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.



 

The Surprises of Life

Life can bring many surprises.

These surprises are often times outside of our control and possibly things we might not choose for ourselves; Say, for instance, your young, healthy,  40-something husband suffering a stroke while out of town on business and spending a week in a neuro ICU in a regional medical center in another state.

Equally out of our control, these surprises are sometimes happy, such as when that same man makes a miraculous and remarkable recovery and just a few weeks later is fully functional again with only minor issues with balance remaining as any symptom of his mysterious cerebellar stroke.   Praise. The. Lord.

And sometimes, surprises are planned by those we love in order to make us feel loved, cherished, valued, and celebrated.

These surprises are my favorites.

Several people have asked for the back story to the surprise 25th anniversary vow renewal ceremony I posted photos of on Facebook yesterday.

Here it is...

When Tom first proposed to me, we were young, poor, college students.  We were also smitten and felt that God had called us to be married, forever committed to one another, whatever life might bring.  He proposed over a gourmet lunch of macaroni and cheese in my apartment on Charles Street in Baltimore, opposite the campus of Johns Hopkins University.  The ring he gave me on that April day was so lovely and yet so tiny, my future mother-in-law needed to put on her reading glasses to be able to get a good look at it after we were engaged.

Tom decided this year to give me the engagement ring he had dreamed of giving me that day in my apartment.  So while he was TDY in Ohio--prior to his stroke--he did some jewelry shopping.  I had an inkling he was up to something when we started getting mail from Jared's Jewelers in Ohio during his absence.  When he realized that I had learned he had been jewelry shopping, he attempted to throw me off of his trail by giving me some lovely mother’s day jewelry, also from Jared’s.

This past Saturday, we had a lot of things on our calendar--swimming lessons, Chinese class for the mei meis, meeting friends for the Memorial Day concert rehearsal on the mall--but Tom was insistent that he wanted to go for a bike ride with me over lunch.  It would be his first time on a bike since his stroke and he had planned an easy ride on a wide and flat stretch of path for his first outing.  We would park, cycle to Reston Town Center, have some lunch, then cycle back to our car.  I was happy to do a bike ride lunch date with him--our favorite "dates" are those that involve a fun workout together--but I was baffled why he wanted to squeeze this ride in on a day that was already busy and becoming busier with a request from our friend and neighbor, Jesse, who had asked if we could come help with taking some recyclables from our church to the recycling center for him.  Nevertheless, when I arrived home from the girls' swimming lessons mid-morning, he had the bikes mounted on the car ready for our ride.  Anna sweetly offered to shower the girls for me so I could get out the door with Daddy even sooner.  Who am I to second guess an offer from my oldest daughter to help with her mei meis so I can spend time with my man?

So off we went for our ride.  Tom did great on the bike--took it slow and steady to make sure his balance was ok.  We went to Panera for lunch and he ordered mac-n-cheese, not his usual Panera YouPick2 pairing.  I wasn't even hungry, and opted for some iced tea, figuring I would eat at home after we took care of the recyclables at church.

As we sat and ate lunch, Tom commented "isn't it romantic that I'm eating mac-n-cheese and it's our anniversary weekend?" I enjoyed remembering the engagement meal we'd consumed all those years ago, and he declared we should have someone take a picture of us and his mac n cheese.  I was thinking "why not just do a selfie? Why does he need to ask someone to take a picture?" As he came back with a woman willing to take his camera, I realized she was not photographing but videoing us.  He dug into his camelback and pulled out a tiny box.  He then got down on his knee to propose all over again, asking me if I'd marry him and revealing a beautiful diamond solitaire. Of course I said “Yes!” and sat, stunned, while the sweet impromptu videographer congratulated us.  I was a little confused, since our anniversary was actually not for 3 more days.  Why give me the ring today, I thought?  Still, it is a beautiful ring and I admired it nestled in my cycling gloves as we got back on our bikes to head back to the car.

As we cycled back to the car, Tom seemed a little bit concerned about the time.  He actually tried looking at his watch while cycling, not a good move for someone whose balance is still a little off.  He managed to stay upright, and I encouraged him not to worry about the time...we would get to the church in time to meet Jesse and get the recycling.

As it turns out, however, Tom cycled back to the car much more quickly than he had expected, and so we were ahead of the as-yet-unknown-to-me “schedule” as we headed to the church.  Tom, who normally is a bit liberal with the speed limit, was putzing down route 28 toward Chantilly.  He seemed concerned that we were going to be early to meet Jesse, who works at the church. Then he started getting a lot of text messages, so we pulled into a parking lot to let him respond to some texts about our whereabouts.

We finally arrived at the church and went to the appointed door to meet Jesse at the appointed time.  As we entered, Tom again seemed very preoccupied...scanning the hallway and mumbling to himself.  Suddenly, after I could have sworn I saw my son Jared dart across the hallway looking handsome, around the corner came my dear friend Gracie, looking lovely and all dressed up.  She sweetly said "what are YOU doing here?" to which I replied to her "that is the wrong question...what are YOU doing here?" (she does not attend our church and had no reason to be there as far as I could tell) and to Tom I said "what are you up to?" The wheels had been turning and I realized his preoccupation with timing was leading to a grander plan for the afternoon.

Gracie sweetly took my arm and guided me away from Tom and into one of the Sunday school classrooms where she had many items needed to get "ready," including my actual wedding dress, an alternative white dress I had used for beach photos in Florida, several pairs of shoes, and all sorts of toiletries.

Now, mind you, it had been a busy Saturday.  I had been riding a bike just 30 minutes earlier.  And I hadn't showered, nor washed my face, nor even probably brushed my teeth that day!  (sorry, TMI).  And as I stood in that room being told to prepare for something unknown and unexpected, I wanted to cry...because how could I really make myself presentable?  Oh well. I proceeded to do the best I could with a sink, some washcloths and towels, and lots of deodorant!

A little while later, my dear lifelong friend and maid of honor, Sue, entered the room. And then I DID cry.  I actually sobbed.  It was so good to see her and to think she was there on this day when clearly Tom had done some planning to celebrate with people that we love.  She casually asked me “so, how’s your day going?” with a smirk.  Love that woman.

She and I got to chat and catch up a little bit until Gracie appeared again to tell me it was time.  Time for whatever other surprises might await!

So they walked me down the hall to the exit for the picnic area behind the church, gave me a lovely bouquet of flowers that Sue’s sister, Kobey, had prepared (along with all the other lovely flowers I would soon see outside on tables and in my girls’ hands), and directed me to exit at just the right time after Kobey had gotten processional music queued up.

When I came out of the church, I was overwhelmed to see a small gathering of family and friends from many times and seasons of our lives, and to see my dad and my son, Jared, waiting to walk me down the “aisle” (between the picnic tables) to Tom.  I couldn’t look around quickly enough to take it all in and my mind was just racing.  Behind Tom stood his best man, Kevin, still a dear friend to us along with his wife, Mimi. And standing in front, ready to officiate the vow renewal ceremony, was Neil Livingstone, who was our Intervarsity Christian Fellowship staff director during our years at Johns Hopkins University (and who is now a good friend along with his wife, Renea, still serving with IV at the national level, and remains one of the best Bible exegeters I have ever heard).

After the lovely ceremony (during which Tom presented me with the second part of my new ring—now a complete set with four littler diamonds to surround the new solitaire…beautiful) and “that kissing thing” (as Neil put it!), we were able to give hugs and catch up with all the friends and family gathered.  How blessed we are with such great friends over the years and across many miles.

Sue and her mom and sister had outdone themselves in decorating, providing party platters, sparkling cider, and even a gorgeous and delicious cake for the occasion.  Gracie and her husband Kevin had worked hard alongside them to get it all set up and cleaned up afterwards… It was really difficult for me to just relax and enjoy being with people without being a part of the serving and working—my second nature.

At some point during our afternoon, overwhelmed, I looked at Tom and said “no more surprises, right?” To which he replied “actually, there is another surprise—our honeymoon.”

Having just spent a surprise “couples’ week” in Dayton OH in a hospital with him, I was not sure I wanted to be away from our kids again for any length of time, but he had made arrangements for the mei meis to travel to NJ with Aunt Judi and Uncle Doug, who were in attendance and ready to bring the girls to their house for a few days.  Jared was scheduled to work and Anna had opted to stay home to get on top of homework before our planned trip to NJ on Memorial Day.

So, Tom whisked me away to a lovely hotel in Front Royal, and we spent the day today hiking along Skyline Drive in Shenandoah National Park on one of the most glorious days of this year.

So, yes, life can bring surprises.

And I’m so blessed by this amazing surprise.    

Back to CHOP

GOod morning!  If you are reading this then you are a true friend.  I haven't written on my blog for MONTHS.  I have missed my therapeutic writing outlet, but life has been too full to make any time for blogging.  I am hoping to start afresh soon...I have many things I've been pondering and much to write about.  Stay tuned for more.  I'm hoping to be writing more and sharing more of my heart in the coming weeks and months.  

But I'm back today simply to give an update and ask for prayer for our family.

As I type, I am sitting in the wee hours of morning darkness of a small room at the PHiladelphia Ronald McDonald House wiht LIlly asleep in the bed we shared last night.  Yes, it's time fo her next surgery.  Today we will do her pre op appointments--a visit with Dr. Campbell in clinic, X-rays, lab work, and a visit to the anesthesia resource center to clear her for anesthesia tomorrow.

Tuesday will be he next expansion surgery.  We'll find out her show time later this afternoon.

We are so thankful to have been able to get a room at the Ronald McDonald House on CHestnut St. this time...we don't often get a room here, so when we do it's extra special.  We were privileged to meet another VEPTR family here last night--a cutie pie little boy named Miles who is 5 years old, who travels to CHOP from Indiana for his surgeries.  It's always a joy to meet other failies who are familiear with the unique and challenging road that VEPTR kids and families face.

Saying goodbye yesterday to Isabel was very difficutl.  For the past 1-2 weeks, Lilly has been struggling with anxiety, likely tied to tomorrow's surgery, and her anxiety resulted in disrupted sleeo for both the girls for the past few weeks.  Isabel has grown more and more anxious about our departure as the time drew near, and it was hard to see her sobbing as we left, pleading "don't go, Mommy! Don't go!"  Makes me wonder if this goodbye--even if only for 4 days--somehow evokes implicit memories for her of her abandonment at age 3 1/2.  Breaks my heart.  Thankfully Tom was able to keep her happily distracted playing outside yesterday after our departure, but he reports that she was upu at 4 am, fully dressed, this morning, and hasn't really gone back to sleep since...likely wrapped up in her anxieties.

So I'm asking for your prayers for both Lilly as she preparse to undergo surgery, as well as for Isabel (and those caring for her) back home.

For Lilly, we are praying for a smooth expansion, wisdom for Dr. Campbell, relief from the mystery itchiness and hives she typically suffers post op, and no infection as she heals.  For Isabel, please pray for peace in her heart, security in our home with Daddy, Jared, Anna, and our dear friend Becky who will come to help her get out the door to the bus in the morning and help with homework in the afternoon.

Thanks for reading and for caring for our family.