Wednesday, April 08, 2009

The End?

It's been over a year since Benjamin's diagnosis and surgery and almost one year since he graduated out of the helmet. I've kept this blog up to record memories for Benjamin to have one day. But thankfully, we are at the end of his cranio story.

If you look back at posts from May of 2007 you will see the anxiousness of a mother as she awaited the arrival of her new son.

Not long after that, you will see the exhaustion of motherhood taking over, as well as the frustration of having a difficult baby.

In November and December of 2007 you will see the uncertainty of a family as we faced a never before heard of diagnosis and the doubt and fears of a major surgery on our sweet six month old.

There are times of joy, or praise, of thanksgiving too.

One of my prayers is that through this blog, you will see our faith. A faith that carried us through the hard, dark, and uncertain times. A faith that made our joy and praise richer than ever. Look past the doubt of this mother, and see the hand of Benjamin's Creator as it moves through our lives.

My other prayer is that this blog would be used as a resource for parents who have children facing the same diagnosis as Benjamin faced. It's scary! Craniosynostosis is a big word that I had never heard of. If you are a parent of a cranio kid, you're not alone! On the sidebar of Benjamin's Blog is his story, as told through this blog. And the best part is that there's a happy ending!

And if you have a cranio kid, please feel free to contact me at for more encouragement. Or just leave a comment, so I know you were here.

This picture was taken today, of my beautiful, blue eyed, cranio kid!! How far God has brought us and I praise Him for how good He has been to us!

Thank you to all our friends and family who have supported and encouraged us on this journey. You mean more to us then we can express!

God is good all the time, all the time, God is good!!!

Monday, February 09, 2009

Benjamin's Story of God's Faithfulness

I posted on our family blog about my new "hobby", making books on-line. My first attempt at making a book came after I got word that Snapfish was giving away a free book. I jumped on, confirmed the information, and decided I wanted to make a book of Benjamin's journey. Obviously, he won't remember any of the things he went through, as we dealt with his cranio. I wanted him to have something tangible, something that contained some of my thoughts and prayer. A place where I could record some of the scripture I prayed over him. One place where I could record the song I sang to him while he was in PICU. I had toyed with the idea of putting it all in his scrapbook, but didn't want the whole cranio thing to be the main focus of his first year.

It was hard to put all those things in one place. It was hard to go through all the pictures again, and have the memories flood my thoughts again. I laughed, I cried, I prayed, praising God for how well Benjamin is now.

Finally, I was happy with the end product, and I went to order it, only to find out that I had missed the deadline for a free book by one day. I was so upset!! This wasn't just any book, this was my heart. But it was a month before Christmas, and I wasn't about to pay full price for something I didn't need.

Well, my Mom, being ever so sneaky, figured out how to get onto my Snapfish account, and ordered the book for me for Christmas! I was so excited! And it's beautiful. I love the way it all came together. It really meant to world to me, and I was so thankful that once again, my mom saw a need and met it for me.

So here's parts of Benjamin's story book.

the cover

One of my favorite pages, the grandparents with Benjamin.

Gotta love the helmet pictures!!!

And the verse that comforted me so much, the verse that I prayed over Benjamin, and the verse I claim for him... Psalm 71.

Though the book was really hard to put together, I'm thankful for this book. I'm thankful for the reminder of God's love, goodness, grace, peace and most of all, faithfulness. He took something so very scary, so very hard, and worked it for His glory and our good.

The last page of Benjamin's book says, "God is good all the time. All the time, God is good."

Amen, and amen!

Thursday, February 05, 2009

A good report

Isn't this a sweet face???
Yesterday we made the familiar trek to Austin to see Dr. Aronin, Benjamin's neuro surgeon. We have to go every six month, just to check in, make sure the hole in his head is closing up, make sure his development is on track, share any concerns, all that good stuff. Benjamin's appointment went very well. He is doing great, is on track, has a shrinking hole in his head.... life's good! We'll go back again in August, just to check in again.

At this stage in the game, we expect to hear good reports. But we never take them for granted. There are so many things that could have gone wrong, that could still go wrong, and we are thankful that God has given Benjamin such a remarkable recovery. He is so good to us!

Sunday, February 01, 2009

Right Back

As I'm driving, on the same road I drove to and from Austin so many times, I get hit with that old familiar feeling, and I'm right back where I was.

While standing in church, training the two older kids, the words of a song will penetrate, " All my trust on Thee is stayed, All my help from Thee I bring; Cover my defenseless head With the shadow of Thy wing." and I'm right back where I was.

A picture.

A conversation.

Getting a glimpse of his scar.

Any of these things can take me right back to where I was. To those hours in the waiting room, when all I could do was pray, hope and wait, longing to hold my baby. To those moments in the PICU when I was so scared, so worried, so overwhelmed with emotions. To the moment when we got to go home! When we received good report, after good report. To all the exhausting trips to Austin and back. So many moments. Some good, some bad.

The road we've traveled has not always been easy (isn't that just life?). This road hasn't always been filled with the joy that I long for. But this isn't a road we've had to walk on alone. Every step of the way, our Savior has been with us; guiding us, protecting us, encouraging us, strengthening us. And that makes all those other moments worth it, knowing that I am now walking a closer walk with my Savior.

Thursday, November 27, 2008

One year

Thanksgiving 2007

Thanksgiving 2008

My, what a difference one year and cranial surgery can make!

Happy Thanksgiving

Happy Thanksgiving!!!

Not only is today Thanksgiving, but it is also one year since Benjamin got his diagnosis. How far God has brought us all!

My hope was to write several posts about all the things I'm thankful for, but that didn't happen. So, I'm just going to list several of the things that I am thankful for.
  • I'm thankful for Benjamin's health. It hasn't been an easy road, but today, he is a perfectly healthy little boy! That's more than I could say a year ago.
  • I'm thankful for God's protection and provision. He protected Benjamin during surgery and recovery. He protected us during several trips to and from Austin. He provided for all our needs... physical, spiritual, monetarily.
  • I'm thankful for my parents and for Curtis' Dad and his Dad's wife Melinda. Their love, prayers, encouragement have meant so very much to us.
  • I'm thankful for our siblings who have been there for us as we've walked this sometimes rough road.
  • I'm thankful for our dear friends the Findleys, who have joined us in the middle of all our drama, including driving to Austin to be with us after Benjamin's surgery.
  • I'm thankful for all our friends who have supported us with prayers, food, babysitting, listening ears, and just loving us in every way possible.
  • I'm thankful for the Word, and how the Spirit has comforted.
  • I'm thankful for Kenny, Lindsey, Adam and Andrew who helped, comforted and strengthened us by their faith.
  • I'm thankful for Kris, Andria and Zak, who can related to our struggles.
  • I'm thankful for the great medical care that Benjamin received.
  • I'm thankful our church, who cared for us like family.
  • I'm thankful for the people who stopped what they were doing to hold us, hug us, and pray with us.
  • I'm thankful for prayer.

God has been so good to us! We have so much to be thankful for this year. Last Thanksgiving, we still didn't have Benjamin's diagnosis. We were still in a state of worry, confusion and prayer. And now look at where we are! It hasn't always been easy, but by God's grace we've made it.

Thank you again, to all of you who have lifted us up in prayer, who have encouraged us, who have loved us so well!

Friday, November 14, 2008

Thankful for Curtis

As I reflect on the people who have been there for me and our family as we've walked down this crazy road with Benjamin, the very first person who comes to my mind is, of course, Curtis.

From the moment he became a father, Curtis has been an amazing father! What an amazing process to watch him become even better at a job he already excels at, as we add more children to our family.
In the above picture, Curtis was telling me, "I know you can't tell, but I'm smiling! A lot!" Benjamin's birth was such a joyful day for us. Despite the surprise of the pregnancy, despite the post partum depression that we dealt with while I was pregnant, it was a wonderful day! Curtis was nothing sort of incredible during my pregnancy with Benjamin.Benjamin was a beautiful baby. Curtis and I spend the afternoon he was born, before all our company arrived, just staring at our beautiful new son.
During the really trying days, when Benjamin didn't sleep, when he cried for hours, without being consoled, Curtis was my support. I could call him, totally freaking out, and at the end of my rope and he had a way of making it better, of calming me in the midst of the most chaotic moments (and there were many).
Once Benjamin received his diagnosis, and we started down the road of surgery and recovery, Curtis was there for him and for me. There were days where I was so scared, so overwhelmed, and so angry, that emotions spilled out, and Curtis took it. We fought, we cried, and at the end of the day we were so thankful for each other.
Curtis, thank you for walking down this road with me. Thank you for calming me, for pointing me back to Christ. I look back at the past year, and I really don't know how we made it. But I know that the love we share has made it possible. Thank you for loving me, and our children so much!

Wednesday, November 12, 2008

Can you believe it's been almost a year?!

I was just going through a few old posts, from this time last year. This was about the time we were wading through the insurance mess, trying to find out what to do, what doctor to see, and praying that Benjamin didn't have this head "thingy" (I still didn't even know how to say craniosynistosis!). I spent as much time as possible reading up on this head deformity, taking pictures of Benjamin's head to compare to the pictures on line, praying, reading scripture, and just worrying.

My how long ago that seems!

As I look back, I am flooded with many emotions. But mainly, I am overwhelmed with thankfulness. I am so thankful for the protection that God showed Benjamin! To think how he was, and to see him now is like night and day. God lavished his protection, grace, and healing on Benjamin. I am so thankful!

There are also many people to who we are forever thankful for. As I begin to prepare for the holiday season, I'm going to take time to remember just a few of the people I am so thankful for. So, stay tuned!