Embracing the mess

To the mom who is sitting in the middle of the mess. It’s 8pm and your staring at your house convinced you did nothing today or maybe you feel like you did everything and have nothing to show for it.

There are solo cups strewn across the room from building countless cup towers. The 50 Peppa Pig puzzle pieces need to be sorted into their puzzle bags. Somehow the kid’s toothbrushes and toothpaste have landed on the couch. The blanket and pillows need fluffed and folded. The dishes have piled in the sink all day. Laundry has sat needed to be folded and don’t even think about the kids bedrooms.

The big kids are finally asleep and the baby is finally content not being held. Your looking around at everything that wasn’t accomplished today, knowing it needs to be done before you go to bed; but wanting nothing more than to crawl into your own bed and go to sleep while you can.

I see you.

I am you.

Embrace the mess.

The dirty dishes? Your kids ate today. The puzzles and solo cups? Your kids played with you for hours today. The blankets and pillows? Your kids got cozy cuddles with you today. The laundry that wasn’t folded? You nurtured a baby while watching the big kids play together. The toothbrushes and toothpaste out of place? Your kids have clean teeth. The kids bedroom? You read books and colored with your kids today.

Embrace the mess.

For in the mess is where your kids find you. In the mess is where memories are made.

The mess won’t be there forever. Soon kids will grow and solo cup towers and puzzles will be replaced with trips to the mall for makeup and clothes, outings with friends where your only purpose will be to hand out money.

Your sitting in the middle of the mess wondering where to begin, remember the laughter, the hugs and the cuddles. Your kids won’t remember the mess and honestly you probably won’t either. They will remember the solo cup towers. And when your old and gray watching the grandkids play with solo cup towers you will say “I used to do that with your mommy”.

When your old and gray you will look at your grown kids stressing over their own messy house. You will tell them…

embrace the mess.

Or so I’m told. I’m still learning to embrace the mess. To remember that babies don’t keep. So today I’m embracing the mess. I’m soaking in all the cuddles I can get. Tomorrow chores will be done by all. Today we just needed a pajama and play day. Today we are learning to embrace the mess.

Memory Loss, Permanent Deficits, Quality of Life, Mortality Rates and where God fits into it all.

Memory loss, language/communication problems, permanent deficits, quality of life, mortality rates.  Where is God when I am discussing these topics with my child’s doctor?

I’ll be honest sometimes God seems very distant, like he is just sitting back watching my daughter struggle through life without lifting a finger to help. Sometimes I wonder why Olivia? Sometimes I get angry why Olivia?

There are times when I just want to hide in my bed all day and forget what awaits me when I get up. A day full of worry and anxiety. Which doctors appointments are coming up? What needs to be rescheduled? Will she have the energy or the stamina to withstand the day? What new problems have come to light since we last talked to the doctor? What questions do I have that need to be wrote down?

Not everyday has those questions, but everyday is filled with questions like: Is this normal 6 year old behavior or is this being caused by epilepsy and its many side effects?

So where is God? 

Where is God when I’m discussing taking out a portion of my daughters brain? Where is God when I’m discussing permanent memory loss and communication problems at the age of 6. Where is God when I’m discussing her quality of life and there are no answers?

God is right there beside me. 

The only trick is I have to let him in. I have to believe that God loves her infinitely more than I do. 

It is true.

God loves Olivia more than I do.

That is by far the hardest statement to truly believe. I do believe it even though I sometimes struggle with it. If I did not believe I would have fallen into a lonely pit of despair a long time ago.

We live in a broken world. Our children are not exempt from that brokenness. Trust me I hate more than most how our children must suffer the effects of sin. However, there is one cure. Jesus. 

Only Jesus can fix our broken world.

Only God knows the details of how everything will play out.

While God knows the details, I do know this. In the end we win. Sin is defeated. I may not get to see how this plays out, but I am thankful for the small glimpses into the big picture I am allowed.

Olivia is at one of five hospitals in the nation that are equipped with certain equipment she needs to undergo testing for her rare type of epilepsy. Her epilepsy itself is not rare but the way it manifest and the age of which it has manifested is. Olivia is at the highest level epilepsy center that can be achieved with several doctors that are on national boards for epilepsy. Basically there is no where else she could go. We are at the best of the best.

How did we end up here?

God. 

There is no other explanation. God had his hand in this from the beginning. When Olivia had her BIG seizure. We requested to be sent to our states children hospital. That day it was too foggy to fly, and it would have taken the children’s ambulance too long to get to us, three hours to get to us and three more hours to get there. However, the other hospital (the one we are currently treated at) happened to have an ambulance at the hospital we were at, without a patient. It would take us less than 2 hours to get her there. So we agreed to have her sent there instead. How crazy is that?

Some may call it lucky chance. I call it divine intervention.

I’ve often wondered what Olivia’s purpose would be in this life, with the cards she has been dealt. Again, God has given us glimpses into that. We have been asked to take part of two research studies. One to help predict outcomes for future VNS patients so that parents won’t have to worry if this surgery will help or not. They will know before surgery (a luxury we don’t have) so that they can make a better decision. Another study to see how the VNS effects SUDEP (sudden unexpected death in epilepsy patients-a study we hope to never finish-). While none of these studies actually help Olivia or our decision process. They will help future patients. That is worth it. If through Olivia we can help save other patients and parents the impossible questions that we have to face. Of course we will do it. Because no parents should ever have to go into a surgery not knowing if it will help, make things worse or do nothing at all for their child. 

IMG_3986Olivia undergoing a test in preparation for surgery. She handles it all like a true warrior.

So where is God?

God is with me.

He is walking beside me through this journey. He hears my cry, my anger, my frustration. He carries my burden for me once I hand it over to him. Ultimately, he knows what is best, he is working all this pain out for good. It may not be the good I am desperately wanting, but it is being worked out for good.

I just have to let go of my plan and cling to his. 

 

I have PTSD from my child’s illness.

No, I don’t need a doctor to tell me that. I can tell you that because I am living it. Ask me what my biggest fear is. Ask me what haunts my dreams. Ask me what it’s like to live with the what if’s. Ask me what it’s like to relive the worst moment of […]

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What I would give to be the mom in the carline…

Carline, a thing I used to dread… 45 minutes in a car with my cranky toddler who just wants out and a snack or two or five. Carline, I’m not sure anyone really likes the carline. Unless your toddler is sleeping and it’s your hour of peace. In which case hats off to you. You […]

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My word of the year 2018: JOY

This year instead of having new year resolutions that never get accomplished, I am going in a new direction. A word of the year. One word to take me through the entire year. One word to shape the way my year goes. That word: JOY Joy in everything. Joy in the hard times. Joy in […]

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2017 in review: A year of searching, seeking, fears, healing, unanswered prayers, grace and love abounding

“Yes, she has epilepsy. No, we may never know why; sometimes these things just happen” Those are the words that were spoken to us in June 2017. But to fully understand you have to go back to January 2017. January 1, 2017 Olivia consistently lip smacks or swallows in her sleep to the point it […]

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No one tells you what to do when your baby isn’t healthy. 

“Do you want a girl or a boy?” “It doesn’t matter, as long as it is healthy” This is a coverasation every expectant parent has with almost every person they come into contact with. Every. Time.  I’m pregnant with my third baby. We have already been blessed with two beautiful girls ages 5 and 1. […]

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Another Year. Another January. Part 2. 

I have put off writing this blog. I honestly don’t want to dive into it. To re live it. To dig up the emotions or rather have the emotions come bubbling to the surface. I’m afraid that once I write it, once I let this become black and white in words, it becomes real. Right […]

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Another year. Another January. Part 1.

A few years ago I wrote a post about a pretty terrible January we had. You can read it here. Ironically enough, this January was even tougher. I remember a few years ago thinking, this is terrible is it ever going to get better?  It did get better. Then… BOOM. 2017 2017 has been a […]

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America. Your not great. 

 America. Your not great. Yes, we have many things that we take for granted and should be thankful for but America:  WE are not great.  America, we have raised a generation of kids now adults who feel entitled to whatever they want. Who feel as if when they don’t get their way then it’s okay […]

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