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

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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.

A big finish. A new beginning.

I remember how I am supposed to feel. The day my pregnancy app alerted me that I had entered the third trimester when I was pregnant with Lilly, I was absolutely paralyzed by excitement. Pregnancy is a long journey, and I just remember looking at my phone, realizing I was in the home stretch, and experiencing the sensation of overwhelming, breath-taking anticipation that soon I would meet my baby. I began wishing the weeks away, anxious for any sign of labor, constantly day-dreaming of the moment she would be placed in my arms for the first time.

This morning I woke up to the same notification. “You made it to Trimester Three! Get ready for the big finish—and new beginning!” This morning I woke up, paralyzed yet again, but this time for a different reason. Fear.

I don’t want to get ready to finish this pregnancy. This pregnancy means her heart can stay just as it is and work adequately enough to sustain her. This pregnancy means she stays with me. This pregnancy means that I can feel her every move.  This pregnancy means she is safe.

This pregnancy means I can still protect her.

I don’t want to get ready for a new beginning. A new beginning means a sweet, but very brief moment in my arms before she is taken away to the NICU. A new beginning means wires and tubes and monitors. A new beginning means wondering every moment if her body is working properly because I can no longer feel her reassuring kicks. A new beginning means an all-out war against germs since infants with heart issues will be met with much more severity if they get sick. A new beginning means that our next step is an impending, complicated surgery.

A new beginning means I can no longer protect her.

These feelings I have are very real. I would even go as far to say they are very justified. Emotionally, it will be impossible for me to completely separate myself from them.  I also know they, to some extent, are lies.

It is true that this new beginning will mark the commencement of that very scary list. It is true that we have an intimidating, murky path ahead of us that will challenge our patience and our trust. What is not true is the sense of control I currently have over her well-being.

It is easy for pregnant women to feel in control over the babies inside of them. After all, our bodies are all that separate them from the outside. Where we go, they go. What we eat, they eat. What we say, they hear. They benefit when women take care of themselves during pregnancy. They suffer when their moms make poor choices. It all appears to be a very maternally-controlled situation, and while the choices mothers do and do not make have a direct impact on their babies, ultimately control belongs to their Creator. The same Creator who once formed the very mothers who carry them.

I look over at our beautiful 19-month-old daughter, Lilly, and realize that because she was born without defect and has been mostly healthy during her life, I have developed a false sense of security in my own ability to keep her safe. The truth is that I have the exact same amount of control over her as I do her sister inside of me. Her Creator is the same Creator who now holds her sister in the palm of His hand.

How often do we, as Christians, find ourselves believing that we have control over our circumstances? Think for a moment how quickly some of the most iconic Biblical figures believed they were in control and how much quicker God reminded them they weren’t. Moses tried to use a speech impediment to exercise control over his circumstances. Jonah thought he could hide on a boat. It is amazing the silly, humanistic things that give us such security.

So what do we do with this, then? We are not in control. God is. That’s scary, right?

Well, it can be scary to let go, but I will bring it back to the context of our baby and explain what I’m doing with it.

The fear I have about my daughter is real. It is justified. It will never completely go away. God not only expects that fear, but He understands it. He knows his children and knows we need reassurance of His presence in times of trouble. That is why He addresses it many times in Scripture. Here are a few of my favorite verses that speak to this:

“God is our refuge and strength, a very present help in trouble.” Psalm 46:1

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

“So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

“The righteous cry out, and the Lord hears them; he delivers them from all their troubles.  The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:17-18

These verses comfort me greatly, yet I still find myself wanting to be the one in charge of her security. But if I was in control, truly in control, what could I do for her?

Absolutely nothing.

What can the all-powerful, all-knowing, almighty God do for her?

Anything and everything.

Her Creator is the same Creator who formed the oceans and the mountains.

Her God is the same God who parted the Red Sea to save the Israelites.

Her King is the same King who silenced “king” Nebuchadnezzar.

Her Protector is the same Protector who sheltered Daniel in the lions’ den.

Our daughter is His daughter.

Sometimes I like to play “Bible Roulette”. There are times I know I need to be in the Word, but don’t know where to go, so I will just open up the Bible and read the first verse I see. Yesterday, I believe the Holy Spirit led me to Proverbs 23:26 which says, “My son, give me your heart and let your eyes keep to my ways.” Incredible.

So here I am, giving Him her heart, giving Him my heart, and praying I can sing His praises through it all. While my fear may not subside completely, I am praying the Lord’s name over the paralysis it is causing my excitement.

We are in the third trimester, getting ready for the big finish and the new beginning. Praise be to our Lord Jesus Christ who finished the battle with sin and death and began for us a new beginning, redeemed and forgiven in His name.