Musings On the Less Visible "Special Need" and some Reasons to Celebrate

I find that I use this blog most often when updating family and friends on things revolving around Lilly's medical care, surgeries, recovery, etc.  As I think about the variety of needs that comprise our family, however, it dawns on me that, while Lilly's medical needs are indeed significant and each surgery can really consume us, her medical needs do not impact our family functioning on a daily basis in any significant way.  When I think about Bella's less visible special needs, however--developmental delays, emotional delays/dysregulation stemming from early childhood trauma, and learning issues--these are the "special needs" that permeate our home nearly every moment.  These needs are harder to articulate and blog about, and addressing them is less straightforward than twice yearly surgeries and hospitalizations.

I wanted to take a few minutes tonight to share some areas of celebration in Bella's life and share the hard work that has gone into them.

First, Bella has been working super hard on reading.  She is a 6th grader this year, but at the end of 5th grade, she was still reading on basically a 1st or 2nd grade level.   Reading, of course, impacts her ability to learn in EVERY subject area of school, since at this level so much of the learning they do in school is dependent on being able to read independently.  So, over the summer, we began daily Facetime sessions with Aunt Judi--Tom's sister in NJ who is a special ed teacher in the public school--to work through a great reading curriculum, entailing daily homework and reading with me in addition to her Facetime sessions with Aunt Judi.

This picture is love--all the time and energy that Aunt Judi has poured into Bella nearly daily since June--and this picture is perseverance--all the effort Bella has put in each day, sometimes eagerly, sometimes with tears and frustration.

When Bella got back to school this fall, she had a new special ed teacher, and, when her sweet teacher was trying to administer beginning of the year assessments to test Bella's level, she was surprised when she had to give her harder and harder material to find the appropriate level for her!  Success!  We continue to work every day on "Aunt Judi's reading work," in addition to her school homework, and Facetime once or twice a week to keep up her great progress.  I am so proud of her hard work and progress. And I am SO thankful for a sister-in-law with the expertise, willingness, and patience to pour into Bella in this way.

Second, Bella is finally beginning to enjoy riding her bike "independently." I tried to upload a video taken tonight, but blogger is being uncooperative. Maybe I'll get it up on Facebook. Here's the backstory: Riding a bike is another area where Bella's delays and relative weakness--balance, motor planning, coordination--are really evident.  From the time she first joined us from China at the age of  nearly 6, it took her many many months simply to learn to pedal "over the top" rather than backwards, even with training wheels on.  When she mastered that, it took literally years to try to begin to lose the training wheels, and, even after attending a week-long bike riding camp a few years ago, geared at kids with intellectual or other disabilities that impact bike riding, she still hadn't quite mastered riding on two wheels.  We had ditched the training wheels in favor of an awesome handle on the back that allowed me to run alongside her and steady her when needed, and she had been doing GREAT, nearly mastering the balancing and ready to focus on steering, braking, starting and stopping.  However,  a huge growth spurt rendered that bike too small, and the beautiful bigger bike she got for Christmas last year proved to be more difficult to balance again.  It also proved to be more challenging for me to run fast enough to keep up with the bigger bike and harder to steady her due to her increasing size and weight.  My hope was that last spring and summer she and I could get out regularly to practice because--with Bella--so much repetition is required for things to "stick."  All it took, however, was one big fall and some pretty nasty road rash that literally took all summer to heal, for Bella (and me, honestly) to decide that "enough is enough." She was now pretty traumatized and was no longer willing to get out and practice.   

Before I continue this saga, let me just say that I find parenting Bella to be such a fine balance of cheerleader, comforter, coach, encourager, teacher, advocate, affirmer.  Striking the right balance at the right time with her is a huge challenge; sensing what she needs from me at any given time is not easy, and when she is fearful--either for her physical safety or fearful that she may be letting someone else down--she is prone to emotional "shut down" or dysregulation. 

As a parent, I want to be the one that says "you can do this!  You can do whatever you decide you can do! I believe in you!" I want to be super patient and kind, never frustrated. And yet, sadly, I'm not always able to do or be all of those things.  And my discouragement over her difficulties riding her bike was something that Bella was keenly attuned to despite my attempts to mask my feelings.  I began to think about how we could make bike riding successful and fun again, and decided to look into an adult trike for her.  Why not take the need to balance out of the picture?  Steering and speed control were enough for her to focus on at one time.   I had to struggle against the feelings of defeat that this direction of thought brought me. Was I giving up on my girl?  Was I failing her as a mom?  

Ultimately, where I landed was this: No. I am not failing her or giving up on her.  I am empowering her to enjoy an activity that she wants to enjoy and feel successful doing it. I am finding the modifications that she needs to be able to function at her level.  And that is good. Rather than an adult trike, what we found were these amazing pneumatic stabilizing wheels meant for adults or teens with balance issues, to allow them to ride their two-wheeler with support. Tom worked long and hard to get them installed properly on her beautiful new Christmas bike a few weeks ago. 

Tonight, we went out for a ride around the neighborhood after dinner.  And when I asked her how she liked riding a bike without me having to hold onto it she said "It's great!  I can EXPLORE!" That's all I needed to hear.  I am grateful she is not self conscious about having these large "stabilizing wheels" (we're not calling the "training wheels") on her bike.  She is at an age where she is increasingly aware of the differences between her peers and herself. 

I hope and pray she will always be able to embrace and celebrate her abilities and her differences.  And I hope and pray I can have eyes to see her amazing abilities and her effort and continue to cheer her on.

Grieving, but Grateful

Yesterday, we received some very, very sad news.  Now that we have shared this news with Lilly, I am ready to share it with you, our friends and family.  

Our beloved VEPTR surgeon,  Dr. Robert Campbell, passed away on Sunday, July 29th.We have known Dr. Campbell since late in 2009, when we had been referred to Children's Hospital of Philadelphia (CHOP) by our pediatric orthopaedist in Pensacola Florida.  He had referred us to Dr. Dormans at CHOP, who, upon entering our exam room and taking one look at Lilly, exclaimed "You don't need me. You need my colleague, Dr. Campbell!" He went down the hall and brought Dr. Campbell back into the room.  We hadn't heard of Dr. Campbell at that point, but we were soon to learn that Lilly wold now be a patient of the inventor of the VEPTR device itself, and the pioneering surgeon for the VEPTR surgeries that Lilly would soon undergo to open and maintain her thoracic cavity and preserve her heart and lungs' vital functions (click here to read more about his development of the device).  

How grateful we are that the Lord saw fit to allow us to land at CHOP all the way from Florida.  We have Dr. Campbell to thank for Lilly's longevity--now 12!--and her amazing quality of life (even able to play the flute beautifully, which takes a lot of wind!). Left untreated, Lilly could have expected a shortened lifespan and very poor quality of life.  

From the moment we met him, we felt completely at ease and comfortable with Dr. C's demeanor, his expertise and wisdom, his knowledge, and his compassion.  Lilly--as many of you know--can be slow to warm up to people, but he had soon earned her trust. He could see her spunk and tenacity from the get go.

As hard as the VEPTR journey has been--Lilly now having undergone nearly 20 total surgeries with several post-operative infections and other complications along the way, each requiring logistical planning, time away from home, school, work, etc.--because of the level of trust we have had in Dr. Campbell, our anxieties never really centered on the surgery itself.  In fact, my OR waiting room times have been some of the most relaxed times I've had at CHOP, knowing he was the surgeon taking care of her (it's much more intense for me caring for her in her room post op!)  

Not only was Dr. Campbell wonderful with Lilly--taking time each visit to show her pictures of his own children and talking about their lives--but, being a former military physician, he also had a strong connection with Tom and always asked how "the Colonel" was doing and what he was up to in his career.  He even took the time to talk to Tom on the phone or on speaker when Tom couldn't be there to consult with him post op.  

Our hearts are heavy as we grieve this beloved physician who had really become more like a treasured family member to us--and to many more families all over the country and the world, who are all grieving with us now.  We grieve for his family, we grieve for his patients and their families, we grieve for his co-workers and friends. And we grieve for the loss his passing is to the medical community worldwide.

So many tributes to Dr. Campbell are now streaming into our "VEPTR Kids" Facebook page, every one with stories of the impact he has had. If you'd like to read many other stories, please check out my friend Julie's blog, where she is compiling in several installations all of the tributes.  To learn more about his medical expertise and experience, check out his bio on CHOP's webpage. He has traveled the world training and teaching doctors for many years, in fact, and VEPTR surgeons are now available in many places around the globe. While the grief over his death is widespread, even wider is the ripple effect of this one man's vision and life's work.  

When we told Lilly the news at bedtime last night, she cried with me, and--after asking as many questions as she needed to--we prayed together for Dr. Campbell's family, for his friends, his colleagues, and all his patients and their families.  Lilly has been sweetly praying for Dr. Anari, Dr. Campbell's graduated fellow, whom we've been told will be doing Lilly's future surgeries, asking God to help him not to be nervous about stepping into such big shoes.  

Finally, we do not grieve without hope.  We do trust that our sovereign God took him home at just the right time, and we trust that Dr. Campbell carefully took the time to hand-pick his replacement attending surgeons and train them well.  We now await word on Lilly's rescheduled expansion surgery date, originally scheduled for today. Please join us in praying for Dr. Anari and all the staff at CHOP who are also reeling over this sad loss. 

Please enjoy our photo gallery of many (though not all) of our visits with this dear man.  I love seeing the change and growth in Lilly through these photos, though I cringe seeing the slow decline of Dr. Campbell's health through the years. 

Rest in Peace, Dr. Campbell.  We love you.

February 2011, Lilly's Initial Implant Surgery, CHOP

December 2011, washout and hardware removal surgery after an infection.

April 2012, Getting ready to reimplant hardware after infection necessitated removal.  Dr. Campbell always took time to show Lilly pictures of his kids so she could see how they were growing, just like her.  This helped her to warm up to him and see him as just a dad who was a doctor, like her own dad. 

November 2012.  

Lilly gave Dr. C a copy of Nana's NYT Bestselling novel, Agenda 21.  He was pleased with the gift!

 Lilly also brought the class stuffed animal, whom Dr. C welcomed warmly. 

 Ready for another expansion.

May 2013: VEPTR Family reunion and expansion surgery number 4

 October 2013, expansion surgery #5

March 2014, Expansion surgery #6

September 2014, Expansion Surgery #7

July 2015, expansion surgery #9

January 2016, Expansion surgery #10

 Lilly took this one as Dr. C was talking to me!

July 2016, expansion surgery #11, showing which rods he'd expand.

Expansion #11

One of the few times younger sister, Bella, was with us for pre op.

May 2017, wound debridement, muscle flap procedure.

January 2018--our last surgery with Dr. C.  Lilly's 14th expansion surgery (19th total surgery). 

Finally, here are some of Dr. C's autographs in Lilly's "hospital caregivers' guest book" that she has everyone at CHOP each time she's there for care.  He always drew and said something to make her smile:

Nine Years Home!

Today marks the day 9 years ago when we first held our little "An Xiao Xue" in our arms.  We are so grateful for Lilly, who has grown from a malnourished, 19-pound nearly 3-year-old with a nearly 100-degree curvature in her spine, so a strong, healthy, vibrant nearly 12-year-old with life-saving VEPTRs supporting her spine and opening her thoracic cavity.  Her spunk was evident from day one and we are grateful that same spunk gives her courage and fortitude for the challenges she faces medically.  We praise God for the miracle of adoption--the grafting in of a family member in an unimaginable and supernatural way--for the gift of excellent medical care and technological knowhow in Lilly's team at CHOP, and for the role we get to play as God unfolds the plans and purposes He has for Lilly's life.

Book Review Time: Lies Women Believe and the Truth that Sets them Free, by Nancy DeMoss Wolgemuth

Last week, Moody Publishers released the updated and expanded edition of this book, originally published in 2001.  Roughly one-third of the content is brand new, taking into account the many seismic changes in our culture with the advance of social media, among other things, since the  book was originally released.  Nancy DeMoss Wolgemuth with a small group of other authors has done a really thorough and insightful job of addressing a multitude of ways that we, as Christian women, can sometimes be deceived, and find ourselves living in a way that reflects a reality other than God's powerful truth.

Now, I had not read the original book, but was eager to read the new one because of how much I thoroughly enjoy Nancy's daily teaching on the Revive Our Hearts podcast and how much I gleaned from her last book, Adorned: Living Out the Beauty of the Gospel Together.  I just finished reading Lies this evening, and had to sit right down to write this review while it's fresh in my mind.  There was so much meaningful and thought-provoking material.

At the outset, Nancy makes it clear that the source of any deception that may captivate us is the same: the enemy of our souls whose tactics have always involved deceit and lies that cause people to question God's goodness, love, and motives.  She lays a foundation for the book by looking at Eve, the very first woman to fall prey to the lies of Satan.  As Nancy sums up: "Satan deceived Eve by causing her to make her decision based on what she could see and on what her emotions and her reason told her to be right, even when it was contrary to what God had already told the couple." And so the enemy continues today to trip us up by appealing to our sight, to our emotions, and our rational thinking with things contrary to God's best for us. 

The book addresses a total of 45 lies that fall into 9 areas of our lives, including lies about God, ourselves, sin, priorities, sexuality, marriage, children, emotions, and circumstances.  Before beginning to read, I proudly suspected I wouldn't find very many of the lies to be applicable or relevant to me.  But as I read, I realized that there are many lies that are so subtle--and sound so rational or logical--that yes, indeed, I too fall prey to some of these enslaving lies, particularly in the area of priorities ("I don't have time to do everything I'm supposed to do" is a common thought in my mind, lie #18) and even in the area of marriage (I would never have said it quite this way, but when I read Nancy's description, I realized I fall squarely into lie #28 "My husband is supposed to serve me.")  

For each of the 45 lies, Nancy counters them with truth--with Biblical principles and with soundly exposited scripture to show us how to walk forward in the freedom that truth brings. She wraps up the book with a section entitled "Countering Lies with Truth" in which she outlines practically speaking how do we allow the power of God's truth to transform our minds and our hearts.  She also includes a list of 21 powerful truths about God and about who we are in Christ that make good fodder for meditation and devotional time.    

This  book is one I highly recommend and believe it makes excellent fodder for personal thought, for discipleship relationships, and for small group study. (There is a small group study guide available as well). I look forward to re-reading it and hopefully working through it with others!

  

Six Years Home

Today marks the day that Isabel has been in our family for six years.  Thanks be to God for the gift of Bella and the miracle of adoption.

We met her when she was 5 and 3/4, a sweet but extremely frightened (perhaps traumatized is a better word) little girl, who spent the first 45 minutes in our presence wailing and screaming loudly, protesting the scary and monumental life change that was being thrust upon her. 

(Every single family in our adoption travel group who attempted to get video footage of their family's sweet gotcha' day will forever get to hear Bella's loud wails when they remember this day with us.  Our hearts are indelibly etched with each of the other families that underwent their adoption alongside us for both of our adoptions.)

This is our first "family" photo with Bella--after her crying had subsided and been replaced with her heart-melting smile that brightened the entire remainder of our time in China completing her adoption.

The only time during the rest of the trip--other than when we first met her and when we were boarding the plane back to the States--that she showed any signs of fear or sadness was when we went back to visit her orphanage, where she had spent roughly 2 years (relinquished to the orphanage around the age of 3).  She was able, however, to walk right up to her little bed in the sea of beds in the sleeping room to show us where she had slept.  

Sometime during this past year, Bella passed the point at which she has now been a part of our family for longer than the period of time before she was in our family. This marker came much earlier for Lilly, since she was much younger coming home. For kids who come home at a later age, it takes that much longer for them to make emotional and/or developmental gains where there are delays from neglect or trauma.  

These days, sometimes the fact that she suffered early childhood trauma seems like a distant memory.  She has come such a long way since the earlier days and months after she came (and once she was comfortable at home and felt safe showing the full range of her emotions) when daily we faced emotional outbursts and meltdowns and "emotional seizures" as we came to call them.  

And yet, six years later, there are still days when it is abundantly evident that her trauma still impacts her ability to process, to think rationally, and to regulate her emotions.  Her learning at school is slow.  There is definitely progress, and it's exciting.  And she is SUCH a hard worker.  But the days when she is on the emotional edge, ready to fall off of the emotional cliff at any moment, those are harder days.  They keep me on my toes in the realm of mothering.  They can kick my butt.  And make me feel like a miserable parent.  And make me feel helpless, hopeless, and frustrated.  I have to fight hard not to have my own emotional seizure sometimes.  

So six years later, I continue to lean on the Lord.  Press into His sustaining and all-sufficient grace to love well, to not grow weary, to speak with kindness, to offer a calm presence.  I continue to pray for daily wisdom--wisdom we all need no matter how many kids or where they come from!--and seek to walk by the Spirit.  

I'm grateful for Tom, who is calm, wise, loving, and thoughtful.  

I am grateful for Bella's older siblings who have also grown in grace and love through our adoptions.  

And I am grateful for this girl.  Her perseverance, determination, and heart inspire me daily.  May I always have eyes to see how hard she tries and how deeply she loves.  

How appropriate that the artwork that she brought home from school yesterday was a depiction of Bella's "Move to Virginia." (That's a quaint way to encapsulate it.) The top row depicts Bella and friends at the orphanage, the middle row depicts Bella with Tom and me as we are boarding the airplane home from China, and the bottom picture is our family of 6 (and she sweetly included both Tad--our golden retriever who died a few years ago but who was here to welcome her home from China--and Duke, our golden retriever now.)

Happy New Year 2018...Getting Geared Up

January has been a whirlwind for our family.  We enjoyed a lovely Christmas with my family, and it was wonderful having Jared home!   Between Christmas break, sickness, snow days, travel for a (wonderful!) belated Cantilina Christmas celebration, pre op appointments at CHOP, Tom and Jared’s trip to CO together to get in some skiing before Jared heads back to Boulder classes, and now getting geared up for Lilly’s next surgery, however, the holidays feel distant and life feels a little surreal. And on top of that, I'm gearing up to launch the next new release for BodyPump this week, which always takes a little bit of extra time, energy, and mental reserve.  And finally, I have now succombed to a nasty cold which I would LOVE to kick before we go to CHOP on Wednesday (you can thank my cold for this blog post, since I’ve been up since 2am because of it!)

So I covet prayers from anyone reading for a speedy recovery for me so I’m better able to prepare family logistics for my absence as Lilly and I go to CHOP this week.  Please also pray for Lilly to be protected from this cold (I think I got it from her!) and for her Surgery to go smoothly.  We are praising God that Doctor Campbell looked so good when we saw him last week-pray for him to have wisdom and discernment as he performs the procedure Wednesday.  He’s such a good man.  And, as always, pray for my Bella’s heart as she misses us when we’re gone.  Please also pray for Jared as he gets back into the swing of things in Boulder, and pray for Anna as she waits for one more college admission decision (though she found out this week that she is admitted to what she thinks will be her top choice!).

Here are some photos for your enjoyment!

Post-Surgery Caregiver's Letdown?

So it's nearing the end of a surgery week, and I am feeling weary.  Feeling a bit out of steam, a bit unfocused, and, for a few days after discharge on Tuesday, I was even feeling weepy and emotionally fragile.

Backing up a bit, last I wrote, we were enjoying some summer aquatic fun because Lilly's incisions from her May surgery were finally healed nice and tight.

And our summer was quite full of fun things, lots of swimming, adventures in Maine, the girls' overnight week at Mount Gilead girls camp, and a week serving as a family at New Life Bible Camp in Pennsylvania.  

Interspersed in all that summer fun was an aborted surgery that had been scheduled for late July.  In the week or two leading up to her schedueld surgery date, Lilly had been having some pain that was more intense than her usual it's-time-for-an-expansion-pain, and I began to notice that her rod was looking pretty prominent in her lower back again.  Hmmmm.  So on surgery morning--after we had fasted and bathed and done the pre op CHG wipes--within minutes of them being ready to walk us back to the OR, Dr. Campbell cancelled the surgery in order to make sure that Dr. Taylor, the plastic surgeon, could be in the OR in case we needed to do any more muscle flap or other plastic surgery procedures to ensure adequate coverage for her rods.  Always a let down to gear up for surgery and then have it cancelled, but it was definitely the right thing to do. So, that morning,  grabbed some breakfast and headed home for a few more weeks of summer fun. 

And then it was time for back to school (Anna's a senior--whoa!!--Lilly is a 6th grader, and Bella is a 5th grader) and re-entering fall routines and rhythms.  Back to school time is always exciting and mixed in with the excitement and energy is always a time of steep learning as we get to know teachers, routines, expectations, etc.  The scheduled Back-to-School parents' nights add not only to the family calendar but also to the mental weight of this mama, who is constantly wanting to be sure each of the kids is in the right place, getting the right kinds of support at school. 

Interrupting the newly-reestablished flow of fall routines, however, was the rescheduled surgery date--September 11.  A Monday.  Which meant that pre op appointments had to take place on Friday.  Which meant either another weekend spent out of town and separated as a family, or it meant several trips to Philly.  In light of Tom's birthday weekend and some events at church that we didn't want to miss, we opted for the additional driving.  So last Friday Lilly and I drove up to Philly and back in one day for her pre op appointments, then drove back up Sunday evening for her 5:45am Monday surgery show time.  Lots of time in the car.  We had a poor night's sleep at the Sheraton in Philly (no room ata the Ronald McDonald House this time) due to some pre-surgery anxiety for Lilly and some loud neighbors, but we made it up and to CHOP on time and all the pre op went smoothly.

Surgery itself went well.  Dr. Campbell was able to cut some bone in her pelvis to allow the rod to sit a little deeper in her back, and Dr. Taylor was able to make several deep muscle flaps to better protect the rods.  Dr. Campbell expanded the rod on the left side but not the right (in order that she might have a "comfort" side).   She had more pain than she would for a typical expansion surgery because of all the muscle and bone work they did, but she came out of surgery with no drain and was actually able to get discharged after only one night in the hospital--a day or two earlier than we had expected this time around.  

We got home Tuesday evening, and I kept Lilly home Wednesday to make sure she was in good shape pain-wise to head back to school Thursday, which she did.  She hasn't needed much in the way of pain medicine since we got home, with the greater discomfort coming from itchiness.  

While I am extremely grateful that the surgery went well, that Tom and the kids at home survived (and we had fabulous friends helping with Bella, who really struggles emotionally when we are away), I found myself for the couple of days following our return home to be weary, blue, irritable.  Not what I wanted.  Not what anyone in my home needed.  When we're away for surgery, many of my normal activities and areas of involvement have to be put on pause, and it has been harder to push the "play" button again this time.  

I am having to give myself grace to ease back into things, much in the same way I allow Lilly to ease back into things.  And praying for wisdom and discernment as to whether some things don't even need to be picked back up.  

And I find myself pondering how common "post-surgery caregiver let down" (my made-up title for what I've been feeling) might be.  I wouldn't be surprised to learn that I'm not alone in these experiences and feelings.