Sometimes (and only briefly) should we look back to be reminded of where we have been but really so we can be encouraged by how far we have come.
The reality is when COVID-19 first started it seemed ridiculous to think that by July life wouldn’t be “normal” – it seemed absurd to think wearing masks in public could be made mandatory in certain parts of the country much less your own and the mere idea that “summer as we know it would be canceled” was laughable. It’s not possible for our children not to have camps, and bible school, and extended time with their grandparents? And even the unthinkable question: will they even go back to school? But yet, here we are.
3 months ago yesterday, we received the call we had longed for, the call we hoped would come but couldn’t be certain. A call we prayed for more than daily since February 6th and a call we didn’t think could really be “our reality” before then.
The days leading up to “that call” were long, they were hard, they were emotional. There were days that felt like weeks and even months. Those days held an uncertainty, I am not sure I have ever felt before. We didn’t spend our days then dreaming of the future, we only spent them focused on the day at hand. We got up each morning with one simple truth – put one foot in front of the other to face what lie ahead advocate for Townes, and have faith – the only real thing in our control. Some days were easier than others and some scarier, maybe you can relate. But the one constant (or three) – faith, hope, and love.
We have learned a lot about medical care in the last 6 months and one of the things we learned early on is that our Transplant Team (made up of 3 doctors plus the teams own nurse practioners, nurses and transplant coordinator) would be vitally important; however, our assumption going into February 6th was that if we needed them the doctors on this team would also be the ones to do Townes surgery – WRONG, ha (I mean I always knew assumptions could make an _SS out of you and me)!
No the wonderful surgeon who we also met before his birth, would be the cardiac surgeon whether Townes had a transplant or the 3 surgeries to fix his heart. Okay so first lesson of many really…but the Transplant Team of doctors are the ones working tirelessly behind the scenes finding his perfect match. And although we often here of the “Transplant List” there isn’t a specific list – so to speak – it’s more of a list of recipients in need and the order of the list depends on a variety of factors. The transplant doctors work to strategically put together a puzzle to match the donors and the recipients with the best possible match based on blood type, compatibility, and health of the recipient at the time of availability among other factors – Lesson 2. Whew – we haven’t been doing this long and already so many lessons, ha.
Remember the doctor we met with the day after Townes was born – the kind and empathetic one? The doctor who told us that Townes best chance at life was through a transplant? Well I want to remind you how the Lord works and how he uses people and how he is still a God who speaks to his children. He is a miracle saving God that in his own timing answers our prayers. We only have to remain faithful and open to receiving his gifts and hearing him when he speaks.
Early on in the process of learning Townes would be placed on the Transplant list, I felt this strong sense that this kind, empathetic doctor would be the one to deliver the news, the news that Townes had a match. I could never explain it…why I felt it so strongly, except to say that I had had a dream, well 2 actually.
In my dream, Scott and I were sitting in Townes hospital room in our normal spots – me by his bed reading or working and Scott in the nurses chair, they so graciously offered him, facing his bed. The room was positioned in such a way that we could both see down the long hallway from where we were sitting – which now that I think about it is interesting since our first room in the Pediatric Cardiac ICU wasn’t positioned that way but I had this dream while in the room. (Wow, even now I am blown away by intentionality of our Father in Heaven!) We were talking when we both looked down the hallway and saw our doctor walking rapidly towards us with a big smile on his face. He walked in and said “well – there’s a match!” And then, I woke up
I have always been fascinated with dreams – all throughout scripture we can find proof of God using dreams and visions to speak to his beloved (Genesis, Judges, 1st Kings, Daniel & Matthew). The Lord can speak to us through them, the only trouble is when we wake up we rarely remember what we dreamed about and even if we can put some pieces together, it hardly makes any sense to me. Too bad we don’t all have a dream interpreter like Joseph (Genesis 41).
But these two dreams were the same both nights, not one detail different.
This is significant. He would be the doctor, I felt it in my soul. I believe the Lord gave me the dreams to hold onto his promise of healing for my son, that although I didn’t know the when I could confidently know it would happen. (Now I kept this to myself – I told no one that I thought he would be the one to deliver the news – after all what if I am wrong? What if the Lord wasn’t speaking to me after?)
After having this dream two nights in a row, I told our doctor about it which led to him inquiring with me each time he saw me after and asked if I had the dream. No, not yet (internally disappointed) and we began to joke that maybe the third time would be the charm. Also, at some point during our tenure, we learned that this doctor played the ukulele. I told him I wanted to hear him play it and I expected that he would bring it the day he told us we had a match.
It became our relationship each time he entered our room …
Me: “Do you have your ukulele?”
Doctor: “Did you have your dream?”
Alas … not yet. Days and weeks have gone by and not yet…maybe I won’t.
And so every day I would count how many days until he was off service and then on again. You see with 3 doctors they all rotate one week on, then two weeks off (meaning making rounds in the hospital to see patients like us). Each time we approached the ending of his week on service, quietly, disappointment would almost swallow me whole.
Doubt started to creep in, maybe it wasn’t the Lord after all.
One thing we would hear often in the PCICU aside from the expected “we just need to get him a heart” is “we need to keep him in the best health possible” Health seems like a relative term when you know the reality is that Townes is fighting for life each and every day but we know at some point the body will become too tired, it has to work too hard and without full function, it just can’t at some point…
The average wait time for a heart we had been told is 6-8 weeks… and we know averages come from somewhere… some patients wait longer and others shorter.
When I entered the hospital on March 24th and saw my son, I knew we had reached the peak of his health. It’s even hard for me today, to look at pictures from that week. He had fought hard, but his body couldn’t function at that level anymore. I said nothing – if I said out loud, would that make it more true? Maybe I was imagining it…maybe I was being overly sensitive and cautious. Maybe what I thought I was seeing, wasn’t reality.
Now guess who is back on service? (YEP!)
But, that first day after our usual greeting of
Me: “Do you have your ukulele?”
Doctor: “Did you have your dream?”
I noticed that his language had changed…instead of saying “he is doing great”, it was only “he is doing good.” It was “we have put off the cath lab long enough. We need to schedule him to go next week.” And not only did his language change, his demeanor did too, his body language. He only confirmed what my intuition and heart felt.
So I did the only thing I knew too – nothing different than what I had been doing – I read the Word, I played Worship music, I read Psalm 91 over Townes, I took communion. And then Scott repeated it when he got to hospital.
And then that night, I had a dream – not completely the same. This time I wasn’t there – Scott was in the nurses chair. It was as if I was watching it happen – our doctor was walking down the hallway towards our room, Scott saw him. He walked in and stopped in the doorway..but then I woke up…and I didn’t get to hear say those longed for words…”well – there’s a match.”
On Wednesday, March 25th I told him I had the dream – well partly. He said well you have 3 days to finish it and I said “no, I am expecting you to be the one to finish it.”
And then time stopped…at 10:30 am on Friday, March 27th as I was sitting at my office desk (not at the hospital because Scott took the early shift that day) my phone rang. I looked down and saw it was Scott — on Facetime.
Me: “Why are you calling me?”
(There was no time for greetings. Because when I answered and it finally connected (please tell me why technology takes so long when you need it to be immediate!) I was staring at our doctor and a nurse practioner. And I could see her smile under the silly mask she was now required to wear.)
Me: “Does he have his ukulele?”
Scott: “yes he does”
Doctor: “We have a match”
A moment in time that forever stands still for me – just as much as when I first heard the word, transplant. And then I watched the most beautiful and magnificent thing – he played his ukulele and I imagine all the angels were dancing and crying with me.
And I knew I can hear from the Lord – it was true. He had gifted me that dream. I am his beloved and he calls me his daughter and he knew better than anyone else that I would need that dream to stand on.
I heard a sermon one time where the Pastor said it like this. A child knows his mother’s voice, he doesn’t have to learn what it sounds like. So a sheep knows the Sheppard’s voice – we don’t have to learn how to hear from him; it’s as inherent in us as our own beating heart.
You can hear from him too. And maybe you need to know today that he hears you and he has bore all our sin, inequities and diseases. We don’t have to be afraid – like King David, we can charge at our fears and they can and will be defeated, whatever they may be because perfect love casts out fear (1 John 4:18).
And although the world is yelling at us from all directions, creating fear and presenting the current chaos, he is calling you to look up, to turn your eyes back to him. To turn away from the things that create stress and anxiety that remind us of our fallen nature. To choose him, to spend time with him, to believe anything is possible.
The future ahead of us is filled with uncertainties and unknowns. Our circumstances my differ but what we are facing is the same and the pandemic has impacted everyone, all over the world, all of God’s children. Civic responsibility – yes, and wisdom – absolutely…but fear – no. What I see is a Savior who took 39 lashes on the back and in those lashes is sealed every disease, every illness and infirmity from hypoplastic left heart syndrome, to cancer, to ALS, to Alzheimer’s, to yes, even COVID-19. When you approach him and he stands up to greet you with his arms open wide, he is the shield protecting you from it because those lashes are on his back not his front. And its his front you are walking into.
Today Townes has reached a big milestone – 3 months post transplant! We will lose some medications and our doctor’s visits move to every other week and we continue to sing Hallelujah.
Every time I am concerned, wondering if he is spitting up too much, or is that a rash, or does he have an infection (because unfortunately the signs of rejection are similar to those of just having a baby) – I choose to remember the one who bore it all for Townes and for me. I remember he is trustworthy as Hebrews 3:6 says beautifully, “but Christ is faithful over God’s house as a son. And we are his house, if indeed we hold fast our confidence and our boasting in our hope.”
He is trustworthy because of his unfailing presence in our lives. Our journey here has been far from perfect or what we would have chosen but we are his children, he cares for us. And if you look for him too, I know you will find him.
“You see, every child of God overcomes the world, for our faith is the victorious power that triumphs over the world. So who are the world conquerors, defeating its power? Those who believe that Jesus is the Son of God.”
1 John 5:4-5 TPT
What can you find to celebrate today because of his love for you?
In Celebration –
Maleah, Scott & Townes