Red Vine Spirituality

Taylor K. Arthur balances Bipolar 1 Disorder, marriage, and motherhood with a nitty-gritty faith inspiring a twisted, blissful life.

Category: CHD Awareness

Rock Your Scar

. . . I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
Galatians 12:7-10

I’ve been seeing it everywhere this month: Rock the Scar. I even entered this darling picture of Sam into a contest over at Mended Little Hearts:

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And I know it’s supposed to be a great way to make people aware of congenital heart disease. And yes, I get it: rock that scar, be proud, we’ve endured.

But let me tell you: this last week? It’s been hard to rock the scar. In fact, I really just want to crawl in bed. Is it because I got real last Thursday about what it really takes to walk alongside a heart warrior? I woke up at 3am the morning after I hit the publish button: Did I really say that on the internet?

Sometimes it takes a week of feeling very lost before I can put into words how broken this pain still makes me feel. And I don’t want to rock my scars or Sam’s scars, and I don’t want to live true and out there with my breaking heart.

Because it’s not my nature to be this honest. I’ve spent years holding in these scars, years trying to figure out how to forget the ooze under my target t-shirts and Costco sweatshirts. Isn’t that what’s been expected? Straighten up, tuck it in, dress up for the party, and S-M-I-L-E?

But it hasn’t worked, you see: a small-talk life. And I don’t believe that’s how Jesus lived, or why He died: to live with a plaster-of-paris face pretending it’s all okay. I don’t believe asking each other to bury grief and regret and brokenness accomplishes anything but a growing ulcer in the pit of our souls. Dismissing tears breeds loneliness; persisting with a view of the world where only fun will be entertained (Cloud Cuckoo Land) betrays half of our existence.

In each day, light gives way to darkness, dawn breaks forth in deepest night. These opposites mingle in the dawn and twilight, and are the most beautiful, colorful moments of my day. Don’t get me wrong: I love blue sky, and I yearn for spring on these long February days of grey. But if we want true beauty, the miracle of this life, we must be willing to bear witness to the weddings of our deepest joys and sorrows.

So the scars I wear, and the zipper down my child’s front, beg to stay hidden. We can dress up for school and no one ever has to know. And even if one of my wounds oozes a bit, I get out of there before anyone gets too close to see. It’s a way to live, ya know? A plaster-of-paris existence. But it’s not part of my journey. Because I know that in a school of over 200 kids, there is at least one other family dealing with CHD who feels alone. And, in a school of 200 kids, there might be more one child whose mama and daddy left a baby behind at the hospital. And, in a school of 200 strangers, 50 of those kids have a family member struggling with mental illness.

Yes. That’s right: we’re all struggling, we’re all grieving, we’re all trying to make sense of this fallen world and find some meaning and some peace and some friends who won’t judge us.

And that’s it, friends: we all have scars. And usually, they beg to stay hidden. But once I rock that scar–that broken piece of me–it becomes a tool instead of just my own personal ooze. My pain resurrects. And isn’t that what the Cross is all about: that place in each of us that dies to self so that He can be brought to life?

So I’m going to keep digging at these wounds, bringing them back up to the surface to love and serve and relate to another broken heart or scared mama, even if I rip clean open.

In my days and weeks of weakness and dark, I hear this familiar Voice: but if you can just get over yourself you can live the life I meant for you.

Oh, yeah. I know that life–His path for me–exacts all of my ego, and leaves me full and satisfied.

So, whether I feel like it or not, I’m taking my wounds out. I’m showing them off, and I’m boasting in my weakness so that my Father gets the glory, and nobody ever for one second misunderstands that the reason this bipolar girl who didn’t know if she’d ever had a baby and had three, that this marriage that’s been broken ten ways to Sunday and has been healed even more times by His amazing grace, that these kids who breathe grace-living in this crumby kitchen and half-finished house are here for any other reason than a God who never stops giving, never stops healing, never stops loving.

Maybe I’ll take a week every now again away from Red Vine to breathe deep and love myself. That was this week. There will be more weeks of breath and pause along this path for me, I’m sure. But dying to me to live for Him, fully living into His plan for me . . . sounds like an adventure I’m not willing to miss.

So here goes. Let’s rock the scar.

Your humble servant,

Taylor

Dear Mama: So you’re carrying a heart warrior?

. . . 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.

God bless you and your beautiful, perfect child.

My love and prayers go with you,

Taylor

Red Vine loves Mended Little Hearts Puget Sound

If you are in the Puget Sound area and would love to connect with an amazing group of heart families, Mended Little Hearts is where it’s at. From the time of your unborn baby’s diagnosis through hospital stays, surgeries, and everything in between, Mended Little Hearts is a place to make friendships with people who get what you’re going through, have been where you are, can give you advice and direction that is helpful, and cheer you and your heart warrior on along the way. Our family has received so much from this group just by attending several meetings and events. We have made friends through the Mended Little Hearts of Puget Sound Facebook page, and love having an instant community we can connect with online.

Mended Little Hearts of Puget Sound meets on the first Tuesday of every month except July and August, at 5:30pm – 7:00 in Tacoma, WA. Contact Darcie via email at darciemlh@comcast.net, visit the MLH Puget Sound website, or visit the Facebook page for more information. They not only support families with a parent-focused time to share and learn about the different aspects of caring for a heart warrior while the kids participate in their own program called the “Heartbeats.” I almost burst into tears at our first meeting when I realized that the majority of the teenagers helping with the “Heartbeats” are heart warriors. It is an amazing gift to see our children have role models that have already experienced much of what Sam is going through. In addition to providing the support group, MLH also seeks to provide fun family outings, an annual picnic, Awareness Events throughout the area, as well as “Bravery Bags” for families staying in the hospital.

If you are outside of the Puget Sound area, make sure to visit the Mended Little Hearts national website to see if there is a group near you.

If you would love to support this awesome organization, there are two fundraisers going on right now locally. You can buy a MLH sweatshirt to help spread awareness and raise some money to help heart families in our area, or stop by hello, cupcake to buy a vanilla strawberry cupcake. Hello, Cupcake will donate $1 to Mended Little Hearts of Puget Sound for every cupcake sold. Awesome, huh?

WA State CHD Week

WA State CHD Week

Bravery bags by MLH

Bravery bags by MLH

Newborn Hats for CICU

Newborn Hats for CICU

Sweatshirts fo MLH

Sweatshirts fo MLH

Awareness by MLH

Awareness by MLH

Bravery Bags by MLH

Bravery Bags by MLH

Hello, Cupcake for MLH

Hello, Cupcake for MLH

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