Welcome to my world–the life of a medically fragile child in the midst of a pandemic.

Dear World,

Welcome to my world. I feel your pain and your worry and your sadness. I feel your grief. I understand more than you even know. Your world has been turned upside down. Nothing really makes sense anymore. Routines have been changed. You aren’t quite sure what the future looks like anymore.

Suddenly everyone you know, is a danger. People you don’t know are a danger. Going to the store is a danger. You are more aware of germs than ever before. You are scared to go out, scared to see friends. Scared to let go.

Control has become your new normal. If you can’t control it you are terrified of it. The uncertainty . You are frozen in place. Sticking to routines, new routines. Routines you aren’t used. Making things up as you go.

Control. Trying to control what you can. Every little detail. Making sure your kids don’t remember the uncertainty or the disruption but only remember the fun. The laughter. The extra time with mom and dad.

Or maybe. Just maybe you don’t get to stay at home, safe in your bubble. Maybe you are “essential” or maybe you don’t have a choice if your family wants to eat. So you go to work, with fear of what you could be exposed to, what you could bring home to your family.

The anxiety of the unknown has eaten at you.

Friend, I have been there. I have lived this life, long before it was your reality. Let me tell you something.

It gets better. You adjust. You make new plans. Find new routines. Find a new normal. You learn to enjoy the little things. To not take life for granted. To not judge others for their decisions. Remember we are all just trying to get by, doing the best we can with what we have. We are all just surviving.

FRIEND, Let me tell you the best part.

You can do more than just survive.

You can thrive.

There isn’t some magic secret.

It’s really simple. You move on. You find you new normal and you go on.

I’m not saying it’s not okay to grieve.

You can grieve. You should grieve.

It’s okay to not be okay.

But friend. You can’t stay there.

You have to move on. You have to get up. Put one foot in front of the other and move. It will be okay. It may not be okay right now, but it will be one day. You have to find your new normal, and accept it.

No, its not always pretty and it’s not always what you want. But there is beauty in letting God work. In letting God take control. Letting him show you what he needs to show you.

There is beauty in the chaos.

Three years ago, my life turned upside down. Suddenly everyday normal things were a threat to my families survival. For 1,193 days I have lived with the very real threat the most normal things could cost my daughter her life. Too much stimulus, too much noise, lack of sleep, too much stress, school, a playground fall, the common cold, a fever, even just random chance. All of these things were a threat to my daughter. They still are. Even more so now.

Friend, I know. I’ve been there. Let me tell you, the view is much better once you let go of that control. Of that fear that if you don’t have it all together it will all fall apart.

God has it all together. The pieces may not make sense right now, but weeks, months, and years from now you will start to be able to piece the puzzle together; and little by little you will start to be able to see just how God was moving.

I won’t tell you it’s easy. It may be the hardest thing you ever have to do. I won’t even tell you that the fear goes away. It stays. It’s there in the back of your mind. However, once you accept it the new normal, the fear doesn’t control you anymore.

Once you stop giving fear that control. You can truly enjoy the change. Because believe me there are good things happening in the change. You just have to look. You have to let go of your control to see them.

Friend, it is possible to come out of this season better than when you entered it. It’s possible that this could be one of the better things to happen to you. It is possible to live with a peace beyond reason in this scary time.

I tell you it’s possible. Because I know. Because I have lived it. I am living it. I will continue to live it. Long after your worries are over, long after this season has passed. My fears will still remain. And I will remain at ease. I will continue to choose peace over fear. You will too. When the next crisis comes, and it will. You will choose peace over fear. You are stronger than you know. Stronger than your fear.

So welcome to my world. I am so incredibly thankful that you are only having to experience this fear temporarily. While, I hate that you have had to experience this fear, this uncertainty. I am so thankful that you also understand a little bit better of what its like to be me, the parent of a medically fragile child.

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

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The garden, it’s one of my favorite places to be. It is serene. There is a great peace that comes with watching life happen. Watching nature unfold stops time. I spent a lot of my childhood in a garden. I learned how to make straight lines, dig holes, plants seeds, care for those same seeds […]

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