THE SCHUETZ TROUP IS GOING ON VACATION!

You guys.

We haven’t been on a family vacation in a long time.

To be honest, we have never been on a “family” vacation.

Lilly was born and we were caught up in a whirlwind of new parenting, I was still teaching, and then I got pregnant with Sylvia

We kept saying, “the summer after the new baby is born we will go.”

Well. The summer after she was born was the summer she’d end up on life support, waiting for a heart transplant.

I kept telling Evan that after she got her heart and we got home, we were going to take the most amazing vacation and celebrate the blessing of more time with her.

After we came home without her in our arms, I couldn’t even bring my heart to consider something like that.

It felt wrong.

One of the worst parts of being a grieving family is that every single thing that excites you also makes you profoundly sad.

But it’s time.

Lilly is almost four and a half and is in a beautiful stage of starry-eyed appreciation for the world around her. She’s seen more hurt in her short life than most ever will, and she needs to make happy memories alongside the sad.

Rowan is the easiest-going baby and is just happiest being with his people, so traveling with him is something to which I look forward.

Evan and I need to exhale, together, somewhere else.

We need the time together, away, never forgetting Sylvia and always keeping her with us in our hearts, but also allowing ourselves the opportunity to enjoy a “normal family” activity as well as we can.

After reading some of my writing and hearing of Sylvia’s story, a beautiful, family-owned beach resort in mideastern Michigan offered us a stay in one of their luxury apartments right on Lake Huron.

The interaction I’ve had with the owners already has left me feeling so taken care of, and we aren’t even there yet!

Sam and Nada are a married couple and proud parents of twin boys, who took over Crystal Sands Beach Resort in 2014. Upon purchase, they poured their hearts into its renovation. The results are astounding and I can’t wait to see the beauty in person. The pictures alone make me not want to ever leave!

Their passion for property and commitment to their guests’ experience is already evident and I can’t wait to meet them, hug them, and thank them for this opportunity for our family.

These are a few pictures from their official Facebook page and I am so excited to share some of my own while we are there. I’ll be sharing parts of our experiences throughout our trip.

Thank you so much, Sam and Nada! We can’t wait to be your guests in August!

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You are Safe in My Heart

Caleb + Kelsey are a dynamic singing duo. A wife and husband team, they use their God-given talents to cover both secular and Christian songs.

Their music is beautiful. I first discovered them when a video of their immaculate mash-up of “Oceans” and “You Make Me Brave” popped up in my Facebook Newsfeed. These are two songs to which I’ve particularly clung both during Sylvia’s life and in the aftermath of her loss.

It only took a few seconds into the song and I was so thankful for the Spirit’s inspiration given to them to share their love for music in this form.

There are so many songs that mean more to me as a grieving mother than they ever did before. I have found songs I’ve known for years and to which I’d never give much thought have now taken on a brand new meaning. As I frequently put it, “they’ve become about Sylvia.”

One song I never thought would hold such deep meaning for me is Celine Dion’s “My Heart Will Go On.”

Before Sylvia, those first few, instantly recognizable notes would evoke images of icebergs, a gaudy diamond, and Rose and Jack clinging to to the door of a wardrobe.

But then I heard it for the first time as a grieving mother.

It came on automatically one day while listening to Caleb + Kelsey’s Spotify channel. I was on my way to therapy, without the kids, and blaring their music as loudly as I could, both in praise to the Lord and also as a sort of “screw you” to Satan because he always likes to mess with me on my way to get the help I need.

My instinct was to skip to the next song because I wasn’t really in the mood for an internal Titanic montage, but something stopped me.

And before I knew it, I was parked on the side of I-75, bawling, listening to a song that I never thought would affect me emotionally, and all of the sudden it became so much more than a 90s throwback:

It became Evan and me talking to Sylvia.

Below, through tears and gasps for air and anger and jealousy and confusion, I have broken down the lyrics and shared the internal “conversation” I have with her whenever this song comes on the radio or into my heart.

I encourage you to listen and/or watch Caleb + Kelsey’s rendition of the song that changed it for me forever:

I’m going to be honest. This is one of the more difficult pieces I’ve shared about my daughter. It is incredibly intimate and exposes a gaping wound that I think some people (ignorantly) believe “should be healed by now”.

But that’s not how grief works.

And that’s certainly not how parenting works.

I write these pieces for myself, but I share them for her, to keep making Sylvia footprints on the earth, and to allow her to keep impacting the lives of others.

Every night in my dreams, I see you, I feel you That is how I know you, go on

There are few dreams I have without you in them. When you’re there, it is usually in a hospital bed and, as difficult it is to “see” you back in those circumstances, I have a renewed sense of hope.

Then I wake up. And I’m reminded.

And I lose you all over again.

Every night. Every. Single. Night…I close my eyes both terrified I will dream of you, and terrified that I won’t.

Far across the distance, And spaces between us, You have come to show you, go on

There are days when the weight of the physical distance between us is so heavy on my heart that I hardly know how to put one foot in front of the other.

Every purple sunrise and sunset. Every purple flower, sprinkle, or balloon that were unplanned, yet perfectly presented at the right place and at the right time, they stop me in my tracks.

No one knows exactly how it all works except the Creator. Heaven is a party, free from pain and sadness, so I believe you are free from the bondage of the ways of the world. As much as it hurts sometimes, I know you must not see me. How could you witness the depth of my grief and still be free from sadness? I do believe you are excited to see me again, and that while you wait, our God, our Father, loves us both and may intentionally send me little reminders of your current state of bliss and the beauty of our reunion to come.

Near, far, wherever you are, I believe that the heart does go on

I know exactly where you are.

And because I know that, I know that your heart DOES go on, and not the heart that was born from sin, ridden with an illness that would take you from me–but the heart of a saint, washed clean by the blood of Christ, that waits eagerly with Him for me to get Home.

Once more you open the door, And you’re here in my heart and my heart will go on and on

You are present to us, Sylvia. You are not a “was”; you ARE.

You ARE our daughter.

You ARE desperately loved.

You ARE profoundly missed.

You ARE here in my heart.

And that will never change.

Love can touch us one time, And last for a lifetime, And never let go till we’re gone

Your earthly life was short, but there is nothing about the love of a parent that needs a “warm up” period. Parents don’t slowly “fall” in love with their children–at least we didn’t.

You had every nook and cranny of our hearts in an instant.

The amount of time you were here is irrelevant. Even though we did not get your lifetime with you this side of heaven, you, my sweet girl, have ours. We will never go a day without loving and missing you.

Love was when I loved you, One true time I hold to, In my life we’ll always go on

Because of you, your daddy and I had and continue to have the honor of experiencing one of truest and most intense forms of love of which human hearts are capable.

The fight to save you triggered a part of our hearts we otherwise may not have known. I hate that we did not succeed in keeping you here with us, and I wish every second you were here, but you gave us the closest experience of Christ-like love we could ever have in this world.

You have forever altered our perspective on what it means to love and have single-handedly affected the way we approach our relationships with others.

You’re here, there’s nothing I fear, And I know that my heart will go on

The only solace I have is that you are Home, you are free from pain, and I will be there with you. I dread forever without you, but I don’t have to fear eternity without you.

I’ll see you there.

We’ll stay forever this way, You are safe in my heart and my heart will go on and on

Despite the time between us, my love for you will never lessen. You are forever apart of me. And even though the rest of the world keeps spinning, mine stopped the moment you stopped breathing.

My heart is the safest place you could ever be, because it will never, ever give up on you, on your memory, on your legacy.

On the days I wonder if anyone else remembers to say your name, my heart is shouts it.

And while this world, full of Satan’s antics and sadness and pain, tries its very best to make me focus only on the hole your passing has left, I know that you, and all the beauty you were and all the memories we made together, are safe there.

Because I will fight just as hard for you in my heart as I did while you were in my arms.

Always.

~~~~~~~~~~~~~~

I’m thankful for this version of the song. It is one that most hear as a husband and wife, but I hear it as a mom and a dad.

As my husband and myself.

There are so many things I wish I could tell her, and even though words are usually what I’m good at, sometimes they get stuck. I am so grateful when my tears are louder than my voice, I have found comfort in the artistry of someone else.

I miss you, Sylvia. I love you always.

Thankful for the Tears

Rowan’s front teeth are working their way through his gums.

He is in pain. There has not been much sleep. My arms are rarely without him as they seem to be the only place able to provide even the smallest comfort.

There have been teethers and Tylenol and tears…lots of tears.

And I can’t tell you how many times I stopped today and whispered, “Thank you for these tears.”

The last time I had a child who was cutting teeth, I was not alerted to it by a change in her temperament, appetite, or sleep pattern.

There was no excessive drool, groggy mornings, weird bowel moments, or endless whimpers.

I only knew because the nurse who was cleaning out her mouth to prevent infection told me.

I didn’t do the normal mom thing and automatically stick my finger in a drooly, pink, pouty bottom-lipped mouth to feel around.

I sanitized, put gloves on, opened the pale, still mouth of my baby girl, and felt the tops of her two bottom teeth beginning to break her dry gums.

It is so difficult to see Rowan restless, crying, unhappy and in pain while he teethes.

It is nothing compared to seeing Sylvia on life support, lying in a bed, motionless, voiceless, completely unaware she was even getting teeth.

How did I get here?

How did I get to a point in my life where I rejoice in the physical suffering of my child simply because it means he is here?

Grief and perspective are not mutually exclusive. The loss of a loved one will always evoke some sort of shift in one’s life focus. Some fight against the shift and some embrace it.

As I try every day to do the latter, I actively pray for moments that are heavy with sadness to also bear the fruit of gratefulness.

Today I spent a lot of time angry that something as trivial as teething has become so emotional for me, angry that most parents will never have more than the stereotypical “teething is rough” experience, angry that I never got to see Sylvia’s smile with those two little teeth who were fighting so hard along with the rest of her body.

But I’m also thankful.

I’m thankful for Rowan’s tears.

I’m thankful I get to stay up late and hold him.

I am thankful it is the love of my arms, and not record-setting amounts of sedative, that comfort his pain.

I am thankful I can hear his cry and that his eyes can meet mine when I tell him it is going to be okay.

I get to tell him it’s going to be okay.

I am thankful that some day soon, he will flash me the smile that God copied and pasted from the joy of his big sister in heaven, and I will get a glimpse of what I lost.

I am thankful for the tears.

A Blurred Focus

There is always rain.

Day after day, hour after hour. Always rain.

Something happens when your child goes to heaven before you; a cloud is cast over your entire world and its darkness seeps into every crevasse of your existence.

It’s a heavy cloud, dense with the intricacy of grief, of the unnatural journey that is life without your child. It constantly drains because it is never without substance. Some days it’s a sprinkle and others a storm.

But there is always rain.

On one of my personal rainier days as of late, it happened to be raining outside as well. I sat in my car, in the parking lot of my church, while I waited to pick up my daughter from preschool.

A Canadian goose landed on the roof of the church, right on the point. Having been sitting in the parking lot for quite some time, I was easily amused by this.

I lifted my phone to take a picture and as I attempted to capture the moment through the glass of my windshield freckled with raindrops, my camera was having trouble focusing and my pictures kept turning out like this:

Annoyed, I just stared out the window.

Everything was gray. Everything was soaked. And it wasn’t much helping my mood.

I did what people do in 2018. I turned back to my phone to distract me from my despair, to find its contents only amplified it.

My therapist often puts me on “scroll bans,” meaning he discourages me from scrolling through and emerging myself in social media. Want to talk about triggers? Give me five minutes actually looking through Facebook, at all the pregnancy announcements, the heart kids doing well, the heart kids not doing well, the complaints about trivial things. Give me just five minutes. I will be all PTSD and it will take a significant amount of time to get me back to functioning status.

However, on this day, I ignored Therapist’s voice in my head. I scrolled.

And the rainy day turned into a Dark Day.

Dark Days.

These are the days I can’t catch my breath.

These are the days my heart can’t catch up to my reality.

These are the days my senses are consumed with flashbacks, regrets, and what if? vortexes.

These are the days dinner isn’t always made.

These are the days my best friend realizes are happening just by the length of time it takes me to text back and the terse content of my messages.

These are the days Evan knows he may have to do bedtime alone.

These are the days I hide in my car while I cry so Lilly doesn’t witness how wholly and violently the cloud has overtaken me.

These are the days P!nk’s “What About Us?” plays over and over in my head as I wonder why Sylvia? Why her? What about all of the moments I will never get? Where have You been? Do You not see me on my knees? Did You ever?

These are the days I scream at Him.

As the cloud’s density poured over me, my tears began to fall. My breathing hastened. My throat swelled. My stomach ached. My hands shook.

I had a million things to say to Him. And I was ready to belt them out.

I did what I do every time I let Him have it.

I looked up.

Except this time I wasn’t in my bathroom.

I wasn’t in my barn.

I wasn’t even parked in the bleakness of the garage or the side of the road.

I was in the parking lot of my church.

When I looked up, it wasn’t a ceiling or wall I saw.

It was the cross.

It was the answer to every question with which I was ready to challenge Him.

Because on the Dark Days, when I wonder where He is, where He has been…I can always, always meet Him at the cross.

Because on the Dark Days, when the rain and the fog and the pain and the guilt hinder my vision and blur my focus, I know the cross is still there, beyond the cloud.

I stared at it, overcome by how such a simplistic piece can hold such significant meaning.

Tears fell from my eyes and as I buried my face in my hands, all at once broken and whole, my phone dropped to the floor. I began wiping my face and as my vision cleared, I picked up my phone to set it on the seat.

I looked down and, somehow, in the fury of my emotions, my photo app was opened, and on my screen was this:

While attempting to take pictures earlier, I hadn’t realized that my camera had captured one picture that focused not on the drops of rain, but on the cross.

The cross never moves.

“In this world you will have trouble…

There is always rain. But because of the cross, the rain won’t always be.

…but take heart! I have overcome the world.” John 16:33

There is always the cross. And the cross, and all that it means, all that it promises, is eternal.

So while I am here, the rain will still fall. It’s impossible for it not to. My daughter has gone before me and I will miss her forever. I will long for her forever. I will grieve forever. There will be days it is difficult to see the cross beyond the rain.

But it will always be there, regardless of the rain this world puts between us.

And because the cross is beyond the rain, there is a life beyond forever.

So I wait in the rain, to see the Son, to see my daughter.

“He will wipe every tear from their eyes.” Revelation 21:4

To the woman behind the man behind the mask: An open letter to the wife of my daughter’s heart surgeon

This letter is dedicated to all spouses and family members of pediatric cardiac surgeons who give up so much to give us so much. 

To the woman behind the man behind the mask: An open letter to the wife of my daughter’s heart surgeon

My daughter took twenty-three days to recover from her first open-heart surgery. I was able to say thank you to the man who performed that surgery dozens of times. He was there twenty-two of twenty-three days, most of the time twice a day, to check on her recovery. He was always there, standing next to my husband and me, watching her monitors with us, answering our countless questions. He was always there and, together, we celebrated her milestones and lamented her setbacks. He was always there, not only making sure that she was okay, but also making sure that we were okay.

That man is your husband, and he was always there.

My daughter was constantly surrounded by an incredible team of nurses, clinical care coordinators, technicians, and nurse practitioners. She had an entire team, and I am eternally grateful to all of them, but his visits were the visits I appreciated the most.

He had saved our daughter’s life and with that, he earned our trust forever, and so it was him we looked to when trying to decide what was best for her.

I remember the moment it dawned on me. He was in the ICU next to my husband, standing the same way my husband does: tall, strong, with his arms crossed. They were talking, but never looking away from her monitors. They both had their eyebrows furrowed while discussing a respiratory setback. He was in this with us. We were not there alone, and I was thankful.

That is when I noticed his wedding ring and it hit me. Because he was there was us, he was not there with you.

That was the day that I realized everything you must do so that your husband could be standing next to my husband.

That was the day I began praying for you, and I haven’t stopped.

There must be so many times it is hard to be married to a hero.

When his pager goes off while you’re finally out to dinner, you bury your disappointment.
When he misses saying goodnight to the kids, you bury your annoyance.
When he is so transparently going back over the last patient’s chart in his head instead of listening to the story you’ve been waiting to tell him all day, you bury your hurt.
Oh, the magnitude of what you must bury!

But you do it.
Because you know.

You see it on his face when he comes home from a successful surgery. You hear it pour through the voices of parents in the thank you cards you hang on the wall. You see it, and you hear it, and you remember.

You married a hero.

You know that while he is absent for some of your kids’ firsts, he is giving my daughter a chance to have firsts.
You know that while you’re missing him for today, he is preventing us from missing our daughter for a lifetime.

You bury it…because you know that burying it may very well mean we won’t have to bury our daughter.

There must be so many times it is amazing to be married to a hero.

When I look at my daughter’s scar and whisper a prayer of thanks for your husband, I also whisper a prayer of thanks for you.

When I think of our newly expanded family, our heart family, made up of so many wonderful people trying to save her life, you’re such an important part of that picture.

I know that in the intricate puzzle it takes to keep my daughter alive, you are an indispensable, invaluable piece.

Thank you is not enough, but it is all I have.

Thank you for allowing me to get to know your husband for the chance to get to know my daughter.

Thank you for every smile that comes across her face, every wiggle of her toes, every breath she takes.

Thank YOU.  Your husband is our hero, and I am sure he would say that he couldn’t do it without you.

Without you, we may not have her. You have blessed us greatly, and we are forever grateful.

Sylviascar

From my broken heart to yours, the day before you were born.

I wrote the following letter to Sylvia the day before our scheduled c-section. I share it because I have been blessed to get to know several heart moms throughout this journey and I don’t know what I would have done during my pregnancy if they hadn’t been so willing to share with me. I have quickly realized how small and loving the “heart family” community is. Part of my mission now is to continue the blessing of sharing in hopes that Sylvia’s story might help even one person, within or outside the heart community, whether her story gives hope to a set of parents hearing for the first time their child has a chronic illness, or even helps someone change their perspective on life’s trials and blessings. Sylvia has, is, and will do amazing things through the power of The Lord, and I am so thankful He chose me to help her accomplish them. 

 

Dearest Sylvia,

Tomorrow is your birthday and I am both ecstatic and terrified to finally meet you.

The day I found out I was pregnant with you, so many wonderful daydreams surrounding your birth flashed through my mind. I pictured holding you tightly as you learned how to nurse and woke up to the world listening to the voices of your daddy and me. I pictured your big sister holding you for the first time, kissing your forehead and giggling about how cute you are. I pictured family and friends gathered in our hospital room, passing you around and marveling at your ten tiny fingers and ten tiny toes. I pictured your baptism at church, wearing the same gown I wore, your sister wore, and a big celebration with loved ones after. I pictured the most beautiful tomorrow and so many tomorrows after that.

But tomorrow will be different.  Tomorrow I will get to see you, and maybe hold you, for a few seconds before you are taken to intensive care. You will wake up to the world hearing the nurses’ voices and the beeping of the many machines that will track your stability. Your big sister will meet you in a few days, but there will be no holding or kisses because you will be hooked up to your machines and we need to protect your fragile immune system from germs. I’m sure she will still think you are very cute. There will be no big gathering of loved ones in our room. In fact, we won’t have a room. You and I have to have separate rooms while I recover, but Daddy will be with you and I will visit as much as I can. We will only be able to allow one or two people in at a time to meet you. We have limited it to immediate family members because they need to be vaccinated in order to protect you. They will not be able to hold you and will have to wear masks as they look at you from a distance. I’m sure they will still marvel at your ten tiny fingers and your ten tiny toes. There will be no baptism at church. You can’t be in public until your big heart surgery later this year. Our family’s white gown will be replaced by a white hospital onesie as our pastor is coming there to baptize you “just in case.” Even though there won’t be a party with lots of people after, your daddy and I will be celebrating at your bedside along with the angels in heaven.

Many might think your CHD journey begins tomorrow, but that is not true. From the moment you were formed, you began fighting. You fought to keep growing even after your heart cells divided so uniquely that even some of the world’s top doctors are amazed by how special they are. You fought when your heart went into distress at 32 weeks and we were in the hospital praying it would settle down so that we wouldn’t have to deliver you prematurely.  You fought to grow beautifully into a full term baby after that.

You were always a fighter.

You haven’t even taken a breath yet and you are one of the strongest people I will ever know.

So even though tomorrow and many tomorrows after will not be as I pictured, I can easily imagine you overcoming so many obstacles that will soon stand in your way. I can picture you thriving and defying, conquering and fighting. Because that is who you have been. Because that is who you are. And that is a beautiful picture.

This beautiful picture is who you are because this is how you were created. The moment you were formed, God had His hand over you, giving you this strength, and He will never leave nor forsake you.

So we need you to keep fighting. Your daddy and I will be there every step of the way, doing whatever we can to help you fight. By the grace of God, we will be given the tools to do so, and we will help you live out the incredible story He is writing for you.

Tomorrow will not be easy. It will not be what we expected. But tomorrow we get to see the face of a our little warrior, a face that will bless so many people, especially us. Your life has been and always will be one we will celebrate every single day with thankfulness and hope in our hearts.

We are proud of you. We love you so much, little fighter. Keep fighting.

Love,

Your Mama

 

It doesn’t feel like Christmas

It doesn’t feel like Christmas.

I am sure many of you aren’t surprised to see me make this statement. Day 10 of who knows how many days in a hospital room, staring at my brand new daughter’s monitors, praying, willing for her oxygen levels to stop dropping doesn’t exactly spark the warm, Christmasy spirit I’m known for around this time of year.

It seems this year that I am not alone in my lack of “feeling” the Christmas cheer.

This year, as I scroll through my Facebook feed, I see an extraordinary amount of statuses expressing the same sentiment, that this year just doesn’t feel like Christmas. Some of these lamentations stem from the lack of snowy white flakes falling from the sky, or even a crisp winter chill in the air. Some stem from a deep hurt as a result of spending a first Christmas without a loved one. Some stem from a stressful pile of life’s problems that seem to stack on top of each other during the most inopportune time.

Dear friends, I get it. Trust me. I’m feeling it too. I’m feeling the lack of feeling.

It is hard to feel like it is Christmas when the glow of our fireplace and tree is replaced by the light and beeps of monitors.

It is hard to feel like it is Christmas when the warm smells of baking cookies and balsam candles are replaced by the harsh scent of Purell and latex gloves.

It is hard to feel like it is Christmas when the familiarity of my home open to loved ones during the holidays is replaced by a revolving door of strangers coming to perform exams and tests.

It is hard to feel like it is Christmas when I have no idea what it feels like to hold my brand new baby without wires and tubes restricting our access to each other.

It is hard to feel like it is Christmas when I want to be putting pretty dresses on my daughters and myself to go to the candlelight service at church and instead I’m wrapping Sylvia in another hospital blanket.

It is hard to feel like it is Christmas when tonight I have to choose between my daughters: do I wake up with Lilly at a hotel or do I wake up with Sylvia at the hospital?

It is hard to feel like it is Christmas when no matter where I am, I am not whole.

It is hard to feel like it is Christmas.

And yet, it is. It is Christmas. Because regardless of our circumstances, the date doesn’t move. Because regardless of how much we want to give up, the season doesn’t end. Because regardless of how we feel, Jesus never changes.

Jesus never changes.

My church’s mantra during the holiday season is, “Grace has come.” Grace: the unearned love of our Heavenly Father. This is the season we celebrate grace coming in the form of a baby. And regardless of how it “feels” this time of year, grace still comes. Jesus still comes.

So, will we be celebrating Christmas? Yes. How? By remembering that Jesus doesn’t change. By thanking Him for coming even when we didn’t deserve it. And in that way, we should celebrate every single day.

Presents and baking and fires and hot chocolate will happen. It might not be for awhile, but we can wait for all of those things.

Thanks be to God we don’t have to wait for grace, for forgiveness, for Jesus. He is already here, and that will never change.

He never changes.

Merry Christmas today and every day.