Saturday, July 7, 2012

Roughed Up, Now Resting Up

I feel like we're in a 12 round fight and we have just gotten through the 4th round and are sitting in the corner nursing our wounds from a pretty solid beating.

I can't pinpoint it, but joy was stolen this past week. Chaia is one! And yet there were a lot of sad tears this week.

We had our latest check up at the Cleveland Clinic. You all know us by now to know that we are putting our confidence in Christ, that He can work even this to His glory.

But for whatever reason the Clinic trip stole our joy. It started for me when Chaia hurled her whole 9:30 feed all over me during the first appointment. Then it escalated for both of us when Chaia screamed through an echo and then reached its tipping point when the doctor said that Chaia's heart isn't getting better and likely won't get better.

We feel a little beat up. Like every step we take forward is met with two steps back.

I asked if there was any sense in believing that some of the 11 meds she is on daily might be weaned in coming weeks and months. And that is not happening anytime in the next 12 months from the sounds of it. They added that we should be thinking toward transplant decisions, which we absolutely hate. How do you even begin to weigh out a decision that could put your child in and out the hospital for years, with countless drugs given daily? The question we continue to wrestle with is WHAT DOES IT MEAN TO BE A GOOD PARENT? Is it "fight for your kid at all costs and give them a shot at life even if the quality of that life might be very low, filled with suffering and pain"? Is it yielding control to the Lord and letting Him sort out life and death?

We believe God is healing our daughter's heart. But sometimes we need God to help our unbelief.

We share a lot about the joy we have experienced on this road with Chaia, but make no mistake, this road is also hard and sad as well.

So we need rest. We need recharged. And lucky for us we are heading to Destin, Florida for a week! This will be our first opportunity really to decompress since Chaia crashed last September. It is much needed

We need prayer...prayer for rest...for encouragement...for Chaia's care to lead us to gratitude rather than discouragement.

Will be blogging pretty sporadically over the next week or so, hoping for God to breathe life into weary bones.

We are excited for the beach...for Chaia's first plane ride...first ocean encounter...and first pictures in her baby bikini!

So...yeah...feeling beat up...but also feeling ready for resurrection.

12 comments:

Mama Karen said...

Oh Ben, my heart is heavy this morning. I will not stop trusting and believing that God is going to heal your precious baby girl. Don't be discouraged!!! We will continue to lift up your arms as you fight this battle. It is the Lords and we will keep bombarding heaven for our miracle. Get some rest and let God fight this one. Have fun in the sand. Savor the ocean breezes. God has your back and we will keep believing. We will believe the rest wiell be good for your weary soul. Hugs to you and Shaina.

Anonymous said...

Prayers are lifting you at this very moment - this morning we sang "Our God is Greater, Our God is Stronger, God You are Higher than any other!" Every time we sing it, it brings back the memories of the service at the Wadsworth Church and how powerful it was as Shaina sang it. How powerful the whole service was. He WILL win - Chaia WILL win! Stay encouraged and know that Satan is trying hard to defeat because he knows he's being defeated. I agree with Karen - Let God fight - He wants to! Love you and enjoy your time away!

Anonymous said...

I've been heartbroken since I read this this morning and its taken me all day to try to find some words of encouragement for you and Shaina and as I was rereading i was encouraged by you. Your faith amazes me and strengthens me to get on my knees for you guys and to help hold your arms when you can't. It's okay to be sad. I am so sad right now just reading this. But knowing who has this situation in His hands changes the game. Oh how He loves us and oh how He loves Chaia. You guys deserve to take a break and decompress and hold that beautiful baby with your feet in the sand. Know that we are praying for you as you do and God is fighting this battle and He will win. Enjoy your vacation!

Still kneeling in Springfield

Anonymous said...

I've been heartbroken since I read this this morning and its taken me all day to try to find some words of encouragement for you and Shaina and as I was rereading i was encouraged by you. Your faith amazes me and strengthens me to get on my knees for you guys and to help hold your arms when you can't. It's okay to be sad. I am so sad right now just reading this. But knowing who has this situation in His hands changes the game. Oh how He loves us and oh how He loves Chaia. You guys deserve to take a break and decompress and hold that beautiful baby with your feet in the sand. Know that we are praying for you as you do and God is fighting this battle and He will win. Enjoy your vacation!

Still kneeling in Springfield

Anonymous said...

I've been heartbroken since I read this this morning and its taken me all day to try to find some words of encouragement for you and Shaina and as I was rereading i was encouraged by you. Your faith amazes me and strengthens me to get on my knees for you guys and to help hold your arms when you can't. It's okay to be sad. I am so sad right now just reading this. But knowing who has this situation in His hands changes the game. Oh how He loves us and oh how He loves Chaia. You guys deserve to take a break and decompress and hold that beautiful baby with your feet in the sand. Know that we are praying for you as you do and God is fighting this battle and He will win. Enjoy your vacation!

Still kneeling in Springfield

Anonymous said...

I've been heartbroken since I read this this morning and its taken me all day to try to find some words of encouragement for you and Shaina and as I was rereading i was encouraged by you. Your faith amazes me and strengthens me to get on my knees for you guys and to help hold your arms when you can't. It's okay to be sad. I am so sad right now just reading this. But knowing who has this situation in His hands changes the game. Oh how He loves us and oh how He loves Chaia. You guys deserve to take a break and decompress and hold that beautiful baby with your feet in the sand. Know that we are praying for you as you do and God is fighting this battle and He will win. Enjoy your vacation!

Still kneeling in Springfield

Anonymous said...

I've been heartbroken since I read this this morning and its taken me all day to try to find some words of encouragement for you and Shaina and as I was rereading i was encouraged by you. Your faith amazes me and strengthens me to get on my knees for you guys and to help hold your arms when you can't. It's okay to be sad. I am so sad right now just reading this. But knowing who has this situation in His hands changes the game. Oh how He loves us and oh how He loves Chaia. You guys deserve to take a break and decompress and hold that beautiful baby with your feet in the sand. Know that we are praying for you as you do and God is fighting this battle and He will win. Enjoy your vacation!

Still kneeling in Springfield

Gramma2u2 said...

Ben, your family will be in my continued prayers. Being a parent is by far the hardest job you will ever have. You have a special situation with a sick baby girl and we are all praying for a healing. Decisions are never easy to make when they are so close to our hearts. I pray you three have the time of your lives at the beach and get some much needed rest. Make memories, take pictures and God will be there with you all. Praying for your family...

Kimberly Fisher said...

Isaiah 33:6a He is your constant source of stability.
James 1:5 If any of you lacs wisdom, he should ask God, who gives to all and without criticining and it will be given to him.

We miss you, we love you and we pray daily for you.

Jackie Thompson said...

You are good parents!!! No matter what the decision. I'm praying for healing, renewal and strength for all of you. My LOVE to you always in all ways.

MamaMarty said...

As I read your post this morning, I lifted you all to the throne of grace. Though we cannot understand the 'why' we know WHO is in control. HE is there through the disappointment, fatigue and frustration. I continue to pray daily for the miracle of healing for Chaia and for strength for you and Shaina.

Anonymous said...

You are great parents and Chaia is a beautiful gift from God. Rest in LORD. I pray for rest, peace and strength that only God can give. Don't listen to those 'other' voices and no matter what the Dr says, just listen to the voice of God. His word. It's true. So shall my word be that goeth forth out of my mouth: it shall not return unto me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it. Isaiah 55:11