It was the day that you, my breathtakingly beautiful baby, redefined the meaning of my entire life. It was a day that your perfect self entered our world through so many imperfect adversities. And still, somehow, Mama finds it more difficult to manage the raw emotion surrounding the day that you entered our lives verses the day you left our lives…
You see, your birthday is an “anniversary” that I’ve wanted to celebrate so badly, but never got to… Whereas, the day you passed away is an “anniversary” that I never wanted to begin with, but got anyway…
It’s not very profound, but it’s the only ‘small puzzle piece’ that I’ve “resolved” after your 1st, 2nd, and now 3rd Birthday: In the end, I guess it “feels better” to get what you do not want, than to deeply crave what you cannot have…
Mama never wished to see you go, but that day passes with slightly more “ease” than this annual milestone, where every fiber in my body forever yearns to recognize your growth.
Happy 3rd Birthday, my sweet Theodore; and until next year comes along, I’ll close my eyes and imagine your pudgy little toddler lips smoochin’ me back… I love you.
⫸ 𝕋𝕠𝕡 𝕋𝕖𝕟 𝕋𝕚𝕕𝕓𝕚𝕥𝕤 ⫷ ————————— ➙ 18 pounds 13 ounce ➙ 28.75 inches long ➙ new words: “Ga-Ga!” & “Maaaa!” ➙ got 4 new teeth on top all at once ➙ “Mr. Open-Mouth Slobbery Smoocher” ➙ smacks lips and signs for “more” food ➙ favorite: swinging fast at the park ➙ only drinks from special 360-rim sippy cup ➙ lowered crib since strong boy pulls-up now ➙ loves shredded chicken, eggs, & pizza!
⫸ 𝕄𝕒𝕞𝕒’𝕤 𝕄𝕠𝕤𝕥 𝕄𝕒𝕣𝕧𝕖𝕝𝕠𝕦𝕤 𝕄𝕠𝕞𝕖𝕟𝕥 ⫷ ————————————————————— It was a long day, and somehow it was only 3:30pm… It was a long week, and somehow it was only Monday… We all just plopped on the couch. It was a long shot, and somehow your whimpers turned into giggle fits of delight…
Monday, May 9th to be exact. It was as if my heart just gracefully bowed out of the boxing ring; it felt severely bruised from missing your big brother a little extra, as I had just sent out his monthly care package in the mail that afternoon. With four teeth cutting their way through your tender swollen gums, there’s no one better than you who understands the tiredness that can result from sad emotion…
We all admittedly were procrastinating when it came to beginning the school-night evening routine… “MacKenna please start your homework!” If I said it once, I said it ten times, all interrupted by your aggravated cries; my poor baby, tearing at your mouth as if you were able to pull the teeth down into place yourself. I glanced at the clock and realized that ‘Motrin’ was another 2 hours away; parents never feel more helpless than when they can’t relieve their child’s discomfort… so restless… I sat you up, your bum on my belly, and all of a sudden you began to cackle… and I mean you bursted into the kind of laughter that bounces your entire torso up and down. It was contagious; we were both giggling with tears squeezing out the corners of our eyes, and I could barely make out: “What is so funny, MooMoo?” I turned around as you flailed your arms above your head in adorable hysterics… of course, your sister is responsible for this mood shift. Maybe she still didn’t start her homework, but it was only her funny faces and goofy dance moves that could turn this night around…
You absolutely adore her, and it’s easy to see why… Over the past few years, MacKenna has demonstrated her incredible ability to generate pure joy from extreme pain; Arthur you’re guaranteed a lifetime of happiness with her by your side. Your big sis thrives by bringing smiles to other faces, and lucky for you, she lives under the same roof! Teething stinks; it’s one of the first and many pains this world contains. While the sweet grape flavored medicine can help, sometimes all you need is a strong does of your big sister.
That’s right, Michael Nelson, you’re an easel back. Hear me out… I’m talking about those long straight edge structures that protrude out from behind a picture frame. It may be the unpopular opinion, but the ‘easel back’ is quite frankly the most important piece. Without it, the beautiful image behind glass would simply fall flat on a surface. Like an easel back, Michael, you never seek the spotlight, yet you provide the constant and necessary support in order to let everyone else see the “full picture”.
You are the ultimate ‘supporter’; both at home and in your workplace you extend a helping hand to anyone without hesitation. You are the ‘easel back’ that props people up at just the right angle; the stability that those around you feel hinges directly on your extreme compassion. I had the unique opportunity to witness you be ‘𝘋𝘢𝘥, 𝘊𝘊𝘙𝘕 ’ to our Theodore. Dad first, but yes, ‘registered nurse’, too. Your compassion involved advocating clearly, reasoning with logic, and exercising extreme patience while constantly reassuring me in the most terrifying moments with our son. If you act in the workforce anything close to how you did with Theodore & I, it is absolutely no surprise that you are being honored as ‘Nurse of Distinction’.
Scouring downtown Buffalo tonight in order to find this billboard was such a fun family memory that I will never forget; a moment that deserved to be documented… Because when you go from ‘easel back’, to being ‘framed’ front and center on a billboard illuminated 50 feet high in the sky, I surely wasn’t going to let your humble self forget it! Simply put, I just love the crap out of you, Michael. #SoProudOfYou
The hard truth is when I look at a picture of my children, I instantly see the one that is missing. It is my broken heart that sometimes has the 20/20 vision, while my regular eyesight takes a backseat. I see the unseen. I see the empty space above MacKenna’s shoulder where Theodore should be leaning over, with his 2.5 year-old chubby arms tangled inside her hair. I see Theodore’s blonde curls that have finally grown-in and made their way over his big toddler ears; I see his untucked matching plaid shirt with the one navy blue suspender strap hanging off. MacKenna should have a brother sitting on her lap 𝘢𝘯𝘥 squeezing around her neck. Grief is “special” like that; it gives humankind the blessing and curse of seeing the unseen.
…Because while I sit quietly this morning with my coffee in-hand, processing another hectic Easter holiday that has come and gone, I also “𝘴𝘦𝘦” the distraught expression on Jesus’ face when he learned of his daunting assignment to save all of humanity. I see the tears rolling down Jesus’ scruffy cheek the night before His brutal crucifixion; He, too, understood fear, anxiety, and all things ‘unfair’. Through the most painful death, came the greatest gift of eternity, and because of that, I see the unseen. I see my Theodore with a whole heart, running; running 𝘧𝘢𝘴𝘵between both of his Papas who tickle and kiss him every few minutes, until it’s finally my turn again… #TheGiftOfEternity
I saw the flat line. It was a flat line that told me your heart was finally too tired to produce another beat. An illuminated flat line had the ability to call the attention of dozens of people within seconds; my own eyes being the first and the last to acknowledge the magnitude of its meaning… I glared at that horrific flat line between blurring tears as if I was some sort of superhero who had the power to make it spike again. But, not even the strength of my love for you could create a single little blip in that awful flat line.
Last night, I also saw a flat line; it drew me in like a heavy undercurrent that pulls you away without permission. I ran towards the glowing sunset with your little brother in-hand, and I saw the flat line where the blue ocean met the burnt orange sky; the flat line that the big sun is required to pass before mankind is ever granted another day… because the truth is, the flat line – whether it’s dreaded or it’s embraced, is like a boarder; an invisible boundary that must be crossed to achieve new beginnings. Two years ago, you so bravely passed over your flat line into the new territory of eternity, and not even Mama could hold you back… #CHDawareness
After a little wrestling, I clipped you in the “big-boy seat” of our stroller. You do not like the idea of being confined, yet Mama has a way of convincing you to relax and enjoy the ride… all your frustrations quickly dissipated after tucking a blanket around your sides, popping a banana puff in your mouth, and placing the bumpy dino-teether within your grip. It’s always a good sign when the bottom of your heels begin to clink together with excitement…
…and away we went!
It was the first nice weather day of the year; your big sis was in school, and Daddy was sleeping from night shift. You, my little 8-month baby, have the ability to make as much noise as a whole football stadium of fans in an overtime game. We call them “squawks”, but honestly, they’re more like long drawn-out bellows that also have the ability to reach decibels I didn’t even know existed. Sometimes I’ll catch myself instinctively trying to coax you into softening your tone; I press my nose against your drooly cheek and whisper sweet gentle sounds into your ear, but you, Arthur, are definitely not one to be easily persuaded. You whip your head around, look me directly in the eyes as if I’ve insulted you and then let out the biggest: “AHHH-GAHHHH!”. Needless to say, being outside after a long dark winter felt absolutely ‘freeing’, for us both. Your voice didn’t have to bounce off our walls any longer, but instead it beautifully echoed within the trees.
The birds were matching your volume. The wind still carrying winter’s chill. The hot sun landed it’s rays on the top of my head like a warm hug. As we continued walking down the bike path, I closed my eyes and deeply inhaled some of that heavenly atmosphere. Just then, a few tears began to leak out of the corners of my eyes; it was as if I was already internally overflowing, and that fresh breath of air actually expelled what needed to come out. There’s something about nature that makes me feel so close to your brother, Theodore. Maybe it’s existing around everything that’s completely untouched by man? Maybe it’s not being contained by four walls and having the ability to fully interact with the unknown? …or maybe it’s the opportunity to simply connect with our “inner-child”; becoming ‘loud’ with our feelings, and having no fear of judgement from the birds and the bugs… yep… “AHHHHHHH!” – this time, it was me who belted it out, straight up to the heavens with no barriers in-between… you paused, and looked up at your goofy Mama with a huge smile of approval. I love you, Arthur.
223 days of studying your eyes; I fixate on the faint gold ring around your dark pupil and how it dissolves into a large mass of deep crystal blue.
223 days of kissing your head; I lean in with pursed lips, simultaneously inhaling your perfect baby sent, and I’m always greeted with some sparse fuzzy hairs tickling my nose.
223 days of holding your hands; I delicately wrapped your wrinkly newborn fingers around mine, and I now encase your entire pudgy palms to provide support during the proud moments of balancing upright.
223 days of singing to you; I instinctively put a melody to most of our communication, as I yearn to provide your laughs in the good times, and your comfort in the hard times.
Mama can barely believe that she had these same 223 days with your brother, Theodore. And then tomorrow comes ‘day 224’; yet again the beginning of a new chapter. Tomorrow is the first “𝘦𝘹𝘵𝘳𝘢” day that I’ll be able to spend with you; a day I was never given with your brother. I’d be lying if I said that entering this uncharted territory wasn’t overwhelming; I’ve found a ‘weird peace’ in always recognizing your wide variety of similarities with Theodore. But now, I must rely on my imagination and always wonder from here on out how many of your characteristics truly would emulate ‘Big Brother’.
I so badly wish this milestone wasn’t our reality, but Mama is forever grateful for the gift of these past ‘223 reminiscent days’ with “my boy(s)”…
It’s amazing just how much love can grow in 223 days; it can root itself so deep and so strong that not even death can kill it.
“𝘊𝘙𝘈𝘚𝘏 “…toys make their way over the highchair ledge, bouncing off the floor in all directions. “𝘈𝘏-𝘎𝘈𝘏𝘏 !”… you shout with great anticipation for dinner. “𝘐’𝘔 𝘏𝘜𝘕𝘎𝘙𝘠 “…your sister insists, as she hurries through homework in order to bring out the forks and plates.
Dinner is served by Dad, just as he flies out the door; his own food wrapped in a to-go container or else he’ll be late for night shift. “𝘚𝘓𝘈𝘔 “…the front door, as he leaves in a rush. “𝘞𝘖𝘖𝘍 !” …Wanda has to go pee outside. “𝘉𝘌𝘌𝘗-𝘉𝘌𝘌𝘌𝘌𝘗 “…your green bean puree is ready! “𝘞𝘖𝘖𝘍 ” …Wanda is cold and wants to come back inside. “𝘎𝘙𝘈𝘈!”…you yell; your impatience is growing…
My food is left on the counter, ready to reheat later, and your sister begins to indulge as I come running to the rescue, ready to fill your belly. “𝘖𝘗𝘌𝘕 𝘜𝘗 !”… I’m anxious to hurry-up because there’s still so much to do before bedtime. “𝘌𝘌𝘌𝘌𝘒!” …you shriek with closed lips, communicating your disgust with the night’s menu. “𝘐 𝘋𝘖𝘕’𝘛𝘓𝘐𝘒𝘌 𝘛𝘏𝘐𝘚”…your sister declares, as she supports your ‘dinner disapproval’ just in a slightly more mature fashion. “𝘊𝘓𝘈𝘕𝘎-𝘉𝘖𝘖𝘔-𝘚𝘔𝘈𝘚𝘏”…the pile of dirty dishes in the sink comes toppling down.
“𝘞𝘈𝘈𝘈𝘏 !”… Arthur. meltdown. initiated.
I walk away. I feel stranded. I hold my head. I want to cry… but, “𝙃𝙀𝙔,𝙔𝙊𝙐 𝙒𝘼𝙉𝙉𝘼 𝘿𝘼𝙉𝘾𝙀?!” Yes, before my own tears begin to well-up, I make this absurd proposition. You and your sister stare at me and go silent… “𝘏𝘌𝘠𝘎𝘖𝘖𝘎𝘓𝘌, 𝘛𝘜𝘙𝘕 𝘖𝘕 𝘚𝘖𝘔𝘌 90’𝘚 𝘔𝘜𝘚𝘐𝘊 !”…at least Google Hub listens to me, even when both of you refuse… I scoop you up, and we start casually bouncing to the beat. Your little legs kick my sides with excitement as I begin to march in circles around the island countertop. Big Sis leaves her seat to join our dance routine with her funny twists and turns, making you giggle-away the puddles of tears around your eyes. And just like that, an irritable moment quickly turned marvelous.
These surprise ‘dance parties’ have been on repeat the past few weeks. Something as trivial as turning on the radio has had the ability to transform our loud, chaotic, and uncoordinated kitchen into what feels as peacefully synchronized as a ballet dance floor.
So, I promise to slow down, Arthur; I will continue to ask in hectic moments: “𝙃𝙀𝙔, 𝙔𝙊𝙐 𝙒𝘼𝙉𝙉𝘼 𝘿𝘼𝙉𝘾𝙀 ?!” …because before long, it won’t always be your pudgy little hands pinching the back of my arms, but my old wrinkly hands clutching onto your arms…
Mama certainly prefers being 𝘣𝘦𝘩𝘪𝘯𝘥 the camera verses in front of it… but I’d also climb to the top of Mount Everest if it meant sharing your story, Theodore… ‘CHD Awareness’ is now something I will be forever passionate about until the day I die, when I can hold my courageous heart warrior in my arms once again.
Thank you SO MUCH to Spectrum reporter, Andy Young, for reaching out and surprising me with this unique opportunity!
Thank you SO MUCH to my dear friend, Tracy Parke Gibas, for providing the absolutely beautiful hard cover Mama Bear books featured in this clip. I send out one with every Teddy Bear Care package!
Thank you SO MUCH, to the amazingly talented Barb @ So She Sews & Quilts, for putting all her heart and soul into our enormous Theodore quilt featured in this clip. It will be a family heirloom passed down for generations!
My heart will remain broken until I’m ￼reunited with Theodore, but it sure does feel full of love today…
If it’s ever in your heart to sponsor one of the heart families we choose each month, feel free to visit: https://fallingrightsideup.com/monthly-teddy-bear-care…/ …When the time is right, I plan to do SO MUCH more with ‘Falling Right Side Up’ in my precious Theodore’s honor, and in the name of ‘CHD Awareness’. Go out and show some love to someone today.
Here’s 𝟐 of my 𝟑 little Valentines that will forever occupy their own little spaces in my heart. Theodore has taught me that our hearts are cool like that… what the eyes can no longer see, the heart will always remember. And even though my heart feels very empty with one Valentine gone, the perfectly portioned sections specially reserved for each child will always have
But without a doubt, it is you, Michael Nelson, who constantly flips that switch for me; who turns on that “no vacancy” sign inside my heart when I rather sit in the dark. You illuminate it in the most obnoxious bright neons to constantly remind me that a ‘𝐟𝐮𝐥𝐥 𝐡𝐞𝐚𝐫𝐭’ is not determined by how many of our kids live under our roof, but by how much our love for them withstands time. And just when my “no vacancy” light starts to flicker, you’re right there, recharging it with new batteries; giving me grace when I’m withdrawn, randomly saying Theodore’s name, and validating my every emotion. It certainly hasn’t been pretty, but somehow you make me feel beautiful while I bear the ugliness of grief. I love you so ridiculously much, Valentine of mine.
⫸ 𝕋𝕠𝕡 𝕋𝕖𝕟 𝕋𝕚𝕕𝕓𝕚𝕥𝕤 ⫷ ————————— ➙ 16 pounds 1 ounce ➙ 26.25 inches long ➙ rosey cheeks; poor teething babe ➙ sits-up unassisted for a few minutes ➙ “Mr. Handsome Hot Temper” ➙ wakes up 1-2 times a night for a snack ➙ devours all of Mama’s homemade purées ➙ favs: snowy walks & blowing raspberries ➙ refuses the bottle and demands Mama ➙ loves to horse around with MK & be tickled
⫸ 𝕄𝕒𝕞𝕒’𝕤 𝕄𝕠𝕤𝕥 𝕄𝕒𝕣𝕧𝕖𝕝𝕠𝕦𝕤 𝕄𝕠𝕞𝕖𝕟𝕥 ⫷ ————————————————————— Mama must be insane to say I actually haven’t hated your 3AM wake-up calls, and maybe I’m even crazier to deem them as some of our most ‘marvelous moments’ this month?
Throughout the past few weeks, like clockwork, between 2-3AM, I start to hear your little feet rustle inside your sleep sack. It’s true, a mother may close her eyes at night, but her ears stay wide open. I know exactly what you’re doing without even having to glance over at the glowing monitor screen. The gentle rustle begins to turn into a heavy kick against the mattress springs, and then I know I have just a few seconds before the whimpering sets-in. My eyes remain closed as I wait that extra minute to see if you’re willing to settle back to sleep, but like a switch, your meek fussing transforms to a boisterous shout; you crack me up Arthur, the way in which you command attention is similar to a drill sergeant ordering around new recruits. And right on schedule, my eyes pop open in confirmation that “mama is needed”.
I tiredly stagger towards your bedroom, but with brand new perspective. This. is. luxury! This wake-up call is not from a doctor in the middle of the night telling us you’re in cardiac arrest. This wake-up call is not the loud beeping of machines signaling your desatting, not getting enough oxygen. This wake-up call is not a surgeon tapping us on the shoulder in a waiting room saying we can go see you, but that you’re heavily sedated and unable to move. No Arthur, your wake-up calls are just that- my “wake-up” and reminder of the beautiful reality that comes with a healthy child; strong lungs that wake up the entire house, and good blood circulation that turns your skin pink while crying, instead of blue. The simplicity of needing ‘just me’ to change your diaper, rub your back, and nurse you back to sleep is the polar opposite of your brother not needing ‘just me’, but sometimes a whole team of medical professionals to pump him with medications in order to save his life.
I miss Theodore with every fiber of my being, but these past couple years I’ve realized that when you want what you can’t have, you start to need those things that others don’t want… like 3AM wake-ups… It’s now thirty minutes later, I’m staring down at your sweet milk drunk face, Arthur, and I wonder “who really needs who?”. I love you.
⫸ 𝕋𝕠𝕡 𝕋𝕖𝕟 𝕋𝕚𝕕𝕓𝕚𝕥𝕤 ⫷ ————————— ➙ 15 pounds 1 ounce ➙ 25.5 inches long ➙ reaches for anything in sight, our faces included ➙ met Santa, but infatuated with Mrs. Claus ➙ “Mr. I’ll Bite Your Knuckles” (if you let me) ➙ enjoyed 1st Thanksgiving at the table ➙ sleeps through the night… when Dad is home ➙ favorite: staring at all the lights in church ➙ pounds chest super hard when excited ➙ loves oatmeal mixed with apples or bananas
⫸ 𝕄𝕒𝕞𝕒’𝕤 𝕄𝕠𝕤𝕥 𝕄𝕒𝕣𝕧𝕖𝕝𝕠𝕦𝕤 𝕄𝕠𝕞𝕖𝕟𝕥 ⫷ ————————————————————— It’s no secret that Daddy is the chef of the house, but Mama certainly has a passion for the “first year of foods”. I find it absolutely fascinating how at only a few minutes old, you, my tiny brand new human, could instinctually latch on and drink milk like it’s a task you’ve mastered for years… Now, fast forward five short months, and those same incredible ‘instincts’ of yours have you patting your rounded belly, reaching for my spoon, and opening your mouth so wide, as if you’re about to bite into a double quarter pounder with cheese! Instincts. They’re weird. They’re cool. They’re nearly impossible to suppress.
Nourishing you is hard work, yet it brings me so much joy and satisfaction. Maybe it’s because with your brother, Theodore, I was unable to fulfill my instinctual desire to feed him for months at a time… Maybe it’s because I now have a greater appreciation for the simplicity of watching food go down your throat and into your belly, instead of cringing while your brother’s “food” went through an IV in his veins, or down an NJ tube in his nose. And just maybe, it’s because I absolutely adore the wonder and excitement I get to witness in your eyes when new flavors hit your tastebuds; ‘taste’ is deemed a ‘simple pleasure’ in life, yet I’ve actually learned that it is not all that ‘simple’ for some…
Similar to your inherent inclination to find food when your belly grumbles, my maternal instincts crave to provide it. I look forward to watching your legs kick with impatience as I mix the grains in with milk. I wait with great anticipation to watch your facial expressions after you have new fruits every couple days; I found that apples cause your little nose to crinkle. Arthur, it’s like you have bailed me out of jail with your messy little oatmeal-faced grin; those little bits of ‘instinctual motherhood’ felt as though they were lockdown for the longest time. You’ve set them free; my “feed your baby instincts” now feel as ‘free’ as the mushed baby food that escapes through the corners of your lips and down your chin…
Tears are allowed to exist amongst happiness; when they appear, they’re just deemed ‘happy tears’. So surely smiles are allowed to exist amongst grief; I say we just deem them ‘grieving smiles’… These grieving smiles are certainly forced at times; yet they also originate from new perspective, and carry immense gratitude for the present day.
Never did I imagine our Christmas Card to look like this, but I’m so extremely grateful for the two blessings in our arms, and the one on our mantle…
⫸ 𝕋𝕠𝕡 𝕋𝕖𝕟 𝕋𝕚𝕕𝕓𝕚𝕥𝕤 ⫷ ————————— ➙ 14 pounds ➙ 24.5 inches long ➙ officially part of the “rolling club” ➙ superhero Jack-Jack for Halloween ➙ “Mr. I Don’t Like Sleep Anymore” ➙ enjoyed 1st time on the swing at the park ➙ wakes up every 2-4 hours overnight again ➙ loves to watch Big Sis dance and play piano ➙ cracks up at Dad’s pretend “toot noises” ➙ started swim classes with a friend
⫸ 𝕄𝕒𝕞𝕒’𝕤 𝕄𝕠𝕤𝕥 𝕄𝕒𝕣𝕧𝕖𝕝𝕠𝕦𝕤 𝕄𝕠𝕞𝕖𝕟𝕥 ⫷ ————————————————————— This month I’ve realized that the ‘most marvelous moment’ is not always because of it’s perfection, but sometimes because of the exhale that follows the struggle.
“Breathe in 1, 2, 3 … and out 3, 2, 1 …”
It’s been my mantra this past month; quite literally my mellow chant that I’ve rehearsed out-loud on repeat. Despite watching your perfect little self discover more details of this big world with each passing day, this month felt hard. Mixed in with your baby giggles and goofy grins, you had uncontrollable outbursts and clawed at my chest in frustration. Whether it was impatience with my slow milk letdown, crankiness from not enough sleep, or just painful gas that was upsetting you, I’ll never know… You couldn’t use words to tell me, and frankly, I became speechless many times, too. I relied on counting:
“Breathe in 1, 2, 3 … and out 3, 2, 1 …”
Daddy was on night shift, and that evening presented all the elements of a perfect storm; spinning out of control like a tornado was tiredness from sleep regression, overwhelming household duties, and ‘mommy hormones’ accompanied with low milk supply. After mixing in some heavy grief from terribly missing your big brother, the end result was a hurricane. Our house was flooded with tears as you and I shared a dramatic tantrum together. That was, until…
You laughed at me. And I mean, you. laughed. at. me! All of a sudden life became really funny to you, Arthur. Maybe it was the sound of my snot-filled nose snorting between ugly cries, or maybe it was the crazy design the runny mascara made on my cheeks that sent you into a hilarious cackling fit. Either way, that contagious laugh of yours was the big gust of wind that pushed away all the looming dark clouds; it blew in a fresh breath of air that I swallowed as fast as I could…
“Breathe in 1, 2, 3 … and out 3, 2, 1…”
My shoulders relaxed, you latched-on, and I nursed you into a peaceful sleep. As I sat still, I thought about the skill of counting to three; how can something I mastered in preschool be so tough? It’s true; in the moments where anxiety has you in a chokehold, the concentration required to recite three consecutive numbers becomes extreme talent in and of itself. Our demanding society constantly raises the expectations of parenthood, but even if I’m gasping for air trying to keep up, you’ll always be my beautiful ‘exhale’, Arthur Nelson.
I love you, Artie🧸
-❤️Alexandria … join me by #FallingRightSideUp 👆🏼 when life gets turned upside down👇🏼 Psalm 46:5
⫸ 𝕋𝕠𝕡 𝕋𝕖𝕟 𝕋𝕚𝕕𝕓𝕚𝕥𝕤 ⫷ ————————— ➙ 12 pounds, 11 ounces ➙ 23.75 inches long ➙ gives wide-mouthed smiles to anyone ➙ starts to giggle when feet are rubbed ➙ “Happy Drooly Thumb-Sucker” ➙ made first trip to Niagara Falls ➙ usually sleeps 10 hours through the night ➙ favorites: long car rides to fall festivals ➙ loves having loud “conversations” with Dad ➙ got dedicated at church with a big grin
⫸ 𝕄𝕒𝕞𝕒’𝕤 𝕄𝕠𝕤𝕥 𝕄𝕒𝕣𝕧𝕖𝕝𝕠𝕦𝕤 𝕄𝕠𝕞𝕖𝕟𝕥 ⫷ ————————————————————— I don’t know what it is about bath-time, but being alone together in the tub has been some of my most memorable moments with you, Arthur. Honestly, ‘bath experiences’ have been so very different between you and each of your siblings… I was so nervous with your big Sis being my first baby; getting any water in her eyes seemed like the end of the world, and I gingerly grazed her with washcloths as if she was a porcelain doll that could break. Then of course I longed to have that precious ‘bath time’ with your big Brother; he took ‘sponge baths’ to a whole new level, where sometimes it was such a big undertaking that both Dad and I needed an extra nurse to help coordinate IV poles, detach tubing, and even change dressings when they got wet…
So needless to say, our unsupervised soaking time in the warm bath water is more than just relaxing, it’s revitalizing to my soul. It’s simple. It’s quiet. It’s just you and me. I begin to run the water and your chubby legs start to kick with excitement; the second your bare bum gets immersed, you’re grinning from ear to ear. When I step-in to sit across from your bath seat, you’re always so “surprised” when the water rises just a little higher against your belly, yet you gladly welcome me nevertheless. I study your sweet face; I see MacKenna’s inquisitive twinkle and Theodore’s fierce stare all at once. Those piercing blue eyes of yours pay no attention to my frizzy hair and blemished skin; it’s like you can look straight into my heart as if we’ve known each other forever. Why is time such a thief; even “forever” seems fleeting. A tear puddles over the rim of my eye in sadness as I yearn so badly to have all three of my babies, stay babies. I swear your observant little self curiously tracked the tear as it made it’s way down my cheek, and all of a sudden you let out the sweetest “ahh-goo” that you matched with a smirk. And like magic, my tear of grief turned into pure joy all before even falling off the edge of my face into the bath below. It was as if your baby babble was telling me: Mom, just because the bath water doesn’t stay warm, doesn’t mean we don’t enjoy it right now – sit back and “soak it all in”…
Contrary to time always flying by, it actually seemed to stand still for a brief moment on the Atlantic coast this past month. I will never forget our time together on the beach that evening.
The sun was setting behind the clouds, as it was nearing dinner time, but we really had nowhere to be… You and I lounged on the beach chair while your Daddy and sister played in the waves. I was relaxed while nursing you to a live performance of nature’s soundtrack; the seagulls were squealing, the ocean was roaring, and I could even hear the swift breeze sweeping grains of sand across our belongings. My eyes danced between watching your wispy red hairs blow in the wind, and your sister giggling as she kicked the heavy sand along the shoreline. I gazed at your naked round belly rise and fall against the waistline of the little blue swim trunks you wore, as well as your cute stubby toes that repeatedly curled into the bright beach towel fibers; it was as if the perfect rhythm of your body had put me into a complete trance. My body was still, but my mind was so alert. With a deep inhale, it was in that stillness that I could actually feel your big brother’s presence surround us like a fine mist blanketing our skin. Tears fell as I embraced it all; nature is funny like that baby boy, as it can somehow make you feel extra close to heaven at times …
The sun was low, the waves were loud, the weight of your warm body was simply serene; it was in that moment our family felt most complete. #FamilyOfFive
I remember being so thrilled that you were “comfortable” enough on this particular day to lay ‘chest to chest’ with mommy; feeling your chest rise and fall with each breath against mine was well worth recruiting someone to help coordinate the process of delicately getting you out of bed…
I remember praying so hard that you’d fall asleep so it would buy us more “cuddle time” together; it was like hitting the million dollar jackpot when something as simple as you napping in my arms actually took place…
I remember inhaling shallow enough to keep you sleeping, yet deep enough to permanently memorize your baby scent before they stole you for another open heart surgery the next day; my hand instinctually found it’s way to your fuzzy head, and like a helmet, my fingers spread wide to cover you, as if I could ward off all danger…
Yet, I remember telling Daddy to “hurry up” and “take a picture” of this moment because I knew there’d be a day I’d no longer have you here to hold; your long-term prognosis haunted my every thought, as it predicted you leaving me well before I. could. even. “imagine”…
But, now what? …what happens when Mommy’s only choice is to “imagine”? Well, as of lately, I tend to visualize heaven existing right here, among us on earth. It was only a month ago that your little brother, Arthur, knew nothing besides “his own little world” that existed inside my womb. However, to his surprise, it was just a thin amniotic sac that separated him from a “whole new world” after birth. So, perhaps you are ‘closer’ to Mama after all; just like a baby that is unaware of their proximity in their mother’s belly and their ‘closeness’ to the next phase of life, maybe there’s also less “separation” between heaven and earth than we actually think?… Although the thought of ‘eternal life’ tends to be “located” up far away in the clouds, it surely helps calm my Mama heart to think that you are right here, with Jesus, just simply unseen; but eventually “within an arms reach”, too…
Happy 2nd Birthday in heaven, my beautiful boy. I would give anything to hold your ‘two-year-old body’ in my arms today, but I thank God that heaven isn’t “two” far away…
We love you more with each passing day that brings us closer to reuniting again.
On July 23, 2021, at 5:57am, all 7 pounds and 19.5 inches of you entered this world and brought a fresh, yet familiar wave of immeasurable joy…
We cannot wait to introduce you to the world’s best big sister, MacKenna, and teach you all about your incredible big brother, Theodore. I know Teddy is looking down, so proud to have YOU as his special namesake.
Without a doubt, you resemble both of your siblings, however, your unique little personality already shines so bright…
Thank you, my oh so very snuggly ‘Artie-Bear’, for being the third ray of sunshine that will forever brighten our days, and for officially making us a clan of five!
Welcome to the Nelson Family, where we embrace imperfection, honor life, and most of all, love hard. God knew that you’d fit right in …
Think about it. The first instinct a father has when holding their precious baby is to kiss their cheek… because what feels better than fresh newborn skin pressed against your lips when no words seem significant enough to properly represent your overwhelming amount of love? Those same fathers eventually experience earthly departures, yet that same first instinct remains… because what feels better than the unique scent of a loved-one pressed against your lips when no words seem significant enough to properly represent your overwhelming amount of love? From beginning to end, humankind simply craves love; it is the common denominator of life, whether it’s filled with many healthy years, or cut short by unfair sickness…
Happy Fathers Day, to my Husband, who got to excitedly kiss our daughter ‘hello’, but last year, had to bravely kiss our son ‘goodbye’.
Happy Fathers Day, to my Dad, who got to greet me with a kiss ‘hello’, but today, had to sweetly kiss his own Father ‘goodbye’.
& Happy Fathers Day, to my Beloved Papa, who for the first time this morning, got to meet my Theodore in heaven with a kiss ‘hello’, but only as soon as the family all had to kiss him ‘goodbye’…
Life is beautifully hard. It always seems to strike a balance, by forming one big messy composition of ‘happy hellos’ and ‘sad goodbyes’… But it’s all worth it with the love of our fathers and forefathers that know how to seal the beginning and end with a kiss.
I laughed when this little “superhero” requested a ‘Wonder Woman Birthday’ because prior to last month, the words were never even in her vocabulary… Ironically, her ‘silly thought’ quickly evolved to a very ‘appropriate suggestion’, as I soon began to realize that MacKenna casted herself for the perfect role…
I think back over the past two years, and I ‘wonder’ quite a bit about this “Wonder Woman” that I’m privileged to call my daughter… I wonder about how scary it felt to travel to a new city hours away, only to learn that her baby brother was born with a broken heart. I wonder about how brave she had to be to love Theodore, yet constantly see him in an untouchable state, covered in “stickers”, wires, and tubes. I wonder about about how sad she was to see her parents finally come home empty-handed, and learn that her special ‘big sister duties’ came to a complete halt.
However, what I do NOT wonder about, and to the contrary am absolutely assured-of, is her superhuman strength, tender loving heart, and ability to remain in a constant state of gratitude. This little ‘Wonder Woman’ may not be able to see through walls or into the future, but she is surely able to see the BEST in every (tough) situation. When duty calls, she may not fly-down to snatch me from fire or fight in hand-to-hand combat, but my super-girl surely ‘rescues’ my grieving heart, day in and day out.
-MacKenna, our amazing ‘Wonder Woman’, we’re eternally grateful for your passion to keep Teddy’s memory alive, and the pure JOY that you easily sustain in our lives. We cannot wait to witness your ‘heroic big sister skills’ in-action all over again, very very soon…
The gift of your life has brought immeasurable joy, even through the darkest days. The gift of your life has drawn us closer to God, as we’ve realized our own lack of control. The gift of your life has indicated that prayer does not always change circumstances, but it certainly changes us. The gift of your life has promoted the celebration of progress, instead of a focus on perfection. The gift of your life has proven that love conquers all; fully demonstrating that the power of love does not die, but can surely multiply… and because love never fails, my sweet Teddy Bear, the gift of your life has revealed that “God’s perfect gift” is not always what it seems, but always better than imagined… you’re no longer just a ‘LITTLE Brother’, but a ‘BIG Brother’, too!
Thank you, God, for our perfect gifts:
🧸 Theodore 8/30/19 – 4/9/20
Littlest Brother – Due July, 2021
…because EVERY good and ‘perfect gift’ is from above. James 1:17
… join me by #FallingRightSideUp
when life gets turned upside down
(: a huge shout-out to Justin Bondi Productions, for this amazing video announcement!)
Tomorrow, April 9, 2020 – My heart broke the same day yours was made whole…
And although I miss you more with every beat of my broken heart, I’d gladly give-up a piece of my heart, to know that God has replaced the missing piece of yours… I hope you know how absolutely, incredibly PERFECT you were to me, my fierce warrior, my sweet Theodore. Mommy loves you so much it hurts.
“Theodore picked out this stuffed bunny as a special gift for you, right before he went up to heaven to live with Jesus…”
That’s what we had to tell our 4-year-old three days before Easter last year. As tears welled-up in MacKenna’s eyes, she was devastated, yet grateful all at the same time. She couldn’t understand the thought of never seeing her baby brother on this earth again, yet felt so loved to receive such a ‘thoughtful gift’; one that was immediately named ‘Snowball’. I can’t help but think of the similar feelings Mary Magdalene and the disciples had when they heard of Jesus’ resurrection… Extreme gratitude, mixed with inevitable heartache. I picture them overwhelmed with emotion; the incomprehensible just happened right before their eyes. How could a man they’ve come to know and love no longer be in their company on earth, yet act so selflessly by giving such a ‘priceless gift’ of eternal life; one that is FREE to all who believe!?
I’ve come to learn that it’s completely okay for grief and gratitude to coexist; especially because both are a byproduct of love. And as I tuck-in MacKenna every night before bed with her brother’s gift of ‘Snowball Bunny’ sharing the pillow, I’m reminded of the ultimate ‘comforting tool’ that was given to all of humanity. Unlike a stuffed toy, who could use a heavy spin cycle in our washing machine every couple weeks, God gave us a gift of ‘relief’ that never needs mending; a promise of perishable grief and eternal love… #IWillSeeYouAgain
2020, if you’ve taught me anything, it is that a smile can both disguise pain and exude joy all. at. the. same. time…
It is that sadness and happiness know how to coexist if you’ll allow them…
It is that grieving can last a lifetime, but family lasts longer; family bonds are eternal…
Yes, 2020, you’ve so bluntly revealed that it’s our own responsibility to find the good in the bad, the beauty in the ugly… and ‘The Promise’ inside a broken world. I could easily despise you for stripping me of my precious son, leaving a void in my heart that can never be filled, or I can reluctantly thank you for broadening my perspective on what it truly means to live, love, and smile ‘through it all’.
Hi Theodore, Momma here… Today, marks 6 months. Half a year since I’ve looked into those fierce eyes. I have nothing profound to say, besides “I love you more than life itself”. Thank you for filling my arms for 223 days. It’s your strength that has quite literally become mine. Just one thought of your courage empowers me to do absolutely anything. And it is ‘honoring your battle’ that will always be my greatest privilege. I miss you more with every single beat of my heart.
Or maybe better said in the words of your big sister: “Hey, Fee-a-door; please tell God that we miss you.”
Happy Birthday, Michael! Although we never have a shortage of family ‘selfies’, it was these two very separate and distinct monumental moments that pulled at my heartstrings while I was browsing for a picture that best depicted YOU. It was reflecting on these two emotional days of saying ‘hello’ to our daughter and ‘goodbye’ to our son, that I better realized one of your very unique abilities. My Michael; the only person I know who can ‘imprint’ so heavily upon other lives without needing to apply any ‘pressure’.
Yep, that’s you. Confident, yet humble. Steady, yet gentle. Reserved, yet true. Just as you delicately stamped MacKenna’s footprint on the back of your hand, I’ve seen you also replicate her same calculated, yet compassionate mannerisms, leaving others feeling ‘hugged’ without touching them at all. And just as you gingerly pressed Theodore’s hand into the clay mold that now sits on our mantel, I’ve seen you also duplicate his same modest recognition of self strength, never begging for attention, while always uplifting others first. I hope you understand, the way you ‘imprint’ on us is more special than what we can physically see; it’s all about how loved you make us feel. It’s like magic; all your small ‘subtle ways’ end up creating this enormous impact in our lives.
Unlike deep footprints along the shoreline that eventually wash away, the permanent imprints you have already left on this earth within your 34 years will last far beyond our existence. The imprints you continue to make stand the test of time because the beautiful ‘mark’ you actually leave is not surface-level, but etched deeply into many hearts. And you, Michael, have given my heart a whole new shape; you began imprinting your ‘masterpiece’ upon my heart from our very first ‘hello’. Happy Birthday. I love you.
Mommy wanted to do something extra special to honor your beautiful soul; an eternal soul that is still very much alive. From the day you were born, it was always your soul that touched me more than your body. Even on your birthday, they whisked you away for the first open heart surgery before I ever had a chance to caress your flawless skin. Yet despite the many days you were ‘untouchable’, there was no amount of tubes, drugs, or physical distance that could separate your soul from mine. You follow me like a shadow that I refuse to escape; you and me – we are connected by something far greater than human touch.
You, Theodore, have taught me to look in the shadows; to see the unseen, and mask out the distractions of this world. In your shadow, I do not see the rainbow EEG leads attached through your blonde fuzzy hairs; I do not see the NIRS oxygen stickers covering your forehead, or a nasal cannula that disguises your chubby cheeks. Your shadow does not depict the NJ feeding tube invading your tiny nostril; it does not reveal the intubation tube intrusively taped around your lips, or your red splotchy neck from poor blood circulation. Instead, your shadow leaves me with what I simply know as ‘my Theodore’. I’m left with just a detailed outline of your precious soul; the most perfectly unique shape of what God created in His image (Ephesians 2:10). When all other details are erased, the remaining elements of your soul become my focus of beauty. You’ve shown me the importance of remaining in the ‘Light’ in order to recognize shadows; that shadows don’t originate from darkness, but are birthed by ‘light’ alone (John 8:12). Through you, I’ve leaned that shadows cannot discriminate against the color of skin, the cost of clothes, or even the our health, but more importantly, our shadows are the framework that house true identity. And you, my baby, (still) cast a shadow of pure tender love; a masterpiece built over your brief lifetime that is exclusive to only you.
It was no coincidence that your ‘shadow of love’ continually grew in size as your time with us gradually came to a close; just like the lowering sun knows how to lengthen a shadow as it sets on the horizon, your shadow expanded and covered hearts across the entire world within your last few months on earth. You have gripped my heart and revealed how our souls become most alive in the shadow, when everything else is stripped away. So even if I feel paralyzed in darkness when my soul craves you most, I promise to still stand up in the ‘light’, because it is only then that I’ll be able to cast my shadow, where our souls can collide. My soul waits for you in the shadows.
I Love You Forever, Momma xoxo
– Momma Bear, Alexandria
… join me by #FallingRightSideUp
when life gets turned upside down
(Please visit the contact page on this site to let me know if you’re interested in a custom silhouette of your family! Card stock prints & etched stainless steel pendants will be available. All proceeds will go towards ‘Teddy Bear Care’, which currently supports CHD families across America on a monthly basis ❤ )
The church doors opened, and all I saw was you. Not the friends and family gleaming on either side of the aisle, or even the photographer following us with flashing lights could distract me from your eyes. I felt my Dad’s strong grip around my arm, but it was your misty eyes that remained my focus. You took my hand; I studied your eyes. Under the alter light, I gazed into the deep turquoise and dark golden rings that encased your pupils; in your eyes I saw pure joy and excitement for what was to come, but more importantly I felt your love. It was palpable, like a gust of wind that lifted me higher than cloud9 for the entire 30 minute ceremony.
Fast forward nearly 8 years…
The operating room doors opened, and all I saw was you. Not the doctors and nurses prepping me on either side of the table, or even the anesthesiologist whispering updates in my ear could distract me from your eyes. I felt the surgeon pulling and tugging on my belly, but it was your misty eyes that remained my focus. You took my hand; I studied your eyes. Under the fluorescent medical light, I fixated on the brilliant ocean blue and little flecks of gold that encased your pupils; in your eyes I saw raw fear and heartache for what was to come, but more importantly I felt your love. It was palpable, like a tight hug that swallowed every ounce of my unwelcome despair for the entire 30 minute surgery.
This past year, Theodore, our sweet baby boy, managed to strengthen our marriage in unimaginable ways. Teddy may have had half a heart, but he was definitely blessed with Daddy’s eyes. And even to this day, I still get to study those eyes; in your eyes I see Theodore’s same ‘strength and courage’ for what is yet to come, but more importantly, I feel your love. When we first locked eyes, I’m so grateful that I threw away the key, Michael Nelson.
That is how it should still be… your pudgy little cheek pressed up against mine; your wispy blonde hairs tickling my temple as I press in closer and closer to you. Some mornings when it’s extra hard to catch my breath, I even find myself taking the back of my hand and pressing it up against my own cheek. If I close my eyes tight enough and inhale slowly, I can almost trick myself into believing that the warmth of my hand is the heat radiating from your perfectly rosy cheeks to mine. Then a tear. A tear leaks from my crinkled eyelids that are so firmly closed shut in concentration; it slowly travels down my face and separates my cheek from my own hand, like a knife slicing bread. And just like that, my cheeks are bare; reality slapping them hard enough to experience “whiplash” for days.
The truth is, if memories were that easily ‘relived’, grief would not exist. I’ve come to learn that grief is all of the ‘unspent love’ that we still want to give. Grief; it can completely drown the heart and mind if the “floodgates” are never released, expelling the accumulation of “deep water”. So, happy ‘3 months’ in heaven, my sweet Theodore. It’s the type of anniversary that I never imagined celebrating, but I will surely spend my ‘pent-up love’ for you by ‘giving-back’ to others every month in honor of your beautiful memory. I will continuously pour ‘unspent love’ from my “well of grief” until I can once again ‘love you’, cheek to cheek.
– Alexandria, praying Psalm 46:5 …join me by #FallingRightSideUp
Little did I know that this would be your last picture with Theodore. And the more I stare at it, the more I realize how this final moment with your son perfectly summarized your entire relationship. Theodore always felt safe in his daddy’s arms. And you, Michael Nelson, are the pillar of strength for our family…
When I think of strength, I think of you holding MacKenna over Theodore’s incubator for the first time; thoughtfully explaining every beep, wire, and sticker attached to her brother when I couldn’t even mutter a word through my tears. MacKenna felt safe in your arms.
When I think of strength, I think of you bathing Theodore so delicately every morning; paying close attention to every detail and gently exfoliating his lips and skin with soapy soft gauze because it felt better than CHG wipes. Theodore felt safe in your arms.
When I think of strength, I think of you hugging me goodbye; reluctantly leaving your wife and son in Pittsburgh in order to provide for your family by selflessly caring for Covid19 patients during a pandemic. I felt safe in your arms.
When I think of strength, I think of you learning about your son’s death as you drove alone in the car down the thruway; finally arriving hours later to just hold me while embracing Theodore’s lifeless body. We felt safe in your arms.
You were with Theodore in his very first moments on earth when I couldn’t be there, and I was with Theodore during his very last moments on earth when you couldn’t be there. I knew parenthood involved ‘teamwork’, but never to that extent… Yet, I’m grateful that the unthinkable tragedy our family endured has never torn us from each other’s arms. In fact, MK and I still debate who can snuggle under your armpits first. And although we’d both forfeit our spots in a heartbeat to see Theodore on your lap again, I’m confident that he has the very best babysitter in heaven. Theodore is safe in his ‘Father’s Arms’. However, your boy is just patiently waiting for that one sweet day, where Jesus can pass him back to you; back into his strong daddy’s arms.
Happy Father’s Day- your strength IS the definition of ‘Fatherhood’. We all love you.
-❤️ Alexandria, praying Psalm 46:5 … join me by #FallingRightSideUp 👆🏼 when life gets turned upside down👇🏼
️Here is my favorite ‘brunette Elsa’, who happens to be much better at ‘melting hearts’ than freezing them…
HAPPY 5TH BIRTHDAY, MacKenna!
Mom & Dad could not be more proud to call you our daughter. You became a big sister, and lost your baby brother all in the same year. Your delicate little heart has endured more than we ever hoped it would at age five. Although you like to remind us that you are ‘Queen Elsa’, the truth is, your kind heart is anything but ‘Frozen’. In fact, the events within this past year have only fertilized your heart, and now I sit in awe of the colorful garden you unknowingly possess. Your beautiful heart has learned to seamlessly transition from pure excitement, to true compassion… and then from raw sadness, to hesitant acceptance. You now talk to heaven with greater understanding and more purpose than ever before …
Today, when I watch you blow out the candles on yet another year, I’ll thank God for your 5-year-old-tenderly-warm-more-matured heart. Oh yes, and I’ll secretly wish to be granted some of those special “Elsa powers” to do the impossible and “freeze you at five”. #Freeze
We love you so incredibly much MK, and so does baby brother, ‘Fee-A-Dore’ (more commonly known at home as our ‘Teddy Bird’, the cardinal, nowadays! Psst… can you find him!?)
All 1,248 ounces were fortified with an extremely large dose of love…
When you fortify, you add an element of ‘value’ to something that could benefit from being strengthened. And there’s no doubt that Theodore Nelson was born a ‘fortifier’; his tenacity could invigorate anyone and enhance their lives for the better. He was a gift that allowed me to pump with purpose. I was determined to demonstrate love in the only capacity I knew how; I yearned to be ‘useful’ as his mother, even when I helplessly sat in the corner of his ICU room. After every open heart surgery, it would be weeks on end that I would be forbidden to hold my baby due to his risky recoveries. So instead of holding Theodore to show my love, I was holding my pump. I was determined to preserve every missed opportunity of ‘normal motherly love’ by “pouring” my heart and soul into those bottles.
This beautiful recognition from Catholic Health yesterday couldn’t have been published on better day. You see, exactly one year ago, on June 3rd, 2019, I fully realized my ‘fortifier’ as ‘prayer’. On that day, my son’s diagnosis of ‘HLHS’ instantly sucked the life right out of me; I could barely stand up on my own two feet. It wasn’t until I started to fortify myself with the Word of God that I felt empowered once again.
Everyone’s kindness was so overwhelming last night, but I promise you, I am not even HALF as ‘amazing’ as my fierce Theodore. He single-handedly transformed what I knew as ‘love’ into something much deeper… Pumping milk was simply a privelage for me; an outlet which I’m forever grateful allowed me to “love” my baby from a distance. Please know that I pass along everyone’s gratitude directly to my son; all praise belongs to him. It is Theodore that has taught me true perseverance and it was his unique life with half a heart that will forever be my reason to “fortify with love”. Because of his ‘bad’ diagnosis, I will forever choose to do ‘good’ in his name. (Genesis 50:20).
There’s no doubt this world could benefit from some fortification. And even in the midst of a pandemic, vitamin C is secondary to the extra does of ‘love’ that everyone currently needs. It is the most priceless supplement that mixes well with everything; and better yet, it’s free… In a world that will constantly try to dilute you, find your reason to remain fortified.
(A special thank you to my husband, Michael Nelson, who helped me document and deliver every single ounce of milk… & to Gina Penque from the Women’s Center at Mount Saint Mary’s Hospital in Lewiston, who made the emotional process of donation a beautiful experience for us!
MK insisted on taking her little brother for a drive today. Never in my wildest dreams did I think ‘playtime’ would look like this… but ‘this’ is our reality. And that’s the thing about ‘reality’ – you can’t hide from it. You can either run from reality, or choose to accept it. Although, trying to escape reality is like running from your own shadow. It’s utterly exhausting. You may as well stop, turn around, admire what reality looks like, lather on some SPF, and embrace it!
I could (easily) cry about Theodore not physically sitting in that passenger seat (believe me)… or I could smile at the fact that my daughter had a 7-month opportunity to genuinely know and LOVE her little brother; a love so great that he doesn’t even need to “call shotgun”. 🧸
(By the way- I’m slightly obsessed with silhouettes lately, so stay tuned!)
It has been one month since I’ve held my beautiful baby boy… and within those painful 30 days, besides feeling every single emotion known to man, coupled with periods of complete numbness, I’ve realized this: it’s not about “learning to get over it”, it’s about “learning to live through it”… and for me, that includes honoring Theodore’s memory in a BIG way for the rest of my life…
On the 9th day of every single month, we will celebrate Teddy’s homegoing to heaven. We will do this by giving to those who are “falling right side up”; those that have had their lives turned upside down, yet decide to “fall up” by demonstrating the same ‘strong and courageous’ qualities of our Theodore. It is an honor to give-back in his name! The first leg of our new journey will commence with a long season of paying tribute to my fellow heart-moms across America.
Hi, Heart Mamas! I see you. The first round of our ‘Teddy Bear Care’ is officially in the mail to someone special!
We laid our cherished Theodore Richard Nelson to rest on Tuesday, April 14th, 2020.
This global pandemic has got nothin’ on the ‘Teddy Bear Warrior’ community! I’m still speechless from this complete SURPRISE… & I’m still having a very hard time formulating sentences to express what is in my heart; my heart is simply in overload…
My heart misses Theodore like crazy. My heart loves you all like crazy.
So, in the meantime, I made this slideshow from the footage that was so graciously captured on the day we laid our baby boy to rest. Our 5-mile journey from the church to the cemetery was not completed alone, but instead, lined with tearful family and friends, holding homemade signs and yellow ribbons of hope in honor of our sweet ‘Teddy Bear’. Thank you so very much to every single person who supported us in any capacity over the past seven months. Love truly never fails.
My beautiful Theodore; my precious Teddy Bear, my strong and courageous Warrior, my brave and fierce Baby Boy –
Momma will always love you with every fiber of my being and every ounce of my soul.
If love could have kept you here, it would have kept you here one thousand years… but I’ll give thanks to God because my love for you is eternal…
My own heart will be forever broken on earth, as a piece of it now resides in heaven… but I’ll give thanks to God because my broken heart results in yours being made whole…
And until that one sweet day, when I can embrace you in my arms and caress your angelic face again, I will sing out loud every night before bed; I will sing, looking straight up to the heavens, your original melody that came straight from my heart; a declaration that can NEVER be silenced …
“Theodore, Momma adores you… Theodore, I love and adore you… Theodore, God’s perfect gift for us… Theodore, strong and courageous.”
Today we switch lanes on the hi-way. We’re entering a whole new phase of this journey with Theodore; I just pray that we’re veering into the ‘express lane’ with a straight shot home from here… Although, the next leg of this trip hasn’t yet begun, this Momma is already feeling a little “car sick”. Traveling alongside a cherished ‘passenger’ with CHD never gets easier as the trip carries on; there’s far too many detours and construction zones. It sometimes feels like you’re trapped, driving circles in a roundabout with no way to escape, because there’s simply no cure for this terrible disease. In just a few hours we place Theodore’s life in another man’s hands, and the reconstruction of his tiny little heart will continue… it’s so very hard to believe that the surgeons will be cutting my baby’s chest open for the third time; taking a scalpel to the scar that just took four months to heal.
The hard reality is that by this afternoon, our Teddy Bear will look nothing like he does in this picture. I first looked at this image that Michael snapped and called it ‘perfect’. Besides Teddy’s perfect blonde fuzz glowing in the sunlight, and his perfectly plumped cheeks all rosy from my kisses, this picture had captured what was a perfect weekend…
He smiled. We played. He gazed. We snuggled.
It all went by way too fast…
time. is. fleeting.
And sometimes that’s okay… because if the ‘perfect moments’ don’t last forever, the ‘hard moments’ won’t last forever either…
Lord, I will forever proclaim that You are able to do the impossible! I pray that Theodore will miraculously be headed HOME in record timing after his Glenn Surgery today…
1️⃣ I pray in Jesus Name that all of the amazingly talented surgeons, doctors, nurses, anesthesiologists and medical support staff are healthy and aligned while working on Theodore today; that my baby boy will surpass all of their expectations.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain clear, dry, and expanded; that he will be extubated right away after surgery.
3️⃣ I pray in Jesus Name that they will be able to close Theodore’s chest immediately in the operating room today; that the surgeons can properly bring together both sides of Teddy’s sternum, leaving no protrusions for infection.
4️⃣ I pray in Jesus Name that Teddy will not experience what they call ‘Glenn Head’. I pray that my baby will remain comfortable throughout recovery and with the help of proper medications, not experience the terrible predicted headaches.
5️⃣ I pray in Jesus Name that Theodore will remain and PEACE. Please be with my baby when I cannot; Jesus please keep my Teddy comfortable and not scared.
God, WE THANK YOU for placing us in the best hands; for giving us the best team of medical professionals to care for our son. We trust You and believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
❣️❣️ THANK YOU FOR SHARING AND PRAYING FOR THIS LITTLE BOY WHO MEANS EVERYTHING TO US… SURGERY SHOULD BEGIN AROUND 8:30AM (ET), BUT I WILL KEEP EVERYONE POSTED ON MY SOCIAL MEDIA ACCOUNTS ❣️❣️
Our ‘Mr. Theodorable’ turned 200 days old this past Tuesday and still continues to fight hard for life with every determined breath he takes!
(…not to mention, he makes me smile about 200 times per day, too! )
I have learned a lot in 200 days…
I have learned that one person’s ‘inconvenience’ can be another person’s ‘luxury’… being quarantined at home with our two children for weeks on end would be Michael & I’s dream come true right now.
I have learned that as you go through deep waters, you are washed of old desires and suddenly yearn for what you used to wish-away… my past complaints are the same exact things that I now crave most.
And I have learned that gratitude is a choice; gratitude is built upon a foundation of ‘perspective’, and perspective constantly changes… what I choose to give thanks for today is far different from what I gave thanks for last year, last month, or even yesterday.
And today, after removing some blinders, my current point of view results in gratefulness for Teddy’s 3rd major open heart surgery this coming Tuesday; I am grateful that he is still here, fighting for this precious thing called ‘life’.
” ‘Cause don’t you know there’s part of me that lovvvess to gooo…
into the UNKNOWNNN! “
I’ve obviously been exposed to Elsa songs way too much lately; thanks MacKenna!
🤣 …But in all seriousness, the declared national emergency has brought about a whole new extra set of ‘unknowns’ into our little world of trying to balance an acceptable lifestyle across state lines. We’re keeping ALL the medically fragile children and their parents in our prayers, as the results of this terrible uproar are that much greater for us on every. single. level. May you all find some peace in the chaos…
Today we were just informed that our four caregivers for Theodore had to be dwindled down to two main people. As much as Michael and I would love to quarantine ourselves inside Theodore’s ICU room together until this viral outbreak is over, that is simply not possible. We have a home, we have jobs, we have bills, and most importantly, above all else, we have a DAUGHTER …all 235 miles away from our precious son. Thus far, we’ve managed to keep our heads above water because of Teddy’s Nanni & Grandma; the two additional (& absolutely incredible) caregivers for our son @UPMC Children’s Hospital. The coronavirus pandemic has produced new hospital policies that have completely rocked our boat. When the waters just began to calm, this viral storm came along, tossing us overboard and into the waves. We have most definitely braved other severe storms within this nearly 7 month-long expedition, but we had life jackets. Banning two of Teddy’s current four caregivers from the hospital is like someone taking a needle to our life jackets, releasing all the air supporting our weight; forcing us to tread water on our own now. So what’s the new plan to stay afloat? 🤷🏼♀️ It’s currently unknown. I’ll continue to belt out alongside my daughter:
”I will follow You into the UNKNOWNNN!”
-because the God I follow is the One that has called me into the unknown; He has called me out upon the waters. I will not be afraid because when I feel weak, He is strong (2 Corinthians 12:10); I cannot drown because I have an overqualified lifeguard that can walk on water (Matthew 14:25). We WILL come through this storm and get to the other side, even if it means I doggy paddle with Theodore on my back all the way to the finish-line on shore. In oceans deep, my faith will stand by forever focusing on God’s blessings that still surround us; the little rays of sunshine that always poke through the storm clouds.
The current sunbeam I’m determined to bask in right now is this: amongst all the media hype centered around coronavirus, we’re absolutely shocked to see that PEOPLE, along with a variety of local and national news stations, are continuing to share our little miracle’s first smile… With now millions of viewers combined, we want to say thank you again for all of your prayers and well wishes
It is so much more than ‘just a smile’. In the CHD community, it’s awareness for a deadly disease with no proven causes or cures. In the CHD community, it’s choosing joy in the face of trials. In the CHD community, it’s enjoying some ripened fruits of faith. In the CHD community, it’s rejoicing in hope for the future. In the CHD community, it’s letting love win, knowing that love never surrenders (1 Corinthians 13:8) in the CHD community, it’s highlighting the ‘good’ in a situation that is filled with ‘bad’. We are grateful for smiles.
… because nowadays, amidst all the unknowns, smiles are contagious, too.
Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER-
Lord, I will forever proclaim that You are able to do the impossible! I pray that Theodore will miraculously be headed HOME for the first time, well before the doctors currently anticipate!
1️⃣ I pray in Jesus Name that all of the amazingly talented surgeons, doctors, nurses, and medical support staff at UPMC remain healthy through this coronavirus pandemic… that no sickness will come near those working tireless to help our sweet Teddy Bear. God, your hedge of protection is around all healthcare workers, including Teddy’s own father, Michael, who selflessly works on the front line in Buffalo General Hospital’s ICU in-between caring for his son.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain expanded; that pulmonary edema will no longer be an issue. I pray in faith that Theodore will continue to hold his own off the nasal cannula, and that he can begin to wean off diuretics, all while his chest x-rays show improvement.
3️⃣ I pray in Jesus Name that some way, some how, the hospital is able to allow one extra caregiver to periodically return to Teddy’s ICU room; allowing us as to return to our daughter in Buffalo and not be away from her for weeks on end…
4️⃣ I pray in Jesus Name that Teddy’s swallowing skills will continue to develop, that he will pass his swallowing evaluation with breast milk, and be able to take FOOD BY MOUTH after his third open heart surgery. I pray that Theodore’s stomach will tolerate the volume of his feeds, and that a gastrostomy tube (G-tube) will NOT be needed. In faith I believe that all oral aversions/gagging will completely stop.
5️⃣ I pray in Jesus Name that Theodore will do exceptionally well in his upcoming 3rd Open Heart surgery this month. That all will be precisely executed in Your perfect timing. We pray that the recovery post surgery is 10x easier in every single aspect, compared to the other two open hearts surgeries you’ve carried Teddy through already.
God, WE THANK YOU for placing us in the best hands; for giving us the best team of medical professionals to care for our son. By Your Grace, we’ve gotten to enjoy Teddy’s smiles for 40 days now. We believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), and that you continue to bless him with pleasant days ahead. Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
Our ‘Mr. Theodorable’ is 6 months old and able to turn anything from ordinary to extraordinary‼️ … Working towards traditional developmental milestones with ‘half a heart’ is like climbing Mount Everest against every unfavorable condition that exists. When Theodore first smiled before his six month birthday, we reached the highest peak and claimed victory! I jumped for joy, I cheered out loud, I cried happy tears, and gave a whole lot of thanks to God… all while proudly standing next to our baby on that mountaintop!
Who doesn’t love a good drama? …Perhaps one with a juicy plot twist filled with new characters and unexpected events? …But what happens when the screen goes black and the white block lettering emerges: “to be continued…”? And better yet, how do you feel when it’s YOU staring as the main conflicted character?
I was pouting. Like a 3 year old who got denied dessert before dinner, I threw a tantrum and placed myself in timeout. Wednesdays are plain hard; Wednesdays are always filled with tears. However, this Wednesday and last Wednesday were hard for different reasons. Today I had to kiss my baby goodbye and say “see you next week” for the 23rd time. You’d think I’d be better about containing my tears at this point, but as I tiptoe backwards out of Teddy’s room, my heart starts to beat a little faster and inadvertently turns on a faucet; all I can do is quickly dry the stream of tears flooding my cheeks as I dart towards the elevator, because God knows if I walk too slow, I may change my mind and turn back… However, last Wednesday was different; I opted to stay in Pittsburgh because I desperately wanted more time with my precious boy… I was alone with Theodore for four days while Michael went back to Buffalo for work, and unfortunately during that timeframe I had to process news from the surgical team that was “hard to swallow”. Sometimes the worst place you can be is in your own head. After a few days of isolating myself while dwelling on all sorts of feelings, I was finally ready to emerge from my little “timeout corner” in Teddy’s ICU room… So here comes the commonly practiced and anticipated part following a “timeout”; the part where I talk-it-out and come to terms with what happened, and more importantly a better understanding of my valid emotions…
Theodore had his big cath lab procedure last Tuesday, February 18th. Although the new numbers delivered were more ‘favorable’, they did not meet the exact criteria to immediately move forward with the next surgery (The Glenn). We eagerly awaited the many teams of doctors to weigh-in and come up with a conclusion. Wednesday the 19th arrived, Michael left to go back to Buffalo, and I had some sense of relief by not having to leave Teddy; I was gearing up for a great “mommy & son day”! However, shortly after, the surgeons came to inform me that as a result of further discussion at their conference, they would like to wait an additional 4-6 weeks to see how Theodore develops before proceeding forward with the next step. I somehow managed to plaster a fake grin on my face and utter a polite “okay” with a quivering voice, all while physically biting down on my bottom lip in order to refrain from crying right then and there… Thinking to myself: “No, Alex, not this Wednesday; for once there’s NOT supposed to be tears on THIS Wednesday!” …But it was too late. The group of surgeons exited Teddy’s room, and I stumbled behind Teddy’s bathroom door, abruptly exhaling from that unexpected punch to the gut. It was like a trial by jury, where I felt like we were sentenced to 4-6 more weeks in “jail”. Pittsburgh is far from home; we’re isolated from friends and family and all sense of normalcy. I respect the surgeons, as they most definitely had reasonable cause to recommend a longer wait-time before Theodore’s next surgery. However, that additional ‘4-6 week wait’ recommendation is initially interpreted from a mom’s point of view as:
“that’s another 32-48 more hours of driving in the car”…
“that’s an extra 16-24 days of not being able to see my daughter”…
“that’s 4-6 more times that I have to say goodbye to my baby”…
Nevertheless, all of these unfavorable perceptions of “what waiting means to me” pales in comparison to the main objective: the need to open up my baby’s chest yet again for surgery…
So here I am, stuck at “to be continued…”. I’ve quickly come to realize that I may be the main character, but it’s not MY story … It’s His Story. It’s not an autobiography, as it is God who holds the pen. I do not know how the story ends, but I do know that God is the author and finisher of my faith (Hebrews 12:2), and will eventually conclude each chapter in a way which brings Him glory. Although I pray that this current chapter at Pittsburgh Children’s Hospital comes to an end sooner than we think, I am choosing to believe that every twist and turn God writes into His story is for the best. By God’s grace, I am learning that when the plot thickens and the circumstances don’t make sense, it’s not our job to worry about what comes next; the Author is in control of His story line and the premise is always to prosper and give hope to us as the main character (Jeremiah 29:11). Therefore, as His Story continues, it is my honor to remain casted as His main character. Luckily, God has many stories; matter of fact, He has a story for each of us, which allows everyone an opportunity to be the “star of the show”! Even though at times my impatience has tried to steal the pen right out of God’s hand, He has remained faithful (Deuteronomy 7:9). It has been inside the chapters of waiting that my love for God has deepened. It has been inside the chapters of turmoil that my reliance on God has strengthened. His Story is my well-written biography, where the dreaded segments of “to be continued…” are strategically placed inside certain chapters with the sole purpose of reinforcing complete trust in my God; my Author.
Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER
Lord, I pray that Theodore will miraculously come through and recover from this next open heart surgery in record time …
1️⃣ I pray in Jesus Name that Theodore will not create new collaterals, causing more increased blood flow to his lungs. I pray for his heart and lung pressures to further decrease between now and mid-March, allowing The Glenn surgery to be a complete success.
2️⃣ I pray in Jesus Name that Theodore’s lungs will remain expanded; that pulmonary edema will no longer be an issue. I pray that as Theodore begins to wean off diuretics, that his chest x-rays still continues to show improvement.
3️⃣ I pray in Jesus Name that Theodore has no more fevers and that no new infections will come near his body which would deter his upcoming open heart surgery. I pray that no weapon formed against Theodore will prosper in any way shape or form.
4️⃣ I pray in Jesus Name that Teddy’s swallowing skills will be quickly developed and Teddy will show no signs of future aspirations. That he will pass his swallowing evaluation with breastmilk this week and begin taking FOOD BY MOUTH. I pray that a gastrostomy tube (G-tube) will NOT be needed and for all oral aversions/gagging to completely stop.
5️⃣ I pray in Jesus Name that Theodore will not only tolerate but do exceedingly well with his NJ being converted to an NG for breastmilk drip feeds this coming weekend. By your grace, Teddy will continue to tolerate his full feeds, and his stomach will properly expand to contain the entire volume. I pray that Teddy will not regurgitate any of his feeds, and only enjoy the effects of having a full-belly for the first time ever.
God, WE THANK YOU that Theodore has had a wonderful 5 days in a row. By your grace we have seen him smile and his eyes better fixate on ours. We believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), and that you continue to bless him with pleasant days ahead. I pray that Theodore will fully enjoy his sister’s company again during this upcoming weekend. Thank you for the miracle of our Theodore Nelson. … AMEN & AMEN !
HAPPY FIVE MONTHS, my sweet Teddy Bear. You have overcome more in five months than most people do in a lifetime. When I look at you, I see the ‘fierce’ in your twinkling eyes… I see the ‘determination’ in your pursed lips. I see the ‘courage’ in your healing scars. But most of all, I see love.
Your Nanni said it best today:
“Love has an origin. God remains that origin. And for Theodore, both life and love coexist today … and for that I am grateful.”
Momma Bear, Praying Isaiah 53:5
Well, our baby boy is surely due for some good news soon… Theodore has endured setback after setback. For those that may have missed my previous update, the cath lab doc did not deliver the news we were hoping for last week. However, the coils that were placed in his mammary arteries are currently doing their job by preventing additional blood flow to his lungs. Since the 21st, we are thrilled to see some improvements in Teddy’s daily chest X-rays.
From a surgical standpoint, we’ve been told that his right ventricle pressures are still elevated around 17 (need to be under ‘10’) and his pulmonary pressures are in the 20s (should be around ‘12’). It was a letdown to hear that his pressures are currently too high for the next surgery (The Glenn). While we wait for Theodore to go back to the cath lab for retesting sometime in mid-February, in order to cover all bases, preliminary evaluations with the heart transplant team have already began. It’s easy to become overwhelmed, as learning about the heart transplant process is very daunting; I can most definitely understand why many families opt out.
Finally, throughout these past couple days, right when Theodore’s gallbladder began to improve and his belly became less distended, he then started to have constant fevers and emesis. Come to find out, he contracted an infection within his chest wound. Teddy had to go back to the operating room yet again yesterday… he’s my little champion!
The surgeons performed a wash-out and it of course required some extra meds for him to be “somewhat comfortable”. He now has another wound vac over his chest scar to help with drainage. Teddy’s tests came back indicating a staff infection. This could have been fatal if not addressed with antibiotics. We thank God that the infection is localized and not in his blood. Thankfully, Theodore had a well-earned “peaceful” day today…
~TEDDY BEAR PRAYER~
Lord, I pray that Theodore will be able to start to enjoy some of life’s simple pleasures; that he will now have a stretch of time without more unforeseen traumatic hurdles…
1) I pray in Jesus Name that Theodore will not create new collaterals, causing more increased blood flow to his lungs. I pray for the 2:1 pulmonary to systemic flow ratio in his body to be maintained and that no new collaterals begin to form…
2) I pray in Jesus Name that Theodore’s lungs will remain expanded; and especially the right lung will no longer be deemed “collapsed”. His breaths will remain slow and deep despite any hardships ahead.
3) I pray in Jesus Name that Theodore has no more fevers and that his infection clears up without any further concerns. I pray that my baby boy will rest and not feel the extra discomfort from the wound vac on his chest.
4) I pray in Jesus Name that Teddy’s swallowing skills will be quickly developed and Teddy will show no signs of future aspirations. That he will begin to enjoy taking a binki and that a gastrostomy tube (G-tube) will NOT be needed.
5) I pray in Jesus Name that Theodore’s eye nystagmus will continue to improve until it is completely GONE… We thank You that his MRI results were clear showing no new strokes! I pray that Teddy’s motor skills continue to catch-up to where they should be for his age.
God, not only do we pray that You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), but that you bless him with pleasant days ahead. I pray that Theodore will fully enjoy his sister’s company during her upcoming visit. Their time together as brother and sister is very rare; therefore, I pray it will be extraordinarily beautiful…
Is anyone guilty of being a “backseat driver”? Michael and I are about to depart on trip number 18 down to Pittsburgh; if you are counting “there and back”, that’s actually 36 different 4-hour windows of time where I’ve had the opportunity to be ‘that someone’ who provides unwanted driving advice…
We’ve all commented at some point: “Ahhhh!” -if the driver isn’t pressing the brake quick enough… “It’s a green light!” -if the driver isn’t accelerating the moment the red light disappears… or, “Maybe you should make a left here?” -if the driver isn’t choosing the shortest route… I’m guilty; I’m a “backseat driver” that even likes to tinker with the temperature dial and browse through the radio channels when (I think) the Hubby isn’t looking…
God Bless you, Michael!
One of the toughest parts of this painful journey is the lack of control. The loss of control over many areas of Theodore’s life is absolutely tormenting. Most of the time it feels like we’re playing a barbarous game inside of a real-life horror story: “cut your son’s chest open, then sew it back up… and… cut your son’s chest open, then sew it back up… to only… cut your son’s chest back open all over again!”. It’s a mother’s instinct to control everything they possibly can within their child’s life in order to promote the most favorable environment for growth and development. Therefore, allowing machines and strangers to completely take over what I am naturally wired to do is not only painful, but it’s simply not normal. It’s like constantly walking against a heavy current; life in the pediatric CICU is utterly exhausting because it opposes every single sense of control; each day I push forward simply trying to avoid being swept away by an undertow.
Naturally speaking, Theodore has backslidden quite a bit this past week. His ‘lung disease’ is considered to be just as monumental of a problem as his “half a heart”. Both the CAT scan and echocardiogram that Theodore had done on Wednesday revealed numerous issues such as his liver being enlarged, his gallbladder being filled with sludge, his right lung being slightly collapsed, and diminished squeezing from his right ventricle. Due to these newfound ‘problems’, Teddy is back on the full-face CPAP mask, and his breast milk feed has been turned back off (again)… In this setback, I’m reminded that “I am the Passenger”…
Just like I trust Michael to safely transport us during the road trips between Pittsburgh and Buffalo, when I am anxious and afraid on this journey, I need to put my full trust in God (Psalm 56:3). Michael may be the operator of our physical car, but it is God who is the ‘driver’ of this entire journey. How blessed are we that unlike Uber, God does not even charge us to sit in His passenger seat; we don’t need to use an app on our phone to show Him our location for pick-up. To hitch a ride, I can simply call upon God’s name; He is always with me and I cannot be shaken if He is right beside me in the driver’s seat (Psalm 16:8). Theodore has given me such a precious gift; he has given me an opportunity to trust in God like I never have before… It’s easy to hop in the car for a road trip when you know the destination and how long it takes to arrive. However, Theodore has helped me realize that I will never have an exact location to plug into the GPS; he has shown me the importance of truly “letting go” and “letting God”… so much, that I can turn on the heated seat and cozy-up for a nap while God maintains a steady wheel. And even when my own heart rate spikes, where I become dizzy with anxiety from watching Theodore desaturate on the hospital monitor, I am abruptly reminded that I am not the driver; that I’m only “along for the ride”. I’ve realized the most beautiful part is that no matter where the rugged road leads, God is not a taxi driver that drops you off and leaves you stranded; He never leaves you alone at the destination; He remains; He stays closer than a brother; He never forsakes you (Hebrews 13:5).
And whether God is driving me through a scenic landscape or a torrential rainstorm where I can hardly see past the whipping windshield wipers, He is still my God; my Driver, who no matter what the conditions may be, takes one hand off the wheel, reaches over the armrest, and takes hold of my hand. His promise of “do not fear, I will help you” (Isaiah 41:13) is like stumbling across your favorite song while scanning the radio channels. So even on the hardest days, where all sense of ‘control’ is gone, I will jump in God’s passenger seat; I will trust my Driver; I will buckle up and enjoy the ride.
Momma Bear, Praying Isaiah 53:5
MY TEDDY BEAR PRAYER
Lord, I pray that Theodore only continues to progress instead of regress. I pray that he continues to shock all the doctors by overcoming these next major hurdles in his path:
1) I pray that In Jesus Name Theodore will do amazing during his big CATH LAB procedure coming up this Tuesday, January 21st. I pray that Teddy’s right ventricle pressures will drastically improve; that next time they are checked, the Doctors will find the pressure to be under 10 mmHg. His right ventricle is NOT getting tired and only getting stronger every single day. I pray that God’s will be done when it comes to the next heart surgery (The Glenn) or the heart transplant team getting involved, because I believe that Teddy’s heart is being made new with every beat.
2) I pray in Jesus Name that Theodore will NOT need a tracheostomy; that his lung disease will be completely healed and he will maintain slow, steady, and deep breathing. Theodore’s lungs will expand; and especially the right lung will no longer be deemed “collapsed”. You are able, Jesus…
3) I pray in Jesus Name that Theodore is able to effectively wean off of sedation medication, milrinone, and EPI… You will fill that gap, Lord; You can comfort Theodore and be his bridge to sustaining life without extensive medication.
4) I pray in Jesus Name that Theodore will be able to eventually EAT BY MOUTH. His swallowing skills will be quickly developed and Teddy will show no signs of aspiration. A gastrostomy tube (G-tube) will not be needed and Teddy will enjoy Mommy’s milk with a bottle; and eventually FOOD at the table at home with his sister!
5) I pray in Jesus Name that Theodore will maintain all his cognitive abilities. His eye nystagmus will continue to improve until it is completely GONE! His MRI next week will show that his brain is free and clear of any new strokes. No clots will be formed from his next cath lab procedure on Tuesday the 21st; NO weapon formed against Theodore Nelson will prosper.
My baby will LIVE and not die; Theodore will declare the works or the Lord. I will forever proclaim that it is already finished; God, You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). Miracles are easy for my son’s creator and I know that you, God, are able to bring Theodore home with his own whole heart in Jesus Name.
This holiday season has been exceptionally hard. The normal stress that is induced by trying to purchase perfect gifts for practically every person you know, chasing down local Santas for one quick picture, and decorating the house just enough to foster a ‘magical environment’ for your child was exponentially multiplied by more serious factors that paid no attention to the short timeline of ‘Christmas’. Theodore’s medication changes to counteract newfound delirium, the threat of re-intubation for a few days, and a surprise visit to the operating room are just some of the items that immediately jumped to the top of my “holiday to-do list”; items that took immediate precedence and easily put a damper on any lingering ‘holiday cheer’…
BUT throughout these past couple weeks of December, I randomly kept coming back to the classic Christmas tune:
“AWAY IN A MANGER, NO CRIB FOR A BED…”
If you stop to think, you’ll realize that the underlying cause to the majority of our stress comes from wanting to GIVE the very best to the people you love most; and in my case, that is MacKenna and Theodore. But what happens when you’re unable to GIVE your loved ones what you want ? I can’t help but think that Mary, as a new mother, wanted to give much better to her newborn son, Jesus. Mary was forced to lay Him in a smelly dirty feeding trough; she was unable to give her baby what she wanted because “there was no place for them in the inn” (Luke 2:7). She didn’t have a choice. She did her best. She simply loved Him.
Just as there is no way to glamorize the first bed for the Son of God into anything other than a feeding trough that held scraps for slobbering animals, Theodore’s ‘nursery’ for the past four months has been less than ideal according to the standard of motherhood nowadays. I’ve done my best with the circumstances at hand by trading hospital blankets for jersey knit swaddle sets and bringing touches of home to decorate the plain white sterile ICU room, but my mother’s heart still wants to give him more; give him better. It’s intertwined within a mother’s DNA to constantly want to give the best to her children; to sometimes want to give what is not even possible. I can just picture Mary placing her pregnant swollen hand on the inside of her garment and using it as a rag to clean all visible leftover debris out of the manger; without a doubt I can see Mary trembling from exhaustion on her hands and knees, searching for the most premium lumps of ‘hay’ that had not already been soiled or half-chewed in order to provide a “bed” with as much “padding” as possible. I think about how much her mother’s heart must have ached wanting to do ‘better’ for her son …she could not even give Jesus the most basic essential: …“no crib for a bed”. Yet Theodore, even though I yearn for him to have so much better right now, has a crib for a bed… Teddy was still laid in a crib, far more superior to what his Savior, Jesus Christ, ever received as a newborn; not because my son deserved it but because God’s Grace abounds (2 Corinthians 9:8).
So, what happens when you’re unable to GIVE your loved ones what you want ? You don’t. It’s not about YOU and what YOU want to give, it’s about them and what they NEED to receive; and the greatest need is always ‘love’. I’m no ‘Mary, Mother of Jesus’, but I am learning that when the circumstances are out of my hands and the luxury of ‘choice’ is gone, I will simply do my best and give my love.
-️ Momma Bear, Praying Isaiah 53:5
~ TEDDY BEAR PRAYER ~
Dear God –
We praise You; we praise You God that even through it all, Theodore has “a crib for a bed”! Although I want to give Theodore so much more at this point in time, please continue to give me the patience and perspective I need in order to see that there is much more to this hard journey than my natural eyes can see right now. Please comfort my mother’s heart to know that “my best” is good enough.
Thank you, God. Thank you from the bottom of my heart for ALL of the people in our lives who have adopted a “mother’s heart” for our baby Theodore and our entire family! You have angels on this earth who have taken some of the burden from us, and we are eternally grateful for them! Thank you for every last person who has given donations towards the #TeamTeddy830 project that was initiated by two of the busiest and most selfless mothers I know. I pray that not only Danielle & Bethany be richly blessed for their generous hearts, but that every last person who has supported this project sees an increase in their own lives! Thank you God for your overwhelming love that has been shown through every single person who cooks us meals, helps watch MacKenna, (anonymously) blesses us with donations, and surprises us with care packages that support us on this journey. I especially thank you God for every last person who agrees with me in prayer; for those that pray on my behalf when I no longer can find the words to pray myself; for those who spend hours interceding for the finite daily details that lead to Theodore’s overall success! Thank you for allowing the perfect people to cross my path before and during this process; You know God, that every person who has taken the time to give me a kind word of encouragement has helped bring me through one more hard day at a time… Thank you that my 4-year old is such a good sport, so healthy, and so compassionate towards her baby brother. I’m eternally grateful for the family and husband you have given me; they are my stronghold that I love dearly.
Lord, I pray that Theodore continues to make his “slow and steady progress”. I pray that he continues to shock all the doctors by overcoming these next hurdles in his path:
In Jesus Name Theodore will begin to use his pacifier properly. He will activate and develop every muscle in his mouth in preparation for bottle feeding one day! Nothing will stand in his way because Your will is to see him eat by mouth. We pray against the need for a G-tube and believe that all of Theodore’s nutrients will be properly absorbed within his digestive track. When the hospital begins his breastmilk drip feed on January 1st, Theodore will only thrive and chylothorax will continue to be nonexistent! Theodore will not have any aversions to my milk, and sooner than later my milk will be enjoyed in his stomach, and not only his intestines. Thank you that Teddy will advance to “full feeds” much sooner than we think!
In Jesus Name Theodore’s MRI scheduled for this Tuesday will show no signs of new strokes. I pray that his brain is functioning as it should and specifically that the occipital lobe is in perfect condition and that Teddy will enjoy 20/20 vision in his future. Nothing is impossible for you, God! The nystagmus that Theodore currently endures will be GONE in Jesus Name; your timing is perfect and we trust YOU. I declare that all the muscles around Theodore’s eyes will become stronger, and pray that any past neurological problem that may have caused the nystagmus in the first place will be 100% healed!
In Jesus Name Theodore’s right ventricle pressures will drastically improve. Next time they are checked, the Doctors will find the pressure to be under 10 mmHg. His right ventricle is NOT getting tired and only getting stronger every single day. The heart transplant team will not even have to evaluate Teddy because his heart is being made new with every beat.
I will forever proclaim that it is already finished; God, You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17). My son will be coming home with his own whole heart in Jesus Name ️
Who doesn’t love leftovers? Some would even argue that the best part of Thanksgiving is the leftovers… Everyone looks forward to them; they lighten the burden of future meal preparation and can instantly turn lunch hour into “happy hour” at work! Nothing beats the convenience of tossing a previously well-cooked meal into the microwave for a few minutes in order to indulge all over again; pair that with the comfort of eating in cozy pajamas on your own couch, and somehow the food tastes that much more delicious…
Thanksgiving was hard this year. ‘Family’ always tops the list of what we’re most thankful for, yet our family has been physically separated for months now; we so desperately wanted to be a family of four around the same thanksgiving table. I was missing my baby boy so much; my heart was throbbing with pain, like a beating drum that becomes deafening over time. It wasn’t until I made a conscious effort to silence my pounding headache, that I realized that once the twenty-four hour man-made holiday is over, the most important part is the ‘leftovers’ that remain. I woke up the next morning, with not only a fridge full of packaged turkey, corn, and mashed potatoes, but also with a wonderful husband, daughter, and son. Despite whatever trials the current day may bring, my children will forever be my cherished “leftovers” that I carry into each new day . Although they are temporarily “stored” in different locations, I will be joyful in hope, patient in affliction, and faithful in prayer until the day I can enjoy both Theodore and MacKenna simultaneously at home (Romans 12:12).
The luxury of leftovers is the byproduct of someone’s sacrifice. Our thanksgiving feast did not come without hours of labor prior to taking a seat at the table. Just as we’ve been able to enjoy turkey for days thanks to my mother’s sacrifice in the kitchen, we’ve had invaluable time with our son thanks to the medical professionals who sacrifice their holidays while working in his Pittsburgh CICU. As parents, we have sacrificed every little bit of normalcy in order to fight for our son; we’ve altered our entire lifestyle with the hopes of the ultimate ‘leftover results’ being favorable. However, just like the little portions of food that remain scattered on a plate after dinner, there’s little “leftovers” throughout every day of this challenging journey; the ‘small scraps’ of even the toughest days at the hospital actually hold hidden treasures, God-given secret riches that are stored in the darkness (Isaiah 45:3).
Theodore turned 3 months old yesterday and in that short time span I have developed newfound patience while witnessing so many scary obstacles that my little man has courageously and miraculously overcome. I am in awe of how far God has already brought him. If you take a mom, dad, and “big sister”, then add in a critically ill “baby brother”, and finally subtract a familiar home environment… the most important element of life is ‘leftover’: a finite focus on how to give ‘love’ and receive ‘love’ in all of it’s different forms. I’ve learned that giving love does not always mean wrapping your arms around someone with a hug, but it can also look like firm pats on the shoulder after a breathing treatment, adjusting wires and gel pillows to prevent bedsores, or making sure wrist braces are properly secured every hour… I’ve learned that receiving love is not always puckering-up and waiting for a kiss, but it can also look like humbly accepting a donated meal, pondering on kind words of encouragement, or reluctantly allowing a volunteer to snuggle and comfort your new baby while you’re hundreds of miles away at home.
Nevertheless, any sort of “leftovers” cannot be enjoyed unless they are properly preserved. Just as the turkey will spoil if not refrigerated, and the pie will harden if not properly covered- my family, my most valuable “leftovers” at the end of every day, must remain “wrapped” in the promises of God (John 15:7). And even with all the unknowns that are still ahead, right now, in this moment that I own, I will preserve my “leftover memories” of MacKenna and Theodore from the past 3 months, within the highest most guarded “cupboard” of my heart…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER :
(1) Mr. Theodore has had quite an eventful week. He was extubated last Monday and endured a couple days of unnecessary aggravation in regards to being properly fitted with a respiratory support head piece. At this point, we are asking everyone to pray that Theodore can quickly progress to and remain stable on the high-flow nasal cannula. Praying that ‘sprints’ for this can start to take place tomorrow !
(2) **URGENT** -Teddy also has what is called a ‘Blake drain’ coming out of the bottom of the incision on his chest; please stand in agreement with us that the drainage from this drain promptly trends down to “zero”, IMMEDIATELY… His output from this Blake drain is still too high; and we are heavily praying against the need for other drains (pigtails) to be inserted into his sides. The plan is to clamp the Blake drain by midnight (tonight!)… and if enough fluid continues to accumulate inside his body, they will NEED to put two NEW pigtail drains in on either side of his rib cage… we REALLLLY don’t want to see him going to the IR tomorrow to get two new holes in his precious little chest! Two new tubes and sutures would be placed by the left and right rib cage; this would require even further sedation, and it’s very painful… –> PRAY that no fluid accumulates in his chest once the Blake drain is clamped tonight and taken out tomorrow morning.
(3) Before we left to head back to Buffalo last Wednesday, we found out from an ordered echo-cardiogram that Theodore has a very large clot at the end of his picc line (by his right atrium). He needs extra prayers for that clot to completely dissolves in Jesus Name. The clot has the potential to dislodge, travel through the heart, and up to his brain, causing yet another stroke. He is on medication that should help this clot dissolve; but I know God is able to work it all our behind the scenes.
(4) Please continue to believe with us that Teddy retains all his cognitive abilities despite excessive medication, sedation and procedures. We pray against any infirmities to all of his five senses. We also ask in Jesus Name that Theodore can finally begin a breast milk drip feed, because for three months he has had nothing but TPN and lipids. (Momma is quite literally running out of freezer space now!)
(5) Lastly, and unfortunately, we also got a call on Thanksgiving that Theodore’s blood cultures came back positive; meaning that he has an infection in his blood. This could have been lethal if not immediately treated. I am THANKING GOD for lining up the perfect attending doctor last week that went the extra mile to check everything possible; because of this wonderful doctor, our son started his antibiotic treatments before becoming septic. I know God has lined-up the best medical professionals to step-in at the most perfect timing; because God is never late, but always on time. Please continue thank God for His grace and mercy in our lives; every ounce of Theodore’s blood will become clean and free of infection because God holds him in the palm of His hand. I will forever proclaim (& I hope you do, too) that it is already finished, and my son will be coming home; whole and new…
Do you know how much I love this precious little child of God? I have been smoochin’ his precious little cheeks through many scary transitions over the past five days. I could not be more proud of my Theodore and how far he has come thanks to his incredibly strong will to fight! He has conquered ‘The Norwood’; one of the most complicated and risky surgeries associated with ‘Hypoplastic Left Heart Syndrome’ (HLHS). From a 6-hour open heart surgery on Wednesday, to a 3-hour cath lab procedure on Thursday, and then finally another 2-hour trip to the operating room on Friday, Teddy defies all the odds and continues to impress everyone in the unit. The one consistent comment that has been made by countless medical professionals is: “look at his size; he has been growing so big!“. I’ve recently learned that I took his ‘growth’ for granted. Many ‘CHD babies’, especially those who have extreme complications such as ‘HLHS’, experience delayed growth after birth. We are blessed beyond belief to continue to watch Theodore grow.
This journey was chosen out of love; and no matter how many twists, turns, peaks, valleys, and roadblocks come about, we will finish this course with love. And just like Theodore- love grows. It’s a type of ‘newfound love’ that has become the harvest of an unique cultivation season; a nine month period of time where ‘growth’ was successful despite many unfavorable conditions. Unlike a diminished crop yield from unforeseen amounts of scorching sun and frost bitten nights, Teddy thrived in the face of his lethal diagnosis. Theodore was the seed implanted in my womb, and just as you sow a little seed into the ground, he grew much bigger with time…. A farmer will not gather his crop until it is perfectly ripe, and the turnover from one season to another needs to take place at just the right time. August 30th came, and my harvest season finally began!
The harvest is the period of time where you ‘reap what you sow’. Contrary to the quick perception of it being the most enjoyable season, I’m quickly leaning that it actually requires the most work. My harvest is beautiful, yet it came with complications that I have to combat on a daily basis. Although I call ‘HLHS’ a problem, God calls it a harvest. You see, if we learn to reap properly, our problems will become a bountiful harvest. Corn is harvested with a big combine machine, yet tomatoes are delicately picked by hand to avoid bruising; the timing and condition for each type of harvest will be very different; some more labor intensive than others. My current harvest season with Theodore is much more demanding than it was with MacKenna, yet both seasons produced equally sweet fruit; beautiful blessings that are mine forever (Psalm 128:2). So despite these unwarranted hardships, I will roll up my sleeves and get to work; I will reap before it rots; I will not let my blessings waste away. In the midst of all the tubes, wires, and stickers attached to my baby, I can either choose to harvest anger, or I can choose to harvest gratitude. I WILL conquer this season by reaping ‘closer relationships’ with family; by reaping ‘unspeakable joy’ through the daily miracles of Teddy beating the odds stacked against him; and by reaping a brand new definition of what love really means…
“Love Never Fails”; it’s the mission of our church; the foundation of our family; a statement that has been ingrained in my heart for as long as I can remember… Theodore’s “half a heart” has made my own heart “whole” in so many ways; my baby boy has transformed who I am. He has given my world more meaning and purpose than ever before, and I will be eternally grateful for the miracle of his life on this earth. We are fighting from a place of LOVE (1 Corinthians 16:14). And love wins; every time. Theodore has taught me that life does not have to be perfect to be beautiful. I’m not waiting for a profound moment to “feel blessed”; to “have joy”; or to “give back”; I’ll be sowing prayers for others, and not just for my son (Luke 6:38) …I refuse to wait when my harvest is sitting right in front of me, ready to be gathered. It’s hard work, but sometimes blessings are heavy to carry. And as the nurses continue to find any excuse to enter Teddy’s room and marvel at his exponential growth, I can only smile and think that the best fertilizer for ‘growth’ is always ‘love’. #LoveGrows #LoveNeverFails
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
I pray that God would continue to shift my heart, to not only focus on my own needs, but to recognize the similar needs that surround us every day, in every single CICU bed at Pittsburgh Children’s Hospital; and to even better realize other people’s needs all around me when I am home in Buffalo, NY. I pray for the ability to thank God through all the hardships; to continually look on the bright side of things and not live in fear of the future.
Please keep our ‘Teddy Bear’ in your prayers as he goes back to the operating room this morning for his chest closure. Jesus, please guide the hands of the surgeons and operating staff once again; please comfort my baby while I am not there. In Jesus Name, Teddy will not feel the pain and confusion associated with removing the paralytic medications and the slow weaning of other pain management. Please pray that Theodore’s lungs continue to heal and become stronger every day, allowing him to come off the ventilator much sooner than anticipated. I believe God is able to not only strengthen my baby’s right ventricle and bring the pressures back down to ‘8’, but God can mend his entire heart and make it whole again. And as always, I pray that Theodore will continue to defy all odds against him because our God has never lost a battle yet… AMEN & AMEN!
Twas’ the night before surgery… when all through Mom’s mind, many thoughts were stirring, none two of a kind…
Sometimes it feels like I am drowning in my own thoughts; so many thoughts, like millions of water droplets compiling together, creating one big raging sea. In the midst of negative speculations and unfavorable odds, I begin to gasp for breath while thrashing against the waves. It’s like constantly treading water, it simply becomes overwhelming and exhausting to filter through all the “what if’s” that tomorrow could hold. It is ONLY when I lift my eyes up and look to the heavens (Isaiah 40:26), that I begin to peacefully float on top of the water; my vast sea of “thoughts” all of a sudden become manageable once I settle down, remain still, and remember that God is in control (Psalm 46:10). It is amazing how we can instantly become buoyant once we point our chin up to the sky; once we handle ourselves correctly, we can go from uncontrolled sinking, to quickly rising above the surface. Just like the water, our thoughts can act as a ‘support’ instead of a ‘hindrance’ if we choose to actively filter out the negativity. This journey has been filled with countless mind-boggling predictions of struggles that our son’s future could hold… but I have to diligently train myself to only focus on the present…
AND – at the present moment, it’s midnight; it’s officially “surgery day” – so I am sitting here staring at my son, memorizing every little feature of my precious baby boy because by tomorrow afternoon, the doctors predict that many of those beautiful details will be altered. Over the past two days they have given us quite a few warnings. They warned us that they would be cutting open the scar on his chest that just took two months to properly heal. They warned us that he would have chest tubes restitched into his belly for drainage purposes. They warned us that due to excessive swelling with surgery that his sternum would remain open for a couple days upon exiting the operating room. They warned us that 2 out of every 10 babies die right on the table… And despite these warnings, at just two months old, my Theodore will be enduring his second open heart surgery.
We have been told countless times that this is an EXTREMELY risky surgery, but at this point, Theodore cannot remain stable much longer without an intervention. We are grateful that his head surgeon, Dr. Morell, feels comfortable to take such a chance with this next step. This surgery is not straightforward whatsoever – it requires multiple steps that encompass a total reconstruction of his heart. The Norwood converts the right ventricle into the main ventricle, pumping blood to both the lungs and the body. After they remove Teddy’s ‘PDA bands’ and his PDA altogether, they will connect the main pulmonary artery and the aorta. The main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead, a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs. Theodore’s entire aortic arch will become wider in order to accommodate better “blood flow”….In Jesus Name, Theodore will “make history” in this hospital and be the first ‘HLHS baby’ with an intact atrial septum to make it through a Norwood open heart surgery.
Whenever my mind says: “let go & give up”, my heart says: “hold on & press forward”… My blood pressure is high. My nerves are high. My emotions are high. My adrenaline is high. My excitement is high. My anticipation is high. My hopes are high… but most of all, MY. FAITH. IS. HIGH. I have Faith that we are right where we’re supposed to be, so in return, my expectations are also high. I am expecting this extremely HIGH RISK surgery to reveal an extremely GREAT REWARD… I am expecting that just when I THINK my thought-life is on track, the God of the impossible will surprise us with the UNTHINKABLE! #GodsGotThis
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
My precious Theodore will be rolled down to the operating room by 8:00AM today, November 13th, 2019. Please pass along our request for prayer to all your family & friends who will pray for our son during this long operation. We greatly appreciate every single prayer sent up to heaven for a miraculous outcome! We were told that the surgery could last up to 6 hours. Thank you for praising God in advance with us for all He has done and is about to do in the operation room. We give thanks to God that he holds our son in the palm of His hand. We give thanks to God that he will be guiding every medical professional that crosses Theodore’s path. We give thanks to God that Teddy will have an overwhelming sense of peace and security while away from his Daddy & I… We give thanks to God for Isaiah 53:5 because God’s Word is TRUE and will never return void. We give thanks to God because He is always GOOD and loves our ‘Teddy Bear’ even more than we do … Theodore Richard Nelson will live and not die; he will declare the works of the Lord.
If I’ve learned anything through this journey, it’s the fragility of life. These pictures are only a week old, yet our current situation depicts nothing close to the care-free playfulness of silly unicorns and an adorable rainbow… But anyone who knows our daughter MacKenna, knows very well that ‘unicorns’ are her current obsession. And anyone who is a parent knows very well the importance of protecting your child by making the best of unfortunate situations. So, that’s what’s we do. Michael and I reluctantly dressed up as unicorns for Halloween to appease our 4-year-old; its such a fun holiday for a little girl to innocently “play make believe”, and for one day of the year, she has the perfect excuse to demand that everyone around her “play along”, too. Accordingly, before taking this picture, MacKenna easily convinced Daddy to chase her in circles around the couch; it was a game she titled: “unicorn tag”. Michael threw his pretend “hoofs” in the air, uttering a loud unicorn “neeigh!”; he began to dart towards the little pink-winged creature that had already pranced to the other side of our family room. I couldn’t contain my belly-laughs as the two unicorns gained speed, making sharp turns around our coffee table. However, they quickly petered-out and it all ended with two white piles of fluff giggling on the floor. While at home, I sometimes get lost in happy moments like this; sometimes even for a good 10-15 minutes, before my heart suddenly drops to my stomach, giving no warning at all; my heart constantly reminds me that a piece of it is missing.
Just as we all dressed up as unicorns to appease our daughter, we constantly ‘mask’ our emotions. In order to keep our jobs, maintain our household, and continue to properly raise our first-born child, Michael and I have been “playing pretend” since June 3rd, and let me tell you… it’s an exhausting game to play. Everything is not always as it seems because behind those two adult unicorn suits are distressed parents, who cringe every time the phone rings. Everything is not always as it seems because under that sparkly pink unicorn horn is a “big sister” who constantly asks when her “baby brother” can come home so she can help feed him. Everything is not always as it seems because that rainbow blanket, tucked under those edible newborn cheeks, covers a long red chest scar from open heart surgery, pink raised neck markings where a blood clot formed from ECMO support, blue bruising due to missed IV attempts, and a PICC line that was freshly stitched into a sweet chubby thigh. Everything is not always as it seems, but putting a fake smile on your face is more conducive to providing a sense of normalcy in a situation that is anything but normal.
Last Thursday, we were a bunch of ‘crazy unicorns’ at home, just “waiting for our rainbow”… and that same day, the phone rang. We found out that “our rainbow”, 237 miles from home, ended up destatting. Theodore’s heart-rate quickly dropped, and he needed an emergency intubation to survive. He went from having a practically empty IV pole next to his crib, to the pole being fully stocked once again with new meds. It’s extremely disheartening to see your child take so many steps backwards in “recovery”. And here we are a week later; also another ‘extubation’ and ‘re-intubation’ later… Theodore’s perfusion is becoming an issue as he continues to grow; his single ventricle heart is having a hard time keeping up with demand. In the doctor’s eyes, Theodore is more or less at a current “stand-still”; they are finding new ‘problems’ almost everyday, including strokes and a more recent blood clot in his left leg. We were informed to take some extra time off of work this upcoming week in order to stay longer in Pittsburgh for ‘Care Conferences’ amongst multiple teams of health care professionals regarding the next step for our son. The brutal truth is we are now at a turning point in this journey where very hard decisions will have to be made… I’m not(!) scared, in Jesus Name… But I am requesting your extra prayers. And yes. I am still begging God for a miracle…
Most of all, every day, between every prayer, I will still hold out, waiting on my rainbow… And the best part is, with Theodore as our rainbow, we don’t have to wait until the storm is over to see his beauty. At just two months old, Theodore continues to teach me so very much. My little rainbow teaches me that we don’t have to wait for the storm to pass; that we need to find joy in-between all the clashes of thunder. And my handsome ‘Teddy Bear’ demonstrates that when lightning seems to viciously strike in the same place twice, you can use its explosive energy to bounce back in order to beat the odds. Theodore is my rainbow from God; my perfect gift; my promise after rain; his face brings me absolute pure joy in the midst of sadness. Even despite my moments of doubt, deep down, I believe with all my heart that the greater this storm is, the brighter my little rainbow will shine; my baby boy will overcome this battle and shine through the darkest clouds, revealing God’s Glory because His name is above ‘HLHS’. A rainbow symbolizes hope for better days because God is always faithful, keeping His covenant of love for a thousand generations (Deuteronomy 7:9) …And when some dark clouds roll in again, if my emotions do get the best of me, I already know how to “play pretend”; I’ll still wipe the tears away and even re-apply the layer of mascara through the rain. I’ll keep my head held high because my help comes from above (Psalm 121:2)… and the truth is, I’ll never see my rainbow if I’m looking down anyway…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
This is a “all hands on deck” type of week when it comes to praying … today is the first day of A BIG WEEK for our family. Tomorrow, Monday morning will become even more intense. This is a week where many pivotal decisions will be taking place amongst both the medical staff and us, as Teddy’s parents. We need God’s favor on all counts; through every meeting; through every moment in Teddy’s CICU room.
Please pray that even when things are not going as we have hoped for, that we still have faith to cling to God anyway.
Please pray that all the surgeons and CT surgery staff, including Dr. Morell, become aligned on the very best plan for Teddy. A plan that will not cut his years short, but a plan that will bring him home to us in Buffalo. A plan executed out of a special place of compassion for our son and his family.
Please pray that my precious baby boy, Theodore, remains calm, stable, and at PEACE; not experiencing any unnecessary measures of pain. And even if a time comes where ‘pain’ would be inevitable, I pray with all my heart that Jesus holds my baby when I can’t; that Jesus would become a barrier and protect my Teddy Bear from any future discomfort during upcoming procedures.
Please pray that the big blood clot in Teddy’s leg miraculously disintegrates; pray that no other random blood clots continue to form, jeopardizing Teddy’s brain function due to them causing strokes. Hematology will get to the root of the problem and/or figure out the perfect balance of anticoagulants in Jesus Name. Teddy will regain better pulses in his left foot/ankle.
Please pray for Theodore’s right ventricle. It will regain strength. The pressures will begin to improve, coming back to the numbers of ‘7’ or ‘8’.
Please pray for Teddy’s lungs and the fluid they found surrounding the lungs. Pray the fluid diminishes on its own without the need for more chest tubes to be placed.
Please pray that God is simply waiting past our point of ‘expectation’ to reveal His Glory.
Above all else, I’m praying with everything in me that my baby boys heart miraculously becomes WHOLE, that his left ventricle miraculously APPEARS, that this nightmare of ‘HLHS’ would go away forever… that we will have many many years still to come with Teddy on this side of heaven… AMEN, AMEN & AMEN !
Yesterday marked 14 years together; 7 of which we’ve been married! October 28th has always held a special place in my heart because it was the day where it all began. Our wedding anniversary on July 28th would not exist if we didn’t take the chance on each other 14 years ago on October 28th! So in my book, October 28th wins; it’s symbolic of our initial ‘leap of faith’. We were two young kids who barely knew each other, yet took a leap of faith into the ‘unknown’ because we saw the potential for something good.
Can you think back to the first time you held hands with your “other half”? I instantly grin when I reminisce about about the first couple times Michael grabbed my hand. It was a slow process. We’d be at the movie theater and more times than not, I could not even tell you the movie title because I was so enthralled with the movement of Michael’s hand towards mine. I sit here now and laugh at what a big deal “hand-holding” was for us back then… By the time the previews ended, Michael was already more than half way across my arm rest; his shoulder slightly grazing mine. Out of the corner of my eye, I’d watch his hand slowly creep towards my hand, pretending not to notice the little advances he’d make when the movie was full of action. Of course I’d prop my hand in the most optimal “available position”; I’d sit there and patiently wait, craving his hand to move faster… It’s the anticipation that intensifies the enjoyment. The sides of our pinky fingers would actually touch for a few minutes before we both gave in; pretending to readjust in our seats and then casually knock our hands together. At that moment, somehow our fingers would magically intertwine; our hands finally falling still in contentment, but my blood rushing faster than ever through my veins. It’s always a “good sign” if a person touches your hand and it immediately wakes up all the butterflies in your stomach…
Just like the gradual process of “first-time hand-holding”, we are on a slow and steady journey with our son. Of course 14 years ago, I would have never thought we’d now be holding hands in a children’s hospital 4 hours away from home… but just like we did back on October 28th, 2005, we took a leap of faith into the ‘unknown’ with Theodore because we saw the potential for something good. Although holding Michael’s hand back in the movie theater years ago flew me to cloud nine, nothing compares to the comfort from holding his hand through the fight for our son’s life. I am beyond thankful that God has strengthened our grip during this storm. Even through the torrential rain and hurricane winds, our fingers have remained laced together; God being the “double-knot” that keeps us from coming undone. Today, I can still rest easy knowing that Michael will always hold my hand, and that God will always hold our future. He has not failed us yet.
“You and me together, we can do anything” …while hand-in-hand.
-️ Momma Bear, Praying Isaiah 53:5
MY TEDDY BEAR PRAYER:
Please continue to pray with us for Theodore’s overall slow and steady progress. He had his oxygen levels slightly increased today due to come chest retractions overnight. His white blood cell count has been trending lower over the past couple days, so we’re believing God to protect him against ALL infections and viruses. Isaiah 54:17 – no weapon formed against Theodore Richard Nelson will prosper in Jesus Name. My “Momma Heart” ultimately prays that Theodore will eventually feel just as comfy, snugly, and safe as he did inside of my stomach in this picture. A newborn’s system already has to make drastic adjustments right after birth so the many added obstacles my ‘Teddy Bear’ has been forced to endure is just unthinkable. I could not be more proud to be his Mother and will pray for his miracle every single day without ceasing. Thank you for joining with me in prayer; praying for a miracle, for my little miracle! ❤
This statement is dangerous. I’ve been on both ends of it; I’ve personally said: “I’m not getting my hopes up“, and I’ve told others: “don’t get your hopes up!“. But who am I to steal someone’s hope? Better yet, why would I want to rob myself of hope? Hope is the confident expectation of what God has promised me.
When we use the phrase “don’t get your hopes up“, we are promoting the unfortunate, yet popular mindset of‘always needing to get what we want’. We casually state “I’m not getting my hopes up” in order to selfishly protect our emotions. When we announce this disclaimer before we even begin to explain our true desires, we are trying to avoid the ‘hurt’ that comes when things don’t go ‘according to our plan’. “Don’t get your hopes up“, implies the low likelihood of a successful outcome; and this statement immediately lowers our expectations. It’s like holding an umbrella up on a partly cloudy day just because the potential of ‘rain’ is present. Instead of enjoying the moments of pleasurable sun, while accepting some intermittent clouds, it’s easy to allow the uncertainty of some ‘rain clouds’ to diminish hope altogether. We’ve all been guilty of “popping open an umbrella” before a raindrop even falls; expecting a downpour just because the odds are not in our favor; “not getting our hopes up” before the sunshine even has a chance to prevail. Words are powerful, and when we preface our conversations with “don’t get your hopes up“, we are discounting our ability to raise our expectations and pair them with infinite acceptance.
See, the problem does not actually consist of ‘not getting what we want‘, but instead, our unwillingness to accept what we’re dealt with, and work it out for good. This past week, we found out that our baby boy, Theodore, had a stroke. On top of countless other complications arising from Teddy’s open heart surgery and cath lab procedures, we were told a few days ago that he suffered brain damage due to a blood clot that formed. As parents, this is absolutely devastating news. While watching our son get wheeled away for a cat scan, we were hopeful that the scan results would come back clear; “our hopes were UP”. Our emotions took a hard hit when the doctors showed us the image of his brain, with a big dark spot, indicating impairment to his left parietal lobe. The doctors explained that Teddy’s stroke is the reason behind his right arm and right leg not being as active as his left extremities. Although we did not receive the news we wanted to hear, I had to make a conscious effort to accept the outcome, then purposefully raise my hopes again. Not easy. But I now “get my hopes up“, that Theodore will beat the odds once again; that he will fully recover and regain complete function over the right side of his body. I will accept the disappointment for what it is and still work towards the best outcome for Theodore; because it’s how we react that allows us to “fall right side up”.
‘Hope’ sometimes needs to be learned the hard way. Real hope is based on God’s Word, and not my own wishes. Although I wish my son never had to endure such pain, my hope for Theodore’s favorable outcome is based upon God’s Word in Isaiah 53:5. God is up to something in our lives; even when I cannot feel it or see it, I know God is working it all out behind the scenes. I’ve learned that it’s easy to have ‘hope’ when good things happen, but also easy to let go of ‘hope’ when God seems silent. I’ve learned that it’s ok to not always get what you want… but if we continue to hope for what we do not yet have, we will wait for it patiently (Romans 8:25). Patience is the proof of hope; and I am choosing to work on my patience every day. This journey has been incredibly hard, and not at all what we wanted for our family… but when times get tough, we can either panic, or we can pray; we can either say: “don’t get your hopes up“, or “keep your hopes up!”. And in the middle of this storm, I will choose to always pray and never lose hope (Luke 18:1).
-️ Momma Bear, Praying Isaiah 53:5
MY ‘TEDDY BEAR’ PRAYER:
Please pray that we continue to place our hope in God. I pray to not just maintain “wishful hope”, by being optimistic with “wishful thinking”… but rather to have “certain hope” – not ‘wishing’, not ‘feeling’, and not ‘expecting’, but KNOWING for certain that our circumstances will work out for the Glory of God.
Please pray that my below “hopes” come to pass in God’s perfect timing:
-I HOPE that Theodore fully recovers from his stroke; that his right side of his entire body matches the great strength of his left side, in Jesus Name.
-I HOPE that Theodore can begin his breast milk drip-feed within the next two weeks; better yet, that he will eventually be feeding right off of his Mother, in Jesus Name.
-I HOPE that Theodore will be approved much earlier than expected for his next major open heart surgery; and that the surgery will be a ‘Comprehensive Glen’ instead of the ‘Norwood’, in Jesus Name.
-I HOPE, above all else, that God intervenes and that Theodore’s heart will be made NEW and WHOLE by the miracle working power of our Almighty God; ‘HLHS’ has no power over my son’s life, and nothing is impossible for my God, in Jesus Name.