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.

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