The job of a medically fragile child’s sibling.

I abandoned my child.

Now say it again.

I abandoned my child.

Say it again one more time.

I abandoned by child.

I say this to myself. I tell myself I had no choice. I say it to prepare my heart.

One of the greatest parenting advice I ever got is to always be open to hear how you failed your child when they are little after they are grown.

Woah. Openly accept all the ways I failed even though I was doing my best.

Do it openly. Do it without making excuses. Accept that at some point despite my best intentions I will mess up. I will make a negative lasting impression on my child among all the positive.

So I say it. I abandoned my child. I say it and know it’s true.

Not in the way you are thinking. She never went without, always had food and shelter and I was always a phone call away.

But I did abandon her. My middle child. My child with a heart of gold.

I’m sure there is a fancy word for it, but I’m calling it the syndrome of the sibling of a medically fragile child. A medical necessity.

When grandma and grandpa picked her up from daycare and kept her for days as her dad and I had to rush her sister to the hospital for an impromptu stay more times than I care to count.

Yes we called her, but we weren’t there like she expected. She got left behind time and time again. Not her fault. Not ours. Just a cruel twist of fate. But it’s there. The abandonment.

Even earlier the sweet solely breastfed babe who wouldn’t take a bottle. Left in the care of friends with a bottle and formula for TWO weeks as we fought for her sisters life. Again, not her fault. Not ours. Just another cruel twist of fate.

Abandonment. Can you imagine being that babe only knowing mom for 9 months to suddenly be without her for that long. Abandonment.

The birthday parties that got canceled and never rescheduled because a party just wasn’t important in all the chaos of a sisters failing health.

As far as abandonment goes this is pretty mild. Honestly, it is so much worse and unimaginable for many kids. I don’t want to discount or discredit that. Yet, that won’t take away my daughters feelings. It won’t change the fact. Abandonment can come in many forms. As I know from personal experience.

It makes so much sense that she would be my child who doesn’t like sleepovers, who doesn’t like to be away from me. Who needs a few extra cuddles. Who always finds me in the wee hours of the morning.

Why?

She needs to know I’m there. Because she knows the feeling deep in her soul of when I’m not. Even if she is too young to vocalize the feeling. It’s there. Her actions show it.

So my job is to teach her that my love is strong. It’s unconditional, it can’t be broken. It’s never changing and unstoppable.

Because the truth is, it will probably happen again. I’ll have to drop everything to rush to her sisters bedside.

Her sisters illness will leave her with her own scars despite the fact that won’t suffer physically.

She will be her sisters biggest advocate. She will love her and protect her. She will and has seen things she shouldn’t have too. She has become a nurse helper at such a young age.

She will have scars from it. She will also be better because of it.

She will love a little harder. Be a little kinder. Be a little stronger. Love a little more.

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.

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