Sunday, September 28, 2014

So much good


First, I want to thank you so much for the outpouring of love and support on my last post.  I can't tell you how much it meant to me.  I have received countless emails from many of you sharing your story.  I promise to try and respond to all of you soon.  We were devastated last week but now we feel so much hope and optimism about the future.  

We had a busy but fun filled weekend! I think it helped us get back on track! 


Saturday morning was very special because our dear friend Timesia graduated from a Live Strong program and she invited the girls and I to attend.  My girls LOVE Timesia.  It was so inspiring to hear survivor stories from 12 people who had beat cancer and were on their way to a better, stronger life.  We were so honored to be apart of the morning.


We ran home, ate lunch and changed into princess dresses to celebrate our friend E on her birthday! I cracked up that of all the princess dresses we own, Harper picked Pocahantas.  I was not surprised.  We had a great time at the party.

We got home just in time to watch the Razorbacks play the Aggies that for about 80% of the game looked like we might actually win but in true Arkansas fashion we lost in over time.  UGH.  


Saturday night Harper was chosen to be a "future miss" in the local high school pageant.  Each contestant chooses a Kindergarten - 2nd grader that they think would make a great Miss BHS one day to escort them.  Harper was SOOOO excited about it! 


I thought she looked adorable.  Who knows - she might be on that stage again in 10 years! 


Little sister was happy to support! We had a lot of fun.  Even Scott. ha! 
 Harper had to bring out a rose for her contestant - our friend Madison - and then curtsy and wave.  Here she is mid curtsy.  

I was actually blown away by these girls in the pageant.  They were so poised and I kept thinking these 17 year olds put this 40 year old to shame.  They were SOOOO talented.  Many had aspirations for Ivy League schools or to go to NYC to pursue dance or theatre or planned to be doctors.  They had traveled the world learning languages and doing mission work.  



Madison got in the top 5 and was Miss Photogenic.  We were so proud of her! Harper LOVED it.  She wanted to get back on stage.  


Saturday was fun but the highlight of the weekend was today.  It was our annual DNOW weekend which is a HUGE weekend for youth.  About 300 or more youth stay in host homes and spend all weekend learning about God and doing service projects (and having fun).  We helped with baptisms this morning and it was a worship service all to it's own.  We had 14 people get baptized including a family who were all saved together and an exchange student who just came to America last month an atheist and she came to DNOW and found Jesus.  I wish you could have seen the light in her eyes when I talked to her about it.  She told me her best friend from home was an exchange student in GA and she had gotten saved too.  She said "we are going to study the Bible together and I can't wait".  

Friday, September 26, 2014

Hard

We received some tough news this week.  News we didn't expect.

After our last audiology appointment when I left disappointed to hear that hearing aids weren't helping Harper like we hoped, our therapist who works for Arkansas Children's also met with our audiologist.  They reviewed her history and charts and made a discovery.

And when we went to therapy on Wednesday, our therapist sat me down and discussed what they found with me.

Harper's hearing has gradually but dramatically declined over the last three years.  This was one of my fears I have had hidden deep inside.

Because her hearing has declined so much over just three years, they believe Harper will eventually lose all of her hearing.

(and this is where I pretty much lost it).


There is just such a difference between moderate hearing loss and wearing hearing aids and Harper completely going deaf.


And I want to push pause here and say that we KNOW and are SOOO aware and thankful that hearing loss or deafness is NOT the end of the world.  We are thankful every day just to have Harper here with us.  We know there are families everywhere that WISH all they had to deal with is deafness.  And I give myself that perspective often. And we in no way want to compare ourselves with people who are facing incredibly hard things.

But I can't pretend that this isn't hard. For us.

Harper will have so many more struggles and obstacles than we had imagined.

Our plan now is to just monitor her decline and at some point we will pursue cochlear implants.  I'm incredibly thankful for the miracle of modern medicine and that Harper will be able to hear no matter what.  And she has already developed language skills and has almost normal speech and this will just continue.

We have had a lot of tears at our house. I cried for two straight days and then woke up with a lot of hope.  I hate that Harper will have to work harder at life.  I hate that she will have struggles.  But I went to a Breast Cancer fundraising lunch on Thursday and Amy Purdy was the speaker.  Amy lost both of her legs to an illness and went on to win snowboarding in the Olympics and was runner-up on Dancing with the Stars.  She talked about how challenges can often be blessings.  She said you learn to be creative and work harder but you can do things you would never imagine.  And I know that will be Harper.

I know God is not surprised.  He has a plan for Harper and I feel like he is going to weave an amazing story through all of this.  There are going to be things that frankly SUCK that she will have to face but God gave her a personality and resilience that can take this one with ease.  I don't know many people that can handle this as well as she can.  She has an inner joy that always shines and complete hearing loss won't break that.


We also know that so much of how the outcome will be for Harper depends on how we as parents handle this. We don't want her to know we are sad. We want to encourage her. She doesn't know and won't know until it comes to a point where we need to talk about it. 

We know God could heal her. We read in Mark 7:31-37 that God can heal the deaf. But we pray more for His will in her life. I don't want to interfere with something amazing He might have for her. We so often draw closest to God during tough times and this may be what makes Harper cling to God the most.  I've prayed often that I won't stand in the way of things God wants to use to bring the girls to Him.  I'm not the rescuer.  HE IS. 

I want to share Harper's story to encourage those who may walk on this road.  But I would also love to hear from any if you who may have experienced something similar and who got CI's.  If you would email me, I would SO love to talk to you.  Or invite you to dinner.  :-)

One of my good friends shared this song with me for Harper. It's been on repeat this week and I share it with any of you who are facing hard things. God can make you Brave even when you are scared to death.

Because I am.  A little.

But I have a big God who knew Harper's name before I was even born.  Before time began.  And He knows the order of her steps.  She's not mine.  I have the honor of raising her but she belongs to Him.

And I'm trusting in that.