Monday, December 29, 2014

Christmas Day

It's a weird kind of transition to do Christmas with a teenager and an almost teenager.  Thank goodness it is a transition and doesn't happen overnight or all of a sudden, but instead it's a gradual change so that our mama hearts are able to take it.  In fact, I can't say that it was bad or sad, it was a very pleasant change to be able to sleep and do Christmas morning around 8:00 or 8:30 versus 6:00am...I rather enjoyed it, we like our sleep around here.
In fact in an effort to get Sophie Kate up and ready for all the Christmas morning activity, Chad and I were the first ones up.  Sophie Kate followed closely behind us and let me tell you by the look on her face she was not very happy about it.  Did I mention that we like our sleep around here? I think Grey was the only one who woke up on his own Christmas morning.  It was quite lovely though because we had time to get our coffee, get the sausage balls in the oven and turn on the Christmas music.  Now don't get the wrong impression, we are still that family and the wonderful chaos quickly ensued once we got our sleeping teenagers out of their beds.  

After the boys opened their gifts, it was Sophie Kate's turn...



These are priceless to me.  I love to see them interact with their sister.  They each have their own relationship and bond with her and you can see by the look on her face that she absolutely adores them.  

We battled sickness off and on the week of Christmas and I can't even believe I am saying that it didn't involve SK. Two of the boys have been sick and it has been nothing short of a miracle that we have been able to keep Sophie Kate from getting it.  Homebound school has been the best thing for her, she has been healthier this December than she was last December.  I don't know what January and February have in store for us, but November and December have been kind so far and for that we are thankful.

We are looking forward to healthy days in 2015.  We are looking forward to experiences both ordinary and extraordinary with our girl.  We know that hospital discharges and extubations are just as precious as our days spent at Disney.  We know that a healthy homebound school day is just as special as a camping trip.  We know that bright eyes and a big smile at home is just as sweet as seeing it while she is horseback riding.  It's the experiences, the moments, the tears, the love and the joys that contribute to who we are.  May Christ in us show through all our experiences in times of plenty and in times of difficulty as we face the New Year. 

Psalm 115:1, "Not to us, Lord, not to us but to Your name be the glory, because of Your love and faithfulness."

Monday, December 22, 2014

Merry Christmas

Christmas break is finally here and you all know we are enjoying unscripted, unscheduled days.  We are staying up late, sleeping in and staying in our pajamas for longer than we should.  We are spending time with family, friends and just each other and it's all good.  

We spent the weekend with Chad's family.  It's always an undertaking to bring 21 people together from 4 different states, but we did it and we did it well.  I don't think the dishwasher ever quit running, because when this group gets together, the food both quantity and quality is out of this world.  The kitchen at my in-laws house will be feeling the effects of this group for days to come I can assure you.  

I snapped these two pictures of my group with my phone...
 My goodness, these four, I can hardly stand it.
  Seriously, these two, I can't take it.

I love getting Christmas cards in the mail.  I love seeing how everyone has changed and grown over the year.  I love seeing pictures of friends and family that live far away now but still keep in touch.  The Christmas card seems to be a dying tradition but there are some things that I just can't let go of no matter how antiquainted they become...I'm stubborn like that.
This is our Christmas card this year...sigh, time please slow down.  Merry Christmas y'all, may the meaning of the manager permeate everything we do this day and all year long.

Luke 2:10-12, "And the Angel said unto them, Fear not for behold, I bring you good tidings of great joy, which shall be to all people.  For unto you is born this day in the city of David a Savior, which is Christ the Lord.  And this shall be a sign unto you, Ye shall find the babe wrapped in swaddling clothes, lying in a manger."

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.   
  

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.

Wednesday, September 17, 2014

Right Now

I find myself in a very familiar spot, sitting as close as I possibly can to my girl's hospital bed.  We have been inpatient at Children's Hospital since yesterday.  Sophie Kate is having her tonsils removed today.  We have been dealing with an acute situation of upper airway obstruction for about three days now.  Her doctors have determined that her tonsils, being as enlarged as they are need to come out.  She has slept for three nights sitting almost straight up, leaning only slightly forward over a pillow.  It's no way to live and breathe, but it seems to be the only way she is able to take a good deep breath.

No one here takes putting her to sleep lightly.  While I have every confidence that they know exactly what they are doing, they also have a good healthy fear of her.  It's a good combination, because they know what they are dealing with when doctors start talking surgery for this girl.  It's a struggle for her to keep herself oxygenated right now.  In fact, she isn't doing it by herself.  There are a lot of interventions going on here and folks have been in and out of our room all night trying to help her help herself.  "Let's just get her to surgery time," they say and my heart hurts a bit more as I consider what she is up against...the recovery, the pain and the not understanding.

It's not her hospital bed, it's not the hospital bed in her room at home where she and I are most comfortable.  It's a hospital bed we don't know, with other folks making decisions for her, many who are new to this world we live in with her.  They listen to me as I try  to catch them up on the six years of her life.  It's almost impossible, so I go really technical and really medical with them just to get through it.

Her eyes were so big and bright yesterday, more than one person commented on them and on that smile of hers.  I know that is fixing to go away from us for some time. Please pray for her surgery, it will be taking place mid morning.  Pray specifically for her recovery, both immediately after surgery and a week out.  While we know this surgery isn't the answer to all our questions, we pray it will be the answer to some of them.  Pray she will come off the breathing tube from surgery and be able to oxygenate herself easily and without obstruction.

We wait and we hope expectantly in the name of Jesus.  I will leave you for now with the words my friend texted me after I asked her for specific prayer for Sophie Kate..."It's done!"  I love that!! 

Tuesday, September 2, 2014

Right Here

I sometimes get caught up in what everyone is doing around me...their service projects, volunteer opportunities and mission trips.  I hear about a medical mission trip at church and being a nurse myself I think, "Yes, that's what I'm suppose to be doing."  I would so love to go on a medical mission trip one day, or at least I really think I would.  I may or I may not get the opportunity to do that one day.  God always reminds me as I am looking at the lives of others and thinking what a difference they are making in this world that I am right where I am supposed to be.  This space, with these people, in this community, in this city...this is my mission field.  He has absolutely equipped us for our journey and there is no way I can accomplish my purpose apart from Him.  However, I've not been called and I have not been equipped for someone else's journey and purpose.  

I know with certainty that my service through the direction and urging of God is to my family and the folks around me right now.  That may not always be the case, but God has shown me over and over again, because I'm real hard headed, that His plan for me at this time is here at home. That may sound like the easy way out to some, that I very lightly can say that I know this is where I am supposed to be and where I am supposed to concentrate my time, energy and effort so then I can say "No" to every thing else...that is not what I mean to say.  

I send the emails to folks wanting to volunteer...wanting to spend time at my children's school, wanting to help out at church and inevitably I end up having to send the email that says, "Sorry, but Sophie Kate is sick or she has a doctor's appointment and I am not going to be able to make it after all."  Yep, I'm that person and yet I keep trying.  It's a long and ongoing lesson I am learning.

I am sitting by her side again today.  I can read her feelings on her face.  Her eyes are not as bright as they usually are, she doesn't feel like smiling today, she's not feeling well. She's struggling keeping her O2 levels up due to her increased secretions.  I am doing all I can to keep her comfortable and to keep her levels up.  This is where I am supposed to be...I feel it, I know it.

Monday, August 18, 2014

Beauty in Difficulty

The most difficult and the most beautiful things have come out of these 6+ years with our girl.  The difficult things are never forgotten but its the beautiful that I want to remember.  It's the lovely that I want to treasure.  That's not to say that the beautiful cannot go along side the difficult because it certainly can, I have seen it firsthand.  I have a picture on my phone of Sophie Kate when she was so sick, in the PICU and on a ventilator with a smile on her face.  I sent it to Chad and he and I are the only ones to have ever seen it and I said, "Who smiles like that with a breathing tube down their throat? Who does that but this girl of ours?"  It was an extremely difficult time but a beautiful expression of her sweet spirit.

This Sunday I had the most lovely conversation with a lady who parked next to us in the handicap spot.  She had seen us around church and wanted to say "Hello."  She too had a special needs son who lived for 36 years.  We talked about our babies and I introduced her to mine and we connected in an instant.  It didn't matter our different ages or stages of life we were both mamas to these kids and we talked about the tough times and the lovely times...most definitely a divine appointment.

Different folks brought us dinner over the summer,  that in and of itself is lovely to me, but in one of the boxes we found this...
It is a note to Sophie Kate from one of her friends, complete with a picture of them in matching pink tutus...too sweet.  Sophie Kate also received her second invitation to a friend's birthday party last week.  The first one came years ago when she was in 3K.  How sweet of these girls to befriend SK in such a way...at their ages it speaks volumes of their character and their heart to look past the wheelchair, to look past the oxygen and know that Sophie Kate is someone worth getting to know.  I am privileged to watch these beautiful relationships begin to grow.

Romans 12:10, "Be devoted to one another in love.  Honor one another above yourselves."

Monday, August 11, 2014

What I want my boys to know concerning their sister

There are so many times that our life revolves around this girl of ours.  It may be a hospital stay or a sickness that keeps one of us home with her.  We can't just walk out the door and go somewhere at a moments notice and we never travel lightly.  Right or wrong, we will run ourselves ragged to keep things as normal as possible for these boys...to take them places and make sure they are still able to do things with their friends.  Things get really serious around here at times and hospitalizations occur and things get turned upside down and schedules get tossed out the window and then things settle down again and we get back to a "normal" of sorts and we are able to settle into a routine again. 

Whether it's crazy or calm around here I want you boys to always remember...

1. You matter.  The first thing that pops into my mind when I find out your sister is being admitted to the hospital is y'all.  It may be nothing more than pure survival but it is all for y'all....who will you stay with, what poor soul will have to feed all of y'all (ha ha), how will you get to school, practice, etc, when will one of us be able to get home to see y'all and tell you what is going on.  Even if both of us are needed at the hospital we can't stop thinking about where you are, what you are doing and how and when we are going to be able to get to you.  You matter big time.

2. You are prayed for as much as she is.  When your sister is sick and/or in the hospital I know you must think all we care about is that she gets better and that has to be our only prayer.  It isn't.  We pray that we will be able to help y'all have an understanding that is appropriate to your years. We pray that as you see us care for your sister you will understand what it means and what it looks like to put your own needs aside for someone else.  We pray that what satan has intended to tear us apart would instead bind us together in Christ and in love stronger than we were the day before.  We pray for you.

3.  You guys are always on my mind.  With every medicine I give, every feeding I administer, every diaper I change, your day and your schedule is on my mind.  I know you probably think that it's the other way around, that it is her schedule that runs our life, but I know different.  Yes, I have to do things for her out in public.  I have to feed her at football games or give her water and meds at a get together with friends or even change her diaper in some of the most remote areas of Disney World, but I do them so that we can be where we need to be for y'all.  I do that so I don't have to miss a game or so that you don't have to have time with friends cut short or so that we don't have stay home when we could be at Disney World.  Your schedule is why I do what I do.

4.  I would do the same thing I do for her for each one of you if you needed me to...please know that.  She is not more important than you or more loved than you.  It may appear to you that I do more for her than I do for y'all because she needs me in a different way than y'all do. There are basic human needs that I have to do for her that y'all are now able to do for yourselves, but you need to know that if the situation were reversed I would do the same thing for any one of you.

Always know there will never be a shortage of Jesus or love or conversation or laughs or hugs or back scratches here.

Monday, August 4, 2014

Back to School

Sophie Kate will go back to school on Wednesday.  For now, those in her life making decisions for her want to her to go to school.  Her parents, her doctors and her teachers want this for her because she enjoys it so much.  I know the day is coming when school won't be an option for her, I can feel it...but it's not this year.  

I am finding the thought of it difficult.  When school can adversely affect the health of your child you find it very hard to let go of her hand and walk out of that classroom without her.  I'm not buying crayons and scissors and school glue for my first grader.  I am scheduling the delivery of her oxygen concentrator so it will be waiting for us on the first day of school.  I am packing her AFOs so that she can use them during therapy.  Usually I get to at least do one "normal" thing and buy our girl a new backpack, but seeing as how she only attended school for three months last year her old backpack is still in really good shape...as are her clothes and her shoes...no scuff marks and no worn out places.  

After so much time together, I find it difficult to turn her over to someone else.  She will have a new nurse this school year.  On the first day of school I will be introducing a complete stranger to my daughter and am expected at some point to leave her with them.  I haven't done that in a very, very long time.  There is not enough time in the day to tell someone everything there is to know about this sweet girl.  There are so many things that are just automatic to me, I don't even think about them...I know I am going to leave something out. 

There won't be a bus pulling away with her waving bye to me in the window.  She won't be hopping out of my car in carline walking in with a backpack that is bigger than she is.  I will take her to school myself after all the other children have been dropped off.  I will do it though because I fear there will be a day when she can't go.  I fear there will be a day when the risk far out weighs the benefit.  It's not this day though so we will wake up ridiculously early and I will pack up all of her supplies because she enjoys school.  I can't keep her to myself, kids need to see her at school, they need to get to know her and spend time around her. She has purpose and worth and a smile that is so contagious.  God has a plan for her life and without a word ever spoken the two of them will change hearts and minds. She's the teacher and we are the students. 

Monday, July 28, 2014

A Different Kind of Summer

We are doing our best to soak up every last drop of our summer.  It has looked different for us this year than it has in past years. Last summer Sophie Kate was oxygen independent and this summer she is oxygen dependent.  It has changed the way we do everything.  It has changed the way she sleeps, it has changed the ease with which we get out and do things and it has changed the way we vacation.  

I have joked before that our girl does not travel lightly. Well, we have taken that to whole new level.  It doesn't matter where we are or what we are doing, there are still meds to give, breathing treatments to administer, feedings to give and frequent suctioning to do to keep her airway clear.  Her oxygen and suction machine have become our constant companions, they go wherever she goes.

Our days with this girl are measured in moments and experiences that look drastically different from what I had imagined over 6 years ago.  Last week we hung our legs over the side of a boat dock and let our feet dangle in the cool lake water, while being splashed by brothers and cousins as they jumped in around us.  It wasn't easy getting her out there but it was worth it.

Sophie Kate went to her first wedding this summer.  Macie has been in our life since Sophie Kate was born.  Just seven months ago she sat with me at Sophie Kate's bedside on the second worst day of our lives until my husband could get to the hospital.  As I sat next to Chad and Sophie Kate at her wedding just over a week ago I could not help but be overcome with gratitude. I am so happy that our girl could be there smiling and feeling good on that day.  Macie's mother said to us, "Thank you for coming.  I know it was not easy for y'all."  No, it wasn't easy and I appreciated those words...but it was so worth it.  Sophie Kate was having such a good day and she was all smiles...it was worth it.  She doesn't get many invitations and I knew that even though all of our names were on the invitation that invite was her's and her's alone.  It was worth it to get her there.

What do we do when our will does not line up with God's will for our lives?  That question was brought up recently, it's a really good question.  I am still figuring that one out. Are we going to let bitterness, anger, sadness and longing for something else consume us or are we going to choose love and joy and a heart of thankfulness?  It's a different kind of life we live with this girl of ours.  Hurt and happy coexist here, but so does deep rich relationship and conversation and understanding and acceptance and love. There is hope and healing in the name of Jesus.

Monday, July 14, 2014

Our Magic Moment

Our family got quite the surprise last month.  Magic Moments has gifted our family with a trip to the happiest place on earth.  


Sophie Kate's surprise was complete with little girls dressed in their princess costumes, balloons, a scrapbook to put all her Disney memories in and a letter straight from The Mouse himself inviting our princess to Disney World.

Magic Moments is an non-profit organization that "fulfills the non-medical wishes of chronically ill Alabama children."  They know they cannot grant the wish at the top of all their families lists which is healing for their loved one, but they can do smiles in a big way.  And y'all know that when our girl smiles it touches everyone around her...
Our surprise was made even sweeter with our family and friends in attendance.
These folks, among many others, have been with us since that Saturday on the 3rd of November 2007 when our baby girl was born.  We were thrilled for them to share in this day with us.
A huge thanks to the Magic Moments team, they were so kind to our girl and our family.
I love that this organization is local and I love that their focus is on the whole family.  The 6 of us have been through the hurt and the happy together.  We are looking forward to lots of happy in the near future.

Wednesday, June 25, 2014

Our Weekend

My husband and I spent 48 hours away from everything this weekend...away from our house, our jobs, our responsibilities and our children.  It was the first time we have spent that much time apart from Sophie Kate in her entire life.  Our church, as well as our friends and family showed us this weekend what "it takes a village" really means.

We slept late, we ate some good food and pretty much did whatever we wanted whenever we wanted.  We didn't even have to leave our spots poolside for lunch, they took our orders and brought our food out to us.  Seriously, the only thing I managed to accomplish on Saturday was to flip half heartedly through a Southern Living magazine.  Oh and I did manage to get myself to the spa for some indulging spa treatments.  We were totally spoiled.  

At one point over the weekend Chad asked me if I missed the kids.  My answer to that was that we have spent time away from the boys before, it isn't unheard of for them to go spend a week at my parents house during the summer, but we have never been away from Sophie Kate for that long together before.  Her and I are together so much, she requires so much of my time.  Tears filled my eyes and spilled over onto my cheeks just at the thought of her. There were so many feelings being apart from her...yes I missed her, yes I wanted things to go well with her while we were away and yes it just felt very weird for her not to be with me.  It's always her and I together, so this weekend was very much needed for Chad and I for so many reasons. 

It's still hard to believe that the weekend even took place, but it did and all the details fell into place and it all went so well.  So many people were involved not only to make this weekend take place but to make it the success it was, we are so grateful to all of you for placing such value on our marriage.  We are humbled again at the outpouring of love for our family.  

Friday, June 13, 2014

For Him

Earlier this week my guy went out of town.  Now Chad hardly ever goes out of town for work which is a good thing given how much he is needed at home.  He was gone from us for two whole days.  I get it that it doesn't sound like much especially when I see it in print but it was "much" I promise you.

The morning he left could have been any other morning, but it wasn't.  The morning he left he could have very well been leaving for work, but he wasn't and I knew that.  It should have been just like any other day...me here with the kids...but it wasn't.  On a regular day he works almost an hour away from us so it's not like he gets to drop by and join us for lunch or anything, but it was still different.  

And yes, of course I missed his help in the evening with all these kids but I can take care of all of them by myself I do it every day.  It was that he wasn't just working an hour away, he was a plane ride away and we all knew that and it felt different and weird to all of us and I'm glad it did.  

He wasn't home for dinner and he is always home for dinner and we missed that and I'm glad we missed it.  The boys didn't spend as much time downstairs because He wasn't there with them.  He wasn't standing across the hospital bed from me as we put our little girl to bed that night.  I did it by myself and while I am completely capable of doing that I didn't like doing it without him.

Things just felt different and they should because when he's home everything is better, everything is going to be OK.  He made everything OK when we moved here not even two years into our marriage and I knew no one and had no family here.  It was truly the period of time where he became my family.  Just him, just being there, just coming home to to us every single night...day after day, week after week, year after year...that is what a real man does.  As the head of our family he stood when I couldn't in a small room in the NICU when our world collapsed and so did I...he stood, by the power and strength of God he stood for me, for our girl and for our family.   No one can fill his role but him...just ask her...

"Happy Father's Day" isn't even close to enough for him.

Wednesday, June 11, 2014

What I'm seeing

The most beautiful things come out of this life with our girl...moments made sweeter I think because of the hurt and because of the difficulty.  I see compassion growing in these boys.  I see a tender touch or a conversation with her when they don't think anyone is watching.  I see them run through our family room heading outside and they stop and reach out to her and talk to her just long enough to see that smile.

At church, I see 13 year olds working with our special needs class and they're not just present...they are engaged and hands on.  I see a senior adult class getting to know a little girl in a wheelchair and finding out how they can help her and her family.  I see a group of men who work just as hard being retired as they did when they were employed doing what they do best.

I see new friends for Sophie Kate who want to get to know her and spend time with her.  Yes, friends her age...sweet girls with kind hearts.  I see friends, family, church folks and a community who never tire of being there for us.  I am so grateful for the folks God has surrounded us with.  He knows our needs before we do.  He goes before us.  He is making a way.

Monday, June 2, 2014

Vertical

I am having trouble putting words to my feelings lately. Things just feel different again.  I sat in church yesterday unable to sing a single word.  Instead I felt wave after wave of emotion and tears come over me.  I continuously had to tell myself "blink it back," "choke it down" and "swallow that huge lump of sadness that's stuck in your throat."  

We are at the beginning of summer, the most wonderful time of the year and I so want to feel every bit of the smile I am forcing across my face.  Last weekend, Memorial Day weekend, held with it all the possibilities and fun times that come with summer and I so wanted to feel it...to feel it without reservation, to feel it without concern.

How do I do this summer with these boys and this girl? How do I do summer, every day of summer with all of us all together?  This oxygen thing is trying to separate her from us.  All of her equipment is trying to do that to us, it's taking our place beside her.  It's pushing us further away from her, it's making it hard to get out with her, it's making it hard to travel and hard to vacation with her.  

She wasn't on oxygen last summer.  She no doubt should have been we just didn't know, but nevertheless she wasn't.  I didn't appreciate those years we were oxygen free enough.  She wasn't on cpap last summer either.  When we left the house we didn't have to travel with those things then.  

Our girl loves the water.  How do we go swimming with her this year?  We don't have a pool, but if we get an opportunity to swim sometime this year, how do we do it? I guess she gets to be in the water for a bit and then she has to get out for a bit and get on her oxygen.  That sucks.

When will we ever get back to the beach?  We haven't been since Sophie Kate was 10 months old.  Sand is not wheelchair friendly at all.  I miss it.  

I try to plan the days that we are going to get out and do things on the day Sophie Kate is with her nurse, but in doing so that means we have to leave her behind and that is incredibly difficult. When you see me out with my boys you have to know that as wonderful as it is to spend time with them and as needed as that time is, my heart hurts because she is not with us.  

I know part of my problem is that I am focusing too much on the horizontal and not enough on the vertical.  I am spending too much time watching and longing to do what everyone else is doing and not enough time in the Word and in relationship with my God.  I feel the discontent and jealousy creeping in.  I know full well that satan would love nothing better than for me to spend this gift of summer longing, wishing, worrying and fretting about what we can't do.  He would love for me to spend the next two months unhappy, discontent and in an all around bad mood.  He would really love it if he could get me to show my kids that you can't be happy unless you live as the world tells you to live.  

I know I am in a fight right now, a battle.  I feel it pressing in on all sides.  Outside influences and thoughts that are not of God are taking up too much space in my world.  My girl doesn't know of a world without joy and smiles.  I have never seen someone more content in their circumstances than her.  She finds joy in the most simplest of days.  She doesn't deserve anything less than 100% of me.  These boys don't deserve anything less either and neither does their daddy.  God has appointed me for this task, for these days with these kids...for this summer.  I don't want anything to steal my joy in these moments with them.

2 Corinthians 10:4-5,  "The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.  We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ."

Trying to keep my perspective vertical people.