You turned five a few short weeks ago. Presenting yourself in my doorway wearing only your Monsters’ University tighty-whities and throwing your hands up in the doorway, you proclaimed, “It’s my berfday!” And, then, you put your hands on your hips and asked, very seriously, “It is my berfday, isn’t it, Mama?” I told you–finally–yes, it was your birthday, after at least 52 days of having to tell you it wasn’t. And I asked you to come crawl in my bed and pretend you were still sleeping, because you’d woken up before I had a chance to make up your customary birthday tray of doughnuts sparkling with birthday candles, a Star Wars birthday balloon, and a pile of tiny packages wrapped up in tiffany blue paper (because I ran out of birthday wrapping paper). You would have to wait patiently in my bed for your birthday breakfast. As I left you, tucked into my bed watching cartoons, and walked down the stairs to arrange your birthday breakfast, I wondered, with tears in my eyes, how we arrived at five years old. Continue reading
“ . . . the Lord does not see as mortals see; they look on the outward appearance, but the Lord looks on the heart.” 1 Samuel 16:7
Dear scared-out-of-your-mind Mama,
Hi. I first want you to know I am not some over zealous pro-lifer trying to perform Jedi mind tricks on you. I also want you to know that I’m not talking down to you from any moral high ground. I am a mama, and that is it. I am a scarred and broken person who has buried one child the doctors told me was perfectly healthy and now raise the child they deemed terminal at 21 weeks in utero.
I’m hoping you will read this and gain a new perspective other than what the doctors can give you on your “unviable” child. I hope you can believe that this child is more beautiful than the fear you’re filled with, and more concrete than your many impossible-to-answer questions you lay awake at night asking the ceiling and God and Google.
Do you know I would get really desperate in those midnight hours, as Sam kicked in my belly and my head swarmed? Do you know I used to slip out of our bed and tiptoe down the stairs, open up the laptop and type in the search bar, “Is my baby going to live or die?”
Google never gave me anything good. But I can give you my story. And maybe there is some good in it (better than google, anyways.)
I will never forget the moment the cardiologist sat down across from us after Sam’s first echocardiogram. He drew a diagram of a human heart as we sat there listening to his big brother–not quite two–toddle around the room, bump into the exam table, open and close the drawers beneath it.
I will never forget the way he asked me questions about the medications I had taken when Samuel was conceived. I will never forget the blank, ghastly horror that climbed up my throat as I realized we were possibly the 1 in 2,000: me and Sam, the mama who takes Lithium, and the baby who has a heart defect because of it.
He wouldn’t hear an explanation that would satisfy him. He didn’t seem to care if we had tried to do the right thing, that we had researched for years the effects of lithium on an unborn baby, nursing on lithium, the effects of a bipolar mother going off medication while pregnant. He didn’t care that when I was fighting for my life at 25–before pregnancy was even an option for me–that I refused to try another mood stabilizer because if I somehow got pregnant nothing was as safe as lithium for a baby. And he didn’t care that all those years ago, my psychiatrist sternly, desperately tried to break through my depression to reach the part of me that still wanted to live: Taylor, if you are dead, there will be no babies.
“Which doctors were those? Were any of them cardiologists?” This heart doctor’s questions slammed against my heart like a storm against a tossed and sinking sailboat. I could see in his eyes he had decided what kind of mother I was–what kind of person I was–and there would be no changing his opinion. I cradled my face in my hands and started bawling.
Samuel was diagnosed with a very complicated, severe form of Ebstein’s Anomaly along with a pulmonary artery that was not allowing blood to flow through to his lungs and a VSD. He would require a series of surgeries at the beginning of his life, and would be followed by a cardiologist indefinitely.
The next day, at my perinatologist’s office, we were given even more daunting news. My doctor’s voice cracked with the weight of her words, “Your cardiologist asked me to tell you, because time is a factor. He shared the baby’s echo with a panel of cardiologists, and they decided that your baby is, indeed, terminal. We do not expect him to be born alive, and there is a chance that when he goes into heart failure, Taylor, that you will, too.”
The room dissolved around me. Only Jack’s hand interlacing with mine tethered me to this world I could not believe was our family’s reality. My mind filled with images of another tiny, white casket, and could we bury him next to Caleb? And how will we survive this again? And how will Abraham ever be normal, with two brothers in heaven, two graves to visit, two extra birthday cakes, but no brothers to blow out the candles? I could barely see through this hurricane overtaking us.
You see, my friend, Jack and I have already lived the nightmare of leaving a child at the hospital. We have already planned a funeral, designed a gravestone, ordered an autopsy, read the results. I already live with a wound that I pray every day God will fill and heal. After almost 7 years, I have learned to bandage it well so it doesn’t ooze. But it is far from the faded scar I had hoped it would be by now.
My doctor continued, “So, we need to discuss your options.”
All I could think about was the hours of conversations I have had with my friends who have also lost babies. Through the outreach of the TEARS foundation, I have been blessed with these friendships that are unlike any other. We can talk to each other about things we just can’t share with our “normal” friends.
I remembered when Caleb died, I grew so angry at the many instances where people tried to console me by saying, “Well, at least he wasn’t born alive. It’s better this way; you didn’t get to know him.”
When I mustered up the courage, I asked each of my TEARS friends to weigh in on this idea. Each one of them had a baby who lived minutes, days, or months. Each of them responded with the exact same sentiment, almost verbatim. This is what they said to me,
Taylor, I think what you went through was the worst, because after carrying Caleb (we always make certain we use our children’s names) for nine months and delivering him, you never got to look into his eyes, or feel his little hand close around your finger. You never knew him ALIVE this side of heaven. I did, and every moment was precious, no matter how much pain or stress I felt. Nothing can ever take that precious time away from us. We are so grateful we had it, no matter how small a window it was.
I looked up at this kind doctor who shared our tears, and forcefully told her that we didn’t need to hear about “options,” that we were keeping this baby as long as God would allow us to. Through breaking sobs I explained, “We’ve already done one funeral. We know that, I guess. We can do another one if we have to. But this baby has a purpose, and we’re going to let him and God figure out what that is exactly.”
Her face melted in relief, “I am so glad. I believe that every baby has a purpose, too. I just have to, legally, ya know? inform you–”
We left the doctor’s office that day without any idea of what was going to happen. I was supposed to call the office if I started to get sick; that would mean Sam and I were going into heart failure.
Our family gathered at our house. I asked my sister-in-law, Semmelle, in a whisper, “So will we ever have a life again? Will we ever go on another vacation? How are we going to afford this, even if he lives? Especially if he lives? How are we going to manage to care for both children? How are we going to do this? How?”
She stared back at me with tears in her eyes. There was nothing to say; we both knew it.
I am not going to lie, my friend. The next sixteen weeks were excruciating. I have never clung to God and my faith in a more real and desperate way. I was scared to be alone, which was incredibly inconvenient considering Jack’s job required extensive travel. I felt a desperate need to cling to my husband. I would go in and sit on his lap, big belly and all, or lay on his office floor while he worked. If I was driving somewhere by myself I would call my cousin Sammie just to hear someone’s voice in the car with me. I became addicted to the violent show, “Criminal Minds,” and watched rerun after rerun until I passed out in bed at night. I threw three parties that summer to find a positive way to channel my nervous energy. Abraham (2)and I spent our days gardening and playing in the back yard. I focused on the beauty of his little face, his little hand reaching for mine. I knelt by his bed and watched him sleep in his bedroom through the midnights. I prayed incessantly, cried, and begged God to give my sweet little boy this brother.
Still, I cherished every minute that Sam kicked in my belly. Every morning and every night I awoke and felt him moving, I praised the Lord. As he grew, his prognosis brightened, and we learned that doctors must give an opinion on the viability of your unborn baby before the state’s limit for a medical abortion. In Samuel’s case, his heart looked significantly different by the 25th week when we underwent his next echocardiogram. 25 weeks is 1 week past the legal limit for medical abortions in Washington state.
We didn’t know if Sam would be born alive, even while I was delivering him. I will never forget being wheeled into a new room with a full view of Mt. Rainier. Samuel was born on a bright-blue-sky day in Seattle, the kind of day we hold our breath in anticipation for during the 10 months of clouds and misty rain. The mountain shone against the cloudless sky, and I felt God come close beside me through my hours of waiting in labor. Every time I didn’t know how I would possibly handle one more minute of suspense, my heart was tended to. I felt God’s presence all around me, in every step. He never left my side.
There was a moment during delivery when I couldn’t hear his heart beat on the monitor. A doctor I didn’t know rushed into the room, “Okay, Taylor, your baby’s not tolerating the contractions well. We need to get him out now.” I pushed harder than I thought was humanly possible. The monitor went silent, and I thought he had died. My mind flooded with details of another funeral as I pushed, pushed. But, then, moments later, he was born pink and meowing like a kitten. They laid him at my feet as the NICU team rushed in. They weighed him, wrapped him, and handed him to me for a kiss. And then, they carried my brand new beautiful baby boy to the NICU, followed closely by his daddy. I remained behind, hooked up to a magnesium drip that had nearly poisoned me the week before.
Sam and I stayed in different rooms on different floors of the hospital. I had a complete nervous breakdown the night he was born, when we were forced to leave Sam in the NICU because they needed to intubate him. I was wheeled into a tiny recovery room–too small for any mother with a baby in the room with her. A baby cried in the room next to mine as I sat there, alone, wondering if my baby was breathing in the NICU two floors above me. Sam’s birth wasn’t pretty, or easy, or anything I would wish on my worst enemy. But my baby was alive, and I had held him in my arms and felt his breath on my face, the warmth of his little body against mine. And it was worth all of the pain, every moment of pain and uncertainty, just to know my child alive for that moment.
The next two years were filled with agonizing, heart-wrenching periods of waiting, a part-time job’s worth of doctor’s appointments, months of quarantine, five and a half weeks in the hospital, catheterizations, one open heart surgery. I ate too much chocolate and drank chardonnay every night just to stay sane. I sanitized my house constantly, but it was always cluttered.
Giving Sam up for surgery has been the most painful, horrifying part of this entire journey. Friend, please do not underestimate the impact these days of surgery and procedures will have on you. Please do not underestimate the level of stress you will endure, and the long-term impacts of that stress. There is nothing shameful about going to a doctor and asking for help. You may need an anti-depressant or an anti-anxiety medication. You may need something for the day of surgery just to help you make it through. Please: ask. The one time I forgot to ask my doctor for something to help me get through Sam’s surgery was the day of his open-heart. I smoked half a pack of cigarettes instead. The anti-anxiety medication would have been much less stinky! But if you need to smoke on surgery day, I understand. I did.
There were whole months that I cried every day. I never thought I could do this, never thought I was strong enough. I didn’t have a lot of time to pray or read my Bible. All I could do was cry out for help all day long, month in and month out. Many days I woke up and didn’t know how I would manage. Many days, I was so depressed I just wanted to go to sleep and not wake up. I screamed at my husband because there was no one else to scream at. I didn’t manage this as gracefully as some, I’m sure of that.
But we have capitalized on every moment we’ve had with Sam. WE have made a lot of NOW choices for our family. We have taken trips instead of paying down debt, we have camped instead of doing yard work, we have snuggled on the couch instead of doing housework. We have filled the boys’ childhoods with ferry boat trips, days out with Thomas, and cousin camps.
We have lived TODAY, trusting God to worry about tomorrow. And you know what? We have lived a beautiful life, in spite of–but maybe because of–Samuel’s special heart.
Sam is now three. We are in a holding pattern, and I’m recovering my old self. I am working out again, finding time to write, and sometimes cleaning the house (hee, hee.) I am not the same person I was before Samuel entered our lives; I am much, much stronger. I’ve found brave. I choose every day what matters most, what I want my legacy to be, with a deep understanding that my time on this earth and with my kids is limited. And, I know now that there is no end to God’s love and faithfulness, that when I cannot go on for one more minute, He will carry me. And, my friend, He Will Carry You.
Keep this baby for your heart, Mama. Keep this baby because you will never regret the pain and heartache you pour into fighting for your child. You will treasure the minutes or hours or months or years God gives you to carry, love, and fight for this gift. Nothing will cost you more, and nothing will heap more blessings upon you. You will live a deeper life, a richer life, because of this child. You will learn to let go of so much that doesn’t matter and live in wonder at the good and real things of this life that you will carry with you into eternity.
God becomes real to the mother living in her child’s hospital room. He holds her hand; He comforts her. He dries her tears, and brings angels to minister to her breaking heart. He upholds her.
You can do this. YOU CAN DO THIS.
Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go. Joshua 1:9
Here is a peak into our journey with Sam. I hope it prepares, encourages, and emboldens you for your own journey.
And as for you . . . sisters, never tire of doing what is good.
2 Thessalonians 3:13
Inspired by many late night talks with my sister, Semelle. I love mothering alongside you.
I am blessed with a family who shows up in full-force for sporting events, award ceremonies, and graduations. They boom and scream, even when they’re not supposed to. They bring bullhorns. It. Is. Awesome. Even as a teenager feigning a “too cool for school” attitude when they erupted into applause, I secretly delighted in my crazy cheer section.
Something funny happened after I became a mom, though. After all of those years of awards ceremonies and graduations, followed by bridal showers, a wedding, then a baby shower, the baby came home.
Bleeding nipples, sleep deprivation, sleep walking through diaper changes, navigating a breast pump torture device, and loving a husband who may sympathize and help but cannot replace me, paled every other work I had ever done. I looked around me in shock, realizing for the first time that this is the work of motherhood: backbreaking, torturous joy on repeat, day in, day out.
Pouring my self into this tiny being who sleeps and spits up and fills his pants without a care, who never seems to be particularly grateful, is the deepest, most raw giving I have ever done. I stare at him nursing, in the midnights, rock him until he burps, tears running at the marvel of love so much bigger and harder than anyone could have ever explained to me. I marvel at how I am being pushed through this sieve of motherhood, my selfish nature stripping away, my orders of importance tossed and rearranged into this child’s wellbeing. I burp him, lay him in his bed. I crawl under the covers and watch my husband sleep deeply (really?), and wonder if there is anyone else awake in the whole dark night right now. I smile as I try to fall asleep, confident there is another mama out there doing the exact same thing at this weary moment.
And where are the cheer sections? After all, there is more grit in breastfeeding through one bout of mastitis than any AP exam I ever took. Why aren’t there cheer sections everywhere, complete with bullhorns and “Way to Go, Mom!” signs, following moms around throughout their days? “It should be, it should be, it should be like that,” Dr. Seuss says (Horton Hatches an Egg).
I listen for the cheer section sometimes. But there is no clapping audience present in the midnights. There is no cheer section in the kitchen when my heart baby throws up all the milk I’ve pumped for him along with all of his meds. There is no “Way to Go” sign in the hospital room at 5am when he wakes me up to restart Dumbo again. No one applauds me in this deep, naked work of mothering. I stand in their room at night after a rub-you-raw day, and I wonder if I’m doing this right. I kneel and I pray; I cry and I beg for grace. Mostly, I pray I won’t screw them up.
Morning keeps coming, and Exhaustion shuffles down the hall alongside me as I make my way to their bedrooms. I squint at Day filtering through the curtains, cruel and harsh, until I see the sun rising in their faces, bursting with delight at the sight of me. Me: tired, sieved, broken, greasy-haired, who loses her temper and shrieks like a banshee and hides in the bathroom when she just needs a minute of peace. Me, who used to knot at the sound of a baby crying because I have never wanted anything—anyone—more.
“Mama!” That’s what they call me as I pull them out of their beds. They cling gratefully, and I inhale their little boy smells, their first words of the day, their still-smallness. Exhaustion slinks back down the hallway as my two rising sons fling joy wide across my world. There are no plastic gold trophies, no bullhorns, in this little boy’s nursery. No one will remember how many times I woke up with them last night. And yet, I’d trade every shiny affirmation in the world for their beaming faces. They wrap around me like a couple of koala bears, and I maneuver down the stairs cloaked in chubby arms and luscious kisses. Who needs a cheer section, anyways?
God bless every mother, at midnight and early morning, especially on your rub-you-raw days.
Driving in our packed Pathfinder yesterday morning, it hit me: all we needed (minus Sam) we had with us: clothes, a pack and play, car seats, a stroller. Despite missing our house and all the comforts it provides, we don’t need much, especially now that all we can think about is getting Sam healthy and being able to take him home. And, it’s the same for all the families here at Children’s, I think . . . it doesn’t matter how much money you make or how nice your house is or what you can afford when your kid is sick. In a heartbeat, we would all give it all in exchange for leaving the hospital, family in tact. Family “in tact . . .” We can get by with what’s in the back seat, if only we can keep each other.
Sam was less than two weeks old when I wrote that post from his room in the NICU. I had already spent more time in hospitals than your average 31 year old mother, so I thought I was prepared for Sam’s birth and hospital stay. But that two and a half weeks in the NICU shocked me into a new dimension of living. Before, when I had been the patient, there had always been a projected date of discharge. For Sam, there was no such thing. After we had been there for ten days at least, I asked one of the nurses how long she thought it would take for us to get home.
“Oh, by Christmas for sure.”
I almost fainted, and a pulse of strangle-you anger rushed through my exhausted body. “Christmas? It’s August!”
“You just never know how these things are going to go–”
I looked at her and tried to not reveal the churning of my heart, the fear that I didn’t have what it took to stay until Christmas. I ached for Abraham, now living at my parents for the second week in a row. He didn’t understand where we were; he was only two, and struggled with such swift changes to his daily life. The parents who carried him down the stairs every morning, played with and fed and loved him every day, had all but vanished.
I felt a wave of homesickness flood over me, almost feeling the warm air wafting through the sliding door in the kitchen, the curtains dancing in the breeze and filtering in the late summer afternoon’s rays. I ached for the lush grass in our mess of a back yard, to lie down in it and savor it like I had never taken the time to do before now. I ached for a home free of wires and alarms going off constantly, where I could hold both of my living babies in my arms. I wondered if we would ever leave this place, if we would ever place Samuel in the crib his big brother had slept in, ever see him grow.
And then, we did take Samuel home. I held both of my babies on my lap and cried tears of relief and joy. We placed Samuel in the crib his big brother slept in. We have watched him grow against all odds, and we have marveled.
Gratitude has assumed a new form. What I used to take for granted, I now say thank you for. When I was pregnant with Samuel and completely overwhelmed, filled with anxiety at the thought of driving to the hospital for yet another check up, I started thanking God for concrete. Yup. You see, I started thinking about those mamas in Africa whose babies were sick like mine. But there are no concrete roads and SUVS to get them to the hospital, if there is a hospital at all for them to go to. They walk barefoot in sweltering heat while I drive in air conditioning a distance they could never walk in a day. Concrete became a pretty big deal to me.
Doctors became a very big deal, as well as my freedom to choose which doctors treated me and Sam, which hospital he would go to. And nurses. And ultra sound machines. And health insurance. And the nice old millionaire who dies and leaves money for families who have health insurance and jobs and have saved their money, but never enough money to cover seventeen days in the NICU. And Aunt Mary, and all the people who had been there before us sleeping on the floor or leaving their babies because there was no room for parents. Because of Mary Schwed and parents like her, we slept in a bed in a private room a floor away from Samuel, took free, clean showers and washed our clothes in a free laundry room with free laundry detergent. Because she suffered, I gained. Because she gave from empty, I now slept in peace. Thank you.
My heart has not stopped this swelling of gratitude. Yes, I have become bitter and angry and I have lashed out at the people I loved. I have been too tired to give thanks, too tired to lift my head up. But, now, even when I’m cowering and chewing on my self-pity, I am staring at concrete. And I am thankful again.
I would never choose the life I live for anyone else, but I wish, OH HOW I WISH, that you could all see the view from here. From here, God is a God of mothers’ pounding hearts, of dirt roads and air conditioned ultra sound rooms. He stretches and bears me up in deep ocean love as I wait for Him on desperate knees. In suffering, in losing, in mourning, and in bearing, I see more of Him in every breath, in every cup of coffee and echocardiogram. I see more from here. And I sing thanks.
Praise be to the God tending sick babies, praise be to the God who walks with their mamas.