Welcome to Townes’s site. Please sign in to show your support.

Journal

View comments
May
31
2021

Oh so Brave -

05.27.21

 

In some ways it feels like just yesterday, I was sitting here writing a Memorial Day post and update on Townes.  The good news about it feeling like yesterday is that I remember it, which means I had come out of the “fog.”

 

I have friends that always described those first few months with a newborn as a haze.

 

“Like I don’t remember much” or “it all blends together” or “it took me awhile to realize I hadn’t even showered…in a couple days” and once they saw my very perplexed and somewhat concerned reaction it was always followed with “at some point, you resurface, you reenter the world functioning again.” I remember thinking, ‘oh good, something to look forward too.’

 

While for us, maybe our first few months looked different, and some may argue we were getting more sleep than most, at least initially (always look for the silver lining in your circumstances), much of it does seem like a haze.  While certain instances and memories are clear and vivid, the concept of time during those four months is cloudy. But, alas, maybe you can relate too, as during that time we were all navigating new terrain.

 

These past few weeks I have been thinking about the power of music. It is fascinating to me that generally speaking its hard to memorize even the simplest of quotes or even scripture. It doesn’t mean we can’t do it, it just seems to prove more difficult than expected. But put these things to a beat and you won’t forget it.

 

Music also has a way of branding us. No, I don’t mean by the type of music we listen too, but I mean it becomes seared on our hearts like a stamp. For example, a song you haven’t heard in years suddenly comes on the radio or shuffles through on Pandora or someone mentions a cherished album or artist and instantly you are somehow transported back in time to a place, to feeling, to an outfit, to old friends, to an old house, a party.

 

I can name so many songs that would do it –

 

“I saw the Sign” by Ace Base plops me in my friend’s room listening to her boombox to her first tape (yes tape…not even CD, not a thing yet). We are singing at the top of our lungs while her older (much more mature) sister bangs on the door and asks us to be a little quieter, but we are too excited because the smell of her mom’s famous chocolate chip cookies is drifting

 

Or

 

Someone mentions DC Talk and suddenly I am standing in the basement of another friend’s house for a church lock in in a tie dye shirt

 

Or

 

“We are the Champions” comes over the speaker and immediately the feelings of losing the basketball State Championship Game feels like just yesterday but then at the very same time elated and celebrating remembering that we returned the very next year to beat the same team. Suddenly I am a champion, and the feelings sweep over me like a wave, and it feels good to relive that moment.

 

Or

 

“Sweet Caroline” starts playing and I am in the beautiful country of Botswana, the wind in our hair, the sun shining, riding with my family through countryside belting out the song because it was our safari guide’s favorite…and he requested it.

 

Music creates nostalgia.

 

Good, bad or indifferent music drums up (pun intended) emotions, memories, thoughts.

 

I don’t have a musical bone in my body or rhythm for that matter. When I sing its always slightly off key and harmony, well that’s just a lost cause but I love music. I love concerts. I love how music can transform you, how it speaks to your soul, shifts your mood when you need it too.

 

We could have a whole day’s conversation I believe on music and its inherent connection to our spirit. After all, God, himself created it and as some theologians believe charged the Archangel, Lucifer, over it. Ezekiel 28:13 “You were in Eden, the garden of God; every precious stone was your covering…the workmanship of your timbrels and pipes was prepared for you on the day you were created.”

 

Maybe another day, we will bang on that symbol; but, for now, I want to contemplate worship.

 

So much has happened in the last month. For better or worse, things around me have started to look “normal” again…

 

For one, there is traffic – hello, why was I not given a warning? And for two, I am saddened to say I have now worn button pants more times than my yoga pants in a week. That’s how I really know the pandemic is slowly fading.

 

Scott and I had the honor of connecting over dinner with a family in town whom we share a connection, organ donation. While our stories are completely different and again not journeys, we would have chosen, the Lord so carefully orchestrated this dinner. I hope to share the story one day, but I want to share this for now, I was reminded of the depths of our Father’s love and the lengths he will go to ensure he meets the needs of his children by how our dinner came about.

 

What a blessing it was for this momma’s heart, a momma of an organ recipient, to hear from the momma of a donor. To listen and hear from this family about their experience and their perspective on the life saving measures of organ donation helped begin to heal the part of my heart that is broken for our own family. And wow, is Jesus ever a part of their story. It is simply amazing. We may even have an opportunity one day to meet, their son’s recipient family as they have a special and close relationship with them.

 

We dedicated Townes’ at church a couple weeks ago. And while, Scott and I both feel as if we dedicated him long ago, it was nice to return to our church with Townes and participate in an event that maybe years ago we would have taken for granted to publicly dedicate him as a child of God and celebrated a fabulous Mother's Day. I will never take for granted the gift I have received to be chosen as this special little boy's mother.

Townes has started screaming with so much excitement when one of us arrives home, the videos I will replay on repeat when the days comes that instead of screams, I receive big eye rolls. He has started crawling on the dogs beds to cuddle and I think my heart may explode. Balls and food are his favorite things and he is becoming a social butterfly like his daddy.

 

And best of all, we have learned that the harvest will be plentiful as Townes will be welcoming not just one cousin in the fall but THREE!!!! AHHHH!!!! What a joy and what a celebration! Both of my brothers and their wives are expecting little girls, three weeks apart and Scott’s sister and her husband are expecting Baby #2 on Turkey Day!

 

So many times, over this last month, praise and worship songs have come on and I have been overcome with unexplainable emotion. Even during one song, “Waymaker” Townes started kicking his legs (something he does when he is excited) and I almost couldn’t keep it together.

 

The feelings of gratitude were so intense. What I witnessed when Townes showed recognition was that he remembered too. You see, we not only played “Waymaker” at the hospital continually, I used to play it while I was pregnant. Sometimes I played it over and over and over again.

 

Some days, I was able to sing the song confidently and other times it was through tears – you see the words that make up the lyrics are very personal to me.

 

You are here                                         And You are
Moving in our midst                           
Way maker, miracle worker
I worship You                                        Promise keeper, light in the darkness
I worship You                                        
My God, that is who You are

 

You are here                                          You are here
Working in this place                            
Turning lives around
I worship You                                        
I worship You 

I worship You                                        I worship You

 

And You are                                          You are here
Way maker, miracle worker                 
And You're healing every heart
Promise keeper, light in the darkness
My God, that is who You are

 

So after about the third time this last month when just the instruments at the beginning of the song brought me to tears, I wanted answers. I knew these weren’t tears of sadness but rather only of joy, of love, and of gratefulness for the Lord’s goodness. And every single time, the words transported me back in time to different moments in our journey. These songs were reminding me of my son’s testimony and of how his life is tiny miracle after miracle.

 

In a flash, it felt as if I had found a comfortable seat in front of a movie screen with a big bag of greasy, buttery popcorn to watch a movie reel of each instance the Lord showed himself in small and bigs ways in my son’s life.

 

One time, Scott and I were at church very early after hearing the diagnosis. We only had each other, and the song began – I remember Scott took my hand and we raised them to the sky as if to say, only you and we believe. That was just the beginning.

 

Other times it was to and from the doctors or on walks with the dogs in the morning and then it was over and over again in the hospital. What I was feeling was more than nostalgia, my spirit and soul were reliving the goodness of God. The songs are my connection to the outcome of my faith, the worship itself is my connection to the Father.

 

David is known for many things; one of them is for many of the beautiful writings of worship and praise within the Psalms - oh how he reminds us who our Father in Heaven is even during trials and tribulations (and trust me, if you have read any about David’s life you know he had them, a lot of his own doing, what encouragement!).

 

David reminds us in Psalm 23 who the Good Shepherd is, what we can expect from him and to whose house we belong and in one of my favorites, Psalm 103, David fills us up with awe and wonder for our Father in Heaven.

 

Scattered all throughout scripture we can find nuggets of truth illustrating for whom we have been purposefully and intentionally created and for what, music, worship, and praise. Isaiah 43:21 states simply, “The people whom I formed for myself that they might declare my praise.”

 

I was listening to a sermon by my pastor the other day and he was teaching on worship – he stated simply ‘when we worship, we position ourselves to receive from the Lord” And it hit me, when we worship, we are reminded that he is the GREAT I AM, he is a miracle working God, he is a healer, a protector, a promise keeper. When we sit in these truths with our minds focused solely on the benefits offered to us as his children because of who he is, not who we are.

 

The greatest revelation began to form.  I have often been asked, ‘how did you do it…walking forward with Townes’ diagnosis not knowing the outcome? With all the uncertainty?’

 

This is not to minimize our hard days or even the grief we walked through because we did experience those, it’s to say that the Lord in this moment revealed to me ‘the how’ we were able to walk forward with a belief of Townes’ full healing, with a peace and a certainty we couldn’t explain.

 

From the time we learned of his condition to well after we came home from the hospital, we only listened to Praise and Worship music. We only allowed those words to enter our ears and it was those words that placed a seal on our hearts.  Found within these songs are assurances of hope, covenant truths of to who we belong, promises of love, of healing, of the impossible becoming possible, of miracles. These songs are filled with testimonies of who God is and what he has done.

 

Entering into worship shifts our perspective. Worship has a way of lifting our eyes off ourselves and back to the one with whom anything is possible. Instead of looking down our eyes must gaze up.

 

I share all of this because, while this month has been filled with many highs there have also been disappointing moments, times where we experienced deep sadness and grief from the news of others close to us and even for some, we do not personally know but their journeys all too familiar, and then others that produced uncertainty for us.

 

We were recently referred to a nephrologist (a kidney doctor, yes news to me too) because our transplant team was concerned over one of Townes’ levels directly correlated to his kidneys.

 

As an organ recipient, one of the things you are told is that there is a chance at some point another organ may be needed.  It may be needed because the medication transplant recipients take every day ‘may’ put pressure on the other organs, making them weaker.

 

Always the ‘what ifs’ which we choose not focus on. To the first transplant doctor we met, when the word ‘transplant’ was fresh, new, and scary, Scott said, ‘well doctor, thank you for the information but for now we are just flying this plane and when it comes time to land it, we will.’ Just meaning, we cannot focus on all the possible outcomes we cannot control but only the step in front of us.  So we continue to walk that same way now being on the other side of ‘transplant’ – we choose not to focus on all the possibilities that could happen, all the ‘what ifs’ – not until we need too.

 

So here we were coming off the high of a successful biopsy (no signs of rejection) and passing the one-year mark to learn Townes to learn we needed a referral.  So, over those few days, I desperately needed the revelation the Lord graciously provided, the revelation of understanding what put my feet on solid ground – worship.

 

Worship fosters hope.  Positioning ourselves to worship ushers in the Holy Spirit, invites Jesus himself to join us, and makes room for our Father in Heaven to work on our behalf. Worship gives us direct access to the Trinity.

 

And we are ever so grateful that the nephrologist is not concerned and views his levels as normal; now we are just lucky enough to have another doctor on our team and one whom I so enjoyed meeting. But what a reminder: how good is our God that he would pursue me to provide this wisdom when I needed it?

 

So, I have decided anytime I don’t know what to do because the world is telling me the worst, most depressing and upsetting news…I will choose to worship. Will you join me?

 

I wish you and your family a wonderful Memorial Day.  I have many extended family members who have sacrificed themselves to service and gratefully my family never experienced loss because of this service but today we honor and salute all those individuals who sacrificed their lives for our freedom. Those families, those mothers, fathers, brothers, sisters, and friends who have experienced loss and grief so I can spend this day splashing and playing with Townes and my own family and friends – and oh boy, the ribs will be delicious.  

 

Until Next Time,

 

Maleah

 

 

 

 

 

 

 

 

 

Show your love and support for Townes.

Make a donation to CaringBridge to keep Townes’s site up and running.

April
5
2021

He Is Risen, Indeed

Leading up to today it was almost impossible to not think of last year. To remember our miracle and to rejoice in it. Not just the miracle of Townes’ receiving health, wholeness and life but also the miracle of our answered prayer to be home by Easter.

There was a Sunday in 2019 after we had learned of Townes’ condition, I can relive like it was yesterday. Scott and I walked in a few minutes late, the worship music had begun and I glanced over to see a young mother holding her infant, rocking her child. I wept (and yes at the time it shocked even me).

When we made it to our seats, Scott leaned over to ask me if I was alright. I could only respond with, I will be, but when I saw that sweet mom with her baby braving church, it made me wonder if that will ever be us and if so, it could be a really, really long time. There wasn’t any way to know. Uncertainty seemed to prevail. Questions louder than answers.

Last Easter I remember pondering Mary and oh how her story resonated with me then as a new mother. But now as I watch my son grow and his personality blossom it becomes even more raw what she also endured that day.

I have reflected on the disciples, Jesus’ best friends, who trusted him, dropped everything to follow him. I can’t help but think after the crucifixion where they watched their beaten and tortured friend, mentor, leader and Savior die an unjust death, did they remember the charge in which they were given? Matthew 4:19, “Come, follow me,” Jesus said, “and I will send you out to fish for people.”

Don’t you imagine this purpose and calling started to seem impossible now or at the very least unlikely. How would they do that? Jesus was gone.

Now Jesus’ beloved, scattered, taking with them new doubts, dashed plans, promises they are convinced will go unanswered.

 

But then the unthinkable happened….

 

On the Third Day, another close friend, Mary Magdalene, discovered the most extraordinary thing.

 

The stone removed and the tomb empty (John 20:1-18).

 

Forgiveness Freely Given…

Redemption Bought on the Cross… and then

Death Trampled…

Victory Seized…

and with that victory, promises kept, purposes and plans renewed, doubts vanished, the greatest miracle of all time witnessed.

So this Easter, with grateful hearts because our son is not only at home with us but his biopsy results came back negative for rejection and he was given the best report of health, the greatest gift was walking through the doors of our church with Townes in our arms for the very first time to worship and praise our Risen King!

He is Risen,

He is Risen Indeed!

Happy Easter  & All Our Love,

The Stephens (Scott, Maleah, Townes, Tucker & Luna too)

March
27
2021

The Ukulele

This past weekend I was walking by a park near my house with Townes and I felt so overcome with excitement when I passed the basketball and tennis courts. Strange, I know, but the courts were filled with young men playing pickup games and people playing tennis. My enthusiasm stemmed from seeing something I haven’t seen in a long while and also at its familiarity.


Just one year ago when I passed these same courts the scene was drastically different. All the nets had been removed, there was yellow caution tape around the courts as if something tragic had occurred on them. Not one single person could be seen. My heart was elated to witness this scene before me and be reminded that ever so slowly, we are making our way out of the guise of this past year; and that yes seasons do change. and I don’t mean our seasons of Spring, Summer, Fall and Winter, but rather the seasons of life spoken of in Ecclesiastes (See Chapter 3). The goodness of the Lord will shine through and he will birth something new.


One whole year. So much has changed, but yet, simultaneously it’s as if time stalled.


I can remember today one year ago as if no time has passed. Sitting at my desk in my office, checking email I am sure and just settling into my day. Scott had the morning shift at the hospital this Friday morning, and I was due to take the afternoon shift as we had fallen into a new routine given the impact of the now global pandemic.


Imagine my surprise when my phone started ringing before I had barely taken a sip of coffee.  I think I sat dumbfounded for a split second until I realized Scott was calling me…on FaceTime. FACETIME?!?!… subconsciously my soul had to know why but I was so nervous and cautious when I answered.


The image of our doctor and nurse practioner standing there on the other end of the screen is forever engrained to memory as if someone has branded me with the image.  I only needed one answer, “does he have his ukulele?”


Side note: if you don’t remember, our doctor had promised to play us the ukulele when he came with the new of a match for Townes. It became our running question and/or inside joke depending on your perspective every time he came to visit us.


One day I hope I have to explain to Townes why our beloved doctor was wearing a mask (please let us not be wearing them all the time by then) and the beauty of the story as tears streamed down my face as the most beautiful sounds strummed from his instrument (I’m sure he would disagree but for me no rhythm had sounded so beautiful).


My son had a match.


And so, one year ago today we knew in a moment, everything changed.


One year ago, we all gathered together via zoom to take communion in unity, over 100 people were on that call. I am still blown away when I think of it. Oh, we have much to be grateful; the ways in which the Lord revealed himself to us along the way such a profound and mysterious piece of our journey.


The other day a friend said, ‘the glory of the Lord in your story is astounding.’


Me: “I know. If someone asks me about how the Lord showed up for us. I have to ask, ‘how much time do you have because there are so many stories upon stories wrapped up in this one continuous testimony. Wouldn’t I be doing it an injustice to leave one detail out?”


When I look at my son, I don’t see a ‘cardio’ baby or a heart transplant recipient, I see a child who God chose before the foundation of the world, a child who God knew before I had even dreamed of him, a God who determined the exact time of his birth and where he would live. I see the identity of which he has been given and purpose I will watch be fulfilled. (See Jeremiah 1:4-5, Acts 17:26)


Let’s take a minute together to realize these same things apply to you and me. The way I see my son is the way our Father in Heaven sees us; after all we are still his children.  He doesn’t define us by the same set of circumstances we sometimes label ourselves with, and he doesn’t consider how others have defined us. He only sees us through his lens. Could we begin to see ourselves the same way if we just focused on scripture?


I think it’s worth a shot, don’t you (maybe you need to be reminded as do I)?


You may now know me, but I know everything about you. Psalm 139:1


I am familiar with all your ways. Psalm 139:3


Even the hairs on your head are numbered. Matthew 10:29-31 (yes even the ones that fall out)


For you were made in my image. Genesis 1:27


I chose YOU when I planned creation. Ephesians 1:11-12


You were not a mistake, for all your days are written in my book. Psalm 139:15-16


My thoughts toward you are countless as the sand on the seashore. Psalm 139:17-18


I am not distant and angry but am the complete expression of love. 1 John 4:16


When you are brokenhearted, I am close to you. Psalm 34:18


For I am your greatest encourager. 2 Thessalonians 2:16-17 (he is literally your biggest fan)


And I could go on, there are so many scriptures that illustrate who you are to the Father. A reminder is always a good boost for your spirit. Even consider, picking one to mediate on and I can promise before you know it, your heart will believe it. Talk about life changing!


Townes these days is enjoying his newfound freedom in movement. I am simply amazed at how fast one can crawl…don’t leave a cabinet or a gate open because if you do I promise you this kid will somehow have suddenly appeared ready to completely pull out every item or make his attempt at the climbing the stairs. Yikes!


Over this last week, he has discovered walking. While he gets places faster by crawling, he is slowly but surely gaining confidence in walking.


Food is, well, still his favorite pastime and we have discovered macaroni and cheese and grilled cheese sandwiches. And forgive us in advance if you happen to be hanging around on a day where this is a chosen meal, his behavior (excitement) is a bit embarrassing just like taking Luna to the dog park.


The Spring weather has afforded us many wonderful days outside strolling the neighborhood, sitting at the park and swinging in our swing. Townes has even made a new little friend just a couple months younger than him while spending time at the park. He has been able to spend more time with his cousin, Joshua, and has learned, much to Luna’s pleasure, how to toss the ball for her (and to mine, two birds – one stone, score!)


And his little personality is starting to blossom, and I am afraid that I am in for it one day. He started flirting with all the pretty nurses at a very young age and I have said now that if he doesn’t marry a blonde girl then I will be shocked. But now, I have noticed how he can work a room, like he can read it. He is quiet and observant at first but then responds accordingly. “oh goodness, help me now!”


He also seems to be a bit ‘dramatic’ which I know he did NOT get from me. Thanks Scott. If I do something or ask him to give me something that he then decides he shouldn’t have, he starts this little cry (which mind you is not a real cry), then puts his two arms and hands out and throws his head down between then like he is just exacerbated, beside himself with what has transpired. (Note: I have to force myself not to laugh as if to encourage him).


So I respond, ‘Townes are you showing off?’ His response, he peeks up at me with a big smile. Oh gosh….you see what I mean, help me!


This weekend we are preparing for Townes’ one year post transplant biopsy. Yes, this is routine and yes, we knew it was coming but no that doesn’t make it easy. He will also be having 2 other small procedures done as well so it may be a tough day for our best boy.


We will go in on Monday morning at 6:00 am to prepare. I am beyond overjoyed that Vanderbilt has changed some of their visitor rules and Scott will also be allowed to accompany us (more good news…progress)!


The heart biopsy is a regular procedure done through heart catherization where the pediatric cardiac surgeon will take a little piece of the right side of his heart. This is done to run tests to ensure no signs of rejection exist that the echocardiogram did not catch. Thankfully, Vanderbilt Children’s is a center that chooses to perform these procedures every couple of years rather than every year but it’s a necessity at the one-year mark since a heart transplant recipient has the greatest chance of rejection within the first year.


This week has presented me with so many emotions, like I’ve jumped back on the rollercoaster. I can remember each day leading up to the 27th of last year, so it’s as if in some ways I am reliving them. I remember walking in and noticing visibly how Townes’ health had suddenly shifted and now instead of the life I used to see in his eyes, I now saw the illness taking root. I can remember how our doctor’s use of words changed and his delivery seemed much more urgent. I remember that suddenly it felt as if the odds were stacked against us and we were the ones looking foolish fully believing our son could be home in our arms by Easter; this time last year our prayer seemed simply impossible. But then…


 Jesus can always turn your impossible into POSSIBLE. Oh, you of little faith. Even faith as small as a mustard seed can move a mountain. Don’t believe, go look it up yourself, Jesus words, not mine. (Matthew 17:20)


As we approach Monday, I feel these little fears pop up. I’ve at least identified that these fears aren’t what you may think – they aren’t actually tied to his procedure(s) at all or that the results may show something we don’t expect.


These fears are actually tied to being back in that environment, the hospital. It’s like my body is having a physical and emotional reaction and one I didn’t prepare for. My body is remembering.  


Recently I have learned more about the Jewish ritual called the Shema. Every heard of it?


The Shema is a daily morning and evening prayer and is considered by some the most essential prayer in all of Judaism affirming God’s singularity and kingship. The Shema is a prayer from the sixth chapter of Deuteronomy. There is so much to be gained from this entire chapter, so I encourage you to read it, dissect it, pray over it, ask the Lord for revelation but together I want to focus on verse 10.


“Then it shall come about when the Lord your God brings you into the land that He swore to your fathers, to Abraham, Isaac and Jacob, to give you, great and splendid cities which you did no build, and house full of all good things which you did not fill and carved cisterns which you did not carve out, vineyards and olive trees which you did not plan, and you eat are satisfied, be careful that you do no forget the Lord who brought you out of the land of Egypt, out of the house of slavery.”


Do you see the simplistic beauty in this one verse? It’s a reminder that the Lord made a covenant with Abraham and the Lord has to fulfill it.  The fulfillment of the covenant is dependent on only one party and good news, it’s not you or me! Verse 10 outlines all that the Lord has done – again a reminder of what he has done, not me. Thank goodness, this isn’t dependent on me. 


The Lord wants us to remember all he has built for you his chosen one. The good things he has given already is a promise of what is to come in the future. He freely provided basic needs of food, shelter, clothing and then the much more in this verse in the olive trees and vineyards which I believe we can translate to the abundance he so graciously offers. He made a covenant to meet these needs to Abraham and out of that covenant he promised Abraham would be the Father of many nations which makes us the benefactor.


Now practically applying the truth found in Deuteronomy 6, I have all the more reason to go into Monday with confidence. Not just declaring that Townes’ biopsy will reveal health and wholeness but that even with these little fears and the physical evidence of the trauma I pushed down, he will take care of those too.  I have nothing to fear. 


In reflecting with gratitude over this last year on not just the one huge, answered prayer but also all the small and tiny prayers answered along the way builds you up, reminds you who your Savior is and strengthens your relationship with him.  And since we are only human, it can be easy to forget all the ways in which he has shown up. What a beautiful practice of the Shema, remembering who God is and what he has done, daily.


I am so thankful for all of you to allow me a space to journal, to keep notes, to give updates, you have helped strengthen my own faith to remain steadfast in the waiting.  Scott and I have been working on some things and we hope to have an exciting announcement coming soon, so stay tuned…but in the meantime.


We would love for you to take communion for Townes again this weekend as we celebrate his 1-year heart anniversary, to pray for his doctor’s hands on Monday, with praise thank the Lord for the gift that is my son and his health.


And lastly, I would like for you to join me in a prayer for our donor’s family. An organ recipient family can write a letter to be delivered at the one-year mark to the donor family. I have written ours, delivered it to our transplant center and expect it to be delivered in the next couple of weeks. I would love and cherish if over this next week or two you would pray for our donor family. I trust the Lord implicitly with their hearts and needs as I do not know them, but I have been specifically asking for him to deliver a joy they simply cannot explain when they think of their beloved child. That they recognize this joy is greater than the grief, I know they absolutely feel. I pray that if they do not know Christ their eyes and hearts have started to open to Jesus, and if they do, then our donor family have experienced him more intimately and through it they’ve gained a greater revelation of being loved. 


With my sincerest and heartfelt love,


Maleah

February
6
2021

a brave ONE

366 days…




If you were wondering that is 1 more day than normal, because yes, 2020 included Leap Year. It had everything else so why not Leap Year too!?




My son is 12 months old. We have officially celebrated him achieving the milestone of a “Brave ONE”…Lion themed, of course.




A few people have recently asked me how I feel with his birthday coming up. My response, “I feel like popping a bottle of champagne in celebration!”




Celebration because…




Let’s be honest, I mean we kept a human alive for a whole year! What a feat…come on all you parents, I know you feel me. It wasn’t always pretty and thankfully he won’t remember the times I was less than perfect but we made it!




But seriously, I want to celebrate because this is a joyous day! Our son has reached a milestone that you celebrate for all children and he reached it as a heart transplant recipient and one who is more than thriving.




Sometimes I have to pinch myself. 




He has exceeded every goal I could have ever set. He lets me sleep until at least 6:30 every morning (can I get a hallelujah; he gets my love language = sleep).




Food is his favorite past time – I laugh at myself now those few times I let the fleeting fear of him being a “cardio baby” which gave him a high likelihood of being under weight and small for his age take hold…NOPE!




I want to celebrate that my son is on the move and letting me know he is going places (although I would prefer the dogs water bowl not be one of them). And again, reminded that those once small voices telling me he may be developmentally behind due to his extended hospital stay and his inability to lay on his stomach those first three months were in fact just small squeaks with absolutely no true voice.  I suppose Mark Twain says it best, “I've had a lot of worries in my life, most of which never happened.'




It’s no wonder Jesus gives us such clear instruction in Matthew 6 “Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”  




What I have discovered this last year is something I have heard over and over in my life, “the word of God is alive and in it holds all the answers.” But I often pondered, what does that mean, scripture is alive? Isn’t it completely outdated? I mean, correct me if I am wrong but I don’t think Jesus was wondering what flashy headline to blast out to millions of people on Twitter or what filter to use on his recently snapped picture with his besties (the disciples) to post on Instagram.




The revelation that I have received over and over and over again this past year, is that yes, it is true, scripture is alive, and the word of God contains all that I need.  Last year as I immersed myself every morning reading through the new testament, I gained hope and encouragement as I prepared to have my first son.  A son to be born with a life-threatening congenital heart disease.  It gave me strength on the days I couldn’t find it and through the teaching spread all throughout a peace was offered even when the world shouted so loudly at me otherwise.




Let me show you just one example. Let’s circle back to Matthew 6. Before Jesus plainly instructs us not to worry about tomorrow, he is explaining that we also should not worry about our clothes or about food, simply he is telling us that he will meet those basic needs.  But isn’t the question we now ask, HOW?




How do we not worry about these simple things such as the food we eat and how do we not worry about even the much more complicated things such as the illness we are facing or the bills you cannot pay because job circumstances  or you fill in the blank?




That’s the best part – Jesus tells us. He gives us the answer.




“But seek first his kingdom and his righteousness and all these things will be given to you as well.” Matthew 6:33




While I believe there is a much deeper and yes, longer teaching here on the revelation of knowing that your Father in heaven desperately and whole heartedly loves you, let me illustrate just a couple of things.




To seek his kingdom is the action of earnestly being in a relationship with Jesus. Jesus also tells us that to know him is to know the Father (John 14:7).  Being in relationship with him is like a two for one – can I get an AMEN someone?   …I always love a good deal, who doesn’t! And walking with Jesus is more than a good deal, it’s the gift of a lifetime.




Being in relationship with Jesus means we spend time with him, just like you would your friend, your spouse, your parents, your children. It means you pursue getting to know him and know him intimately. And we do that through reading scripture, through reading about him, through prayer, by listening to different sermons and teachings about him, through praise and worship, and by being in community with his people – other followers of Christ.




The result of submersing ourselves in these things?? We gain knowledge about who he is and yes ultimately, his righteousness. And did you know that knowledge used in the context of scripture is not the “head” knowledge we default too but rather an experiential knowledge.  Meaning you experience Christ which allows you to know him intimately and receive wisdom and revelation. 




And when those moments pop up where the world is speaking louder than his promises, some days if we are lucky only once, other days it could be many times and on really hard days it feels continuous, we can remind ourselves of the good news – we already know what to do.




I picture it like hiking to a beautiful waterfall on a hot summer’s day.  The hike is difficult, maybe you fell a few times and now have some bumps and bruises not to mention the sweat (hopefully you didn’t forget deodorant!).   The obvious reward is not just the beauty at the sight of the waterfall but it’s to actually experience the waterfall.   It doesn’t matter if you choose dipping your toe in slowly at first or jumping in headfirst, at some point you find yourself standing under the water and looking up as it washes over you, washing everything clean, every crook and cranny, bump and bruise, every fear gone, giving you a fresh place to start your journey back with the feeling of being refreshed and restored.




This is what happens when you become immersed in a relationship with Christ and seek him. When your eyes are trained on him, the worries of tomorrow wash away and you can move forward in the present being refreshed and restored.




Over this last year, I had good days, joyous days, bad days, really hard days and even sad days.  But no matter what kind of day I was having, the days in which I was brave enough to trust Jesus and pursue his teaching and believe fully in him, those were always my best days no matter the external circumstances swirling around.




I have grown more over this last year than I could have ever imagined possible.  Yes, we learned a lot about medicine and even in my opinion received an Associate’s Degree in nursing, we learned how to be hospital parents and then real “at home” parents. I learned how to administer daily shots and be diligent with his medicines. I have seen more doctors and attended more appointments in an 18-month period of time than I probably have my entire life.




I have learned what it means to walk by faith and not by sight.  I have learned even more about the power of prayer.   I have learned that sometimes when you stand in confident expectation of good and believing above of all else you will bear witness to a miracle; others may doubt you. And I have learned that’s okay.




I have learned that asking for help is still hard, but I am getting better. One of the most profound lessons I have learned is how to receive from others when they selflessly give of themselves, their time, and their resources to you. Through them I have learned to receive an abundance of love, even if yes, I don’t feel deserving. I have learned that their love is a simple reflection of how my heavenly father loves. Even as recently as today, when I learned that someone else was so excited about Townes’ first birthday that they already prepaid for his smash cake. I have learned about the “much more” Paul so often writes about it throughout the new testament and I have truly witnessed Matthew 7:11.




My guess, though, is I am not done learning.




I am still learning how to be a momma, how to be a wife and then a momma, and I am learning how to be a working mom running a business.  I am learning how to balance my time to be sure I am investing in myself and others. I am still learning how to be a follower of Christ in constant pursuit of the goodness he wants to give me.




I imagine I will always be learning how to be a momma of a transplant recipient. A continuous journey in the strange paradigm of experiencing celebration and grief simultaneously, of knowing my moment of utmost relief, joy, jubilation, and excitement for a new future is someone else’s greatest moment of despair and heartbreak.  But what I have learned and know with certainty after this year is that my Savior will provide me the answers when I need them, compassion when I grieve and the healing when it's time.




So, this weekend above all else –




I want to celebrate that I have a Savior who heals. A Savior in heaven whose love knows no limits and no boundaries. Hosea 14:4




I want to celebrate my son’s 1st birthday watching all of our immediate family gather around with gratitude for the miracles we have witnessed over this last year.




I want to celebrate that we are all home together as a family of 5 (don’t forget Tucker & Luna).




I want to look into this next year with a confident expectation for what it holds. Hope for all of us.




I want to celebrate that at 12:33 pm Townes isn’t being whisked away in lifesaving hurry without so much as a word to me about his condition, that this year, instead he is wrapped in my arms snuggled against my shoulder just where he belongs.




I want to celebrate that my son is a BRAVE ONE!




 




With Love,




Maleah




More pictures to come...

December
23
2020

Ushering in a New Year

Can you believe Christmas is just days away?



In some ways NO and in others, has this year been filled with twice as many months? Seriously.



We received the funniest Christmas card this week, I mean I was in stitches and the clever sender took a picture of her family sitting around the kitchen table together…well not sitting and enjoying a meal as we used to come to expect but rather her husband was on his computer, working, her two boys head down over their schoolwork and she was as you might also guess head down, working.



Oh and the best part, the caption: “Home for the Holidays hellavualotofdays.” Whelp, that pretty much sums 2020 up, right?



I noticed this year it seems as if families started decorating their homes for Christmas earlier than usual. In some cases, I saw outside lights and Christmas trees on November 1st, goodbye Halloween and Hello, Santa.



Maybe some years I could have taken offense but for this year ‘anything goes’ because well #2020. But after giving it further thought I came to believe that this year we have all been faced with more uncertainty than any year prior. We have learned to be malleable and pliable; not always comfortable and definitely not easy. Some had to make decisions for their families they never considered before – hey where is the manual on how to live through a global pandemic?



Parents were pushed to limits as they homeschooled their children, while adapting to working from home, as they faced day in and day out conversations and decisions about what was safe for their kids and for their family.



Families have experience loss, pain and grief.  Not that each year doesn’t hold its own obstacles and unknowns but this year, 2020, became a new ballgame.  



It has been hard, and I think that puts it lightly, in most cases. 



Last night, I had a virtual Christmas party with my college girls. As we all shared a little of what this year has held, it was painfully clear that we have all faced something. Maybe different but something. A loss of a parent, a heart transplant, depression and fear, watching a parent fight and thankfully beat COVID after being admitted to the ICU, doing your best to make the best but hardest decisions as a parent for your children, being pushed outside your comfort zone, trying your hardest to do everything right and protect your family and parents and still somehow you failed, and everyone is sick.



But as I listened to all of them share this year in review, although it’s been hard and painful, it hasn’t been all bad.



The revolving theme from each of them in their own way was: GROWTH.



Maybe they realize it and maybe they don’t yet, but I did. This year forced an uncomfortable stillness.  In turn, the stillness pushed us to our limits, but it was their transformation started.



One of my friends is living 1 Timothy 4:15 and I am so proud of her.  To walk through personal growth takes courage and strength and then to share it with vulnerability, makes you more than brave. “Be diligent in these matters; give yourself wholly to them, so that everyone may see your progress.”



I want them and you to know that this year the Lord will use, and he has already started using even if our physical eyes can’t see it yet.  The Lord has started a good work and he will finish it. “being confident in this, that he who began a good work I you will carry it on to completion until the day of Christ Jesus” Philippians 1:6



What a relief that the growth and the work Jesus, himself will do, our only job is to show up for the process.



And growth is always good (except maybe the growth of the COVID 15 that makes my pants too tight)! See Colossians 2:7



I have held this belief since the pandemic started that the enemy, Satan, who roams around looking for someone to devour (1 Peter 5:8) must be angry and reacting to something the Lord is doing.  Satan is reactionary which means his only power is to try and stop something in motion, to thwart it, slow it down; he can’t see into the future (if he could well then he would have known Jesus was the son of God…Matthew 4).



I have held this belief of hope that the Lord is doing something so great and one day it will manifest on earth and we will stand witness.



This week the earth experienced something we haven’t seen this close since March 1226 – on the longest and darkest day of 2020 - The Christmas Star appeared! This is not a coincidence.



The Christmas star occurs when Jupiter and Saturn align to create a radiant point of light. 800 years…that’s how long it’s been.  Let’s not miss this – the Lord is showing off. He is providing us a symbol of Hope to close out this year.



When I heard about this star, I couldn’t help but think about the Wise Men who traveled miles upon miles in what I imagine was not the best conditions. No, they did not have a Tesla and weren’t riding around with the latest and greatest technology jamming to an Christmas play list on Spotify, following their GPS (and good thing otherwise King Herod might have caught on they weren’t coming back – Matthew 2).



These Wise Men went on foot (can you imagine?), carrying the most precious gifts of Gold, Frankincense, and Myrrh not using a compass but rather a STAR.  A star symbolizing the Hope of the World has been born. I cannot fathom how that must have felt, constantly wondering if you were going in the right direction, did you miss a turn? What if you don’t make it in time? What if you miss it altogether? What if…. it’s not the Savior at all? 



These WISE MEN had to walk by Faith. They put all of their trust in something they could not see. (2 Corinthians 5:7).  They had to keep going, one foot in front of the other, leaning into the HOPE of something bigger, something greater, a Savior.



I believe what I witnessed this year with people decorating for Christmas early is something deeper. As someone who doesn’t share my same beliefs, Christmas still holds mystery and something magical within it.  Joy to watch your children Hope and Believe for something. It represents as season of giving and generosity.



And as a believer we welcomed the season of celebrating our Savior, our symbol of Hope. We rejoice in the birth of baby, born in a manger wrapped in swaddling clothes. We admire and celebrate the faithfulness of both Mary and Joseph to take on the role of earthly parents to a baby who will grow into a man who puts away his deity to become a SERVANT.  (See Luke 2 for another account of his birth) 



While we do not know much about Jesus’ childhood, we have to assume that Mary and Joseph walked years and years believing in faith what the angel spoke years before living out Hebrews 11:1, that their son was the Savior of the World (See John 12:44-50) before seeing it manifest on earth.



“Now faith is confidence in what we hope for and assurance about what we do not see.” Hebrews 11:1



And so, we must do the same – carrying on, one foot in front of the other, with our eyes fixed on Jesus believing in the miraculous, life altering changes that are coming before we see them. Because they are coming!



“Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart.” Hebrews 12:2



Our family while faced with hardship this year has been immensely blessed.  We have learned what it means to stand on the scripture we read and to make that scripture come alive to carry you through the day, the month and the year. Our son, Townes, has brought so much joy, love and laughter to our home this year (and yes we have been home A LOT, haven’t you?)



He loves his puppies.  Lately he grabs Luna’s giraffe and gets this mischievous look on his face because he knows its hers and she is so gracious and patient. He think it’s hilarious that he’s taken her toy (now I imagine if and when she takes his, that won’t be as funny). And since he has discovered the fun in feeding them, she sits in waiting.



We have been singing all I want for Christmas is my two front teeth, and you know what?? He got them! 



We took him to Cheekwood in Nashville to see the Christmas lights and he was mesmerized and he watched his first train. Oh, to see life happen through the eyes of a child (we can all learn something from this).



He has started to squiggle wiggle his way backwards and forwards with an occasional almost crawl, but I think he would much rather walk. He pulls up on everything and has been practicing many squats as he bends down to get his toys.



He will turn a BRAVE ONE in less than 2 months and we have already scheduled his catherization procedure to biopsy his heart after a year to ensure no signs of rejection exist, I CAN’T BELIEVE IT!



His little laugh makes my heart leap, and his laid-back personality reminds me to slow down and enjoy the moment more. We are grateful to have experienced all these ordinary moments when this time last year more was uncertain than certain.



While I celebrate my first Christmas with my son, will you also join me in praying for his donor’s family who will go through this season without their child. I can’t make it easier for them and I can’t take away their pain, but I can pray because I know a person who can offer all the things we can’t in this world.



Scott and I want to sincerely thank you for joining our journey. For loving us and supporting us. The hardships of this year were made easier because of you.  We have all gone through a lot of firsts in 2020, so here’s to ushering the HOPE of something bigger and greater for all of you in 2021.



Merry Christmas from my family to yours.



With love,



Maleah



 

November
26
2020

And It Was Very Good

One of the habits we have fallen into since bringing Townes home from the hospital is evening walks. It started as a way to get out of the house, to pass time at the end of the day…and maybe also to support our local food/beverage scene due to COVID in the Spring but now it’s just part of our daily routine.


Townes seems to love it and even this week we turned his stroller seat around to face out (and not towards us anymore) because he looks around with such anticipation and awe (and yes, a tear was shed…he is growing up before my very eyes!)


Every day on our route, we pass a house where we greet what appear to be a mother (probably early 80s) and a son (guessing late 40s).  We say hello and vice versa and on our way we go. This weekend when we passed what I assume is the son asked if we wanted to buy any snickers bars because his daughter was selling them for a school fundraiser.


“Of course but can we catch you tomorrow and we will bring cash?”


Needless to say, we forgot cash! NOOOOOO….(hand to face emoji)


On Tuesday, I happened to pass him walking down our street as I was on my way to drop off a birthday gift. It took me a minute to recognize him because he was out of context for me, but I quickly turned around and inquired, “Am I supposed to buy snickers from you?”


“Yes! I have 3 left.”


“Great, I will be by tomorrow. Put my name on those.”


When we showed up at his door the next day and waved, he looked up in surprise – like he hasn’t seen us almost every day for the last 6 months, and when I smiled and said “we are here to buy those snickers. Do you still have them?”


His face turned to disbelief, “I can’t believe you came.”


This short but clear and concise statement saddened me. Not because he thought I wouldn’t come, or he thought I wasn’t a woman of my word.


It saddened me because I realized it’s our experiences that define our outlook and perspective on things. Its disappointments or failed relationships that essentially make us believe it will happen again. It’s broken promises that equate to our dreams being dashed. And if the only perspective and news we hear is negative with continual reports on the evil of humanity does it cause us to forget the kindness of our neighbor or the stranger we passed in the grocery store?


I do not know this man’s story, nor do I know what he’s experienced in his life, but clearly the simple action of us showing up for him to buy Snickers bars to support his daughter was a surprise to him…one he didn’t expect, even though we said we would return. Rather he expected us to not show up –somehow and sadly has he been conditioned to unfilled promises?


Studies have proven that we, as people, have a tendency to remember negative experiences which create negative emotions like fear and sadness more than positive ones.  Science illustrates that these emotions increase brain activity more than happier ones.


Is this why someone can go out of their way for us, can show us immense love time and time again but yet, we somehow, only remember the one mistake they made? Or the one promise they failed to keep? Or they way in which we feel they let us down, disappointed us.


Then I started thinking (always a bad thing), when I put my own expectations and my own wants of what I think the Lord should give me, and in turn, feel that these prayers went unanswered is that where the mistrust starts? The unbelief? Because I feel that he let me down?


What starts with a definition I created, ends with me believing a mistruth about who he is?


If I only see where I’ve been let down, do I start to limit what he can and wants to do or perhaps what he is already doing on my behalf? 


It’s simple and small but do you see it in my statements above? The focus that is so easy to do – ME and I over and over again. What we really need more of is HIM.


But the question becomes, How?


By reading the Word. When we immerse ourselves in the Living Word, we come to know the Lord and his son, Jesus for who they are (present tense).


Joshua 1:8 puts it this way, “This book of the law shall not depart out of your mouth, but you shall mediate therein day and night, that you my observe to do according to all that is written therein: for then you shall make your way prosperous, and then you shall have good success.”


This means prosperous and good success in our relationships, in our careers, in our parenting, in our volunteer work, in our churches, with strangers…


The Word of God teaches us about who he IS. Here are only a few and not limited to the verses listed below.


He is Love (1 John 4:7-21)


He is Hope (Matthew 12:21)


He is Truth (John 14:6)


He is Grace (Ephesians 2:8)


He is Holy (1 Peter 1:16)


He is Sovereign (2nd Samuel 7:22)


His is a Friend (John 15:13-14; James 2:23)


He is Compassion & Empathy (John 11:35; Hebrews 4:15)


He is Faithful (1 Thessalonians5:24)


He is Wisdom (Proverbs 2:6)


He is Forgiving (Daniel 9:9)


 


We need to focus on these things in the world today where the background noise gets louder and louder.


Just over this last week, I learned that my friend’s mom suffered a stroke while in the ICU fighting COVID (she is still fighting), another friend suffered a miscarriage while another one laid to rest their 24-week-old baby girl after the doctors could no longer find a heartbeat.


But in all this grief, I witness love. While we couldn’t surround our friends with hugs over 20 cars filled with people and flowers filed in a line for a Memorial to their house. This is LOVE.


There is Power in the Word of God and there is Power in Speaking It. This is why when I talk with my friend whose mom is in the hospital fighting to Live, we talk about when she comes home to her husband of over 50 years. We have to speak the truth of healing. This is HOPE.


 We introduced Townes to a family tradition, cutting a Christmas Tree and we invited our friend who had suffered a miscarriage to join. This is FRIENDSHIP.


When I read, walk and stand on scripture, I can apply it, I can see how it manifests daily. I live with a grateful perspective. And I have found when I don’t, my focus turns inward towards myself and I start to believe what the world wants me to see….down a rabbit hole I can so easily go.


Today is Thanksgiving. Our Thanksgiving looks smaller than it has in years past.  We did not get to host our annual Friendsgiving. My bible study girls did not get to come over for our small Friendsgiving dinner. I haven’t seen some of my friends in what seems like ages BUT there is still much to be thankful for.


My small group had a zoom call and we played family feud instead and it was a blast.  We spoke of things we were thankful for, things we were looking forward too and things we were excited about. And you know what? Not one person hesitated or struggled with something to say.


I was blown away with some of the ladies who I have watched allow the Lord to do some work within them, some refining, creating more gold and more beauty this year. Something I have seen in them and knew could surface if only they received…this year created the opportunity and when the Lord knocked on their door, they said yes. And now the light in them shines so bright. Does that mean it was easy? No, it wasn’t.


But good things rarely are.


My best friends from college are having a virtual Christmas party with Secret Santa and we are beyond excited.


Don’t you see?  “The Rona” can’t take it away. And while our adversary roams around seeking who to devour (1 Peter 5:8), we have the authority to say, “Nope, not Today.”  We have a choice to be intentional with our relationships even if we have to adjust them.


We can still have community. We can still experience joy.


I sit here imaging that first Thanksgiving where the Colonists and the Natives gathered together to share a meal (it was actually a celebration over several days).


They were people from very different experiences and backgrounds. They were a people who didn’t look like each other. They were people who had not treated each other perfectly. They were people who at times didn’t like one another and had disagreements.


But they came together as ONE group of people to be Thankful for an abundant Harvest and express Thanks.


The Natives practiced this daily and they were teaching the Colonists – isn’t there something here for us to learn? The Natives knew a secret all those years ago that now the Self-Help industry has made billions of dollars telling us – Be Thankful. Show Gratitude.


And how much more powerful this concept when you pair it with the active and Living Word of God (Hebrews 4:12).


This doesn’t mean we always get it right – far from it. It doesn’t mean we are perfect, nor are we called and expected to be. It means we will start to live differently though.


So, I refuse to believe what the world wants me too – I refuse to focus on all the darkness surrounding me. I refuse to believe that disappointments mean I will always face disappointment. I refuse to believe that mankind is filled with hate and cruelty. (John 1:5)


I chose to believe that at the core of it all, Humanity is GOOD. We must believe this, and we must live this – we can be the change and we can be the voice. We must for our children, so they grow up to know that people are kind, and generous, and loving. 


After all this must be true…we have an everlasting Father who made us in his image (Genesis 1:27) and “God saw all that he had made, and it was very good…) Genesis 1:31 


So I want to challenge you as we head into this Holiday Season and quickly approach the end of a year no one anticipated, what are you thankful for and how can you be intentional in relationship with those around you?


Townes isn't crawling yet but he is a squiggle wiggle and has figured out how to scoot backwards. He really wants to be mobile so I imagine its in the near future.


I am so grateful that Townes is thriving - he loves to eat and I say I big thank you every time someone tells me he's chunky and the doctor's are pleased. When the doctors told us he would be underweight and behind developmentally, we refused to accept this as truth. We would not speak it over him - instead we spoke what I believed, that he would thrive!


We are quickly approaching 1 year and it will be here soon. In some ways, it's so hard to believe and if you saw him, you would never know what the first 3 months of his life contained. Grateful.


And I am thankful to have partnered with an amazing non-profit, Enduring Hearts. that is filled with doctors and other volunteers passionate about enhancing pediatric heart transplants. The work, research and innovation they are doing will directly impact my son's life and other children like him. They are working tirelessly to ensure he receives every chance of a long, long life. 


 


Scott and I would be honored and humbled if you would consider partnering with us on our Team "Miracles in a Heartbeat" to help raise money and awareness. Check out are page here, https://www.flipcause.com/secure/fundraiser/OTUxNjc=/52005.


And look for Townes face on on the Giving Tuesday Campaign!


Love and Thanksgiving –


Maleah


 


 


 


 

November
3
2020

#2020

This year has created more uncertainty for me personally than any other year I can remember, and I guess the solace here is, I am not alone…. unfortunately.


But


I have also learned that I have more certainty in Christ than anywhere else. As a follower for many years, I feel this truth has been revealed to me over the past year than any other time. So, in a year filled with so much, I am ultimately thankful.


He has carried me in sadness and in grief. He clutched me in the palm of his hand every day as I prepared to watch my son, Townes, fight for his life.  He offered me his living water (John 7:13-17) to drink when my ears heard hospital machines day in and day out, when the emergency bells rang and I watched doctors and nurses run and he gave me a cornerstone to stand as my earthly eyes watched sickness slowly start to attack my son.   


And the truth is on the days when I still have questions and I can’t make sense of all the “whys” I want to ask and I continue my journey of grieving for another family, he is still there holding out his hand to catch those tears. (Psalm 56:8) He meets me in the valley.


My experience this year has deepened my understanding of focusing on the things I cannot see because the things I see are temporary. The season may feel long and never ending but change will come (2 Corinthians 4:18/Ecclesiastes 3:1-8). It has poured concrete to solidify his promise that he has overcome the world (John 16:33) and when I anchor myself to the Word my soul will not waver (Hebrews 6:19).


The Word itself is filled with life, encouragement, teaching, promises to claim as our own and stories of a person who is HOPE. And in his kindness and love, he sought after me with a purpose, so I know in my heart these truths and the wisdom and revelation found in them.  This year I have lived Ezekiel 34.


“For this is what the Sovereign Lord says: I myself will search for my sheep and look after them. As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all places where they were scattered on a day of clouds and darkness.”


My soul is lifted as I read these words because for me, I wasn’t a lost sheep he was calling back home. I wasn’t lost but rather there were days of darkness. Days when fear was louder than faith and when science tipped the scales to impossible. It was in these moments when I was rescued. It was these thoughts he took captive so I could experience a constant and continual renewing of my mind. (Proverbs 4:23/Romans 12:2)


I was meeting with someone last week and he presented a question that he asks people lately and I thought it was simple and profound. Now he said it much more eloquently than how I will relay it, but the message is the same


My hope is that it challenges you too and maybe, just maybe you will be able to see #2020 from a different lens.


“There are two months left in the year – how are you going to remember it? There is still time to change it.”


I have been mulling this over for about a week like a nice cup of cider. And I have decided I will remember 2020 differently than most.


Sure, it will always be the year of a global pandemic, stay at home orders, masks, a toilet paper shortage and a stock market crash that led to a recession but for me those will be subtitles (although I am sure one day when Townes turns 18 and someone gives him the birthday card of “what happened in the year you were born” it will be unlike any year I have seen).


For me this is the year


  • My son, Townes, was born
  • Scott and I became parents, a momma and daddy
  • When after almost a week, we finally got to hold our son
  • My family received the most priceless gift
  • Our parents become grandparents and our sibling’s, aunt and uncles
  • Miracles! We experienced the power of prayer and came home as a family of 5 (yes Luna and Tucker count) 3 days before Easter
  • We experienced the true nature of humanity in every sense of the word – goodness, kindness, generosity, love
  • Because of the pandemic we were given the idea of a virtual communion and had over 100 people on the zoom call before they took Townes for his surgery
  • We drew closer to our Savior and his love was mirrored to us through our community
  • We developed a passion for pediatric transplant education
  • I’ve watched Townes fall in love with his furry friends and I have watched them take on a new role with excitement and love
  • I heard Townes laugh for the first time (and yes the dogs were involved)
  • We have met some incredible new people, whom we now call friends
  • Townes loves football (we start ‘em young)!


And the best part? The year isn’t over – and we are entering my favorite season! With two months left, we still have many memories to make. We have things to experience and so many firsts left to explore.


So for me #2020, is much more than what the world wants my eyes to see and my heart to feel.


And I will go to bed tonight knowing that is Jesus who is the Hope of the world (Isaiah 42:1-4/Matthew 12:21).


Townes is now 7 months post-transplant and before we know it he will be turning ONE and then we will also celebrate his ONE year HEART Day!


Friday he will turn 9 months old on the same day, my oldest companion will turn 14.


I have always loved Halloween. My mom was talented and always made the best costumes (Townes will not so fortunate).  In my prime trick or treating years and as the oldest, it was such a special treat (pun intended) because every year when my brothers puckered out from exhaustion, dad would drop them off and then take ME, the two of us, to continue on! In some ways its funny to think about now, because generally speaking I was a very shy little girl but for some reason, collecting candy was something I could do – talk to a stranger, NO but say “trick or treat” for a reward, yes!


Then we would come home, dump our bags out (let’s be honest, Pottery Barn wasn’t around selling cute little Halloween pumpkins, we did it the old fashion way – PILLOWCASES…and if you ask me, they hold more)! As we sorted our candy into piles of chocolate, fruit candy, chewy candy, we also had a “dad” pile – he got all the sweat tarts (strange I know) and sugar babies. He says it was his reward for taking us…I think the truth is, he had just as much fun :)


So naturally when we found out about Townes’ pending arrival, I couldn’t help but to smile about Halloween. I even toyed with the idea of buying a costume on sale last year for him to wear this year but then life changed. My assumed expectation of Halloween 2020 changed and so I rarely thought about it. I couldn’t. The unknowns were louder than the knowns. #2020 became something completely uncertain, I chartered territory.


While we were in the hospital, every morning upon my arrival before reading Psalm 91 over him, I would whisper “Good Morning, my Brave Little Lion. Thank you for being so strong, so brave and so courageous. Thank you for fighting.”


And as you may remember, Townes was on sub-atmospheric oxygen as well. We often joked that he looked like a little astronaut.  Before I left every night and entrusted him to the care of the doctors and nurses on service that night, I would tuck him back under, wrap him snug in his swaddle and whisper, “good night my little astronaut. Sweet dreams playing in the stars and I hope you meet the man on the moon.”


Year #2020 will be my son’s first Halloween.  So naturally for Halloween, there were no better options for my Brave Little Lion and my Little Astronaut (astronaut costume thanks to Bear Paw).


With Love,


Maleah


 


 


 


 

September
28
2020

Ordinary

A year ago this week our ordinary pregnancy became anything but. Now though in reflection, it led to some extraordinary things and today we celebrate unabatingly Townes reaching 6-month post-transplant!

While we were in the hospital we were connected with a social worker. At Vanderbilt (maybe at other hospitals too but I can only speak to our personal experience with Vanderbilt) if you are facing a long-term stay, you are connected with one.  For us, she was an advocate (remember when COVID first started and the hospital was changing policy every 12 hours), she was a familiar face, she was a friend who popped in to say hi. Sometimes she brought us gift cards (we finally used some we received this past Friday! You may wonder why it took so long, but you get 3 guesses, you likely only need one…and no Townes is not the reason, ha)!

Part of her job is to connect families with different programs who strive to assist families like ours and at the very least lift a burden if possible. We were the beneficiaries of a gas card and grocery card from a non-profit called Enduring Hearts. The further out and more removed you become from the days spent at the hospital the memory of the emotional and physical toll lessens (thank goodness).  On the days of Townes’ Transplant appointments, I usually leave feeling drained – not because we received negative or bad news but just from being there. That’s when I am reminded of the months earlier this year, how our week in the NICU seemed like a month and our 2 months in the Cardiac Pediatric ICU felt like a year – time seems to stand still in the hospital.

A couple weeks ago at one of his appointments, our doctor asked me if Scott and I would be interested in becoming personally connected with Enduring Hearts as this organization is striving to expand its community reach.

We have now had the pleasure of connecting with the CEO of Enduring Hearts and our hearts and minds have been opened to the amazing work they are doing which reaches far beyond how we were impacted in a small way during our stay at Vanderbilt.

Enduring Hearts was founded by a family who were on vacation in the most “magical” place on earth …. you guessed it, Disney when their youngest started having trouble breathing. After a trip to the doctors which sent them to the hospital only to discover their three-year-old daughter was experiencing heart failure.  She ultimately became a heart transplant recipient and her parents founded this wonderful organization because as we have already discussed Pediatric Heart Transplant is still new medicine.

Enduring Hearts is funding amazing research projects to continue to innovate, to discover more about Pediatric Heart Transplant longevity, to detect signs of rejection and ultimately prevent it.

From an outsider’s perspective, you would assume that funding for this research would come directly from the American Heart Association, but you would be wrong. These two organizations are currently working on their first potential project together. As a reminder, the first heart transplant was in the early 80’s (so while new medicine, I was born in 83, you do the math).

My main takeaway from this first call – my son, Townes will be a direct beneficiary of the research that this organization is doing and all of the doctors who are partnered alongside them with their passion for these children. In my mind, they are HERIOC.

There were many things that stood out to me during this call but the main one: their MISSION as it was communicated to us. 

“The mission of Enduring Hearts is that every Pediatric Transplant Recipient would experience a lifetime of Ordinary. Graduation, Marriage, Children, and even taking care of you when you age”

I have mulled over this statement like spices seeping in a red wine these past two weeks. Why did it stand out to me so?

Last August, Scott found a used Bob Stroller for me. If you are not familiar with the Bob Stroller, it’s a running stroller. When I first learned of Townes’ pending arrival, I told Scott I had to at least have a running stroller so I could take him with me, what fun!

But then, of course, we received his diagnosis. Something certain become uncertain.

Our faith became the fuel for our Hope.

Hebrews 11:6 puts it this way, “And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists and that he rewards those who seek him.”

Now the Bob Stroller I was once so excited about sat collecting dust, crickets and I am sure spiders in my basement.  It signified something I didn’t know if and/or when I would use. Something so ordinary. Something, maybe, I would have taken for granted before.

The word ordinary, according to the Webster’s dictionary, simply means no special or distinctive features; normal. But what if what you may call ordinary, to others is representative of something much deeper and not ordinary at all?

What if you saw your relationship with Jesus through this lens? Proverbs 21:20 says ‘Precious treasure and oil are in a wise man’s dwelling, but a foolish man devours it.”

What if our ordinary moments are actually where the treasure lie? Can we slow down long enough to appreciate them, to find the joy in the them and ultimately see Jesus in them?

Weeks ago, before we had our first introductory call with Enduring Hearts, I signed up for their virtual race to be completed between the 13th-29th.  In short, I signed up to give back to an organization that had given to me. Little did I know just a few weeks later, I would have a new passion and endearment to them.

And so, on Saturday, I decided there would never be a more appropriate time to do something that on the outside to anyone who passed by would seem ordinary.   We pulled out the Bob Stroller, dusted it off, and loaded him up.

As I stood in our driveway with Townes strapped in and Luna hooked around my waist, I looked back at Scott standing in the doorway. He seemed to motion to me with a gesture that suggested, “go on already. I want to wave you “good luck” as your constant companion at any race, but I don’t have all day, COFFEE!”

But I couldn’t move, I was cemented to the pavement.  I was too overcome with emotion. My feet felt like lead weights and my breath shortened as I looked down at my son. My heart was overwhelmed with an immense amount of gratitude that our first time using the Bob Stroller, something ordinary, was for something of significance – something that would directly impact not only my son but many other children.

This race wasn’t about setting a PR (personal record) or competition or just participating in a race (thank you 2020 for making this much more difficult) – this race was about making a difference, about impact, and about giving other children, like mine, a chance at ordinary.

But as in all things, there was more to what I was experiencing.  I was overwhelmed with a beautiful picture that the Lord can turn something so Ordinary into something Extraordinary. And how does he do it – by using you and me.

He has given us gifts and talents and treasures.  (See Romans 12)

And with these gifts and talents and treasures, we work together as the body of Christ to advance the Kingdom. (Colossians 3:23) 

When we experience loss, isn’t it the Ordinary moments that become the most devastating – dinner at the table, walks around the neighborhood, tradition of Saturday morning coffee runs, the shared experience of watching a team you both love compete, the missing dirty clothes in the hamper?

What if we could shift our perspective on 2020 as a hard and difficult year that has created many ordinary moments to believe that one day we will look back and remember these moments as extraordinary – more time at home, more time invested in our children, more time spent outside, more time appreciating the simple moments with friends or a conversation with your neighbor, the simplicity of a homecooked meal, the time spent reading a good book instead of scrolling social media, more time to look back at old pictures, more crafts.

What I know for certain is that there is family out there that probably views themselves as Ordinary, but they are NOT.

This family experienced a heartbreak no family should, and these parents said yes to a question no parent should ever have to answer; they gave the most priceless and precious gift

They gifted, not just Scott and I with many, many, many ordinary moments but they gave this gift to his grandparents, his aunts, his uncles, his future friends, his future teachers, coaches and mentors, to his future wife and ultimately to his children. They changed a generation and they changed people’s lives. Impact.

This family is EXTRAORDINARY!

My perspective is different now, I see these moments from a different vantage point - they are not ordinary – they are EXTRAORDINARY.

What if we all started to believe that as ordinary people, we could do extraordinary things because of whose we are and the power of who lives inside of us?

This last week was filled with so much.  We had the pleasure of zooming with Dr. Boo (a nickname gifted to him by his earliest recipients families) who serves on the board of Enduring Hearts and he founded the Pediatric Heart Transplant program at Vanderbilt Children’s along with his fellow at the time (one of our doctors).

He has so much passion for his children and for the research. He has a strong Why and we appreciated his honesty and candor about why he picked this field.  It was a great reminder that so many times a strong Why drives you to success. And he confirmed what I already knew, that if I or Scott had been born with Hypoplastic Left Heart Syndrome, we wouldn’t have survived. Dr. Boo is an asset, and I am humbled and honored to have spent time with him on Friday.

Visit, https://enduringhearts.org/, to learn more about Enduring Hearts and consider partnering with them in the future. Scott and I look forward to becoming involved with their mission.

And then after our run on Saturday, we introduced to Townes to his first football Saturday, what a joy! So let the celebrations continue as we sing so many praises today for our 6 month mark with a healthy, whole, and joyous little boy. (2 Samuel 22:50 & Psalm 57:7)

With love –

Maleah