Showing posts with label heart disease. Show all posts
Showing posts with label heart disease. Show all posts

Wednesday, November 1, 2017

A Ministry I Never Wanted


When I was in college I spent many hours listening to talks and reading books about giving my all for Jesus. As I listened to seasoned missionaries like Helen Roseveare and passionate pastors like John Piper, I was challenged to consider my comfort zone and flee from it for fear of passivity in the urgent call of Christ. I was deeply in love with Jesus because He had pursued me for many years as ran with all my might away from my church upbringing. As my heart softened to Jesus in college, I began to desire to live a life that honored Him. I started considering where God would use me. I knew from scripture that many who followed Christ went to hard places and went through challenging times. My worldview was being shaped by legacies of Christian missionaries like Nate Saint, Jim Elliot, and Dietrich Bonhoeffer. I needed these challenges to my Americanized view of comfortable Christianity. 

I remember telling God in tears in my dorm room, “I will go anywhere you send me with whomever you choose.” I thought I was offering my whole heart and life. I thought I knew what a mission field looked like and I felt ready for this challenging call of Christ to take up my cross.
I would find myself thinking about the kinds of hard circumstances I might be called to at some point in my life. My limited view imagined that God might call me to live without air conditioning, far from my family, for the sake of The Gospel.

So, it was clear that I desperately needed the challenges of other spiritual giants to get out of my very limited comfort zone. I thought that my worldview had exploded to include the huts in a country without proper toilets. I thought a difficult calling was limited to ministry in the inner city or with a tribe in Africa. I can say with firsthand knowledge that ministry in both of those places is extremely difficult but once again, my scope of calling, ministry, and challenging was extremely narrow.
My view of calling and ministry has expanded with years of walking with Him. I have now seen that God often gives us ministry opportunities that we never asked for and certainly never wanted.
For example, when I approached my late twenties as a single, I thought, “For sure I’ll meet my husband soon. All my friends are married.” When my friends started having their second and third child I thought, “He must be on the horizon.”

But, that wasn’t the case. When my heart was broken at the age of 31 by a man I thought I would marry, God gave me a ministry I never wanted. What I wanted was to be married and raise children but God, in His sovereign goodness, gave me women with broken hearts to walk alongside, study scripture, and do our lives together.  He gave me opportunities to use the pain, rejection, and tears. My worldview about ministry opened again. Living many years of singleness and ministering out of that stage of life was incredibly rewarding but also vulnerable and painful. And, I certainly hadn’t asked for this season of prolonged singleness.

Fast forward a few years and God called me to a new mission field called the Cardiac Intensive Care Unit. I never dreamed of spending nine months in a hospital with my very sick son. I remember holding him and thinking about that same hut in Africa that terrified me as a new Christian. I remember wishing to be in the hut far from the pain I was feeling seeing my son hurt. Once again, God gave me a ministry I never asked for or wanted. I can’t say I did this unwanted ministry well on most days for it was consuming emotionally and physically simply being a mom to a critically sick baby but I have a few select memories of God working through my presence in this unlikely mission field.

I held a mom as her son’s heart rate fell to zero and the code alarm sounded. I prayed for so many heart babies and families whom I would never had known without the calling to the heart unit. I prayed for my own son and sang songs to him about our big God. I told him of heaven and he was my ministry. I wouldn’t trade that previously unwanted mission field for the world, no matter how painful.


Now that we have lost our son, I find myself with a new ministry. Once again this is a ministry I did not want or ask for. I never wanted to be in the “I lost a child” club like the rest of its members. In the year since losing our son, people will reach out to me because they have a sick child, they have lost a child, or a close friend has lost a child. I don’t have magic words but I am honest, vulnerable, and cry real tears with them. I don’t try to suppress their pain with fluffy words or put a quick band-aid on it with a verse out of place. I simply hear their stories, share mine, and together we feebly try to see the hope only found in Jesus.

I’m guessing that God has given most of us ministries we never wanted. I can think of a few just amongst my friends.

Folks like the…

Foster parents who are offering their hearts to the unknown for the sake of the children.
Single women giving their everything for Christ and not settling for less than God’s best.
Teachers who bring in extra supplies and deeply love their students.
Nurses who do their very best even when they are bone tired.
Divorcees who choose to engage in church and love on others even when their lives have been torn apart.
Parents taking care of chronically sick children.
Pastors who come to your side during all the beautiful and horrific things life brings.
Families who are pursuing adoption after long battles with infertility and miscarriages.

While I still am unsure about this ministry with hurting families of child loss, I am honored that God would use my broken heart once again in the lives of others to bring glory for His namesake.

For all of you stepping into ministry moments that you never wanted, I am right there too and I see you. Most importantly God sees you and He’s equipped you, even if you never asked for it!

To God be the Glory


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Monday, July 17, 2017

He Should Be Two Years Old

Hudson Taylor Alexander Sylvestre
July 17, 2015-March 20, 2016





He should be two. He should be running. He should be saying, “Mama” and squealing with all his might. He should be having tantrums in Target and stealing his big brother’s toys. He should be wearing hand me downs from big brother. He should have been at the water park with us last weekend. He should be in every family photo. He should be slightly shorter than big brother with slightly darker, crazier hair. He should be growing taller and losing some of his baby rolls. He should be grinning ear to ear and running down the stairs when daddy gets home. He should be in the bathtub splashing his big brother. He should be promoted to the two year old class at church this Sunday. He should be friends with all those cuties. He should be sharing a room with his big brother. He should be hiding while we are seeking. He should be singing, “Wheels on the Bus” and learning his alphabet. He should be saying silly words and pronouncing words in his own way. He should be refusing to eat his dinner and getting gum in his hair. He should be mixing the playdough colors together to make them turn that yucky brown. He should be under my feet as I try to cook. He should be leaving his shoes in the hall so to trip to me and daddy.  He should be the little brother to his big brother. He should be at weddings and on the farm with grandparents. He should be asking for more “Daniel Tiger” and ice cream. He should be buckled in his seat at dinner time. He should be learning about God and singing, “Jesus loves Hudson, This I know.” He should be the youngest cousin to the big ones in the pool.  He should make us a family of four when we go out to eat. He should now get his own seat on the plane. He should be in my arms and not just my heart. He should be two.






Thanks so much to these sweet new friends who did a party in the park for our precious Hudson! That just meant the world to me!!!


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Monday, July 3, 2017

Always Thinking for Our Boy

Several months ago I was cleaning out my inbox and I moved an email to Hudson’s folder. I had a quick thought, “I’ll show this to him one day.” I can’t explain why my brain does that. I am very clear that my son is in heaven. I miss him every second of every day. I’m consistently aware of his absence and where he would be sitting at the table, in the grocery cart, in the back seat, at church, etc. But, randomly I have these moments like the one with saving an email for later. I can’t explain why this happens but it does and it catches me off guard. I don’t think I had ever mentioned this happening to Corey and then yesterday it happened to him.

It was a hot, beautiful day to be outside so we took Graham to play in the water and to get ice cream. As we were leaving Corey took Graham to change out of his wet clothes and I went inside the store. We said we would meet at the car in a few minutes. When I came back Corey told me, “I just had a weird thought. I was getting Graham to the car and randomly said to myself that you must have Hudson.”

We both cried for the palpable absence of our sweet boy and then smiled a bit knowing that our hearts can’t help but still parent him and look out for him. We never forget he’s gone but there are moments we are still “mama and daddy.” We save things to show him and think to be sure he’s looked after as we walk to the car.

We’re still looking out for our boy. Always will. Our hearts won’t let us do otherwise even though our minds know he’s in good hands.



Missing you, Huddy Buddy!


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Thursday, March 9, 2017

One Year in Heaven



One Year in Heaven. I know that there is no time there. No clocks, seconds, minutes, hours. No need for the sun to shine because our God is bright enough in Himself to be the light of all of heaven. There is no waiting. There is no crying. No tears. No sickness. No more dying. No separation. No confusion. There is worship. There is God. Jesus. The Holy Spirit. My grandparents, my anchors. My son, my heart.

One year in heaven might feel like one second or one million years. There is worship showing up in all different forms. Perhaps laying at the thrown of God in awe. Perhaps singing and dancing or building something beautiful or painting a masterpiece. Worship. Worship. Worship. No tears.

One year in heaven without pain. No surgery. No medication. No blood tests or needles. No beeping machines. No flat lines. No sin. No brokenness. No hospitals. There is joy unspeakable. Perfect peace. What we know in part, you know fully there. Glorified like your savior, knowing the whole story of redemption. What a beautiful story, indeed.

One year in heaven. So far, one year ahead of me. I don’t know how many years you will be there, my son, before I arrive. I imagine you whole. This isn’t a fairytale to hold in my grief. It is true. As I write through the tears, my broken heart knows that your heart is whole. I don’t understand it or like it. I can’t even fully appreciate it but it is true.

One year in heaven is one year away from this mama who loves you so much. I can still recall how you would jump in my womb and get the hiccups and the fear of your early delivery, not knowing if you would breathe. The first time we met face to face and you WERE breathing! All of our little talks about life and the world beyond hospital walls are still with me. Your cheeks are the best in the whole world. Your sideburns are legendary. Your big brother talks about you each time we see hand sanitizer. “Bubbles! We get those when we see Huddy!”  Your daddy is brave and works so hard and I catch him with tears rolling down his face as he remembers you, sweet boy. He wanted to teach you to fly a helicopter and take you to the farm. A dream lost. We miss you in the big things like Christmas morning but also in the little moments like bath time. I see your spot in our family at our table, in our car, in the grocery cart next to Graham. I see tired mamas with two little ones and I just stare at them to figure out if their kids are my kids’ ages. To see what it would look like if you were here with us. Just a glimpse of what it would be for us with two. With Huddy. Big Brother Grahambo and I have a game. We play, “If Huddy were here, what would we be doing?” Often his answers are things like hiding in the closet, dancing, playing with trains. My answer is kissing those awesome cheeks.

One year in heaven feels like forever for me. Part of me went with you. That’s okay, I’m your mama. The rest of me will arrive when God chooses. Sweet boy, worship has been so hard for this mama and done out of obedience and not delight. But, I’ve learned that is what we still have in common. You worship Him there and I’ll worship Him here (though it isn't always pretty). See, that’s what we’d do if Huddy were here or we were all in heaven, we would worship Jesus.

Let us worship...out of obedience and awe....

The Lord gives and the Lord takes away.
Blessed be the name of the Lord, in heaven and on earth.

Mama loves you, sweet boy.
You enjoy Jesus.

Sweet, sweet Jesus.

He surely is enough, even when your son has spent one year in heaven.
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Monday, February 20, 2017

You Don't Know Her Name But She Mattered


It was a normal day. As normal as life in the intensive care unit can be.

I was holding my precious baby with half a heart and telling him stories about how I fell in love with his daddy walking the streets of Manhattan. We had been in the unit for months now. I lost track of time and I had to look outside to see if it were day or night. By this point I could speak the language of acronyms thrown around by doctors and confirm dosing on medications for my son like a seasoned pharmacist. I knew what every beep meant and which ones shouldn’t make me tremble and which called the cavalry.

I had so many days like this one watching his numbers rise and fall, conversations with the new fellow who knew less about my son medically than I did and hearing about life outside these walls from what the nurses did on their shifts away from the chaos. Those medical warriors could be saving a life and at the same time talking about their favorite restaurant. It was a normal day for them too.

Normal became unimaginable as I picked out phrases being
said across the room. The specialist and his fellow were with Baby Girl in bed one. We were bed four. We had come to know Baby Girl after months of rooming together. We didn’t know her specific heart challenges but we knew her cries and that she loved to sit in her swing.

Life in the hospital is really never normal but a routine is built. I learned that I would have to step out of the unit when certain alarms sounded, a child was being admitted or coming back from surgery. On this particular day, I was tucked away rocking our boy and no one asked me to step out. I could hear the doctor answer the parents’ questions, “We could operate but we know it won’t work. She will require the same surgery again and again for it simply not to work in the end. We shouldn't put her through that. Of course, you can seek a second opinion but they will say the same.” Baby Girl’s mom pleads, “But, I read something online. Can’t you try that?” The conversation continued for around twenty minutes and the questions became more desperate. A mama and a daddy’s heart pleading for solution.

The last thing I overheard was the doctor saying, “There is simply no more we can do but make sure she is as comfortable as possible.”

Her stunned daddy just stood there over Baby Girl’s bed. No outward emotion. Just stunned. Lost. Her mama kept tearfully asking unanswerable questions.

The best of the best had nothing to offer.

I don’t know what happened with Baby Girl after she left our unit. I think about her often. She was just under two years old. She was a foster child with a severe heart defect. She was loved by her birth parents and her foster parents. Her short life was more complicated than it should have been. She didn’t have hundreds following her story or t-shirts made in her honor. No 5k’s were run in her name. No newspaper articles printed celebrating her fight.

But, I’ll never forget her.
She mattered.
She fought.
She is loved.

For whoever touches you, touches the apple of His eye.
Zechariah 2:8b

Baby Girl, your hips don’t lie J. (A little inside joke between us girls.)
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