Sunday, August 5, 2012

This Year

Happy Sunday, friends!
I hope you will forgive me (us) for taking so long to write the blog we promised. It’s tough to find time to sit down and share my thoughts…plus, it seems that anytime I sit down I just want to fall asleep! 

But tonight I am ready! I’ve have a full cup of Mountain Dew and I’m in this for the long haul! 

In all seriousness, I hope that I can adequately convey my thoughts about the last year with all of you this evening. I’ve been mulling over my thoughts for quite some time and I feel like there are so many things that I want to tell you about. I fear that I will fail in telling you just how life changing this year has been. Well, I guess you know that it has been life changing but it truly blows me away just how different our lives look on August 5, 2012 compared to July 27, 2011. 

If you’ve not been reading our story over the last year and you want to start at the beginning (or at least read the first blog of our journey) you can start HERE.

This blog is written from my (Rose’s) perspective. Brian is hoping to write his blog post soon. My hope is to share my personal journey. I don’t want to offend or upset anyone. I know that some of this content may be extremely upsetting but I also want to share my real life experience of this last year. You may learn more about me than you want to know, but you’ve all been such a big part of Jude’s journey and ours over the last year and I feel it is important to share with you what God’s been doing.
Last year, after our 20 week ultrasound my heart was broken. Honestly, I was terrified. I was so worried that the Lord had chosen me as a mother who would lose her sweet baby. Having a sick baby was not on my radar at all. Having a sick baby that had a 50/50 chance of surviving wasn’t something that I’d even considered in my future. Of course, who expects that? 

After our 20 week ultrasound, the doctor walked into the exam room and flipped open my chart and immediately my eyes fell upon a full page of pictures of our son. I knew that something was dangerously wrong. And then our world spun completely out of control. Even though I felt desperate, broken and ripped from normal life I knew that the Lord was with me. And I knew he would be with Jude too. 

But through all the pain we were passionately loved on by our church and friends. I hardly ever cooked during the months leading up to Jude’s birth. Ladies I did not know were bringing meals to keep me off my feet and feed my family. My dearest friends would drop by to pray with me or give me a hug. My closest friends pulled me in even closer and helped me continue life. I needed so much support and the Lord truly provided that for me in ways that I cannot express. 

The days and weeks after July 27th feel like a blur for me. I cried a lot. I begged the Lord to choose a different path for my son. For me and Brian. And for my sweet daughter. I knew that this was going to shake me and change the world I knew…but even what I expected the changes would look like are nothing like what I anticipated. You see, I am a planner. And I think I was even trying to plan what this horrible journey would look like. 

Here is a snapshot of what was in my head:

a) My sweet son would die soon after his birth. We would grieve. Our hearts would never be the same. He would be buried on the family farm (we have a family burial plot) and I would have an extremely difficult time deciding if I wanted to visit the farm or not. I would want to be where he was buried but being on the farm would also be a great source of pain for me.
b) Jude would survive his CDH battle and we would bring him home to Simpsonville in a few months. Jude would struggle to gain weight but he would be eating by bottle or breast some of the time. He could have a g-tube and might need oxygen. It would be hard, but Jude would be alive. We would have the love and support of our friends and our families would visit often to help us.
But as you know, neither of my plans came to pass. 

Jude did not die.  But he nearly did. 

Many times. 

PRAISE my almighty LORD for this blessing!

But Jude did not come home in Simpsonville in a matter of months either. It took him nearly 6.5 months to leave the hospital. And we are now living with my parents on the family farm (where we thought we would burry him!) and we need family support/help daily.  He is still not eating by mouth. A G-tube is pretty much off the table. And our boy’s lungs were strong enough to head home without O2. 

Oh, how the Lord changes our plans! 

But let me be honest here. I am still struggling with being here. (Isn’t that terrible?) I am over and abundantly thankful that Jude is alive and thriving! But I am heartbroken that I am not at home in Simpsonville. I feel heartache like one feels after a break-up. I miss my friends. I miss our church. I miss my house. I miss my dogs. I miss the life that we had before the mess that CDH made. 

But I also know that Jesus never, ever left us during this journey. This journey hurt more than I thought it would. It turned my life upside down. But the Lord knew what He was doing. I am certain of that. 

Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. – Proverbs 3:5 AMP

There are days where I want nothing more than to run right back to the life that I knew before July 27th, 2011. But I also know that I would not take back the sweetness and closeness of the Lord’s love that I felt over the last year. I felt the Lord with me always. Even when I wanted to scream and shake my first at Him, he continued to LOVE me and carry me. As I mentioned in previous blog posts: every day I asked the Lord to give me just what I needed for that day. I learned that just what I needed for each day was Him alone. 

And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ. – Ephesians 3:17-18

Now that we are on this side of our journey I can say with certainty that we are just where the Lord wants us to be. We’ve seen so many confirmations that this is just where He wants us. And as cliché as it sounds, I’ve felt that the Lord made the “big picture” clearer to me over the last year. And I pray that I am always able to recall just how desperately He loves us. I know even more that this world is a broken place…full of sin and hurt. But that is not the end of the story. I know the end. The end with Jesus is healing. It is love and joy. There is no pain. Only a deep and certain peace. Because we are with the most holy God. Oh, how I long for that place that we will call home…our real home is with Jesus. 

But I trust in your unfailing love; my heart rejoices in your salvation. – Psalm 13:5

There are so many things that I wanted to share with all of you in this post. But I am hoping that the Lord will provide ways for me to share with you about the real pain we experienced AND the healing from His beautiful love over the last year. I may have the opportunity to share more stories on this blog or maybe the Lord will provide a way through face to face meeting. 

Lastly, I wanted to share some lyrics to a song (there are many in this journey) that greatly impacted me during this journey. A week or so after Jude’s diagnosis we sang this song at our church and I wept throughout the song. It struck me to the center of my heart. I felt so scared. So moved. So desperate for the Lord’s comfort and love. The last verse was particularly important to me during this journey.

Soon after Jude had reherniated and I was once again fearful that we would lose him again the Lord sent this song to speak to me. While we were in Charleston we hardly ever had the chance to go to church but one Sunday we visited Lighthouse Church in Mt. Pleasant and we sang this song. 

I share it with you now and hope that it will move you as well. We love you all. Thank you for weathering this journey with us. The Lord has richly blessed us through your love, support and prayers. 

In Christ Alone
In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fullness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.


  1. Love love love this post. You have inspired so many people with your incredible faith, and the good Lord knows you have been a tremendous source of comfort and hope to us CDH mamas! Thank you for sharing yourself and your family. Continued prayers!

  2. Rose, thank you for sharing your heart on this post! We are so thankful for the Lord's healing of Jude. I had fun watching Annabelle "center stage" at the performance last week - and I snagged a great pic of you and Brian watching her! I would love to get coffee sometime. Even if this month is crazy, perhaps when MMO starts back up next month :)

  3. Wow. Thank you. Your post made me really read and comprehend the words of this song I often sing with gusto. Thank you for living those words before me.