Wednesday, August 26, 2015

My Daughter Has Chiari

July 20, 2015 is one of those days that I will never forget.  The morning started out so well and full of promise.  My dearest best friend, her husband, and their sweet one year old boy were actually spending the weekend with us.  We had just finished up breakfast when I received a message that I had a new test result in my daughter’s my chart account.  In the two weeks that had followed this day my sweet daughter had a number of blood tests, met with physicians, and had even had an MRI due to unexplained weight loss and lack of desire to eat. 

I quickly signed on and scanned through her most recent MRI test results.  Then the bad words started to pop out at me like: anomaly, decrease CSF, less than expected for age, etc.  All of the sudden my heart sank and I frantically wanted to talk to a doctor.  As I continued reading I found the words that would take my world and shake it upside down. 

Chiari One

I frantically hit print and raced to find my husband.  He was about to leave to take our son to swim lessons.  I stopped him as I tried to compose myself and said, “Call your Dad.  I want to know what this means.  I know it’s bad but I want to know how bad.”  You see God in His sweet sovereignty had given me a father-in-law who just happened to be a practicing physician in Arkansas.  Thankfully he was able to talk with us and we later spoke with our pediatrician that afternoon.    We learned that our happy, seemingly healthy looking daughter had something wrong in her brain.  Not a broken bone, not a bad virus or RSV again, but something inside her sweet head. 

Although it is supposedly very common I had never heard the word Chiari (pronounced kee-AHR-ee).  A Chiari one malformation is where the back of the brain (cerebellum) goes down below the base of the skull and into the upper spinal canal.  It is not cancer but it is scary.  Young children with Chiari experience trouble feeding, abnormal breathing, and headaches among other things.  The best treatment is surgery to make more space for the brain and spinal cord.  

The past few weeks have been incredibly difficult.   I think I have written this post at least ten times in my mind.  What words can do justice when your heart is breaking?  In so many ways it truly does not seem possible.  How could my happy girl have something wrong with her brain?  Right now I think we are living between shock and denial.  I wonder what is going to happen to Eva right now.  Will she have surgery on her precious head?  How in the world are we going to get her to eat? 

There are many days when things feel quite overwhelming but I am so thankful for the grace of God that continues to pour down on us.  Personally for me one of the hardest things to swallow is really thinking about the future and what Eva’s life will look like.  No matter what happens our family is strong because we trust in a God who knew exactly that chiari would enter our world.  He also ordained that we would move here to our current ministry where we live less than an hour from one of the best children’s hospitals in America.  My prayer through everything is that our entire family will be able to say with the Psalmist in Psalm 91:2, “I will say to the Lord, My refuge and my fortress, my God, in whom I trust.” 

Right now my life is crazy.  My week is filled with two to three therapy appointments per week not to mention numerous visits to specialists, telephone calls, keeping a meticulous food diary, and trying to manage everything else in our lives.  Our big appointment takes place in September in just a few short weeks where we find out if the neurosurgeons at Cincinnati Children’s Hospital think my sweet Eva needs to have surgery now or if they will postpone it for a few years.  We do covet your prayers knowing that a God who can raise the dead can also heal our sweet girl.  We just don’t know if God will choose to heal Eva through the skilled hands of the team at Cincinnati Children’s. 

I am planning on writing regular updates on our blog about our daughter’s progress.  Not only is this an incredibly emotional journey but I have not been able to find much on the internet for a seemingly common brain malformation.  I know for myself that I would love to read through the story of someone else’s journey through Chiari and feeding issues. 

For now let me leave you with a quote from Sarah Edwards to her daughter Esther right after Sarah’s husband Jonathan Edwards and her son-in-law died within two weeks of one another:

“My very dear child, What shall I say?  A holy and good God has covered us with a dark cloud.  O that we may kiss the rod, and lay our hands upon our mouths!  The Lord has done it.  He has made me adore his goodness, that we had him so long.  But my God lives, and he has my heart.  O what a legacy my husband, and your father, has left us!  We are all given to God; and there I am, and love to be.” 

Monday, August 24, 2015

This Week's Goals

One of my top goals for this week involves spending lots of times outdoors playing with my sweet children.  

Happy Monday Everyone!  Now that the fall semester is in full swing it is the perfect opportunity to get back to goal setting each week.  Here are a few of the things I hope to accomplish this week!

  • Enjoy an at home date night with my husband.  
  • Attend three therapy appointments with my daughter this week.  (I will hopefully be writing a post this week about my daughter's recent health concerns.)
  • Begin reading the book Mary On Horseback: Three Mountain Stories with the children.  
  • Spend as much time outside as possible!  It has been absolutely gorgeous today and I know that in another few weeks we won't feel like splashing in a pool or running wildly through the sprinkler.  

  • Make or buy a birthday gift for my brother who turns 20 this week!  I would love to sew a gift for him so if you have any ideas please let me know.  
  • Begin sewing a gift for my four year old niece.  
  • Exercise three times this week. 
  • Finish reading one book.  
  • Aside from my usual weekly responsibilities, this week I need to finish preparing my syllabus for the ACT Prep class that I will be teaching at our Homeschool Coop.  
Ministry, Hospitality, & Friendships:
  • Learn a brand new piano arrangement for Sunday.  I have been working on an arrangement of Jesus Loves Me that my husand's grandmother played thirty years ago.  
  • Enjoy a nice long chat with a friend.  Our crazy schedule isn't going to allow for a play-date this week so I'm planning on settling for a phone call.  
  • Determine fall availability for tutoring & piano lessons. 
  • Spend an afternoon helping my Grandmother.  
  • Write two blog posts for the blog including a blog about my daughter's recent health concerns.  
I think that covers it for the week!  What goals do you have for this week?  

Sunday, August 23, 2015

The Importance of Rest

Last Sunday my husband and I had the opportunity to attend worship services in Paragould, AR at a friend's church.   As the pianist at my church it is always a delight to have a break from playing so that my soul can fully worship my King.  (Of course it is possible to worship through playing music but I love being able to worship without also accompanying a congregation at the same time.)

I have been thinking about last Sunday's sermon on resting all week long.   (You can actually listen to Pastor Jared's sermon through this link.)  As an organized, type A efficient young woman I have trouble resting.  I feel this inner drive to keep doing and making and going and on and on and on.  I just can't sit still even though I know it's important.  One of the worst things in the world for me is to be somewhere and to have nothing with me to occupy my time.  I am the lady at the doctor's office who brings a bag full of activities for a 20 minute appointment for fear or running out of work to occupy my time.  :)

Rest is important for all of us.  Let me say that again.  Rest is important.  God thought that rest should be such an important priority in our lives that He established the Sabbath in Genesis.  Sabbath.  A day of rest. A time to step back from our busyness and be refreshed by the Lord.  Why is it so hard for us as Christians to embrace a good thing that God has given us?  Rest is a wonderful thing.

Throughout my life I have wavered a lot in practice of resting or taking a Sabbath each week.  There have been years where I worked through legalism and then there have been years when resting was not a regular part of my week at all.  I was utterly convicted last week of the importance of setting aside a day to rest.  God gave us the example of Sabbath rest.  Not as a punishment but rather as a gift.  Hebrews 4:9 tells us, "So then there remains a Sabbath rest for the people of God."  Think for a minute how your week could be utterly changed if we took these words to heart.  How could taking a day to rest and focus on our walk with Christ impact your life?  

In Mark 2:27 Jesus told his disciples that "The Sabbath was made for man, not man for the Sabbath."  For those of us who believe the Gospel, we are able to rest the way God rests.  This doesn't mean that my day of rest will include spending all day catching up on my favorite episodes of Downton Abbey.  Instead it means a day focused on refreshing my soul as I set aside a specific day to spend time with the Lord.  This sounds great but can this really happen for today's modern Christian woman?  Yes!  Over and over again one of the things I have to continually tell myself is that who I am is not dependent on what I do.  Although I wish often that God would give me just a few extra hours in my day, He has already given me the time to accomplish everything that He wants me to do.  God does not love me more because I accomplished everything on my to-do list for today and He doesn't love me any less if I don't accomplish one thing.

As I have mulled over Pastor Jared's sermon this past week I have been working on fleshing out what it truly means to rest and enjoy God one day a week.  I have been asking myself the question:

 "What helps me to enjoy God?"
  • Spending time with Christ as I pour over his Word, spend time in prayer, and take advantage of time to write out what He is teaching me in my journal.    
  • Getting outside and enjoying God's creation through walking, hiking, kayaking, exploring parks, and horseback riding.  
  • Taking a nice long nap outside on a blanket.
  • Sharing what God is doing in my life with friends or with my husband.  
  • Spending time with my family making breakfast and going on an adventure.  
  • Eating simple meals.  Practically speaking a restful day also includes leisurely easy meals to prepare that are for the most part un-impressive.  This also means that I am not spending my day washing three sinkfuls of dishes.  
  • This also means that as a pastor's wife, my day of rest is NOT on Sunday.  For pastor's Sunday is a long work day.  My husband's work day often begins at 6:30 on Sunday morning and extends until well past dinnertime.  I have decided to make Sunday a fun day for my children but also a day of work in order that as a family we can truly rest on Saturdays.  
So what about you?  Do you regularly take a Sabbath or set aside a day of rest?  What does that look like in your own family?  I would love to hear how you intentionally set aside time to enjoy God.  

Friday, August 14, 2015

July Reads

Ah summer.  The time for soaking up the sun, building memories, and reading lots of great books.  Here are a few of the books I read in July.  

Women Living Well: Find Your Joy in God, Your Man, Your Kids, and Your Home by Courtney Joseph:  I was first introduced to the author when I came across her youtube channel by the same title.  I am so thankful that I found this book.  It is so refreshing to find a young woman who loves God with such passion and yet is not afraid to stick to strong God-honoring convictions.  I look forward to seeing more work from this author in the future.

Living Well, Spending Less: 12 Secrets of the Good Life by Ruth Soukup: I found myself inspired as I read this book.  Mrs. Soukup writes with such honesty and authenticity about her journey with money.  This book is a must-read for anyone looking to enjoy the simple things in life while saving money at the same time.

Talent to Treasure: Building A Profitable Music Teaching Business by Marcia Washburn:  I thought this book was packed full of practical tips on how to build a wonderful music teaching business while also balancing the needs of your unique family.  I look forward to implementing many of the author's suggestions in the future.  I do think that the price of this book was a little ridiculous.  It retails for 19.99 and that is just ridiculous.

The Blender Girl Smoothies: 100 Gluten-Free, Vegan, and Paleo-Friendly Recipes by Tess Masters:  As much as I tried to get into this cookbook I just couldn't.  This book is definitely a healthy foodie type of book.  While the pictures are stunning the actual smoothies look fairly gross.  I'm pretty open to healthy foods and will eat just about anything but I couldn't get motivated to make these smoothies.  My biggest problem with this book was the fact that so many of the recipes called for strange ingredients that I don't routinely keep on hand.  I usually only keep cookbooks that contain tons of recipes that I plan on making again so this one probably won't make the cut.  Please note that I did receive a review copy of this book from Blogging For Books.

What books have you read this summer?  

Thursday, August 6, 2015

Frugal Things I Did Last Week

A few of our library finds from last week.  

It feels as though the final days of summer are upon us as everyone prepares to start school in the next week or so.  We have been busy, busy and I will confess that it has impacted our frugality to some extent.  I am hoping to buckle down and really get back to the business of saving money and enjoying life with my family this week.  Here are a few of the frugal things that we did last week to save money: 

My son cut zinnias from our yard which were absolutely beautiful.  They are called Hot-Crayon Zinnias from Renee's Garden Seed and I am in love with them!  The fact that my five year old son cut them and brought them to me made it even better.

Eli had a blast attending his second and final week of swim lessons last week.  I am so thankful that we were able to find affordable swim lessons this summer.  Eli had an absolute blast and I am thankful that he is learning such important, life saving skills.

On Wednesday we had a picnic at a local park close to where Eli was taking swim lessons.  We had an hour to kill before open swim began.  We all love exploring new parks and this one was no exception.  After playing and a picnic we headed back to the gym for open swim with my mom and sister.  Open swim was only $1 per person and we had an absolute blast.  The pool also has a diving board which is a rare treat where we live.  No fear Eli went off time after time!

I also had my hard drive replaced on my computer and a number of viruses of removed.  Ugh.  Replacing my hard drive was not cheap but it was much cheaper than buying a new computer.

Our entire family headed to the library Saturday afternoon.  We checked out a number of books, a cd, and a few movies.  The children also picked their final prizes for summer reading.

On Friday the kids and I headed to our local farmer's market in town.  I was pleasantly surprised with the wide selection of items that were offered.  Where we live the farmer's market is about the same price as I would pay in a regular grocery store but I love the fact that I can support local farmers in my area.  I also love the experience for the children and the fact that I can stock up on produce without having to enter the grocery store.  I spent only $12 and I know that all of the food that was purchased was real food.  No items happened to jump into our cart since we weren't at a grocery store.

We combined errands in order to minimize gas expenses and save time.

I sewed 2 baby blankets and four burp cloths.  Sewing baby items really is the best!

What frugal things did you do last week?