in or on one pot, plate or bowl. Minimalist to the core. What's not to love?

For whatever reason (and that reason NOT being that I am pregnant) I was craving an Italian Wedding Soup and so took a stab at making it for the first time this week.  While the appearance of it was rather odd due to a technical error incorporating the eggs, the taste was outstanding. Even my hubby liked it enough to eat leftovers!
What soups are among your fall favorites?  Leave a link in the comments.

Doing: Well, this wasn't one of my favorite weeks ever. But, hey, "Momma said there'd be days like this." And, I've had weeks like this past one before. I know they are inevitable. And, I know we get through them.  That's what we did. We got through this week as best as we could. 

As I mentioned, I had my first tooth extraction. It went better than I anticipated. The surgeon and his assistant are wonderful--patient, thorough, sympathetic and skilled.  I was grateful to find an oral surgeon with whom I was comfortable.

Two days after my extraction, Judah had a laser treatment. For whatever reason, he experienced more pain with this treatment than he ever has before. He screamed all throughout the treatment and cried for about an hour afterward. He was in so much distress after his treatment that he felt he was going to pass out at one point. 

The doctor brought an ice pack for his face, and Judah sat with his face directly in the air conditioning fans of my hubby's car the entire ride home, moaning and asking God why He was torturing him. 

It was not one of the more fun "mom moments" but one in which I was very grateful Judah has a mom and a dad to be with him in these dark hours, to hold his hand, remind him to breathe, assure him the pain won't last forever. And, it didn't. 

By the time we were within 15 minutes of home and passing a local ice cream shop, Judah was feeling better enough to accept our offer for ice cream. Chocolate and Cookies-N-Cream with rainbow sprinkles and gummy worms for the win!

"Medical" and "Mechanical" are two budget categories that are absolutely bleeding us currently. Since the end of May, we have had near non-stop medical needs along with issues with our vehicles. 

This past week, our Pilot was at the mechanic again. Lo and behold as Lawrence pulled out of the mechanic's parking lot after having a sensor replaced, a part that we had fixed just a month ago broke AGAIN! No kidding. He literally turned out of the parking lot only to turn right back in and leave the Pilot with the mechanic for another day. 

Thankfully, the mechanic did not charge us for this second fix, but we are researching Honda recalls to find out if this is something the manufacturer can be held responsible for.  We have had the same mechanic for years and trust his reliability and skill. We will be taking it to the Honda dealer this upcoming week for a recall on another part that has been needing fixed for a while. 

I am grateful it will be covered financially and that I have friends who live relatively near enough to provide shuttle service or run errands for us as needed. Community is a beautiful thing. And, while we often try to arrange our lives so as to not need anything from anyone else, I have found God force me into this place of need time and time again to remind me that He comes near to those who humble themselves, ask for help and are willing to receive it. 

For some of us, the self sufficient, pick-yourselves-up-by-the-bootstraps, American ideal of "I can do it by myself" is the very thing that keeps us from enjoying the rich benefits of intimate relationships within community. Being a giver as well as a receiver is necessary for robust and well rounded relationships. 

Looking ahead: It is looking like a quieter week of plodding away at school and needs at home, of rest and healing and gearing up for the fullness of a fall schedule, which for us here at Montford includes A LOT of leaf blowing!

The kids and I have the first day of our new homeschool co op, Crossroads, on Friday. I am looking forward to jumping in headlong to this new community of fellow home educators and learners. 

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.

Laser Treatment Time

Hello. This is Judah. Laser treatments are scary, but I still trust in God.  Please pray for me.

One thing I like about laser treatments is that I get to have lollipops and a $5 lego.  Once I have 24 laser treatments, I will have $120 in legos.

When I put on my numbing cream for laser treatments, I usually get to watch youtube or netflix or legoclub.

On my way there, I usually listen to my favorite CD's or to the radio on my MP3 or read a book.

Sometimes, I bring my Bible, and sometimes I bring a toy.  But, last time I brought a toy, I ended up losing it. The good thing was, it was only a hotwheel car.

At the end of the laser treatment, I am very, very excited that it is finally over. When we get home, we usually watch a movie, and I get to pick the movie.

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

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.

His Obedience, Our Reward

He bursts through the front door along with the sunshine. "Mom, we got you a blueberry muffin from Dunkin Donuts," Judah declares with a smile beaming on his red, wonderful face. Judah had blood work done that morning, a fasting blood test this time for his endocrine doctor. And, as our tradition goes, Judah is permitted a donut from Dunkin Donuts anytime he has bloodwork or a laser treatment. It gives him something to look forward to and we hope helps him endure the sting of it all.

This morning, when he walked through the front door with Dunkin Donut bag in hand, full with treats for all, I was taken a back with Judah's exuberance and joy in sharing his reward with the rest of the family. It was his obedience, endurance and bravery but our reward. And, it was his delight to share it with us.

So, it is with Christ.

Jesus was more than brave. He endured. He obeyed even unto death.

And, we received His reward. Colossians 1: 12-14 says,"... the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins.

Reminds me of these words from a song we sing at my church,

And I love you for the cross
I'm overwhelmed by the mystery
I love you for the cost
That Jesus you would do this for me
When you were broken, you were beaten,
You were punished, I go free
You were wounded and rejected
In your mercy - I am healed