Faith to write in ink.

The faith to

There’s something about kids, babies, and pregnancy that leads to a lot of counting on the fingers. We find ourselves counting weeks down and weeks to go, marking special dates and anniversaries, planning out appointments, and anticipating milestones. Optimism and faith after my first miscarriage helped me get past my fears, and I bravely scribbled in the week count on every Monday, all the way up to my due date. When I miscarried again, I had to use white-out to cover up the weekly count, and even then, the discoloration on the page proved a painful reminder every time I opened my planner, which is constant in my profession. During my third pregnancy, I was wary and thought it wise to use a pencil instead. Sure enough, I ended up angrily rubbing the eraser over the ultrasound appointments and the weekly count as I miscarried yet again. Through six miscarriages, I learned never to write about my babies in ink. Ink held too much promise, too much hope.

When we adopted our infant daughter, we knew she would be born with a rare, serious heart condition. Her first three months of life were spent in the cardiac ICU following open heart surgery, much of which she was sedated and intubated. It was a grueling recovery. When she finally came home from the hospital,  her appointments for cardiology, endocrinology, and GI, plus her therapists’ visits and social worker visits filled my calendar. Although we knew she could die, the idea that someday she actually would seem abstract and unbelievable. I guess that’s understandable… that naive, childish feeling that because we were obedient and stepped out and took the risk that she’d inherently be okay… That was never promised, and I feel foolish for having felt that. When she died at five months old, I canceled the medicine reminders on my phone, deleted my baby tracking apps, and yet again, armed with an eraser and a bottle of White-out, I scrubbed the what-should-have-beens out of my calendar. Dates on the calendar now mark how old she would be now, and how long she’s been gone. It’s pointless to circle them. They are highlighted in my brain, tattooed on my heart.

Now that our son is here, I am wary still of my calendar. He was born 9 days shy of a year after our daughter, and so he is the same size and age she was this time last year. It’s like living in the twilight zone in some ways. We’re going to the same fall festivals, doing the same traditions, still doing “normal life” (whatever that is), yet instead of carrying around a tube-fed little girl with half a heart and a ton of medical gear, I have a perfectly healthy boy resting in my arms. I live in the strangest dichotomy of grief and joy – the two co-existing together. I’d never had him if I hadn’t lost her. I look at his perfect face and feel the weight of her.

Yesterday, he went to the pediatrician for his 4-month check up in the little army green pants I bought for her but she never got to wear. After the visit, we scheduled his 6-month appointment… the one she never made. I got the text reminder from the healthcare alert number today, and I went to put it on my calendar. I flipped over a few pages and found the spot and started to write. I realized, with momentary horror, I did it in ink – a bright Papermate Flair pen with the big, swooping felt tip.

I know he’s perfectly healthy, but I live with the suffocating fear that I’ll lose him too. As the calendar turns to November, I catch my breath. I’ve been flummoxed that we’re so predictable – a trip to the pumpkin patch one weekend, a Sunday drive to the mountains the next- and I’ll open my photos or Facebook and see in Memories that we did the exact same thing on the exact same weekend a year ago. What if the weekend she got sick, he gets sick too?

I stared at the appointment I accidentally wrote down in ink today for way longer than I care to admit, wondering if I needed to find the White-out, wondering what if we don’t make it through November. I decided to leave it, clinging to big faith and big hope. I know the likelihood of anything happening to him is low, but it still exists and not one of us are promised tomorrow.  If we let ourselves live in that fear, though, we’d never write anything in ink. We’d never make plans, set goals, or envision a future. My loss has left me beaten, broken, and hurt, and I live with my grief daily, but I refuse to let it steal my hope. I’m clinging to the faith it takes to write in ink.


May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

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Dear PICU Mama, You are a Warrior.

Dear PICU (or CVICU or NICU or any other ICU) Mama, You are a Warrior.

When a child is critically ill or injured, it is impossible to describe the suffocating feelings
of helplessness, fear, and frustration that rip through a mother. Beyond that, it is impossible to describe how the experience will change your identity. You become a warrior. The PICU is a black hole, a time warp, a place where days blend into one another, with the only differentiation between night and day is the shift in staffing. Moms of children in the intensive care unit who pass one another in the hall on the way to the bathroom or the family snack room for a cup of ice can stare into one another’s eyes with the same battle-weary look and just know what the other has endured. We are warriors, joined by the common fight to take our child home again.

We meet with the care teams and relay messages to praying friends and family. We text back, “no, we’re fine”, because sometimes there’s nothing to be done but pace the ten steps around the bed, back and forth all day long and wait, hoping for some promising change from the day’s adjustment to the dosage of medication or the new scan or imaging. So, we pace, we stroke our child’s face, and we pray. Within us, we battle the anger that fixing our baby is not within our power.

We watch PICC line changes, IV insertions, wound care, harsh medications enter our children, drug withdrawals, difficult things. We see painful procedure after procedure, and we can’t stop it, so we remind ourselves that the battle’s worth it to win the war. We hold back our own tears while our child cries, unable to comfort them from the pain that brought there to begin with. We battle the guilt and sadness that we couldn’t stop the cancer, the heart condition, the accident, the illness from coming. We monitor vitals, stare helplessly at screens, watching numbers rise and fall, willing them to inch in the right direction. We glare at the IV trees, ventilators, and other machines with a strange combination of appreciation and hate. We feel grateful that these cumbersome machines give us hope for healing or hope for more time, yet we loathe them and wish them away. We long and physically ache to pick up our child, to rock them, to hug them, and talk with them.

We sleep in waiting rooms, on plastic couches, folded up like origami in too-small chairs, in hotel-like hospitality houses away from our own bed and pillow, or more preferably, in the hospital bed right beside our child. Sleep is never really sleep when you’re really just listening for the monitor to blare its alarm or waiting for the phone to ring from the on-call physician.

Despite the emotional and physical exhaustion, PICU mothers fight on.
We advocate for our child, seeking to understand medical terms outside our realm of expertise. We research and scour page after page of medical journals and mom blogs for some alternative treatment, something to try to heal, comfort, or save our child. We keep notebooks of notes, folders of scribbled pages and computer printouts. We hang every word spoken to us by specialists and intensivists. We fight to make sure that every box is checked and every possible solution, medication, or trial has been considered. We stop at nothing to ensure our child has had the best care.

We never, ever give up on our children or stop fighting against what rips their lives and their health away from us. We don’t give up. We battle our fears of inadequacy, the worry that we have let down our spouse, our parents, our siblings, our jobs, and especially our other children, who all must go on and manage without us while we stop our entire lives for our sick one. We miss birthday parties, special events, and holidays. We spend Thanksgiving in the hospital cafeteria and decorate the ten by ten bedspace for Christmas by hanging stockings, hoping it will be enough, that it will be okay that there’s no tree this year. We watch the calendar with fear that there might not be a
tomorrow, fearful that we can’t imagine the next year, much less the next month.
Dear PICU mamas, we are warriors. We are fierce. We face every mother’s worst fear, and we power through it, somehow. We embody strength. We have been refined with fire. Our love for children reaches palpable levels that inspire hope and touch the soul. We are tired, we are hurt, and we hate everything about what we’ve experienced, but we fight on.

We are warriors, y’all.

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Better.

Not too long ago, Jake turned and looked at me, with a serious expression across his face, and he told me I had changed.

That’s not exactly what a wife wants to hear, you know. It’s an ominous, loaded statement. We were at a stoplight, discussing an upcoming surgery I would be having. I had been matter-of-factly listing on things the doctor had told me. His sudden remark stopped me in my tracks. He said once I would have been so scared and nervous, and I realized he was right.

He explained to me how Mira has made me a different person, but it was in a good way. He told me I was stronger and fiercer than I had ever been. He listed a few examples of recent situations that I had handled on my own without him, not batting an eye. His comments stuck with me. I had not realized it was so, but as I reflected back on the last year, I realized he was exactly right. I am different. Adopting, loving, raising, and advocating for a little girl with a broken heart, then having to let go of her little body when there was no more life left in – well, that will change you.

First off, now, I’m less offendable, less bogged down by others. I see more now than ever, having lived in a place like the ICU for nearly three months, people going through tough things. I’ve learned to be less quick to jump when people do things that bother me. I’ve been on the other side. I’ve stood at a cash register, pumped gas in my car, grabbed take out, done normal-life things, wondering if anyone around me could possibly know the hell I’d just been through. Who knows what has anyone has faced recently? Likewise, opinions have become of little value. You learn you can’t please everyone, and while I have always generally avoided conflict at all costs, it no longer weighs on me so much when I can’t please everyone.

I’m more fearless – literally, nothing could be harder than what I have already done. I remember this feeling rush through me as we walked away from her graveside service. Nothing could be harder than leaving your five-month-old in the cold, hard ground. I’d done the hardest thing I could do in life, and so what sense is there now to fear the future?

I am fiercer… more intense. Always been a bit of a mama bear, but having to protect and advocate releases a side you didn’t know you had. Mira’s condition required a mother who would make phone call after phone call (some days, I’d spend hours on the phone, calling provider after provider in order to get the appropriate refill or to make sure the correct home therapy happened), a mom who would read and research and ask question after question. I learned to advocate. Once, when we were interviewing pediatricians, and I realized quickly that I knew more about Hypoplastic Left Heart Syndrome than he did, and I could see how quickly I intimidated him. I sometimes apologize now, because I know I am an intense person. I can’t help but be fierce. I’ve had to be.

I’m more compassionate. The situations I’ve seen because of my children have made me a more compassionate person. I’m more aware of the effects of poverty, teen pregnancy, marital stress, drug use, and mental illness. Our birth families’ situations are each unique and different, but each one, particularly Mira’s, has taught me to look beyond the plight, and see the soul. Mira’s family helped me learn to love more completely. I don’t see them or talk to them regularly now, but they certainly impacted me and have helped me become a more compassionate person.

I’m more damaged now. Losing Mira has made me a way more complex person. I was talking with a friend just recently about grief, and she asked me about the sadness, and I explained to her that it truly never goes away. This kind of grief is different than any other kind of loss – it doesn’t dull into an ache over time and the sadness doesn’t fade. Instead, the sadness stays, running in constant parallel with happiness and joy.  The two coexist in you, the light and the dark. This kind of complexity is isolating… it makes friendships and relationships harder. It makes you awkward at parties, difficult to relate to, scary to some. You’re a walking example of every parent’s worst fear. You become a person with more baggage than some can handle.

My husband’s statements are true about him, too. He changed. He lost some of the hopeful innocent optimism he’s always had – I know he didn’t truly believe we could ever lose her until the exact moment we did. He too has become stronger, fiercer, and yet more damaged, and so has Makinzy. It is hard to capture into words how losing a child will change you. Yet, still, regardless of the pain, I am grateful for her, for her impact on my life, on so many lives.

I will never be the same. She made me better.

Floating.

I hate when I get in these moods.

After our last miscarriage, as most people who know me (or have read my blogs) know, I saw a grief therapist for a little while, mainly because I wanted to know that the way I deal with loss is healthy. Little did I know how important that would be in the years right up ahead. While I have never dealt with depression as a disease, I do find myself in through valleys of depressive moods from time to time. As she aptly explained not too long ago, I deal with intense sadness, because I have endured intensely sad circumstances. It’s strange what can bring these periods on – sickness, bad weather, stress, difficult dates on the calendar, anything really. But when I feel these moods creeping up it’s like a water rising around my ankles. I always have two options, close my eyes and float on, or gasp like a guppy. My therapist told me to be so self-aware and to be able to acknowledge such moods is a very good thing.

This latest bout has been the culmination of several things – mainly the ending of summer and the cool dampness of fall (I am so not one of those basic white girls who love PSLs and flannel… don’t get me wrong, I do enjoy fall, but I am a summer girl at heart). Fall, this year ushers in more sadness than ever. Last year, it was full of firsts. Mira’s first festival. Her first Halloween. But also, it was full of lasts, like her last Sunday at church. We got her ready not knowing that morning when I put her in the little fall dress we were headed to the ER, and we’d never bring her home again. We spent Thanksgiving in the hospital cafeteria, just being thankful she was alive. She would die less than a week later. Fall, this year, is still full of firsts. Finley’s firsts all coincide with Mira’s – their birthdays are almost exactly a year apart, so there’s this strange sadness mixed in with the joys of his first Halloween and first Thanksgiving. Now that everyone has fully embraced the arrival of fall, there’s no avoiding the fact that the one year anniversary of her death is just ahead. This gloomy feeling, plus the intensity of school during the first nine weeks (September is a battle march of instruction, at least it is in my classroom), the hectic schedule of fall sports, and the arrival of winter germs, ugh… well, it’s too much. I can’t breathe this time of year for all the things choking me, demanding my full attention. I am already dealing with some something that feels curiously like strep throat.

Needless to say, it’s not even October yet, and I’m blue.

I’ve learned it’s not wise to fight it. If I don’t acknowledge it, if I pretend I’m not bitterly sad and plaster a smile on my face, it doesn’t help it to go away. Sadness demands to be felt. If I fake it, it’s like I’m fighting a rip-current. I become that gasping guppy. No, instead I have to ride it out. I have to float with it.

At the same time, though, I am filled with so much happiness every time I look into my son’s eyes. I catch myself laughing from time to time, overcome in a moment of worry-free joy. His growth and development baffles me, excites me, and terrifies me. Each new milestone is one Mira didn’t meet, and I constantly have to remind myself that his heart is whole. It’s different. I don’t have to live waiting for the sky to fall.

I am constantly in this mix of happiness and sadness, excitement and fear, joy and pain. And when someone casually asks, “how are you?” how in the world do I explain all this?

Perhaps I should just say I’m floating.

In a perfect world.

In a perfect world, I would not have overslept this morning, rolling out of bed in a panicked frenzy to get dressed as my concerned mom (my son’s caretaker for the day) came inside through the garage door, calling helllloooo y’all, realizing from the dark rooms that we must still be in bed.

In a perfect world, I’d not be exhausted. There wouldn’t be a stack of work beside me nor would there be this annoying stain on my dress. I wouldn’t forget to take my medicine to control my out-of-control reproductive system. Heck, I wouldn’t even need it. I wouldn’t be impatient with my teenage daughter, nor the guy driving 20 mph on the moped in front of me while I’m running late. I wouldn’t mutter words I shouldn’t when my hands are full with a diaper bag, computer bag, lunch box, car seat, plus almost-cold coffee, and then I drop my bag or misplace my keys.

In a perfect world, I’d do all the things. I’d do them allllll. I’d volunteer, donate, give, serve, and go, and time would never be an issue. I’d look fabulous, feel fabulous, and do fabulous things. I wouldn’t be struggling to balance teaching, mothering, and writing and feel like I am doing a lackluster job on all three fronts.

In a perfect world, I’d write something relatable, thought-provoking, and stirring everyday, dazzling readers with my prose. I’d make money from my desk, and continue to teach just because I really love middle schoolers, not because we have bills to pay, and somehow, I’d still have time to cuddle and care for my perfect little boy all the time, making sure he learned sign language, had plenty of tummy time, and did all the extra things to get him ahead in his growth and development. I’m still determined he’s going to have nothing but homemade organic baby food.

I’d have time to be the best advocate, and I’d be the best friend who never forgets to text back. I’d never be late on deadlines, and I would always remember to write thank you notes. I wouldn’t feel like I live life on two wheels.

In a perfect world, my perfect daughter would still be here.
Her perfect little heart would not have been so imperfect, and her heart defect wouldn’t have robbed her of a life spent in my arms, covered in my kisses. In a perfect world, I’d look in my son’s eyes and not feel the pain of missing her, wondering what it would be like if they co-existed, if I could hear her giggle in the next room while I rock him to sleep.  I wouldn’t be living a life where debilitating grief and extreme joy co-exist and wind, grow, and intertwine like honeysuckle vines in the summer.

But then He speaks.

If the world were perfect, my children wouldn’t even have been mine to begin with. They might not even exist. They exist because of imperfection, because of struggles, because life happens in ways we don’t plan or anticipate. No adoption comes without heartbreak.
If the world were perfect, I wouldn’t stumble down to my knees where I find myself in worship to the only One who can make me perfect.
If the world were perfect, I wouldn’t have failures to lay at His feet.
If the world were perfect, I wouldn’t need Christ. I wouldn’t need grace, and I wouldn’t need to show it.

These frustrations, failures, feelings of falling short daily throw me into worship. My struggles become my victories, testaments of His glory, shouts of His praise. Each day, when you pass me at work, run into me at church, or find me at the stove cooking supper, my brain is in this cycle – identifying my weaknesses, beating myself up for the things I’ve not done or not done well enough, hearing Him, falling on face, and then tossing up my hands in praise.

I’m so grateful I don’t have to live up the world’s standards, or even my own standards. I’m so grateful I don’t live in a perfect world.

And then there were 4. Or 5. Or 9. Whatever the number, we just added one more…

Back in mid-June, Jake and I took an anniversary trip up to the mountains and spent the week kayaking and paddleboarding on the lake, just the two of us. Makinzy was busy with the first of three weeks of volleyball camps this summer, and he and I stole away to just relax. I gave blogging a short break, and then jumped into a little home remodel project when we got back. I had big plans to blog about it all – the importance of taking hubby/wifey get-aways, the awesome kitchen update – all the good stuff.

But then life.

Life with us never stays still long.

Mak was away at youth camp (notice a theme? I might have over-booked her this summer…) and Jake and I were asked to speak at an adoption event for our agency. Right afterwards, while we were mingling and meeting other prospective adoptive parents, our social worker asked to speak with us, accompanied by a pregnancy counselor. We knew exactly what was going on – something big. We found a private area, and they gave us the news that we were matched with a birthfamily – and baby boy was recently born and they wanted us to name him. We were given some info on his family and their story (none of which I can nor want to share here – out of privacy, of course… they are incredible people) and they showed us his beautiful picture. Instant love. One look at his photo, we knew he was ours.  We named him Finley. They had respectfully and kindly let us be the ones to name him. Then we learned we had to keep it a secret for a little while! So, we set into motion our plans! Jake’s sister was the first we told – in order to enlist her help in making a reveal happen. We had already planned a first birthday cookout in memory of Mira and we were going to have it that weekend. Makinzy was still away with the youth, so I made a onesie cake (blue cake on the inside) and covered it in cream cheese icing. I outlined it to show that it was, in fact, a onesie and wrote Guess what?! on the top. When she came home, we surprised her and she sobbed to most joyous tears, and then she cut it open and saw it was blue for a baby boy. We managed to get her to keep the secret too, and on the day of Mira’s first birthday cookout, after we had cake and collected “presents” – gift cards for heart families at the hospital in the cardiac ICU – we had Jake’s sister “discover” a large delivery box. She brought it around for us to see. Jake is notorious for his unique Amazon purchases (partly because he’s Jake, partly because he’s an elementary principal – unicycles and giant t-rex costumes for example), so he calls everyone over to see what cool thing has just been delivered. We open up the box (at which point suspicions are raised and our friends and folks are thinking – is this what I think it is?!) and out pop blue balloons, and in the bottom of the box was a picture of Baby Fin with a card for his grandparents saying Will you be my Granny and Pawpaw? and Will you be my Nana and Poppop? signed from him. It was so emotional. Daddy sobbed, Jeanette cried, Ben jumped up and down, and Mama squealed then yelled at me because she just knew I had a secret. It was perfect. We learned about him on Friday, told our close friends and family on Sunday at the cookout, and then we waited and waited for the thumbs up from our agency that some important paperwork was complete. Then we were able to pick him up Wednesday afternoon. We posted the videos taken of us telling Mak and opening the box at the cookout late Tuesday. Since then, we’ve been adjusting to life as a family of 4 again, and getting used to the newborn feeding/sleeping schedule, plus, we have been working on slowly and tenderly building a relationship with some of his incredible birthfamily.

Needless to say, I haven’t blogged much for very sweet reasons.

There are so many emotions to tease through- – –

  • the unexpected wave of saddness a new baby brings  – it seemed to magnify the loss of Mira… a feeling I didn’t anticipate
  • the sweetness of a boy – as well as the challenges
  • the importance of and love involved in open adoption

We are overjoyed to have Finley… I couldn’t be more grateful for God’s provision for him and for His unending love for us.

How great is the love the Father has lavished on us, that we should be called children of God! – 1 John 1:3

 

Sorrow and Celebration.

I’ve been dreading writing about today.

I’ve dreaded talking about today.

I’ve dreaded just living today.

She would have been one year old today. A whole year old.

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I was running through the halls, rushing to the delivery room, a panicked phone call that labor was starting… it was a year ago, a little after ten the night of June 19. I’d hold the hand of a brave sixteen-year-old girl and coach her through four hours of labor. I literally pushed with her, holding her. I’d scrubbed up for what we thought would be an emergency c-section, but moments before we were to go, Mira was born. It was just after 2 AM. I nearly caught her. She opened her eyes and saw me. Mira impacted so many lives. I had no idea what was to come. After snapping a few pics, loving on our birth-mom and getting her situated for the night, and of course, seeing Mira off to the NICU to be stabilized, it was 3 AM, and all the adrenaline pumping stopped and I was ready to collapse. The L&D floor wasn’t super adoption-friendly. I’d received disapproving glares from a few nurses, seemed in the way to them. We got no room that night, like we were told we would. We weren’t even allowed to have a blanket. We were just “visitors,” they said. Whatever. I was overwhelmed with joy and exhaustion, and I slept on the hard, cool wood floor of the 7th floor waiting room with no blanket or pillow. Just my body laid out on the floor. I slept until 8 AM. Her birth was much like her life, miraculous, difficult, complicated, glorious. I am still overwhelmed with emotion.

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I’ve been dreading this day for months, but I can’t help but see that everything around me testifies that God is still good, still sovereign, and still for us, even when I get choked by the darkness of grief. He is still glorious, even in a world of brokenness.

I have to remember that today is a day to celebrate – –

To celebrate that she lived surrounded by love for five beautiful months.

To celebrate that her birth-mom chose life.

To celebrate open adoption, and bonds that we will forever share.

To celebrate the miracle that of all people in the world, God saw fit to make me her mama.

To celebrate her impact on so many – in raising awareness for congenital heart defects, in teaching people about obedience, in bringing Glory to God.

Happy first birthday in heaven, sweet girl. I’m celebrating you.

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