An Unexpected Trip to CHOP

There is never a good time for an unexpected medical emergency.  Tomorrow morning LIlly and I will be headed to CHOP to see Dr. Campbell.   No, it's not quite time for Lilly's next VEPTR expansion surgery (that's scheduled for late July).  But one of Lilly's incisions from her revision (rod replacement) and expansion surgery in January has been troublesome this time around and it has finally reached the point where medical intervention is essential to protect her hardware and her health.

The lower part of her left-most incision has been very slow to heal this time around.  When Dr. Flynn (the doc who did her surgery in January since Dr. C's schedule was overbooked due to a leave of absence he had taken late last year) swapped out her lower left rod for a longer portion because she had grown enough to exceed the current rod's expandability, he seated it on her pelvis in a way that caused it to protrude more than it used to.  I noticed it right away once her dressings came off--she just had more of a bulge there than she ever had before.  But her incisions seemed to be healing up nicely and her post op pain had subsided mostly at the same pace as usual.

About 2 months after her surgery, however, once we thought her incisions were finally closed up tight enough to do tub baths again and possibly get her back into her weekly swimming lessons with Bella, one night before bed Lilly asked me to check her incision because it felt "wet" when she had touched it.  I took a look and, sure enough, noticed a tiny little hole opening up on that lower left incision.  We sent pics to CHOP, and they prescribed a round of antibiotics and daily dressing changes.  Tom is an amazing wound care specialist, and he took care of the daily dressing needs on her back while I offered moral support and hugs to Lilly from the front.

Several weeks later, the wound--which really was a pressure ulcer on the incision site from the rod pressing up against her skin from within--was finally beginning to look healed up again.  Again, we were just about to resume tub baths and swimming lessons.

And then this past Friday night Lilly asked me check her incision before bed again.  When I looked I was horrified (though I think I showed great restrain and didn't alarm Lilly!).  What I saw was that the pressure ulcer had again disintegrated, only this time I could clearly see silver hardware exposed. Gulp.  Not good.  At all.  Rather than freaking out (which I was doing inside), I calmly said "let's go downstairs and let Daddy take a look at this."  Tom--always much more calm than me--cleaned the wound and re-dressed it, after taking a few more pictures.

We emailed and texted the pics to CHOP, and by Saturday we knew we were scheduled to come in to see Dr. C Monday morning in clinic, with probable clean out surgery later in the week.

So, yesterday and today I am scrambling to get logistics in place at home so Bella is well cared for while I'm away with minimal impact on Tom's work schedule and Anna's schedule.  Medical emergencies are never convenient, but I woulndn't have chosen this week had it been up to me--Anna has two AP exams this week and Bella has her end-of-year orchestra concert.  My mama's heart wants to be here to support Anna through a stressful week and to cheer Bella on because this child has worked SO hard on her violin this year, seeking exrtra help every Thursday at lunch time from her wonderful strings teacher, Ms. Cordell.  Violin is-in my opinion--one of the hardest instruments to  learn that first year, especially for a child with poorly developed motor skills and visual motor coordination.  (Bella's perseverance on the violin could be a blog post all on its own...may it will be sometime soon!)

Stay tuned, I'll keep things updated as we learn what day her surgery actually will be and what it will entail.

For now, however, we are praising God that other than having a hole in her skin that exposes her hardware, Lilly feels fine!  No signs of infection at all--no fevers, no redness, no drainage, no pain.  That is a huge blessing.  And praise god with us that we have medical insurance that fully covers all of her care and we have the resources to cover the extra travel and hotel expenses are managable, and we have Tom's family not far away when we're at CHOP. And we have fabulous neighbors and friends at home who step in the help care for Bella while I'm away.

Praise the Lord with us and please pray for wisdom for the doctors and speedy healing and return home for Lilly.

Adorned: Living Out the Beauty of the Gospel Together

 "Woman to woman.

Older to younger.

Day to day.

Life to life.

This is God's good and beautiful plan."

Nancy DeMoss Wolgemuth today released her newest book entitled Adorned: Living Out the Beauty of the Gospel Together. This wonderful and insightful volume is centered on the mandate found in Titus 2 for older women to train younger women as they live out the gospel, and provides a comprehensive analysis of these verses and very practical applications of them.  I found the book to be encouraging, convicting, thought-provoking, and inspiring, and I highly recommend it to any woman aspiring to live in such a way as to "adorn" the gospel of Christ. 

Throughout the volume, Nancy encourages both older and younger women to be intentional not only in pursuing, grasping, and treasuring the sound doctrine of God's Word, but also in allowing their lives to intersect.  She states "The Biblical model of older women living out the gospel and training younger women to do the same is vital for all of us to thrive."  

Nancy reassures older women that perfection is not a requirement: "what you have gleaned of God's nature and ways throughout the course of your life, however inadequate you may feel, is worth passing on to others, particularly to those following behind you...The soundness of your faith is based on the soundness of the One in who you've placed it, not on your perfect record in walking out that faith."

The book is divided into three main sections: Part I is entitled 'A Woman Under God," and addresses the need to have an accurate understanding of who God is--sound doctrine--as well as the need for women to help one another.  Part II is entitled "A Woman Under Control," and addresses the importance of women, young and old, living in such a way as to show reverence for God and His purposes.  Part III is entitled "A Woman Under Her Roof," and addresses the joy and fulfillment of women living out the beauty of the gospel in their homes.  

It would be easy to assume that a book like this is only for women who fit some sort of man-made stereotype, perhaps they are happily married, or stay-at-home moms, or seem to have it all together.  But truly this book is for every woman--young or old, married, single, or divorced, homemaker, breadwinner, or retiree.  It is not trite, but speaks in real terms about real life.  Nancy's thorough treatment of the text of Titus 2:1-5, 10 and her compelling and practical applications in areas such as purity, self-control, homemaking, and marriage, are powerful and encouraging.   

Musings of an Adoptive Special Needs Mom: Wisdom from Above

"If any of you lacks wisdom, let him ask God, who gives generously to all without finding fault."
James 1:5

Motherhood, no matter the quantity or the age of the children, presents many opportunities to be stretched and grown in wisdom, patience, and selfless love.

For some mothers and in some seasons of life, weeks can sometimes go by without much conscious awareness of the challenges.

For others or in other seasons of life, there can be stretches of days, weeks, and months in which one's awareness of their inadequacies for the task of motherhood is poignant and haunting.  In which the "right" thing to do is not entirely clear and the lack of a mothering textbook brings us to our knees seeking wisdom from above.

Mothering children from hard places makes the latter experience more my norm.  Mothering little girls who have emotional fallout from early childhood trauma, one of whom regularly faces the trauma of ongoing medical interventions, often leaves me pining for wisdom.

Several events this summer brought this fact home to me once again in a fresh way.

If you follow me on Facebook, you may be aware that Lilly passed the swim test at our local neighborhood pool mid-way through the summer.  It was  a proud mama moment.  And a glory to God moment.  Lilly's scoliosis compromises her lung volume and her aerobic capacity significantly, and results in an increased metabolism and greatly diminished stores of body fat.  She has basically zero buoyancy as a result; she is essentially a brick in water.  She has worked so hard for so many years trying to  master swimming.  For years she has watched all of her friends pass the swim test at the neighborhood pool and hence swim freely all over the pool, while she has been confined to the shallow end (or in deeper waters within an arms' reach of an adult), wearing a red wristband to identify her as a non-swimmer.

So, on July 12th, mid-way through the portion of the summer in which she was able to be submerged in water (surgery just several weeks later has had her out of the water), she was determined to give the swim test a try.  She has watched so many take this test...and worried she might never be ready to do it.  She had to swim 25 meters without touching the bottom, the wall, or the lane rope, and she had to tread water for 60 seconds.

And she did it.  Just barely, but she did it.  What a huge boost to her self esteem and confidence.  I am amazed at her determination and her drive.

Now this success was entirely welcomed, to be sure.  But that very same day, a new set of mothering challenges emerged for me that I hadn't had the foresight to anticipate.

First of all, with her newfound confidence and swim-test-passing status, Lilly was convinced that she should be permitted--in accordance with the neighborhood pool rules--to go to the pool completely unaccompanied now.  I had to somehow explain to her—without squelching her newfound pride--that, even though she has passed the swim test and must no longer wear the red wristband, she could not just jaunt down to the pool on her own.  And even when we do go to the pool together, I will still feel the need to keep a watchful eye on her.  How does a mother cheer on her daughter and encourage her in her new swimming status, and not quash her sense of achievement, while still ensuring her safety? We have been working on a happy solution.  She has come to accept my expectations about only going to the pool with me or another responsible person above a certain age, and I have come to find ways to keep a watchful eye on her without hovering. Not an easy balance to strike.

The second unexpected bit of fallout from Lilly's swimming success is related to her younger sister, Isabel. As is often the case in our home, the “virtual twinship” of these sweet girls—just 10 weeks apart in chronological age—produces its own set of parenting challenges.  

Isabel's primary challenges in life--struggles with learning, memory, emotion regulation, and motor planning—we believe also stem from severe early childhood neglect or  trauma. She, too, has been working very hard to master swimming.  For many months, Tom and I suspected Isabel would pass the swim test before Lilly...she has greater buoyancy and seemed to be progressing more quickly in the water.  But the motor planning piece is still lacking and she struggles to keep afloat after pausing to take a breath.  Not just that, but when she is in the wrong emotional state, her motor skills plummet.  With Lilly's success came, for Isabel, a sense of failure.  The unspoken, constant, and subtle competition between these two sweet girls sometimes just does them in.  

Ever since, going to the pool with Isabel has been no fun.  She is obsessed with "practicing" her swimming the entire time, but her fear of failure then puts her in an  emotional state not conducive to actually making any progress.  She spends most of her time in the water crying and complaining that she can’t do it.  And so the new challenge for me is to constantly encourage Isabel, build her up, and coach her in her swimming, while also trying to let her know that even if she NEVER passes the swim test (which she will), I will still love her and we'll still have fun at the pool together.

Finally, another regular area in which I find myself crying out for wisdom relates to Lilly’s regular surgeries and the logistics that they create for our family. During the school year, we typically make arrangements for neighbors to help get Isabel onto the school bus in the morning, then Anna can care for her after school until Tom gets home from work.  Isabel struggles with these regular separations—while Lilly sees the time spent one-one-one with me to be one of the few silver linings of her regular surgeries.  

Summer surgeries, however, make family logistics more challenging without the chunk of time spent in school and teens both working during the day.  This summer we made the decision to bring Isabel along so she would be able to enjoy time with her cousins in NJ while Lilly and I went to Philly. Isabel was thrilled when she learned she wouldn't be staying behind this time.  Lilly, on the other hand, was visibly disgruntled at this new development, feeling that her one-one-one mother-daughter time was now being tainted by having Isabel along, and—even more—knowing that Isabel would have the privilege of spending a few days in the presence of beloved cousins, aunts, uncles, and grandparents while Lilly was in the hospital. 

Sibling rivalry is nothing new or unique.  Sibling rivalry compounded childhood trauma and a virtual twin hood created through adoption, however, nearly always renders conventional parenting wisdom and strategies void.  I again cry out for wisdom, and find myself striving to teach my girls both to “Rejoice with those who rejoice, weep with those who weep. Live in harmony with one another...” Romans 12:15-16a

I am reminded that, even though my mothering struggles may be intensified or complicated because of my girls’ uniqueness, the challenges really stem from the same problem of sin—the same place of brokenness—that we all have.  And the solution is to be found in the same place—the righteousness of Christ, wisdom from above, and learning, as a mother, to daily walk in the Spirit. 

So I press on to walk with Him, crying out for wisdom and striving to love with grace.   

Happy New Year, Take 2

Day  6 of playing in the snow...

So, a week has passed since the blizzard of 2016, aka "snowzilla" as dubbed by a Washington Post Capitol Weather Gang poll.  What a difference a week makes.  The air today was absolutely balmy, and Tom and I were able to go out with no jackets to continue to shovel heavy, wet, melting snow off of the road to uncover some parking for visitors to our cul de sac today.

The kids enjoyed/endured (depending on which of my kids you might talk to) an entire week off of school, and this tacked onto last week's school week that started with MLK day and a teacher work day, and ended with two snow days.  So in the past 14 days my kids have gone to school ONCE.

Lately I have been feeling sort of heavy and hazy and foggy and blah.  As I thought about some of the possible reasons for this, I realized that--between Christmas break, holiday travel, surgery, school holidays, and weather-related cancellations--there has been only precisely ONE week in which we have all been going about normal routines since December 17th.  Phew.

No wonder.  No wonder it feels like 2016 has yet to really begin for me.

So tomorrow, even though the school has already called a  2-hour delay because of icy sidewalks and dangerous conditions for those kids who walk to school or stand at bus stops on busy roads with sidewalks that are still not cleared, I look forward to trying again to start 2016.

Happy New Year, friends!

When a Snow Day Doesn't Bring Cheers of Joy

For many of us, childhood memories of "snow days" from school are rich and warm.  I can remember, growing up in western Pennsylvania, when they would cancel school the night before based on late night snowfalls and predictions of accumulation through the night.  Those were the nights we would head outside all bundled up with our sleds, and whoop and holler as we sledded for hours down the hill in our back yard with the house's flood lights shining, trying to avoid the creek at the bottom of the hill.  We would come in only when our fingers or toes were numb or nature called...once inside the cozy house my mom would have hot chocolate and warm homemade donuts ready with a variety of toppings and glazes to choose from.  The next morning we could sleep late, though we usually didn't because we were eager to see how much snow had fallen and to get back outside for more snow day fun.

Good memories.  Pure fun, a break from the daily grind. No worries except to make sure we had enough dry mittens and our boots stayed on our feet in the drifts.

Snow days in my home these days, however, have a different feel for me today.

It feels different in part because I'm now the mom and responsible for making sure all the mittens and hats and coats and boots and scarves are at the ready, helping each small person get bundled properly and re-bundled when things fall off or get too wet, helping get unbundled when a potty is needed, and making sure everyone is adequately nourished and hydrated for the day's activities.  I'm also concerned with making sure I am helping my husband clear the cars and driveway, making sure the elderly neighbors are safe and provided for during the storms, and mopping up all the melted snow and ice from the floors from people going in and out.

Making it even more different, however, is the fact that, at least for one of my children, the disruption that a snow day causes to normal routines has the potential to throw her into an emotional tailspin.  Rather than cheers of "hooray!" when a school closure is announced the night prior, I am met with tears and wails of "when will I get to take my spelling test?!" or "oh no!  I'm going to miss art!"

No amount of reasoning or rationalizing with her will help; it's beyond rational thought.  What she most needs is sympathy, unconditional love, hugs, and support.  But those things are not always easy to give when she's in that state...hugs are often met with a rigid pushing away, more tears, and louder whining.

She does enjoy the snow to an extent, but cannot stay outdoors nearly as long as her siblings and friends, which presents the extra challenge of finding entertainment indoors.  Her personality also makes this more difficult than for some kids, as she isn't often able to think of things to do with herself independently.  And all the extra time with neighborhood friends and siblings can be challenging for a kid who struggles a bit to play cooperatively and stay emotional regulated for any length of time.  Not only does she get emotionally dysregulated, but in the end it also makes those with who she is playing wondering what they've done wrong when she starts to get upset.

The end result, for me, is exhaustion.  Exhaustion not just from the shoveling, cooking, entertaining, and snow-related wardrobe issues, but emotional exhaustion from trying to soothe and help this child of mine, trying to help her navigate relationships with siblings and friends, and trying to remain the calm adult presence for her.

I know I must not be alone; surely there are others, possibly reading this post, who can relate?  Please tell me if you can.  Let's help one another.

I don't have many solutions to offer right now, but a few little things I will say I have found that help are:

• my own personal prayer time is even more important to get my heart and mind in order before I greet her for the day.  This has been hard as our sleep schedules are all over the place and I'm  fighting  cold.  I need to kick my butt out of bed earlier.
• making sure she is well fed and hydrated is more important than most days.  A little bit of snack food or a glass of water go such a long way in helping her remain calm.
• being sure to look at her when she's talking or when I'm talking to her so she knows I'm attuned to her helps so much.
• being willing to accept her feelings and her limitations without judgment on my part is huge...it's ok if she doesn't want to play outside anymore; it's ok if she gets really cold really fast; it's ok if she's sad to not be in school.

If you are a mama who can relate, please give me a shout.  And feel free to share this post with others who may be able to relate.

Let's offer one another solutions and ideas.  

The 2016 Blizzard Edition

I've been taking a break from Facebook for the past few weeks, and loving the extra time and mental energy this break has afforded me.  


But, if you've been on Facebook much (or if you happen to live in the mid-Atlantic), you know there's been a blizzard recently.  

In the spirit of my Facebook break, I thought I'd share my pics and thoughts here with more thought than just posting a quick post of pics.  

The time that a blizzard affords us is a gift.  It's a chance to step off of the treadmill of life, slow the pace, savor our homes and our families, play, wonder at God's power and the beauty of His creation, and just breathe.  

My 15-year-old said it best the other day...something along the lines of "in the DC area, man feels like he is invincible and can do all things.  All it takes is a foot or two of snow to bring all of man's efforts to a screeching halt."

Job said it pretty well too: 

'God’s voice is glorious in the thunder. We can’t even imagine the greatness of his power.  “He directs the snow to fall on the earth and tells the rain to pour down.  Then everyone stops working so they can watch his power." 'Job 37:5-7 NLT

A blizzard that shuts down the city and blocks our streets, closing schools and government offices for days on end, is also a chance to help neighbors and pull together as a community.  

Not only do we spend time together playing, sledding, and drinking hot cocoa...

 but also shoveling, pushing cars, digging out heat pumps and fire hydrants...

and rewarding ourselves with a happy hour fire pit and lots of great food, including Korean BBQ...  

...and we even spent time together as neighbors worshiping on Sunday when all the church services were cancelled.

These pictures make it look glamorous and fun, and it is quite exciting.  Indeed, all the hype in the news and among weather forecasters was justified.
The flip side, however, is that we are all sore and tired from shoveling, the kids are a little out of sorts (some more than others), and even us grown ups might be feeling a little "off" with normal routines disrupted.  For some who struggle more than others with emotional regulation, this disruption can mean an increase in meltdowns and a tenuous tone in the home that everyone can feel.  I feel a blog post coming on along these lines.  Perhaps you have someone in your home who fits this description and I'm not alone.
Until I get to write it, I am praying for wisdom to love my brood well as I support those in my midst who are struggling in these days of abnormal rhythms.  May I be walking in the Spirit and giving life and light to those around me.  

Hello, I'm Amy....and I Used to Blog.

For someone who loves to write, who finds release from the process of putting abstract thoughts and vague emotions into words on a screen, and who thrives on opportunities to reflect on life, love, and the Lord, I have surely been quiet.

My blog posts have gradually tapered from when I would blog regularly on all things, to the point where I would use the occasion of one of Lilly's biannual surgeries to take some time to write, to now barely even chronicling annually.

A previous version of Amy would have viewed this as a failure.  Letting down my readers, perhaps. Or shamefully leaving something I *should* be doing undone or only partly done.

An older and more mature version of Amy has come to accept my lack of blogging as the result of a full life with other priorities and a finite amount of time and energy.

Not only is life full and time scarce, sometimes life's circumstances produce so much to ponder and consider, the mental process of distilling and writing escapes me.

And truly, that's where I've been for about a year now.  Pondering many things up in my heart. Processing things in a way that really doesn't allow for a conscious understanding or neat and tidy distillation.  

But. But but but.  I sense a calling to write again.  There are words inside of me that I haven't yet found, but they are getting ready to organize themselves and flow from my fingers onto a screen.  I feel it.

So, in this new year, I hope to allow for enough quietness in my heart and mind and soul to let those words find their way.