The summer and early fall months were full of activity, fun and so many words. It seems with each passing week, Townes’s vocabulary grows. We are practically having “mini” conversations now. One of my absolute favorite moment occurs when we change into his pajamas or daytime clothes – he leans over hugs my neck and ever so gently says in my ear, “I love you mama” Oh boy am in for it!? If there is ever a time for him to learn how to manipulate me it would be using those words with his soft yet so genuine voice – he could ask me for anything he wanted and I would likely be willing to say yes (don’t tell him though – there is no need for him to discover my weak spot so soon). Sometimes, he even grabs my face, smiles a sheepish grin and giggles, kinda like a grandmother would grab your cheeks before offering fond words. I have come to recognize this as one of his signs of love and affection. I’ve witnessed him do a similar thing to Luna from time to time.
Townes’s biopsy in March came back with glowing marks with an official result of a “perfect heart.” The issues with his atrium pressure that occurred during his first biopsy were not present this time. He now will not require another one (of course unless an echo unexpectedly shows differently) for two years! Hallelujah!
After our appointment in May, I felt as if I was walking on cloud nine. We were told Townes now only had to come in for a transplant appointment once a quarter instead of every two months and bloodwork (assuming all labs remain normal) every six weeks instead of every month – this is what I call WINNING!
And then just when I thought it couldn’t get any better…after his 3rd quarter appointment instead of walking on cloud nine, I was surely walking on water like Peter himself. Positive there was a mistake when the transplant team told me he didn’t have to have bloodwork until his next appointment in November….really THREE whole months?! Surely this is incorrect, but a couple weeks ago as I re-read the email again from my desk confirming Townes didn’t have to go back to Vanderbilt for any reason until his appointment in November, I suddenly transformed into an Olympic gymnast doing backflips at my desk. Mind you, I have never actually completed a back flip except off a diving board, but if I had been a teenager again…I might have tried that day. I cried happy tears at the news. It may seem small and to some, insignificant, and if I am honest, I never expected the avalanche of emotion that arose within me. But that’s just it, isn’t it….we don’t realize how heavy the load, at times, weighs because we adjust, accept, and adapt to what becomes our normal but if even the tiniest shift occurs we feel lighter.
For about a year, Townes has suffered from extreme eczema in his diaper area – after many dermatologist appointments, countless google searches, and an unknown amount of money spent on creams and lotions, I broke one day. It felt as if my heart literally cracked open as I could not face another day of watching a small animal being mutilated…it is surprising to learn how severe that area can bleed and his huge crocodile tears I didn’t want to catch them any longer. I drew the line, no more – time for potty training and I didn’t care if he was a bit “young”. So, we did it over Memorial Day Weekend – I put my own fears and thoughts about the inconvenience aside. I pulled up my big girl panties (metaphorically speaking) and boy oh boy did he surprise me again that first weekend with how well he caught on. A few M&M’s and rewards later and Townes was on a roll! We experienced a bit of regression after a couple weeks which I learned was normal but now he has it conquered. Bad news – less diapers did not translate to less irritation. As it turns out, Townes has now been diagnosed with psoriasis in that particular area so now changing treatment course.
In the midst of all of this, we also got a puppy!
I know, I know…I am just as surprised as you are as I had adjusted to only Luna and being a one dog family. In the spring as Townes words started developing, he began talking about Tucker. One day, he grabbed Tucker’s picture off the shelf, while holding it close, he said, “I miss Tucker. I really liked Tucker.” Insert every emoji possible to describe what my insides did in that moment. I looked at him and hoped he could read the sincerity in my face when I said, “mama does too buddy.” So, after a few days of watching him continue to talk about Tucker and point out his picture, I asked him, “Would you like another dog?” In retrospect, this is obviously a dumb question – because what animal loving child is going to say no? (jokes on me)… and so, we brought our new yellow lab, Leo, home in June. Leo has been a great addition, a joy and only a little rambunctious. Townes took to him immediately; Luna on the other hand caved after about six weeks – now we are all smitten with his easy going and laid-back temperament.
Thankfully, Townes isn’t school age yet or I am sure the school would have recently given us a call about all the ways in which Scott and I have been “exceptional parents.” Trust me when I say this was by accident. Somehow we managed to teach Townes in just a week’s time about a “Roadie”, “A Shooter” and “A Chaser”. I promise it was innocent enough when Townes told me he needed his water for the car and I responded with “ah yes, let’s grab your roadie.”
It wasn’t until after Scott had the most brilliant idea to convince Townes it was fun to take his ear infection medicine (yes, another double) that I realized what we had done. Since he wasn’t feeling well, I brought Townes some gummy bears home as a treat. Since Townes had never had a gummy bear or in other words a straight shot of sugar before – they were a hit! After a two-day struggle of trying to force him take his medicine, Scott invented the “the shooter” and “the chaser.” In the simplest of terms, he dropped a gummy bear in the medicine cup and when Townes finishes he gets the gummy and to top it off, he can choose another color to chase it down with. Brilliant…harmless enough…and most importantly effective as we finished all 10 days of antibiotic…but ah, thankfully no phone calls yet.
It’s been a while since I sat down to put pen to paper (or rather fingers to the keyboard to type but alas we are nearing the end of 2022). As a sit here reflecting on the months that have gone by since my last update, I would be remiss not to recognize that writing is cathartic for me. Maybe I should try to do it more. My very nature is to be introspective collecting my thoughts, feelings, opinions – often not speaking it out loud but rather internally processing so now as I write I realize, I should do it more…only time will tell if I make the time.
Scott and I just spent some time away on vacation (which would not have been remotely possible without both of our parents – Townes seriously is one spoiled boy with the best Grams, Pops, GrandVivi and Bear Pa around!)
I’ve always been a believer in time off or vacation for the simple reason that it allows you time and space away from the everyday activity, it breaks up the days that at times become monotonous and allows you some freedom from your normal routine. Vacations allow you time to think, to be creative, to dream, to grieve.
My favorite day occurred when we decided to go out on our own and rent a little boat to sail around some islands off the coast of Sardinia, Italy. It was beautiful and little did we know that a sailboat tournament was in our midst as these majestic and breathtaking 60’-80’ sailboats went sailing by – it was simply stunning.
Being on the water with nowhere to go and no other place to be allowed me time to sit in reflection. As I was thinking about Townes, replaying recent moments that I cherish and missing him all at the same time my heart felt as if it could explode with immense joy and love. But simultaneously, I wondered why is it that I suddenly found myself sitting in a puddle of tears as massive waves of grief swept over me.
Thankfully, I didn’t have to spend too much time in self analyzation as the Holy Spirit reminded me of something Scott had shared just weeks before as he was grappling with his own grief of the sudden death of a friend. Scott, came home to tell me he found a book in his office that my parents gave him on parenting by Mr. Rogers. He went on to explain in the book that Mr. Rogers is walking parents through toddlers with their big emotions and how they are learning how to cope with them and process all the new feelings. Mr. Rogers says sometimes, children need to know you can be happy and sad at the same time and that is okay. Scott looked at me earnestly and said, “I think that is a good reminder for adults as well.”
Simple yet Profound.
So that’s where I found myself that day on a boat with a clear blue sky, sun shining, and crystal water – happy and sad at the same time. Full of immense joy for the gift of Townes and all the moments I have been given. The sweet ones, the funny ones, the sad ones, the hard ones. With each passing day as he grows, the stark reality of what I gained because of another’s loss becomes more vivid. When Townes says “rock mama rock” because he is sad and wants to feel comforted, I get to hold my child and sing to him while another mother does not. As I watch Townes get excited about going to White Bison (a coffee shop) with Scott on Friday mornings to get a muffin together, the loss of another father lingers. So, on the boat off the coast of Italy, I realized I was once again grieving a child I never knew, grieving for a family I may never meet, grieving for a life stolen from them but celebrating their selfless and unimaginable decision to give Townes a chance to live. For now, and likely as I continue on this journey for years to come, Mr. Rogers has offered the simplest explanation for how to process the big feelings and varying emotions wrapped up in the strange paradigm I so often find myself trapped within. Happy and sad simultaneously.
My tears began to dry and the grief slowly subsided, I was left sitting in awe and wonder once again; reminded of the life changing power of redemption, the meaning of the sacrifice at the cross, and the never-ending hope found in Christ. As I sat there on that small boat, I imagined Jesus was there beside me – likely using his nail marked hands to wipe the tears from my face, untangling his hair from a crown of thorns to wipe up the puddle of grief at my feet all while gently encouraging me to hand him my anguish as his burden to carry. He was patiently reminding me that as he holds me, he holds them too. He is enough and will fill all the gaps if we let him. Matthew 11:28-29
So this holiday season, let’s all take some time to invite Jesus in. Maybe it’s as simple as reading the Christmas story and asking the Lord to reveal something you haven’t contemplated before. I know these past few weeks I have spent a lot of time considering both Mary and Joseph – pondering the immense amount of faith both together and separately they must have had.
How does a woman in that culture carry the stigma that must have followed her all of her days of giving birth out of wedlock? And to think, she had to wait 30 whole years to watch the prophecy begin to play out.
And Joseph? In a culture where honor was upheld as one of the highest ideals, chose to stay with a woman whom from any outsider’s vantage point completely disrespected and dishonored him. Then, Joseph didn’t even witness, at least not on earth, his son step into his purpose.
I can only think of a couple reasons either could do such a thing: complete and utter faith, trust and love in God the Father. So, the question I have for myself – can I muster even an ounce of that same type of faith going into the New Year?
For more on the Christmas Story: Matthew 1-2 and Luke 1-2
A while back I mentioned, I was working on something and couldn’t wait to share it with you – now is the time! But first let me say, thank you for being a part of this story, for continuing to pray for Townes and believing in the calling the Lord has for him – thank you for willingly joining as a witness to the Lord’s story.
What feels like many, many months ago after the encouragement of more people than I can count, I began sitting down to put pen to paper and what morphed out of that time alone with God and my thoughts is a book. A book chronicling our journey but even more so a recording of all the ways the Lord carried us through one of the most difficult seasons. A journal of sorts to serve as a reminder that we serve a God whose grace, mercy, generosity and love knows no bounds; his promises were just as true yesterday as they are today and forever; and our God is one of miracles both small and large. A book that I hope if nothing else serves as a catalyst for myself in days when I need to be reminded of who God is (Exodus 3:14 & Deuteronomy 10:21) and a starting point for Townes one day to have a first-hand account of all the small and large miracles in those early days.
Ridiculously Hopeful will becoming soon in February to a bookstore (Amazon) near you.
We have also created a website where I would love for you to subscribe to an email list for updates and follow along our journey at www.ridiculouslyhopeful.com.
We will also be putting together a launch team, called HopeDonors, to help in the weeks leading up to the book’s release – if you or someone you know would like more information on what this may entail, feel free to reach out to me at [email protected].
To God be the glory for all the blessings in my life. We wish you a very Merry Christmas!
All our love,
Maleah, Scott & Townes