The Parable of the Parasite and the Backpack

These two little rascals that spend their daytime hours (and sometime nights too) sucking the life out of me are constantly teaching me new lessons. Lately it has been through late night poop parties and backpacks. I know, that is way TMI, but bear with me I am going somewhere with this. Parson has had a nasty parasite, cryptosporidium, that we just can't get rid of. For two months she (we) have struggled and it hasn't been pretty. I have washed my hands 1000 times each day, washed one million loads of laundry and bleached everything in sight. Dr. Bocchini, Parson's new infectious disease doc said it best today. "We must attack this aggressively with multiple agents (especially since it is a nasty parasite)." Friends, it hit me like a ton of bricks...  I'm letting my attitude be attacked daily by nasty parasites and circumstances. It is not giving me diarrhea in the literal sense - but more like what my old PE coach used to call "diarrhea of the mouth". You know the "I cants". The "I don't wanna's".  The "can't I trade places with her for just a day. She has got a sweet life". The "life will never be normal again".  All those pesky little thoughts of inadequacy and stinking thinking. 

"Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think on these things.." -  Philippians 4:8

It is so easy to get caught up in comparing ourselves to others and before we know it, it has spread throughout our life and taken over the place where good and noble once lived. I recently heard this practice described as "pretty people problems".  There is even a Facebook page dedicated to random everyday problems that attractive people have. Most often brought about by over abundance, wealth, name brands, commercialism and in general trying to "keep up with the Joneses".  

I'm am SO guilty. I took Darby to Justice and let her pick out a new backpack for school. (Never mind that her backpacks from the last 3 school years are perfectly fine.) Out of pure guilt,  I am now toting a handmedown "Darby" monogrammed backpack for Parson's diaper bag. Pretty people problems. 

School is about to start and we as a human race are all gonna have the "don't wanna's". I don't wanna get up. I don't wanna wear that. I don't want another sandwich for lunch. I don't wanna cook supper again. I don't wanna go grocery shopping again. I don't wanna bathe the kids again. (Doesn't swimming count as a bath?) I don't wanna wash my hands one more time. (Reckon they will dry up and fall off as a result of good hand washing?) I don't wanna fight with my kid to eat something healthy, anything healthy. Guilty again. Lord help me, the only vegetable my 7 year old claims to like is candy corn- (that is a whole nother blog for a whole nother day.) 

"The thief comes to steal, kill, and destroy. I came that they may have life, and may have it more abundant." - John 10:10 

Forget what everybody else is doing. Go on a FB fast. Forget about those darned dead plants that you forgot to water - (no amount of water will bring 'em back now honey.) Get over the pretty people problems. The other folks vacation is always gonna be better than yours (especially when you haven't even been on one in years).  Their house is always gonna be bigger/prettier/have more storage & closet space. They are always gonna have great hair days and flawless skin. So, forget about the stretch marks and sleepless nights. Quit comparing yourself to everybody else. 

He came that you may have an ABUNDANT life!  He did not come for us to live a mediocre, so-so, unsanitized kind of life that I have been wandering around in. MORE abundant - in terms of joy, peace and people - not another backpack full of over indulgence. The pretty people problems are spreading like a bad parasite and robbing us of our JOY.  Sanitize yourself!  

So turn up the Lionel Richie. Sing some of your favorite hymns. Put your hair up in a ponytail. Go play outside with your kids. Fill up the tub for a good soak. Go barefoot. Get on the riding lawn mower and turn on the "good music for a good day" playlist. Sit under the shade of a magnolia tree.  Watch a sunrise. Watch a sunset. Better yet - watch both in one day. Go on a date with your main squeeze and get the drink with a little umbrella (pretend its a vacation). Turn up your favorite jam and have a dance party in the car. Call your BFF.  Read your Bible. Have a good cry. Say cryptosporidium 3 times real fast (it'll make you feel like a superhero). And for goodness sakes, let the kids skip a bath tonight. (Mammaw said it'll wear out their skin anyhow.)

Do yourself a favor. Wash your hands. Say your prayers. Quit listening to the devil. Stop the stinking thinking. Quit taking yourself so serious. Use some sanitizer on your life. Get rid of the diarrhea of the mouth. Attack it aggressively. Enough comparing yourself to others. God has richly blessed you and me. Think on these things. We have got it good-- the ABUNDANT life awaits. 

They just "get it"

Our family is in Houston, Texas for Parson Blue to represent Team Texas and Texas Children's Hospital at The Transplant Games of America.  It is so hard to put it into words. It is difficult to explain.  But I found MY people this weekend. People like me. People who "get it". 

I found the mother who knows what it feels like to pray/plead over the hospital bed of her child with every ounce of her being for just one more day with her child while you wait on "the call".  I found the mother who gave a huge part of her soul away to give another child one more day. I found caregivers like me who have set alarms at all hours of the day/night to administer life saving anti rejection Meds and other various medical treatments.  I found amazing brave big sisters and brothers who have daily taken a back seat to a sick sibling. I found other strong siblings who lost their best friend but will tell you about the importance of organ donation. I found miracle workers who are "on call" to make connections between life saving organs being harvested and transplanted all over the country  I found other families whose lives were rocked just like ours who now celebrate a "new normal" because of organ donation. I found people old and young who celebrate EVERY single day that they have been given and do not take even one single breath for granted. 

After struggling over the past two years in my new identity, it feels so good to find my people. The ones who can't sleep because of the fear of rejection. The ones who are startled awake at all hours of the night because of screeching medical equipment alarms. The Momma's and daddies who have made hundreds of trips for physical, occupational, and speech therapy visits like me.  The ones who scour the internet to get info on the latest diagnosis or medical term that just came on their radar. The ones who know about kangaroo pumps, 12 French Mickey buttons and prograf. The people who know what it feels like to not sweat the small stuff. The ones who have run out of tears to cry.  The people who have more doctors cell phone numbers in their contacts than friends. The people who now have doctors and nurses as a part of their family. I found other people like me who have been carried by their friends, family and small town armies through prayer and support on the most difficult days of their lives. 

Clearly I don't need that alarm that I set somewhere around 2am to wake up at 6am. Why am I wide awake at 3:47am reliving it over and over!?!?  This momma can't sleep because she is so excited because her family went to a baseball game last night like a normal family. I cannot stop thinking about brave donor families. Brave transplant recipients. Brave siblings. Brave doctors. Brave nurses. Brave kids like my Parson Blue and brave people like me. 

I LOVE to tell Parson's story and feel an overwhelming responsibility to share it until she is able to share for herself. I am passionate about organ donation - it saved her life. I cannot wait to wake up and walk in a 5k tomorrow morning and celebrate LIFE (tutu's and Texas shirts included).  Oh how I needed this. There is something so healing about being around your people.  I cannot wait to find more of my people tomorrow - the ones who "get it".  

Brave Team Texas - TX Children's kiddo. 

Brave credentials. 

A Brave donor family. 

Two brave transplant kiddos. 

(Lung/liver & lung) 

Brave Blue. 

Brave big sister. 

Brave transplant Buddy. Kendall. 

What IF it is all sacred?

What IF it is all sacred?

I mean the loads of laundry, the mowing of the yard, the spelling words, the caring for sick loved ones, the endless wet beach towels and bathing suits, the committee meetings, the chickens in the kitchen, the sight words, the pink eye, the flat tires, the genetic mutations, the stepping on lego's in the dark? 

There is nothing like a devastating medical diagnosis to get your attention right quick and absolutely change the way you think. I used to worry about this and worry about that. But somehow in the midst of the storm, an overwhelming peace came to me. Now the things of this earth grow strangely dim. The things that I used to think mattered, just don't really matter much anymore. 

"Turn your eyes upon Jesus, look full in His wonderful face, and the things of earth will grow strangely dim, in the light of HIS glory & grace."

I do some of my best thinking while cutting the grass on the riding lawn mower. One of my favorite songs to listen to while mowing is "Lead of Love" by Caedmon's Call (an old group I listed to while in college).  The song has a great line that says "Had to walk the rocks to see the mountain view. Looking back I see the lead of love."

You gotta admit, it is hard to beat the view from the top. But sometimes you have to cross the rocks to get to that awesome view. Most of the time those rocky patches seem to sneak up on us when we least expect it. Makes me think of an old saying I heard my Daddy say a million times...The bridge is washed out and I can't swim and my baby's on the other side. Sometimes life sends us detours (the plan B, curve ball kind of stuff) that you don't have any other choice but to "gut it up" and take it on. What IF all those things are sacred? 

sa·cred  ˈsākrid/   adjective

1. connected with God or dedicated to a religious purpose and so deserving veneration.

What if the Legos, the bills, the diagnosis, the detour ... What if it is all connected with God?  What if all that "stuff" deserves great reverence from me? What if I have to walk the rocks to see the mountain view? 

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.  - Colossians 3:17

Oh my sweet friends, it ain't easy, and it ain't fun, but please don't be scared to walk the rocks. Everything is sacred. God has amazing, SACRED things out there for you.  I promise, looking back you will see the lead of love. 

From Caedmon's Call "Lead of Love" ...

Looking back at the road so far, It sure has left it's share of scars

Mostly from leaving the narrow & straight.

Looking back it is clear to me that a man is more than the sum of his deeds. 

How you make good of this mess I've made, Is a profound mystery. 

Looking back, I know you had to bring me through.

All that I was, so afraid of, though I questioned the sky, now I see why.

I had to walk the rocks to see the mountain view. 

Looking back I see the lead of love. 

My Secret

Over the course of the past two years, many folks have told me  "I don't know how you do it."  So, even though I am not one to give away family secrets, I am gonna let you in on my secret for success.  

I am the daughter of Janie Sheffield. On November 5, 1972, God saw fit to make me her daughter. She and my Daddy taught me absolutely everything I know. 

My Momma taught me how to do the right thing even when you don't want to. She taught me how to be hard headed and ask questions. She taught me how to appreciate people - all sizes, all ages, all shapes, and all colors. She taught me how to dig in my heels. She taught me what it means to work hard and play hard. She taught me that tough times don't last, but tough people do. She showed me how to love unconditionally. She didn't always like me but she ALWAYS loved me. She taught me how to tackle hard tasks by eating "that elephant one bite at a time".  She taught me how to give of my time, talents and possessions. She taught me to live life with no "what if's". 

She taught me that there is nothing wrong with crying - in fact it is healthy.  She taught me how to make it after losing someone you love dearly. She taught me a love for my family and my savior.  Because of my momma I know that everything is always gonna be ok. Because He lives, I can face Tomorrow. She also taught me that you can't ever sing that song without crying.  She taught me how to pick a man and love a man.  Momma taught me how to use my mind and hands to be creative. She taught me to measure twice and cut once. Momma taught me how to work hard and play hard.  

Momma taught me how to tough it out when times are tough and soak it in when Life is Good. Give it all you got - even when you don't like what you got. Whether it be genetic mutations, ADHD, lung transplants, or dyslexia -- my momma had me ready for whatever life brought my way. Momma taught me that I can do anything.

I am terribly sorry that you were not the lucky one chosen to be raised by this mighty woman. So here's to my Momma, who taught me how to do this life right. I love you!  

Bumbling Boomerang

You've heard of bumbling idiots...well I feel the need to set the record straight.  I am a bumbling boomerang. 

After quite a few months in blog-abstentia, here I am. (Actually during this time away, I started 9 different blogs, but never finished them. Maybe it will be good stuff for another day.) I could give you all a whole buncha great excuses as to where I have been, but it would all be just that - excuses. Truth is, while I was bumbling around in a physical, occupational and speech therapy stouper -- I got swept away by an out of control, dyslexic, ADHD, curly headed tornado. 

Focus people. I'm gonna need you to FOCUS. When the much publicized "sight word" debacle stretched from 2012 all the way into 2014,  Darby finally got all the people in her corner to realize that there was way more to her story than we knew.  After quite a few "Darby Clark Herrington Fan Club" meetings, a few diagnostic tests, and some new "focus" meds, the glorious light has come on for my curly headed tornado. She has made amazing improvements in reading and school since January and LIFE IS GOOD!  This kiddo has realized that letters form words, words form sentences, and sentences tell a story. Darby has gone from US reading her the Bible stories at bedtime, to HER reading the stories now. She is a new kid. Can I get a hallelujah?!?!?!  

Parson has gotten quite a full head of curls now as well. I guess I have to specify which curly headed tornado I am referring to nowadays.  Perhaps I should name the storms - (maybe like Maggie used to refer to my sister and me) - the big'un and the littl'un.  So, the Littl'un has kept me hopping also. She has 3 physical therapy, 2 occupational therapy, and 2 speech therapy sessions a week. (Why am I so tired if that is only 7 hours of actual therapy? ) Honestly people, I have never worked harder in my whole life.  On top of that, we have the occasional doctor visit, various tests and infusion center appointments. Parson still has developmental delays, is slow to walk, slow to talk and even slower to eat by mouth. But you know what?  She has been given the "all clear" by her doctor to get out and about and be exposed and she is loving life and ROCKIN' her new lungs!  (Afterall, we didn't get new lungs to live in a bubble.) 

While Parson was so sick, I saw something about life being like a boomerang. You get back what you send out. I have thought about that little ditty a lot in the past few months. Some circumstances lately have left me a little jaded, others have left me a lot jaded. And I have been bumbling around for the last several months in boomerang limbo. I mean, if you don't send anything out, you don't get anything back. Being completely consumed by my own two children's lives has gotten the best of me.  Exactly as it should be. I can't think of a better way to invest. 

By not "working", I have really struggled to find my worth since giving up my old day job and paycheck. It is absolutely crazy how the devil has used that on me.  I have felt like I am not sending any boomerangs out to help, when in reality I am investing in the most precious of all kids - my own. 

Please understand that I am not putting my children's business out there to belittle them in anyway. I thought sight words and oral aversion were gonna be the death of me. I know there is somebody out there in the trenches that needs some encouragement.  Right now you think what you are going through is gonna kill you - but take heart and send out your boomerang.  YOU WILL SURVIVE! Joy cometh in the morning. 

Take it from this bumbling boomerang -- You send nothing out, you are gonna get nothing back. Throw out your boomerang and invest in someone else's life. I promise it will come back to you when you need it most. 

(Photo credit: Nadia Martindale) 

Count YOUR blessings.

After getting a routine check up at the doc yesterday and waking up early for lab work and my first mammogram ever today - I feel ALIVE!  

The weather has been GREAT. All of my people are healthy. Life slowed down enough for me to take care of some overdue things on the "to do" list. And Christmas music snuck in to my house yesterday on the satellite radio. :) You know, I could easily get bogged down in the fact that Parson isn't the least bit interested in eating and still deSating at night -or that Darby is struggling with spelling and reading --but none of that matters - we are ALIVE! 

Lemme tell ya friends, there is nothing like a major healthcare crisis to put things in perspective. It gets me every time when I start to count my blessings.  Whew.  Overwhelmed. TODAY is a huge blessing and just being alive is a huge blessing. I have got air coming through my nose. My heart is beating. That is HUGE!  Are you with me? 

I watched three great internet videos recently that reminded me about perspective. One is of a mother listening to her daughters heartbeat after they chose to donate her organs after a tragic accident. She heard her daughters heart beating providing new life for another woman. Whew -that was something. The other piece was about UT football player Case McCoy overcoming a childhood filled with medical issues to become a big success on the football field. (I love a good sports story - especially the ones about overcomers.) Then there was the one of a lady about to undergo a double mastectomy - but she first invited her surgical team to join her in a dance party in the operating room. She rocked that dance party and surgery. THAT is GOOD stuff. Those people are ALIVE!  

When I count my blessings,  I become completely overwhelmed.  You oughta give it a try. Here is a little secret - count YOUR blessings, not your neighbors. When you worry about others and try to count their blessings - you get all tangled up in things that don't matter and you will come up feeling empty. Don't focus on the things you don't have or things you wish you had - Count YOUR blessings. When you start to focus on what IS and what you DO have, you realize that you are ALIVE. God blessed YOU. Your heart is beating. You have purpose. You are ALIVE. 

It is all about perspective. You can worry that you HAVE to take "all those medicines" or be thankful that you GET to take "all those medicines" -- Taking the meds means that you are still ALIVE. You can worry that you HAVE to clean up the living room AGAIN because your family made a big mess or be thankful that you have a family to clean up after. So I guess I gotta be thankful for that pink lizard that came out of the last load of laundry.  Same thing with dirty dishes, bills to pay and homework.

Deuteronomy 28:1-6

1 "And if you faithfully obey the voice of the LORD your God, being careful to do all his commandments that I command you today, the LORD your God will set you high above all the nations of the earth.

2 And all these blessings shall come upon you and overtake you, if you obey the voice of the LORD your God.

3 Blessed shall you be in the city, and blessed shall you be in the field.

4 Blessed shall be the fruit of your womb and the fruit of your ground and the fruit of your cattle, the increase of your herds and the young of your flock.

5 Blessed shall be your basket and your kneading bowl.

6 Blessed shall you be when you come in, and blessed shall you be when you go out.

"Count your many blessings name them one by one. Count your many blessings see what God hath done."  ........  Your people. Your child's giggles. Your salvation. Your friends that listen.........

The dirty dishes, laundry and homework mean that you are ALIVE!!!!!!!  There is NO doubt, He has blessed you and your basket is overflowing. Let HIS blessings overtake you. 

Parson Update - 4 months out

Parson update...

Four months post transplant and this little rascal is doing GREAT! Seems like she really turned a corner this past weekend. She is starting to bend her legs backward like she wants to crawl. She is reaching for EVERYTHING in sight and really trying to move from her belly front/back a great deal. I really feel like she will be crawling soon.  No doubt, this baby was born to boogie. 

She goes for physical therapy twice a week with Dr. Cary Malone for an hour each visit. We are scheduled early at 6:45 am so we can avoid as many germs as possible.  She has certainly come a VERY long way from the kiddo who could not even hold up her head after transplant. Now she wants to move!  She also goes to speech/feeding therapy once a week for an hour. She is making great improvements in her oral skills, but we monitor her nutrition carefully so it is primarily achieved by pediasure via GTube - 5 feedings a day. She puts food in her mouth but still isn't crazy about swallowing much. She does like the baby food "puff" cereal and has just begun putting them in her mouth all by herself like a big girl. She has a mouth full of teeth and she recently made a BIG step as she now puts her hands & toys in her mouth all the time.   

She gave me a bit of a scare last Friday by running a fever and acting sick for the first time since transplant. She kept retching like she wanted to vomit but she cannot because of her Fundoplication surgery. We rushed to the doctor and she was almost back to normal before we got there. :) I probably over reacted, but her lethargy and fever gave me quite a scare. :) She is completely fine now. 

Each morning she takes 11 medicines at 9am. Each night she takes 6 Meds at 9pm. (She has a few other Meds she takes as needed.) The meds are given thru her GTube in her belly.  I monitor her oxygen saturations with a pulse oximeter on her toe/foot. I also take her blood pressure and temperature several times a day.  

Tomorrow we will head to Lufkin to see our friends at Dr. Fidone's office so she can get her first Synagis injection of the season. This is an antibody injection that provides extra protection during the RSV/cold/flu season.  She will get the shots once a month through the month of March. 

Parson loves to be entertained by her big sister Darby. She likes making funny faces and has begun to laugh out laugh more often. She loves playing with matchbox cars.  She likes listening/dancing to The Commodores on the record player.  She loves riding outside in the "green machine".  She is saying "mama" and working on "dada" and "bye bye".  She loves to play and laugh on the bed with her Daddy.  She sleeps all through the night, but she doesn't like naps during the day.

We will head back to Texas Children's for a clinic check up with Dr. Mallory, lung transplant physician/Pulmonologist,  on October 28th.  

Thanks for keeping track of Parson's journey. We are so very thankful to be able to give such a great report.  

Pancakes for supper. 

Hands in the mouth. 

Riding in the "Green Machine" 

Best Buds ( mmmm - this scooter handle tastes yummy. )