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My Heart on my Sleeve

{Today’s post is heavy…feel free to skip it. I just needed to write what was in my head and heart}



I learned today that the toddler son of a missionary we’re fond of, died suddenly this morning. We’ve attended church with this missionary, prayed for him as a single missionary, we’ve prayed for him and his new wife and we’ve prayed for him, his wife and their precious son. And now he’s gone.

I am writing today because I feel weighed down by the burden of death. Of the knowledge that people’s children die. Not “other people” but regular people like you and me. Twice I have held my toddler son in my arms, fearing his death. First, at the age of 11 months old, when I saw the fear of death written all over the doctor’s face. Apollo had a high fever, was in respiratory distress, and they had no idea what was wrong. This was long before his double aortic arch diagnosis. The second time, that I’ve only alluded to here on this blog, was the time he choked and I had to call 911.  I know the pain and terror of worrying that the child in my arms will die. But by the grace of God, I don’t know the anguish of actually experiencing that death.

I’ve said here many times that I am a different person since having Apollo and walking with him through his health issues. I have become a different person as I have watched him fight and suffer. As I’ve held him in my arms through tears and through pain that was bigger than tears. I don’t want to exaggerate in any way here. At no time did the doctors in Houston say to us, “this is a very risky surgery and your son might die”. There was risk, of course, but he didn’t have open heart surgery. He spent time in the ICU afterwards, but he was never on a heart-lung by-pass machine. They never had to stop his heart. What the doctor did say to us is, “I don’t know what I’m going to find when I open your son up because his anatomy doesn’t match his medical records.” But that’s a story for another day. A story I am writing in my free time.

I know what you’re thinking, “other people’s” kids get sick and die. Except every family at the Ronald McDonald House was “other people”. Including us. Those kids were real. We are real. Apollo isn’t “a kid with a heart defect”. He’s a curly-haired boy, with a keen sense of humor and a love of super heroes.

I have an Instagram friend whose son died suddenly while I was Houston seeking out medical care for Apollo. I didn’t learn about his death for several months, but I cried when I did. Apollo and her son were close in age. Both had curly blond hair. We compared and chatted about our boys through Instagram. I still think of her son often, when I am with Apollo.

Life isn’t fair and suffering isn’t distributed evenly. I saw that up close at the Ronald McDonald House. One mom there was carrying her third child, who would also be her third child born with birth defects. Her son would be born, have surgery, then die. I know of two other children who we spent time with at the Ronald McDonald House Houston with us who have since died. Both were only children.

Author Lynnette Kraft, lost three of her children to unrelated birth defects. Three. Through wonders of the internet, we have been in touch and chatted. She and her amazing family have lost and suffered so much and yet are thriving today.

I sometimes find myself sometimes doing crazy mental arithmetic:

Apollo’s heart defect is “mild” compared to many others- so we don’t get full credit. Extra points for the feeding tube, subtract a few for not needing oxygen. Add in Kalina’s hearing loss, add points for it dipping down in the “profound” range, subtract a few for it only being in one ear…

As if God is up there, keeping track. Three or four children with “mild” special needs protect me from tragic accidents and childhood cancer, right?

But we all know it doesn’t really work that way. I won’t pretend to know why God allows certain things to happen. I just know that I am safe and secure in His arms. He is in control through the good times and the bad. He has a plan, even if He never shares it with me. And that, I suppose, is what faith is all about.



  1. Karen

    Excellently written, Renee, and from the heart. Amen, God does have a plan for each and every life, young and old. We step out in faith and follow His directions and put our trust in Him to see us through each and every step. My heart aches for those who do NOT believe in God and face the daily trials they may face without the head/heart knowledge that God is right there just waiting for them to reach out for His hand. My two are healthy adults and I can’t fathom all the things you are faced with dealing with the issues Apollo have, or the other sweeties that have their own issues, but I thank the Lord that you know who to turn to and who is in control. Be blessed.

  2. Cherie Janke

    My heart aches…..being a mother and knowing another child has died feels like a pressure you never want to experience. I admire you Renee and love reading your blogs and seeing your children grow. Mine have grown and I am soooo thankful they made it, praying all those years for their protection and health. My son is going to be 43 on Feb. 4th and he’s always been healthy and around Christmas came down with a terrible flu, coughing so badly that he damaged his vocal cords and was throwing up blood. He wasn’t able to speak for quite a while and still is not feeling good. They are doing all kinds of tests and so far, nothing but he is so lathargic and not himself. As a mother, even though he is not a child, he is still my child and I worry and pray constantly. I cannot think that if I lost a child that I would be able to live. I know the Lord would be with me but my love for my children and grandchildren is so deep that I don’t think I could survive. That’s why my heart aches when I hear of a mother losing a child. God be with us! And God Bless you Renee and your family! My prayers are with you…..

  3. Myfawnwy Stephenson

    Renee, we are a family of 10 in the NW New Mexico. I ran across your blog a few years ago when searching for large family meal ideas. We have been praying for Apollo ever since. The very best place to be is in the loving arms of our Father. He truly does give peace that passeth all understanding. I cried when I read that Apollo survived a cord prolapse, and praised the LORD. Our little guy did not and was born into heaven during birth 5.5 years ago. God’s peace flooded the hospital room and we understood the overwhelming comfort of the Holy Spirit. This past summer our 16 yr. old son drowned while we were at the lake. What was to be a 4 hr. relaxation trip became a 3 day search for our son. Again we were flooded with HIS peace that passeth all understanding. I don’t pretend to know why GOD took them home but I do know HE never fails me and HE is good all the time. It is a pain like no other and yet it is also a comfort we never experienced before. It has taught us to trust HIM only HE knows the path we must take. We have a faithful Father, a loving Saviour, and the Holy Spirit who brings peace and comfort beyond our comprehension. I hope you never have to experience the loss of one of your children but if you do, know that GOD is GOOD and faithful. Blessings, Muffy

    • Jenny

      I wanted tell you we live here in NM too, and my heart ached for your family and the other family involved. I am so sorry for you loss. What you just wrote here is very touching and encouraging you will be in my thoughts and prayers.

      • Myfawnwy Stephenson

        We really appreciate your prayers. We are overwhelmed with how many people al over the world supported our family and have prayed and loved us throughout this time.
        Blessings, Muffy

  4. mollie

    Almost started to cry while reading this post. A few years 2 young boys in my school were killed in hurricane Sandy. Every day I wonder why it was them who was chosen, why it was them who were killed. I don’t know if I believe in a God. But this year we didn’t receive a storm and I truly believe that it is because it is because they are watching over us, over our town. Every post you write about Apollo’s story I almost start to cry. He is so young. Why are people so young chosen to have the toughest battles?

  5. Melissa

    I agree with Muffy. We buried our firstborn son and what I can tell you is that THE FEAR I had long before he was born, interceding for our baby and praying against specific medical challenges, was bigger than THE REALITY of walking through a more serious situation WITH THE GRACE IF GOD.

    There’s a reason we’re to “take into captivity every thought and imagination….” Like manna in the desert, we only receive the grace we need day by day. Know that the greatest thing to fear is the idea that we could ever leave the center of the palm of our Father’s hand – and that’s not possible. Whatever life throws at you, He will give you grace, WHEN YOU NEED IT, not when you imagine it.

    Death stinks, and hurts so much, but the grace of God is sufficient, day after day after ugly day, and HE ALONE gives us the hope and joy of knowing 80 years together on earth are a speck of dust compared to the eternity we will spend together before His throne. He gives grace, and He never leaves us alone.


  6. janabkimmel

    I will never fully understand why children are allowed to suffer and even die. As someone who has dealt with a sick child and said goodbye to one of my children, there is absolutely nothing like it. Its the worst pain you can imagine, multiplied over and over. The only thing I do know is that God is faithful and he is good. I hate the “Everything happens for a reason” saying, but we can definitely choose to find good in the hard. I’m sorry you have to watch your son struggle.

  7. Chava ~ Permafrost (@Chava53718182)

    It is hard watching others lose their kids. I can’t even imagine since I’m childless. It’s like having a miscarriage and then feeling the pain when all of your friends are expecting. It’s understandable to feel this pain because you so closely identify with it. Praying for you and for those who have loved children.

  8. Sarah

    I absolutely love what you said in your last paragraph. We lost our 3.5 day old son three months ago to SIDS. Our hearts are broken, but God is good. Someone told me shortly after we lost our baby, “remember, God is the same today as he was a week ago, he hasn’t changed”. While hurting in a way I couldn’t have imagined a few months ago, I know that my God is good and loving and holding me and my precious little boy tightly in His arms. I know that we will be okay and I know that God is in control.

  9. Dawn

    You wrote a wonderful and well thought out post. I have three special needs kids and one with mild learning challenges. Both of our sons have faced and escaped death. Our oldest son has had open heart, been legally dead twice and then returned to the living at the last second. I understand the point system that you sometimes get caught up in, but know isn’t real. It breaks my heart to see any children suffer. Being a mother of medically fragile children has changed me a great deal. We are praying for you family.
    Blessings, Dawn

  10. Peg

    With five children we have had the usual bumps, bruises, stitches and a few broken bones. But twice we have been on the edge of that cliff looking into the abyss of having a child die. The first time, our oldest was five and she ran into the street and was hit by a van. Only by the Grace of God, was there a man visiting his parents who ran out and got her breathing before the Aid Unit arrived. He was a member of the Ski Patrol and knew exactly what to do. The second time, six years later, a heart stopping moment, when checking on our sleeping 6mo. old baby and I couldn’t wake him. He was breathing but unconscious. A rushed trip to the hospital and they knew exactly what was wrong with him. But before he went into surgery, they gave him an enema to find where the blockage was and his bowels somehow untwisted and they didn’t have to do the operation. The doctor who did the procedure started dancing on his tiptoes singing, ‘I saved your baby from the knives of the surgeons.’ We could have kissed him.
    We have relatives and friends who have lost children. My husband’s brother and his wife, their first child died several days before being born. My sister-in-law lost a three month old nephew to SIDS. A good friend from school, knew her baby, if alive at birth would only live a few hours. Can you imagine the absolute heartbreak of making funeral arrangements for a child not yet born. Even 40 years later, I am saddened thinking of her.
    So, as I said, we have not crossed that line but everyday I give thanks for the Blessings God has given us.

  11. Mary

    I don’t even know what to say. I’m just so glad you wrote exactly what is on your heart. And I’m thankful for every one who left comments and for the ones who read and wept privately that you will never even know about. I believe everything we go through prepares us to better minister to others going through similar things. I am 2 weeks from my due date. I am battling fear and anxiety, God has and is so good to us. We have lost four angels through miscarriages. God has preserved our four living children thus far. Last week we could have lost our six year old when he choked on a quarter and needed surgery. I have nearly died twice from post partum hemorrhage. I don’t know what will happen with this next birth. But “I know who holds tomorrow, and I know who holds my hand” Thank you for the reminder that God is good, and he gives grace for every situation. Right when it’s needed. Keep on encouraging. You have a tremendous ministry.

  12. Eleanor J.

    So strange; I was thinking along the same lines the other night. My 2 year-old had a pretty nasty cough and cold and she could barely sleep because of the coughing. Twice she threw up after a coughing fit and I was scared. I wondered how bad she would get and if and when I would have to take her to the ER. I had this irrational fear that she would quit breathing or suffocate even thought I knew in my head it was just a cold or a virus. But then I kept thinking about parents with real fears and worries, like you with Apollo, or the parents of children with cancer, or a friend of mine whose baby was born at 27 weeks and was in the NICU for months (he is now healthy and so chubby!). My fears seemed so dumb compared to others and I was reminded, yet again, how blessed I am with two healthy children. I know they could be taken in a moment, but I have to rest in the Lord in every moment. I’ve told my husband before that if our children die or if he dies then I know that the only thing that would get me through is the “peace that passes all understanding.” Even though he confesses to believe in Jesus he thinks he won’t have that peace. I don’t know how people live, in good times and especially in bad times, without faith in the Lord. I don’t know what it’s like to lose a child and I hope and pray I never find out. But you’re right; it happens to real people. And it is for you real people that I am praying tonight.

  13. cecily spencer

    Thank you for sharing when you are feeling so weighed down. I Have been reading all the comments and I believe Heavenly father wants us to share these times and feelings. I Pray that you and the family of this child will be comforted. Mourning with those that mourn is painful. I can tell you that it helps those that mourn know they are not alone. Too many run away because it hurts too much especially with a child.

  14. bemis

    Thanks for sharing your heart, Renee. I’ve had many of the same thoughts about death and how it can strike us all. I’m absolutely convinced that our God is not a god of death. Yes, he allows it, but no, he doesn’t will it.

    After losing one twin weeks before birth to Twin-Twin Transfusion Syndrome after fetal surgery, our other twin was born three months early. One of the scariest moments of my life was immediately before her birth, knowing there was nothing I could do to stop her being born and not knowing if she would be okay. Now, as a 16-month-old, she’s perfectly healthy, though tiny. Still, she has spent three months of her life in the hospital, in three different segments–her initial NICU stay, a ten-day stay with a Strep B infection in her blood that might also have been meningitis (they’ll never know), and then an additional night again months later after waking up from a nap in respiratory distress. I watched as she turned blue, labored to breath, became less and less alert, thinking, “For all we’ve already been through, she’s going to die in front of me, and there’s nothing I can do. God, did we have to go through all that just for this?!” She ended up fine, but no one knows what happened. I agree, aside from actually losing a child, the terror of thinking that your child is about to die in your arms must be the most awful thing a parent can experience.

    This world is not as it is supposed to be, is it? This is always when I’m reminded that we are forever longing for a better place. I was reminded a few months ago of the joy we will have one day when singing “10 years (Bless the Lord, Oh My Soul),” when I had a sudden clear picture that my other little girl is already there praising the Lord, and that she’s not sad or in pain. And one day, I’ll be standing beside her, praising the Lord, just the same for “10 years and then forevermore.” What a day it will be when there are no more tears and when children do not die.

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