Monday, November 17, 2014

Expectations

What are our expectations of God? If you are a follower of Christ, do you have a list of things that you expect from Him? We talked about this in our small group at church yesterday and some of the answers were things that all of us have probably thought about...things like a certain type of lifestyle, a certain level of protection for our loved ones, meeting our "needs" and if we are completely honest we would probably throw in a few of our wants as well. Heathly children was at the top of my list, seriously don't we expect that from God?  I know I did...I had a picture in my mind of the perfect family and it certainly did not include Cerebral Palsy or seizures or severe developmental delays.  I am not proud of myself I am just being honest, I had/have a list of expectations that I expected from God in order for me to live the life I think I deserved.   Yikes...that's a lot of I's...looks like I think it's all about me.

It seems so easy to get caught up in all the things I think I deserve living in the age in which we live.  This age of entitlement and selfishness and instant gratification.  We have placed a Holy God right in the middle of our "right now, my way" type of thinking.  We have reduced Him to some kind of genie granting wishes.  How about a different perspective?  How about we expect God to be exactly who He has told us He is?  Christ never told us to "take up our cross," follow Him and we would never experience difficulty, hurt or hard times.  In fact James 1:2 says, "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds..." not if you face trials but when you face trials.  As our Pastor likes to say, you're either coming out of a trial, currently in a trial or fixing to be in one...friends we've got some stuff going on.

How about we expect God to be God?  His Word tells us He is loving, forgiving, faithful, strong and powerful.  These are just some of the things we can expect from God, because He has shown us who He is.

Psalm 136:1, "Give thanks to the Lord, for He is good.  His love is eternal."

Matthew 26:28, "This is my blood of the covenant, which is poured out for many for the forgiveness of sins."

Psalm 108:4, "For great is your love, higher than the heavens; your faithfulness reaches to the sky."

Psalm 24:8, "Who is this King of Glory?  The Lord strong and mighty, the Lord mighty in battle."

Romans 1:16, "For I am not ashamed of the gospel, because it is the power of God to bring salvation to everyone who believes..."

Dare we trust that the plan the Lord has for us is better than than plan we have for the short term future we think we can see before us?  Dare we give up whatever perceived control we think we have?  Because it is just that...perceived.  When we expect God to come in and "fix" everything, then we are tying our happiness and our joy to our circumstances.  We can trust God and we can expect Him to be exactly who He says He is.  In that moment, in that trust, in that "resting in Him," there is freedom.  There is freedom from the burden and the worry, there is a contentment in our circumstances, there is joy in our heart and in our home again.

It's not a lowering of expectations, it's not giving up on hope, it's a change of perspective.  Instead of continuously trying to force and bend God to our will which is impossible, let's line our life up with His will.  
It can be a beautiful thing.

Monday, October 27, 2014

Almost Seven

These beautifully cool crisp days, the leaves turning to bright red and brilliant orange, the kids choosing their Halloween costumes...all these things tell me what time of year it is.  Sometimes I think it could very well be 2007 and then other times I am so glad that it isn't.  She has one week left to be 6 years old.  The years with this girl and her brothers are going by too quickly.  We celebrate another year with her and I know that celebrate doesn't even begin to describe what we do on her birthday...but that's what you're supposed to do on birthdays isn't it?  Celebrate.  

We are leaving the 6's and moving on to the 7's.  I have had four 6 year olds and I won't have another one.  It's such a mix of emotions.  I can run the entire spectrum of emotions in minutes or seconds even.  I still mourn what she "should" be doing.  I still think about what she might be doing if her injury had never occurred.  I look at her beautifully long fingers and wonder if she would have been a piano player.  I think about our love of sports and imagine her on the soccer or softball field or would I have maybe even had a dancer, gymnast or cheerleader on my hands.  Yes, my mind goes there...not a lot...but enough, especially this time of year.

I try not to dwell on those things.  I don't want them to linger in my mind and on my heart.  She's here with us and I can hold her and feel the warmth of her next to me.  I can hold her hand and kiss her feet even if my tears are falling on them.  I find contentment in her smile and in those big bright eyes.  I find purpose in taking care of her.  

You can see why "celebrate" doesn't quite explain what we do on her birthday.  Together seems like a much better description of what we will be doing a week from today...just being together.

Colossians 1:16-17 "For in Him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through Him and for Him.  He is before all things, and in Him all things hold together."  

Wednesday, October 22, 2014

Special Olympics

We are experiencing fall weather at its finest here in the deep south...low 70's during the day and cool refreshing evenings once the sun starts to go down.  I have to tell y'all about the most amazing experience we had last Thursday. It was one of those picturesque fall days I was just describing.  Sophie Kate, Grey and I headed off to SK's very first Special Olympics at our school's football stadium.  We could hear the music and excitement building in the stadium as soon as we parked and started unloading all of our stuff, remember Sassy doesn't travel lightly these days. 

This was the scene as Sophie Kate entered the stadium, please note Grey's face it is priceless.
video
This was the scene as every participant entered the stadium.  Students from our high school, teachers, administrators and other supporters lined the entrance and cheered as every person entered the stadium for Special Olympics.  This was probably my favorite moment. I watched so many people walk or roll through this crowd of folks cheering for them each with a huge smile on their face.

Sophie Kate is not old enough to compete in the official Special Olympic events so she participates in the pint size games.  Take a look at all of the things she did...

 Parachute games...
 Bowling...
  Teeball...

 Stacking buckets...

Next we went to the sensory tent where Sophie Kate got to feel different textures...
 Play musical instruments...
and got her face painted...
 Look at that face...
This was our first experience with Special Olympics and it was a wonderful day.  It was so well done and our girl had a fabulous time.

Everyone should experience this day at some point in their life.  I am not just saying that because I have a special needs child.  I am saying this as a parent to typically developing children as well.  I want my boys to be a part of something like this...something that's not all about them. It's always a good thing to be less selfish, to be more understanding, to be more compassionate, to be a servant and to put other folks before ourselves.  Our world could use a lot more of all of those things.  It was a privilege to be a part of this day.   
  

Thursday, October 16, 2014

Their Room

I have always been very candid here with how difficult these weeks leading up to November 3rd are for me. Sophie Kate will be 7 years old this year and as I look back over this time it is not just filled with sadness and tears and loss of dreams.  It is a big ole mix of things...happy and sad, tears and smiles, anger and forgiveness...it's life that we have been experiencing.  I grab onto these weeks because life was still "normal" then (if any of us are really "normal").  It was this time 7 years ago that Sophie Kate's brain was healthy and uninjured...my body had not failed her yet.  She had not been taken from me...yet.

Her nursery was not her's alone.  She was to share a room with her closest brother, who was only 17 months old when she was born.  Grey had moved to a "big boy" bed and the crib that had held three baby boys was exploding with pinks and yellows and greens.  The nursery was "their" room. Grey was already livin' and lovin' life in "their" room and after what was supposed to be a brief, home from the hospital stay in our room she was to join him in "their" room.  She never made it there.  

"Their" room became his room and our room became "her" room.  I don't even remember how long she stayed in our room.  It was a long time and eventually we turned our dining room into her room and it has remained her room to this day.  Y'all already know that their connection runs deep.  So it won't come as a surprise when I tell you that when we are on vacation, Grey and Sophie Kate share a bed...
We felt like Cooper was too big to sleep next to her.  He takes up a lot of space and truthfully no one wants to share a bed with a middle school boy.  Jacob has been known his whole life to sleep all over the bed.  That boy never wakes up in the same position in which he fell asleep.  During the night that boy flips and flops all over the place.  We felt like it wouldn't be safe for him to sleep next to Sophie Kate. 
But this one...this one was just right.
He sleeps perfectly next to her.
Our vacation rooms are "their" room.  I take a lot of pictures of them sleeping next to each other.  Their relationship would have been completely different had they actually been able to share that room.  They wouldn't be who they are now had they shared that room.  Grey might be a bit more selfish than he is now, he might tease her more than he would care for her, he might not be as compassionate as he is now...I think back on so many things that I can look at as a loss, but there is so much to treasure as well.

Please pray for us in the coming weeks as our hearts and minds feel so many different things.  That we will not be suffocated by our memories but instead overwhelmed at the goodness of God in our lives.  God is faithful in the hurt and in the happy. 

Philippians 4:5 "Let your gentleness be evident to all.  The Lord is near."

Monday, October 6, 2014

What we have been up to

Life has a way of demanding that you jump right back in...even after surgery and an inpatient hospital stay. Sophie Kate has done just that, she is back to all of her pre-surgery activities...school, therapy, church and football games. Wow, I just had to stop and take pause there because those four things pretty much sum up our life right now.  It's kind of sad but kind of okay with us, we're pretty simple folks and it doesn't take much to make us happy.

Here's what we were up to just 3 1/2 weeks ago...
Inpatient at Children's

 Home and Happy


This is SK and Olaf and they like warm hugs...sorry I couldn't stop myself.
Grey received the Leader of the month award at school with his best girl by his side.  She was one week out of surgery here...she rocked that surgery like a boss!
Sophie Kate, 3 weeks post surgery, ready for the Homecoming football game this past Friday night.  I could hardly stand it, she looked adorable.
Is this not the best?  Some of the high school cheerleaders with our little cheerleader...love it!

We are enjoying our healthy days, we appreciate them knowing things can change and change quickly.  We feel them and experience them to their absolute fullest. We are grateful for bright eyes and smiles as well as the ability to hold and comfort when those same eyes show sickness. We treasure a plain ole normal, regular kind of day because that day is a victory for us.

Matthew 5:8, "Blessed are the pure in heart, for they will see God."

Monday, September 29, 2014

Connecting

Sophie Kate's recovery from having her tonsils removed is going very well.  We are seeing great numbers on her monitors, numbers that we haven't seen in weeks maybe even months.  I won't bog you down with all the details, but those of you who prayed for her just have to know that she is doing so so good.  I am so grateful for God's healing hand on our little girl.

We were all back at church together this Sunday...it has been 3 weeks since that happened.  It felt so good to back together with this body of believers.  We talked about this specifically in our small group yesterday morning and I would love to share with y'all why I go to a small group at church.  It's not so that we can shut out folks who don't think like we do, it's not so that we can judge all of the folks who aren't there and it's definitely not so that we can think of ourselves as better than everyone else...please hear my heart on this.  

I go to a large church and I choose to go to small group because that's where relationships are formed, that's where we get to know each other and support each other and encourage each other.  It's where we become involved in each others lives and struggles and victories.  It's where we cry together and laugh together.  It's where we open our Bibles together by either turning pages or tapping on the app, it doesn't matter.  What matters is that we are reading, digging, discussing and applying the truths in God's Word...we are not called to keep this stuff to ourselves.  We are not called to sit in our closed off circles with our doors shut.  We are called to love and share and invite and help and serve to the absolute fullest of our God-given abilities with a humbleness of heart.

I want to encourage you to be in a small group in your church or to visit a small group in a church in your community.  I know wherever you go you will find a group of messed up people in desperate need of God's saving grace.  Yep, I know that sounds weird but we are...we mess up, we let folks down, we say and think stuff we shouldn't, we are anything but perfect but we also love Jesus fiercely and want to show and share His love with others.  

I want to leave y'all with something our small group leader said yesterday that has stuck with me..."You will always find God running toward the mess."  It's true, God doesn't turn and head the other direction when we mess up.  As a follower of Christ, I have never felt His presence more than when things were difficult and circumstances were just plain hard.  I am humbled and grateful that the God of the Universe loves me enough to run toward the mess I make of things...He loves you that much too.

Ephesians 3:17-19, "And I pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God."

Monday, September 22, 2014

Home

We brought our girl home on Friday.  I could not have been happier to have my family all together this weekend.  It's so unnatural for us to be spread out here, there and everywhere.  It's necessary sometimes but getting us back together is almost all I think about.

This surgery seems routine to most, I know, but Sophie Kate does nothing by the book.  Removing the tonsils of someone who already struggles with their airway, presents a whole new set of potential problems and challenges...and our girl always keeps folks on their toes.  She had a very difficult surgery day.  I knew it would be a hard day, but 5-6 hours in the recovery room is not an experience I ever want to repeat and I know Sophie Kate feels even stronger about that than I do.

The hours that followed in the PICU were equally difficult as we hung on every number on the monitors and every alarm that sounded minute by minute.  We went to bat for our girl pleading for time before the decision would be made to re-intubate her.  They don't know her like we do. We knew that all she needed was time for them to see what she could do...this girl is so strong.  The looks on the doctor's faces was priceless.  They could not believe she did not have to be re-intubated.  I love to see a little 6 year old girl prove medical people wrong.  See it all goes back to the "they don't know her" thing...and I love it when she leaves them speechless.

This thing isn't going to be easy any time soon.  I've heard stories about how bad this stuff hurts and we are seeing that in our girl.  Now that we are home, the recovery starts and I am told that days 5-7 can be rough.  I pray that God whispers to her heart, her mind and her hurting places and takes the pain away from her.  That little girl in pain is a weight I cannot bear, God give me the strength to care for her as I sit by her side again.

This picture says everything I cannot say about our home...
Him and Her
They are all that is good in this world.

Please continue to pray for her recovery.  We are ready to see those smiles come back and stay for a while.