Dear Senator Walsh

Writer’s note: The senator has issued a statement which shows remorse for her comments. She acknowledges she was out of line. This post will remain with some edits to serve as a tribute to all nurses.

Source: https://www.usatoday.com/story/news/nation/2019/04/23/maureen-walsh-apologizes-shadow-nurse-over-playing-cards-remark/3547620002/

Dear Senator Walsh,

I thought you might benefit from some insider information into the lives of nurses.

I am not a nurse.

I am just a regular person who happened to live in a hospital for a total of four months by my daughter’s side. My little girl’s name is Sylvia. She was born with severe Congenital Heart Disease.

I would love to give you some insight into how the dozens and dozens of nurses whom I met spent their time (in between card games).

The same nurses who sustained her life with countless medications, needed at countless time intervals.

The same nurses who knew her first Christmas would be spent in a hospital crib so they dressed her in a beautiful red dress and hat to surprise me.

The same nurses who had infinite patience for my constant questions.

The same nurses who many days never sat during their 8-12 hour shifts.

The same nurses who forwent their. Lunch breaks to stay by my side.

The same nurses who would drop a minute to exhale in a flash to help a nurse in another room.

The same nurses who looked to me first as the person who knew Sylvia best, always validating my role in her care as the mom.

The same nurses who not only cared for my baby girl, but also kept track of my sleeping and meal schedule, encouraging me to practice self-care so I could best care for my daughter.

The same nurses who cried with me when we were told Sylvia’s major surgery did not go well and she would need to be placed on ECMO.

The same nurses who painted her nails and put bows on her head while she laid in a bed, motionless, on life support.

The same nurses who hoped with me that her native heart function would heal.

The same nurses who mourned with me when we realized that wasn’t going to happen and Sylvia was listed for a heart transplant at seven months old.

The same nurses who waited in palpable anticipation for the call that a heart was available.

The same nurses who gathered around me when I found out Sylvia had a massive stroke. My husband hadn’t arrived from work yet, and they sat with me, across from the doctors, cried with me, and asked all the right questions when the anguish of my heart made it impossible for me to speak.

The same nurses who became my family, because four months of living in a hospital and having only them to talk to will do that.

The same nurses who spoke to my baby girl everyday, who played her music, who read her books, even though all she could do was lay there, eyes shut, for months.

The same nurses who crocheted baby sandals for her tiny little feet.

The same nurses who went up against doctors when they had to because advocating for Sylvia was more important than agreeing with a superior.

The same nurses who always made sure they had a heated blanket ready when the monitors showed she was getting stressed.

The same nurses who helped save her twice when she coded in front of my eyes.

The same nurses who celebrated with me when there was a victory and lamented with me when there was a setback.

The same nurses who would turn my daughter’s body for her because she couldn’t.

The same nurses who would contact each other on their days off to find out how Sylvia was doing.

The same nurses who came in on their day off when word spread Sylvia’s body was too tired and it was time to take her off life support.

The same nurses who watched as our family members, including my two-year-old daughter, kissed Sylvia goodbye.

The same nurses who passed my daughter to me for the last time.

The same nurses who watched as my daughter took her last breath in my arms.

The same nurses who bathed Sylvia’s lifeless body, cleaning wounds of the brutal battle she fought so well.

The same nurses who wrote testimonials of her strength and grit for my pastor to read at her funeral.

The same nurses who carried her casket in the church and cemetery.

The same nurses I still love and speak to two and a half years after Sylvia’s passing. Because we endured hell together.

Because we loved Sylvia together and we miss Sylvia together.

Because I know they wish they could change the crippling despair I have that stops me in my tracks every single day.

Because without them, I would not have been strong enough.

Senator Walsh, we live in a world where assumptions abound. This type of behavior almost always results in the disrespect of someone.

In this case, you’ve disrespected nurses.

And that means you’ve disrespected my family.

Shame on you.

Part of me is glad for you. Comments like these are heavy with naivety and inexperience. It implies you’ve never had to experience the up-close life of a nurse. I am thankful for the good health you and your loved ones have experienced. I challenge you to educate yourself on the experiences of others who haven’t been so blessed.

If that hasn’t been the case, your comment can then only be one of ignorance or manipulation to further your political agenda. As a senator representing so many who have been blessed by nurses and even nurses themselves, you need to get your act together.

I am appreciative you’ve acknowledged being out of line. Although I understand you were talking about a specific subset of nurses, these comments were offensive to men and women everywhere who wear the title “nurse”. In general, this is a profession that deserves way more respect that it is given, and we all could do a better job at that.

After all, I doubt the hands they are dealt on a daily basis are ones most of us could handle.

*This site does not necessarily reflect the views of Faith Lutheran Church in Troy, Michigan.

*This is not a political post. This is a humanity post.

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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