Grieving… the child you dreamed about and loving the child you have.

Momma, this one is for you.

The mom who is deep in the trenches of life you didn’t imagine. A diagnosis you never saw coming. A life that took you by surprise.

Grief. They say it comes in waves.

How funny.

Funny that waves something we associate with the ocean –something peaceful– can also be the one thing that can take our peace away.

The waves of grief can be huge. They can drag us under in a matter of seconds, leaving us gasping and flailing just trying to get our heads above water.

The waves of grief can be small. They can constantly nip at our toes reminding us of what isn’t, of what we lost, of what can never be.

Webster’s defines grief as:

“deep and poignant distress caused by or as if by bereavement”

Most people grieve lost loved ones, pets, belongings. Our society understands that. It’s acceptable. But what happens when we are faced with grieving those things that are right in front of us. Tangible things.

Tangible kids?

What happens when in one instant your life is turned upside down and the life, the child you imagined is suddenly taken away, but your child is still here. You are left with this alternative. This plan B you never considered.

What happens when no one understands your grief. When they tell you “be thankful, it could have been worse”, “at least you still have your child”, “God won’t give you more than you can handle”. All clichés.Things I have been guilty of saying, that in a twist of fate became things that make my skin crawl.

Words meant to be helpful, but instead were words of pain.

I’m here to tell you.

I was there.

I get it.

It’s okay.

Maybe not right now.

But it will be.

It’s okay to grieve.

It is okay to grieve the life, the child you thought you were going to have.

BUT then after you grieve. You have to accept this life, this child for what is.

Slowly, you find your way in this new life. With this child who came with their own world you know nothing about and you might even need a dictionary just to survive a conversation about it.

You find your way.

And somewhere along the way, you learn about yourself. You see how resilient children can be. You learn how strong you can be.

Then one day you look back and you realize you wouldn’t trade this life, this child for anything else.

The waves of grief were huge in the beginning. Mourning the loss of the child you imagined. The one who didn’t require a dictionary to talk to doctors. The one who flew through all their milestones. The one who enjoyed a ‘normal’ childhood.

Now the waves of grief are smaller. You mourned and you have jumped into this plan B with everything in you. Yet, the waves of grief still come. The lap at your toes as a reminder of what never will be. When you see children your child’s age accomplishing things you know your child won’t. A reminder. A wave. When you are stuck in another IEP meeting, another specialist. Waves. Reminders.

These waves don’t consume you anymore. These waves remind you of what could have been. They remind you of the blessing that is.

Of the special life you have been given. One that few will get to experience. Where the small things become the big things. One where you don’t take a single day or moment for granted.

Grieving doesn’t mean you love your child less. It doesn’t mean you’re a bad mom. It doesn’t diminish the bond you have with your child. It doesn’t take away anything.

Grieving allows you to live this life you have been giving. It gives you the space to feel all the things so you can replenish yourself for the task ahead. It opens you up to let more love in.

So remember.

It’s okay to grieve the child and life that should have been and come to accept and love the child and life that is.

To realize the life you never wanted is a life you wouldn’t change.

The Art of Surrender

Surrender. That was my word for 2019. I talked a few blogs ago about how to surrender means to abandon oneself entirely. Another definition can be “to give up or hand over“.

I should have known then, that this was going to be a year for the books. I am still very much learning how to abandon myself entirely for what God has in store for me. The glimpses, I have been given are amazing, and I know that in order to get there I have to surrender. I have to abandon myself, I have to find delight in the Lord, and that is when he will bestow his blessings.

“Trust in the LORD, and do good; dwell in the land and befriend faithfulness. Delight yourself in the LORD, and he will give you the desires of your heart” Psalm 37:3-4

Now why would a good good God give me this amazing desires and this vision for a beautiful amazing future without the intent of fulfilling those desires. It is simple. He has the intent. But for me to receive them I have to delight in him, I have to be faithful to his calling. In other words I have to abandon myself. What? Mind Blown.

In other words I have to take what God has given me and be faithful in that. I have to show God that I can be faithful with little, before I am entrusted with more. Light bulb. It is that simple. Every moment I am given is a chance for me to say, I will use this 5 minutes to glorify you or to glorify me. I can only do one of those. It is my choice.



As I have been learning to lean in on that one definition of surrender. God has used the other definition “to give up or hand over” as a way of teaching that to me.

Leave it to God to use the same word multiple ways to teach me several lessons.

Give up or hand over. How hard is that. My humanness wants to hang on to every ounce of control I have. To micromanage my way into tricking myself that I have the power to control the outcome of anything.

Olivia’s surgery in particular was a huge catalyst of surrendering, of handing over. In more ways than one. I had to hand her over to the surgeon. To trust that he was making the right decisions. More importantly I had to give her up to God. I had to come to realization that she is simply a gift he has chosen to bless me with, and at any time he can say her purpose has been fulfilled and call her home. Handing my daughter over to a surgeon with her life and quality of life hanging in the balance was humbling. I had absolutely no control over what was going to happen.

I wish I could tell you that it was easy, that I trusted God so much with her future that I had complete faith he would bring her through surgery unharmed. That wouldn’t be true. I doubted God so much that I had her entire funeral planned out. I knew what flowers I wanted, what colors, I knew what picture I would use, what songs would be played, the quote for her headstone. I had it all planned out. I wanted to be able to fully grieve without having to make permanent decisions. In my heart of hearts I knew that God could perform healing for her, but I doubted that his idea of healing, and my idea of healing were the same.

I hoped and prayed for the best, but I prepared for the worst. However, it was in the preparing that God worked in me.

By preparing for the worst, I was finally accepting that I had no control. I was finally saying “God, she is yours. She was yours before she was mine. She will be yours long after I am gone. Lord, use her, use her story in whatever you see fit. Let her story be known. Use this, in whatever outcome use it to your glory.”

Surrender, it is a hard lesson to learn. It is even harder to live out. But in the surrendering there is a beauty to be found. I am not called to anything beyond what Jesus himself would not do. Jesus, too had to surrender to God’s will.

“And he said, ‘Abba, Father, all things are possible for you. Remove this cup from me. Yet not what I will, but you will.” Mark 14:36

Surrender. To hand over to give up. To abandon oneself entirely. It is raw, it is hard. Yet it is so beautiful. Just like the rainbow after the rain, there is growth after surrendering.

I surrender. I surrendered. I surrender still.

What do I do when God disappoints…

This week has been a dream. Olivia has been off one of her medications. It has been pure bliss as we have watched her come back to life. Without that specific medication in her system she has flourished. Where once it was like waking the dead, now she is up before the sun. Where once […]

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Word of the year 2019: Surrender

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Lessons learned around the table

Six years. It has been six years since I sat at that old table. You know the one. It sits with placements under a simple tablecloth. In the middle there sits notebooks and pens in the napkin holder, beside that a bottle of banana peppers and a salt shaker. A tea cup of water sits […]

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