Sunday, December 14, 2014

Don't Miss It

We are trying to navigate our way through these days with positioning and comfort concerning Sophie Kate and her right hip. I addressed our newest challenge with our girl in the previous post.  We are having some pain free days and some pain full days.  Unless you have experienced such a thing there are no words I can use to describe what it does to you to see your child in such pain.  The only thing I can say is that Sophie Kate is the toughest and strongest person I know.  The pain she has experienced in her life is unimaginable to most of us and most of the time she doesn't even cry.  So I don't even want to think about the amount of pain she is in for tears to roll down her face...that's where we are...it's not everyday but it's too many days.

When you see us out and about without her, know that a part of us is missing.  Part of my mind and my heart is at home with her, thinking about her and concerned for her. It's not that I do not have complete confidence in the person who so kindly sacrifices of their time to care for her, it's the mama in me or simply the human being in me. When you see me without her, when I shouldn't be without her, you have to know that I am walking a very difficult line between faking it and bawling.

I can't make someone understand who doesn't want to, all I can do is share.  Make time for people, have a conversation, play a game, hold them in your lap or sit next to them and listen to them while you let something else go. Sophie Kate doesn't need anything that she will get this year (and I'm sure the same could be said for most of us). If I could be so bold to speak for her, let me tell you what would make her short list...talk to me, read to me, sing to me.  She wants a comfortable spot with her family and friends all around her and she wants us to laugh and love and just be.    

I hope you can feel the struggle in my words.  The conflict in my soul is something I can feel.  Please don't miss the message of Christmas in all the presents and demands of the season.  The message of hope and love that came to save a world lost in the darkness of our own sin.  Don't miss the message of the manger where love came down and walked among us.  Don't miss the message of the cross where Christ took the full punishment of our sin upon Him.  Don't miss the message of the empty tomb where Christ defeated death and made a way for us to live with Him in heaven.  Don't miss the message and gift of eternal life in Christ this Christmas. 

After singing "Just as I am" this morning in church, I feel a verse from the King James version coming on...Isaiah 9:6 "For unto us a child is born, unto us a Son is given: and the government shall be upon His shoulder: and His name shall be called Wonderful Counselor, The mighty God, The everlasting Father, The Prince of Peace."   

Sunday, December 7, 2014

This season

I want to catch y'all up on what has been going on here. Sophie Kate has been dealing with pain off and on since Thanksgiving week.  We found out last Friday that her hip condition has worsened.  This is only going to mean something to medical folks but SK's right hip has been 20% subluxed for years and we have now found out that it has moved to 50% subluxation.  The simplest way I can explain it is that her right hip was 20% dislocated and now it is 50% dislocated.  This condition is not uncommon in children like Sophie Kate.  Remember when I told y'all that her muscles are literally pulling her joints out of socket?  Yeah, that's what is happening, it's sickening.  I can handle a lot when it comes to this girl but I cannot handle seeing her in pain.  

We have an appointment with her orthopedic doctor next week.  However, we have been talking about this moment for years.  These are the kind of conversations we have with her doctors.  We talk about the progression of Cerebral Palsy and the toll it takes on the body.  We talk about surgeries and meds and therapies and test results and quality of life.  We will talk about all of this in front of her and it will be heartbreaking.  There is not a lot to do in this situation.  There is a surgery option and we will listen to that, we will talk about doing nothing and what that will look like, we will talk about managing her pain and I will cry.  

As I sat beside this girl Friday afternoon praying over her with tears streaming down my face, God renewed a fresh perspective in my heart.  Sophie Kate has a unique way of organizing priorities and it ends up being pretty simple...none of this stuff matters.  None of this stuff that is in my home that I think is so inadequate compared to everyone else's home matters...none of the clothes I have that are never good enough, none of the cars we drive that aren't as nice as everyone else's cars, none of the vacations, none of the pressure we put on ourselves this time of year...none of it matters.  What does matter are people and family and friends, and yes both quality and quantity count.  What does matter is being intentional in our relationships and our sincerity of heart.  What does matter is laughing, talking, praying and just plain being together.  Gifts and decorations are fun but they do not matter.  Special times are made special because of the people I spend them with.  

I am not even going to apologize for this...I have become very disillusioned with the commercialization of Christmas.  I am done with making it something that it is not and I do not have to let all of that permeate my family and our Christmas.  I would rather our home and our Christmas be full of Christ instead of presents.  I would rather us be so full of Christ that we can't help but spill over and out to others and that this time of year becomes more about giving than receiving.  We become more outward focused than inward focused.  Being a part of Sophie Kate's world shows me how precious and how fragile life can be. And I do not want a minute of that message to be lost in the hustle and bustle that so wants take over this holiday.    

1 John 5:11 "And this is the testimony: God has given us eternal life, and this life is in His Son."    

Monday, December 1, 2014

Giving Thanks


Thanksgiving took on a different feel this year.  We alternate Thanksgiving every year between my parents and Chad's parents.  This year was spent in Mississippi with my parents and my family.  The theme of the day just seemed to be being thankful that we were all together.  I know that sounds very simple and very obvious but really sometimes it's just that easy.  My aunt and my dad have been dealing with some health issues, my cousin and her family are usually out of state but they stayed home this year and then there is always our wild card, Sophie Kate.  Will she be well enough to travel?  Will everyone we are visiting be well?  There are lots of questions surrounding Sophie Kate's participation in things outside of our house during these months.  

There was a significance in us all being together on this day this year.  I think we could all feel it.  We got caught up on each others lives, we told stories, we reminisced, we prayed together, cried together and laughed our heads off together. I don't have pictures to share from our Thanksgiving, but it's all just as fresh in my mind as if I had a picture right in front of me.  We needed that time together, I needed that time with them.  I needed to put my hands on them and do a few days of life with them.  And of course we ate together, cause where 2 or 3 of us are gathered together, there will be casseroles and desserts.

My mom, my sister and I went shopping over the weekend as we usually do, but typically we are only gone for a couple of hours.  This time we went and had lunch together and didn't come back until dinner.  It was a fabulous afternoon of mom, daughter and sister time.  The men in our lives made all that happen.  The kids were dressed, fed and didn't appear to have any significant injuries when we returned so we weren't asking any questions.

My home is where my people are...and yes most of the time that is in Alabama, but can't my heart be in two places at once?  Because it seems that part of it is left in Mississippi as well.  I can't separate my self and my heart from these people any more than the crazy can be separated from Black Friday...it just can't be done.   It's getting more and more difficult for us to travel with this girl of ours but the distance and the difficulty getting there knows no bounds when it's time to go home.

Hope y'all had a great break with the ones you love.

Monday, November 24, 2014

Blessings

How do you explain "being blessed" or what it means to be "blessed by God" to a group of first graders?  My husband posed this question yesterday and it has turned out to be more difficult to answer than I would have originally thought.

Blessed is defined as being divinely or supremely favored, fortunate or having good fortune.  See, this is where the problem lies...we are taking our words and subsituting them for God's words.  I have a huge issue with the word "blessed" and how we throw it around these days.  I feel like our definition of blessed and God's definition of blessed could not be further apart.  We have taken our words, our desires and our perceptions and messed it all up...at least I have.  We deem ourselves or others as blessed if nothing bad happens to them.  Seriously, I really don't know how to put it much more simple than that.  I could go into detail or sugar coat it a bit, but I would just be dancing around that one statement.  You are seen as "blessed" in this world if you lead a happy, wealthy, healthy, good fortune kind of life.  The one thing that all of that stuff has in common is that it is all based on our circumstances.  

God never intends for us to determine our level of blessings by looking around at what everyone else has or to judge our blessings based on what we don't have.  His definition is different from ours.   When Christ delievered the Sermon on the Mount in the book of Matthew chapter 5, He spoke about being blessed when foks insult you and speak awful things about you and persecute you (that's in verse 11 and that is my pitiful attempt at paraphrasing it). That kind of being "blessed" does not line up with the world's definition of being "blessed" at all, does it?  Nor does verses 3-5, blessed are the poor in spirit, blessed are those who mourn and blessed are the meek...mourning, being meek or poor in spirit doesn't necessarily go with the American dream either, does it?

I certainly can't speak for God's definition of blessed because I am the first in line to mess things up and get it wrong. However, I do feel like it comes from within, from a relationship.  It is a happiness and and joy that is not based on circumstance.  We are all supremely favored by God. He desires a relationship with all of us.  He loves us so much that He laid down His life for us.  He took our sin upon Him.  He defeated death so that we may have life...We are Blessed!!

The blessings we typically speak of are temporary, the blessings God desires for each of us are eternal.  Let's seek the blessing of fulfillment and purpose in Christ.  Hope y'all have a wonderful God-centered Thanksgiving.   

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.