How Far She Has Come

For those who know Becca, and have known her for many years, you know the trials and tribulations.  But for those who might just see this post and not know, I’m going to give a little background before I get to the excitement.  

Becca was born seven years ago on Saturday, so we’re just two days away from all the birthday festivities.  When she was born, she was immediately a handful and Cody and I found ourselves thrust into parenthood with a baby that was fussy.  A lot.  So we became avid followers of the “5 S’s” from “The Happiest Baby on the Block.”  (It WORKS!  Try it!!)  As she got older, she became more and more headstrong, and was an extremely difficult toddler, who had frequent meltdowns.  She was “that kid” in the store.  Randomly.  Without any apparent reason.  And it wasn’t for lack of discipline.  We tried everything.  And then a friend’s son was diagnosed with Sensory Processing Disorder (SPD), and things started to fall into place.  About that same time she started mentioning that her “nose doesn’t work.”  After her talking about this a LOT, and even identifying herself with a child in a wheelchair whose legs didn’t work, we started taking her seriously and the doctor visits began.  We ended up in a neurologist’s office with her taking a smell test.  And then our world quit spinning.  Her nose didn’t work.  Anosmia.  We were told that because she was unable to sense positive OR negative scents, she was missing the nerves that connected her nose to her brain, and would never smell.  She was termed to have “Sensory Processing Disorder due to Anosmia.”  In other words, her other senses were in hyper drive to compensate for the lack of the sense of smell.  And her sudden meltdowns were similar to that of an autistic child who has some sudden input that their brain can’t handle.  This was her norm.  So we began to work (on our own because our insurance wouldn’t cover a therapist) on how to handle inputs.  We got her a mini trampoline so she could jump til her heart was content.  And lots of other modifications.  And she started coping.  She was calmer.  Because we were able to realize her needs and pre-empt a lot of her episodes.  

Becca and Mommy
This photo was taken the week she turned three – right at the same time she started reading.

And then, the week before she turned three, she picked up a book she had never seen before and read it out loud.  Correctly.  Our world stopped again.  The early childhood educator in me SCREAMED out. This wasn’t possible.  She didn’t even understand rhyming yet – how could she read?  I mean, we read with her every day, but how was she able to pick up long books she’d never seen before and read them – at THREE – with no formal training?  Her Mother’s Day Out teacher was SO helpful that year.  She gave her little challenges to do for “homework” because she saw Becca’s NEED/CRAVING for academia.  And Becca just kept growing mentally.  Her mental leaps and bounds were incredible.  But with those leaps and bounds, we saw and suddenly learned the meaning of “Asynchronous Development.”  One part of her brain was growing, but the rest wasn’t.  As she got older, Grayson, her brother who is 23 1/2 months younger, was also getting older.  And he was reaching physical milestones before she did.  He could put on his shoes and completely dress himself before she could.  He was climbing our play structure and sliding down and she was still needing help to get up.  When it came time for her to do PreK, I taught her at home while he spent the day at MDO.  The first semester, I allowed her to lay on the floor or stand up to work, and let her guide the instruction to things she was interested in.  The second semester, I had her sit in a hard chair at the table to work and made her do so for longer and longer periods – trying to prepare her for the rigors of public school.  But when she started kindergarten, I honestly wasn’t sure how our Sensory Seeking / Tactile and Auditory Defensive girl was going to do.  Kindergarten was full of behavior issues, but we pressed on and she grew by leaps and bounds socially and emotionally.

Processed with MOLDIV

This year in first grade, she has blossomed.  Suddenly, she started smelling things and her senses began to level out.  Girl Scouts has given her an outlet for her caring heart and adventurous outdoorsy side to really flourish, and she has worked really hard academically.  She has pressed hard to control her behavior, and has succeeded on many occasions.  Many profoundly gifted students are so asynchronous that their social abilities are lacking, and many are also far behind because they are not high achieving (they lack the drive to care about grades or pleasing teachers).  But Becca somehow has the social AND academic abilities AND is high achieving!  She WANTS to be the best.  And while she fights against homework like any other kid, she’s upset when she misses one on a homework paper or especially on a test.  She’s long been a perfectionist, and she was always proud when she brought home progress reports with 100 in every class.   This year, she learned to accept the fact that a 97 is ok, but would always fight back to try to bring them up.  That’s just the way she is.  She’s very hard on herself.  High school will be a challenge.  But we as parents strive to encourage her to be her.  “Do you” is a great theme for her.  Because who she is is amazing.

We took the advice of her teachers this year, and have had her test to be in third grade at her new school next year.  We won’t know the results until the end of July, and we know that God will place her wherever she needs to be.  If it’s His plan for her to be in third grade, she will be.  If she’s meant to stay with her age group peers, she’ll be in second grade.  And we are working hard to encourage her that either result is perfect because it’s God’s plan.  Her perfectionist side says she didn’t do well on the math test, but she OFTEN came home this year saying that about math tests, and then she’d get them back and would have gotten 100 or just missed one.  So we really don’t know what to expect.  She has to receive at least an 80% on each of the four subject area tests she took.  So we anxiously await those results.  This opportunity was truly made for kids like her.  

And then we got more confirmation of that today.  We had received an email that she’d be receiving a character award at the end of the year awards ceremony this morning, and we were ready with the phone to video when her teacher started talking.  But she didn’t receive a classroom award.  Instead, the principal started talking at the end, and we knew that was it.  She received the “Hugo Award” – which is essentially the Student of the Year award.  For all of first grade.  Based on character and academic achievement.  I’m still in shock at how far she has come.  I can still see myself, sitting in the floor, pregnant with Gray, bear-hugging my toddler who had just had another meltdown and was screaming and kicking, and I was begging God to take away whatever was making her crazy and just calm her down.  And I started singing.  Softly.  Under the screams, into her ear.  I started singing “Amazing Grace.”  Tears were streaming down my face and I gave up.  I gave her to God and said, “I can’t do this anymore.”  And she went limp in my arms.  If I had known then what I know now, I wouldn’t have given up so quickly.  But that’s exactly what I needed to do.  I needed to let go and trust Him with all of her disabilities and all of her abilities.  I needed to realize that He wasn’t expecting Cody and me to do this on our own.  He was expecting us to trust Him with her.  She isn’t ours, she is His.  Once I realized that, she was free to start becoming who He has made her to be today – and beyond.  I am so proud of who she is becoming.  She truly has a heart of gold, and is the most loving and thoughtful person I know.  We are beyond blessed to be her parents and get to watch her grow up.

Becca Hugo Collage
Becca with her teacher, Ms. Hudson, by her school sign, in the school garden, and with her principal, Ms. Palmer.

I recently asked her to finish some famous proverbs with whatever words she thought fit best.  Some of them ended up super silly.  But some of them ended up with my mouth hanging open.  I’ll share those here.  Because it speaks to the depth of her thoughts, the depth of her faith, and to possibly why the entire first grade team of teachers chose HER out of all of the kids they could select from.

It’s always darkest before … sunrise.

Never underestimate the power of … Jesus.

Don’t bite the hand that … does good.

If you lie down with dogs, you’ll … get licked all over your face.

Love all, trust … God.

An idle mind is … irresponsible and lazy.

Happy the bride who … married a good man.

Laugh and the whole world laughs with you, cry and … the world helps you.

There are none so blind as … the one who does evil.

Children should be seen and not … be ignored.

When the blind lead the blind … to Jesus, He heals them.

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Happy 7th Birthday, Baby Girl! I love you, my Becca Boo!

Dear Ms Walsh

I am NOT a political person.  And this is NOT about to be a political post.  This is, however, a reply to a statement made by a politician.  Rather than reply with my first thoughts, I have let myself stew for a couple of days.  My mind has run the full gamet of my thoughts and I have come back to the fact that this woman must be incredibly lucky.  Yup.  She’d have to be.  To have never once had a need for a nurse to care for her.  But if in fact, she has only ever encountered the .001% of nurses that don’t care about their patients, then she is perhaps the most UNlucky person in the world.  She’s one or the other.  Because I can’t believe that someone who had encountered the 99.999% of nurses who are absolutely phenominal could ever make the kind of stupid and extremely callous and painful statements she has made.   I have decided to mail her the following letter.  It will go in the mail this week.  (Again, keep in mind- I don’t DO politics, people.)

Dear Ms Walsh,

Hello.  I’d like to introduce myself.  I’m a mom of three from San Antonio, Texas.  I’m a preschool teacher.  I just wanted to send you a letter and say that right now I’m sure you’re receiving a ton of mail from all over the country.  Probably a lot of craziness.  Who knew the words you said could cause so much nationwide commotion, right?  Well, I just wanted to encourage you.  Lift you up a bit through all of the nastiness you may be hearing, by sharing a miracle with you.

I wanted to tell you my story.  Well, it’s not really mine- it’s my daughter’s.  It’s a pretty long one, but I’ll summarize somewhat.  Our little Mirielle (“Elle”) was born last February, right on time and perfectly healthy.  When she was 10 1/2 weeks old, she got RSV.  She ended up in our Children’s Hospital here- CHOSA.  She just kept struggling, and after a couple of weeks ended up with a staph infection from her feeding tube (through no fault of the hospital staff).  Her lungs were super, super weak.  When the highly trained staff went to intubate her, her lungs collapsed, and she “coded.”  They were able to bring her back.  She ended up needing six chest tubes, and the team of highly trained medical personnel determined that she needed to be placed on ECMO life support.  (It’s a machine that basically acted as her lungs for her- her blood was pumped by her heart through tubes into the machine, where it was oxygenated, then pumped back into her tiny little body, circulated back to her heart, and then the process started all over again.  Constantly.  For eight and a half days.)  

During that time, she had not one but TWO nurses by her side- CONSTANTLY.  One was managing the computer for the pump, monitoring every number and never waivering from the screen- for a full twelve hour shift- and the other was managing Elle’s every personal need.  And she had a lot.  She was receiving a LOT of medications through various IVs and ports and there were many numbers to monitor on her screens, not to mention she needed diapers changed, and her eyes didn’t always stay closed because she was so heavily sedated, so she needed eye gels applied and her lips would get very dry so she needed cream on them, and lotion to keep her skin from cracking.  Plus, she had to be rotated every couple of hours to keep her tiny body from getting bed sores.  So they attended her every need.  Constantly.  And they sang to her.  And they played her music and talked to her, and made beautiful artwork by painting her hands and feet- subtly telling us as parents that they realized fully that the bloated tiny little blob on their table wasn’t just some doll, but actually there really was a little girl trapped inside.  Our little girl.  Our precious baby.

They loved her and they cared for her.  At the same time, next door, a little guy passed away.  He never had any visitors that I had seen.  He had his sweet nurses.  When they weren’t doing their nine million tasks, one of them would be just sitting by his side, holding his hand.  Or singing to him.  And then he was gone.  When I saw the gurney come to get him, I wept.  Not for his parents, wherever they were.  No, not for them, but rather, for his nurses.  Because they loved him when he had noone.  Just as they loved Elle, who had us, they loved him.  He didn’t go alone.  Because that’s what nurses do.  

I would venture to say that if a nurse happens to have a spare minute, they might be found playing cards, sure- with a patient whose parents had to step out and that little girl just needed to not be alone when she woke up in the middle of the night and couldn’t sleep.  Because even twelve year olds get scared.  Or maybe they might be found playing cards with the elderly veteran down the hall whose wife passed away two years ago, and his kids can’t stay at night because they have kids of their own, and he just can’t sleep.  Or maybe you might even find a nurse in a hospital room playing a quick round of go fish with a little boy whose mommy is sick and he’s scared and daddy just had to take a minute to himself.  Because trust me, if you can find a nurse anywhere in this country playing cards, he or she probably hasn’t eaten lunch, or gone to the bathroom, because that game of cards is more important than his or her own personal needs.

You see, one day I happened to overhear a conversation that one of Elle’s nurses hadn’t had lunch the day before, and I realized that was because she had never left Elle’s side.  So I made a mention to the Sister who was present and helping our family to please make sure that the sweet nurse had someone to cover her break so she could eat lunch that day.  She was so concerned with my baby’s health that she didn’t even think to eat lunch.  And that’s the NORM, Ms Walsh, not the exception.  Nurses all over this country, every single day, they fight hard… and yes, they lose some.  But then some, like Elle, get better!  They go home and they become the reminder to those nurses of why they do what they do.  They help patients on the brink of death.  And they care!!  They get so close emotionally to each and every single one.

Elle is a miracle story- she shouldn’t have made it.  But she did!!!  And she had so many nurses along the way who fought for her health.  I encourage my older kids to pursue their interests, and I will with her as well, but I sure hope she grows up wanting to be a nurse.  Because I don’t think there is any nobler career choice she could ever make, and what better way for her to pay back the life she’s been given than by helping others- by being a nurse.

So please, Ms Walsh, as you face backlash from all over the country, take this letter as the encouragement it is meant to be!!!  Your statement was NOT entirely wrong.  Nurses might play cards.  You just were entirely wrong in your implication that they sit around and play cards with each other and place bets and have tons of free time.  Because free time isn’t in their vocabulary.  There aren’t enough nurses to properly care for everyone in most places.  And they have so much to do they can’t possibly get it all done during their shift and frequently work way over just to get everything done.  But be encouraged – if you or one of your loved ones is ever in the hospital, you don’t have to worry about the level of care you/they will receive!  And if you want to bring a deck of cards, one of your nurses might just skip lunch to play a quick game with you.

Please look at the photos I’m including and smile.  Know that nurses here in Texas did more than just their jobs, and that actually one of her nurses has since moved on and is now serving the citizens of your great state!  That’s right- you’re blessed right now with one of the most fabulous people Texas could send to you!  Treat her kindly, and with respect, I beg you.  Here are some pictures from when Elle was in the hospital, and then here she is now- thanks to nurses.

May God bless you to never have to experience having a loved one being cared for our nation’s finest.  But if you do face the inevitable, I pray you experience a change of heart as you see their dedication and their love.  God Bless.

Christy Hinnant,
Mom of Mirielle

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elle during and after ecmo
These photos show her on ECMO, then a few days after being taken off the machine, when she turned three months old, and then on May 22, 2018, when she came home.
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Easter, 2019 – a year later
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Easter, 2019 – a year later

A Letter To Myself – in the past

Dear Younger Me,

There’s so much I could say.  You’re only a year younger than me right now.  But there is so much coming ahead of you.  Treasure every moment.  There is going to be fear you’ve never felt.  There is going to be joy that you can’t imagine.  There will be sorrow beyond belief.  It will be a rollercoaster ride.  But there is nothing I will say to try to prevent any of it from happening.  I won’t tell you what it is, or how it happened.  I won’t tell you.  But I will say that in the end, it will all be worth it.  You will grow closer to your kids than you could ever imagine.  You and Cody will have a relationship that is so much deeper than comprehension.  Your faith will be tested, and will be found to be strong.  You aren’t without fault.  You will YELL at God.  Both in your head, and literally out loud.  You will be scared.  You will be angry.  You will lose a LOT of sleep.  But you will learn lessons I couldn’t begin to outline in a simple note.  It will be worth every moment of agony.  It will be worth every single sleepless night.  It will be worth the PTSD that is left as a shadow.  Because you can’t truly know the joy of life without tasting the fear of death.  I wouldn’t want to do it again.  I pray you never relive this past year in any form.  But if we do, I know from the year I’ve just come through that we will survive because God will carry us.  He will carry you high on His shoulders this next year.  Because there will be times you can’t even begin to walk.  And I promise you, He will never, ever let you down.

-Your self, one year in the future

This note was inspired by the following song:
Dear Younger Me
by MercyMe

Dear younger me
Where do I start
If I could tell you everything that I have learned so far
Then you could be
One step ahead
Of all the painful memories still running thru my head
I wonder how much different things would be
Dear younger me,

Dear younger me
I cannot decide
Do I give some speech about how to get the most out of your life
Or do I go deep
And try to change
The choices that you’ll make cuz they’re choices that made me
Even though I love this crazy life
Sometimes I wish it was a smoother ride
Dear younger me, dear younger me

If I knew then what I know now
Condemnation would’ve had no power
My joy my pain would’ve never been my worth
If I knew then what I know now
Would’ve not been hard to figure out
What I would’ve changed if I had heard

Dear younger me
It’s not your fault
You were never meant to carry this beyond the cross
Dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

Every mountain every valley
Thru each heartache you will see
Every moment brings you closer
To who you were meant to be
Dear younger me, dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart a brand new heart
You are free indeed

I See You

I see you.

You’re the friend who lost her baby too soon and lives daily in agony.  While I can’t fathom your pain, I can imagine your grief.  I see you.

You’re the friend who had a miscarriage last week.  You walk around trying to live life as though nothing ever happened, but I feel you pain and I know the depth of your grief.  Some who find out will say, “at least it was early,” as if that somehow makes it less of a loss.  Trust me.  I know.  I see you.

You’re the friend who has a baby up at all hours of the night.  You’re so thankful to be home after five painfully long months in the NICU, but you really just. want. sleep.  And it’d be so nice if a nurse could just cover this feed for you… but oh yeah, you’re at home now.  I feel the depth of your thankfulness, and yet I also know how very hard it is to adjust to life after the hospital.  I see you.

You’re the friend whose husband didn’t turn out to be the man you thought he was.  He abused your adopted children and in the process, ripped out your heart slowly in a way you never thought he could possibly.  I can’t begin to fathom the depth of your pain, or your sorrow over all that was lost.  I see you.

You’re the friend who would deeply love to be loved.  You try to hide it by laughing it off and saying you’ll be single forever, but I know.  I see it in your eyes.  I would dearly love to find you your Mr. Right.  You pour your heart and soul into your nephews, but I know you would have loved to have been a mother to your own little motley crew.  I see you.

You’re the friend who pulled her son from public school as a last ditch effort to not lose him completely.  He has so. many. unique. needs.  He is an amazing kid, but you often don’t know who he is.  You’re giving him your everything in an attempt to save him – from himself.  And to save his siblings from him, too.  I see you.

You’re the friend who just started sharing your knowledge online one day, and suddenly became a “sensation” in certain circles.  Now, your entire life is critiqued and judged by women you’ve never met, and you feel you have to justify everything you do and don’t let your kids do.  I have no idea how many emails and messages you receive on a regular basis, but I know it has to be overwhelming, all while you’re just trying to be a mom who helps her kids the way they need to be helped, and makes some money while doing it.  I see you.

You’re the friend who moved hundreds of miles away and is now dealing with the fallout of the world of friendship – few are for forever… most are just friends for a time.  And it hurts when people you thought were for forever, are actually just for a season.  I’m still here.  And I see you.

You’re the wife of a pastor in a tiny remote town, just trying to do what God called you to do.  You’re an awesome mom, but you’re just plain lonely.  You long for in-person friendship and fellowship from other women who can relate to you and don’t avoid you because you’re the pastor’s wife.  I so deeply wish our long-distance friendship could be the in-person relationship that you so desperately need.  I see you.

You’re that teacher at the car drop-off line at my daughter’s school.  I don’t know what grade you teach, but I know your well-groomed look.  You’re dressed to the nines and hair curled just so.  You’ve got cute makeup and an empty left ring finger.  When I rolled down my window and told you you looked nice today, I saw something else, too.  You almost cried.  You’re hiding something inside.  And I’m so glad I said something.  You told me I made your day, and I’m so glad I took those two seconds to really see you.

Maybe you’re a mom who is battling cancer, or a mom who just started a second job.  Maybe you’re single, or maybe you’re married.  Maybe you’re just out of college, or going back in your 50s because you never really followed your calling.  But whoever you are, whatever you are dealing with in life, I see you.  I feel your heart longing to be loved.  I feel your heart desperate to break up with fear.  I know the weight of your worry.  I know your need to be beautiful.  And you are, sweet sister, you are.  You might not fit into a six or even a sixteen, but either way, you are exactly who God made you to be.  And I see you.  Do you take the time to see others for who they are?  Do you allow yourself to feel their pain?  It’s overwhelming.  But it’s beautiful.  God gives us friends to help pick each other up when the going gets rough, and to encourage us that God will never leave us, either.  Because most importantly, He sees you.  And He is your King.  He is your Father.  He is your Abba (Daddy).  

Life After the PICU

Haven’t read about our hospital journey this spring?  You can still visit our CaringBridge page any time here.

 

I haven’t written a blog post in a long time.  Not because “nothing” is going on, but because I just don’t have anything to say.  Not because there is nothing to say… but because there’s too much, and not really all the right words to express it.  I’m not political.  I didn’t used to get into “current events,” and now I really don’t.  Perhaps because my world goes so much deeper than whichever politician someone chooses to bash at the moment.  Because I have been changed.  Because I still think about the kids and the parents and the nurses and the doctors every single day.  I wonder who is there now, and what they are going through.  I wonder if there is some small way I could help.  And I feel.  Deeply.  Madly.  I love my kids more than I could have ever possibly before.  I treasure every. single. moment.  I find myself wishing there weren’t so many fights, of course.  I find myself wishing I didn’t have to discipline, sure.  Not every moment is perfect and treasurable.  But yet, it IS treasurable – simply because I have them.  All three of them.  Here with me on Earth.   Every moment is a blessing – a gift that I’ve somehow been granted.

They are growing and healthy and ALIVE.  And I now know what that means.  What is REALLY means.  Because I feel the pain of those who have lost.  And I know how easily I could be one of them.  So I stand beside them and I pray for the right words to bring comfort.  I pray for the knowledge of when to be silent, and when to speak.  And I treasure the little moments on their behalf.  Not a day goes by that I don’t wonder what life would be like if April and May had never happened.  Would I really soak it all in?  Would I resent dirty diapers and having to teach her the difference between right and wrong?  I think of all the friends I have now and the amazing people whom I have met that I wouldn’t even know existed.  And I think of all the work God has done in my heart and how He has strengthened my faith, and I can begin to see a glimpse of the purpose in all of it.  And I am finally to the point where I’m grateful.  Grateful for the pain.  Grateful for the terror.  Grateful for the countless nights of lost sleep.  Grateful for life.  

So when I see someone ahead of me in traffic cut someone off because they almost missed their exit, I wonder what is happening in their life.  I wonder if they even realized they cut someone off, or if in the fog that is their world, they just went where they needed to go because they are robotically going through the motions and just barely surviving moment to moment.  I’ve been there.  And I wonder how many people I may have cut off in traffic without even seeing them.  How many accidents my angels prevented  – how many cracks in the sidewalk I never tripped on, how many playground mishaps the bigs never had… because God was working on a much bigger plan in my life.  

No, it isn’t that I’ve had nothing to write.  It’s just that right now I’m seeing a bigger picture than I’ve ever fathomed, and it’s hard to see the world like other people.  You could say God gave me a teensy tiny nibble of a morsel from an apple from the tree of knowledge, and I’m still processing it.  He’s still teaching me from it.  He decides when we’re ready for that knowledge, and sometimes I still don’t think it’s fair that I had to take that nibble.  I don’t think it’s fair that mamas and daddies have to go through such immeasurable sorrow that we have witnessed in friends.  This life is certainly not fair.  But I’m starting to maybe get a glimpse of the truth – that the purpose behind each and every moment for each and every person is so much bigger than we’ll ever comprehend.  

I guess it’s just that my life right now is so much bigger than who is or isn’t president, or what some policy is on something, or what happened in someone’s past that does or doesn’t make them eligible for a job.  Not that those things aren’t important, but right now my brain is processing at so much deeper of a level that I just can’t focus on that stuff.  I have three kids and a job and medical bills that roll in every month like clockwork.  I have a house to keep decent for realtor showings and the stress of trying to find a new place for our family.  I need to help get homework done and communication journals signed and books read and letters learned and pen pal letters written and bottles made and diapers changed, oh and chase a very mobile baby.  Those things?  They are everything.  And yes, I’m thankful for those mundane, exhausting tasks.  Because they remind me I’m alive and that He has placed me here with a purpose.  They wear me out.  They wear me thin.  They threaten to shift my attitude on a daily basis.  But something stops me every day and causes me to pause and realize my focus.

I’ve lived on the mountain.  I’ve been in the valley.  And right now I’m relishing the climb.  It’s hard work.  Every day is a different struggle with new rocks to step over and boulders to crawl across.  I know that this climb back up the mountain is not my last climb.  We’ll fall down again.  But just like every time before, He will pick us up and set us right, and begin the climb again.  We don’t make this climb alone.  And we won’t make the next one alone, either.