Monday, April 4, 2016

A Huge Burden

I saw it there on the page in black and white for the first time in her over eight years, "Sophie is a huge burden to her parents."  I know it must not be the first time anyone has thought it, but I have never heard it said to me or seen it written down with my own eyes...until that day.  I know the context in which it was written, I know and love the person who wrote it and I know they love our precious girl.  I know that it was written in order to help us in the fight we are in right now for services for our girl.  I know all that and I am not mad at any body...but those words!!! Those words are a dagger, no a bullet, no a there really are not words for those words and the damage they can do to the mind and soul.

Satan intended those words for me on that day...and they dug deep into my being.  I felt like dropping to my knees at that very moment, hanging my head down and pouring out every tear inside of me down my face and into my hands.  I looked up from those words searching my surroundings for something, anything to distract me long enough to swallow all this mess down.  I longed for even the smallest thing to grab my attention and my focus away from the these words turning over and over in my head. They were being branded into my mind.  These words were intended for me.  The enemy intended for me to read these words on this day.  

Right there on aisle 8 in between the paper towels and the paper plates, I read the email that held these words..."Sophie is a huge burden to her parents."  Sophie is a lot of things to her parents but never ever a huge burden.  These words hurt me deeply. But I wondered...does someone need to hear these words or read these words in order to approve help for us in taking care of our daughter in our home?  That is so sad to me.  I have seen, heard and read some incredibly difficult things about my daughter in these 8 years.  I have read things like hypoxic ischemic encephalopathy, gastrostomy tube and seizure disorder.  I have heard things like, "she will never walk or talk" and "she will never know who you are," by the way they were wrong about that second one big time, but today these are right up there with the worst of them.

I know the reason these words hit me so hard is because she's mine.  I feel like the world would agree with these words though.  I feel like from the outside looking in most people would not even take pause at these words, even more, many would agree with them.  She has to be a burden, doesn't she?  How could she be anything but a burden to those around her?  And I think that's why this digs so's the lack of understanding, it's having to attach the only words we know to situations and circumstances of which we know nothing.  Folks look at her and they are scared to death, in their minds she is only associated with bad, tragedy and all the other negative words they can think why not burden.

Everything in me wants to come at those words with everything I have.  My response though is pretty simple get to know her, get to know someone like her.  Her worth is not found in diagnoses, her abilities are not bound to her wheelchair, her identity is not tied to labels.  Quite the opposite, her Creator speaks very clearly to who she is in the book of John. 
"As he went along, he saw a man blind from birth.  His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind? 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him'" (John 9:1-3).
And again in the book of Corinthians...
"But He [the Lord] said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.'  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.  That is why for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong" (2 Corinthians 12:9-10).
Instead of turning those words over and over in the dialogue of my mind, I will listen to the voice of Truth.  We are all broken and sinful people who have been chosen by a holy, righteous God.  She is not a burden, she is chosen.  My beautiful girl you are chosen.

Saturday, March 19, 2016


Spring signifies more to our family than just warmer tempertatures and blooming flowers.  After months inside the house with our girl in an effort to keep her well, we emerge and carefully re-enter our little corner of the world that we left so many months ago.  Seriously, if you see me out at all in March beware because I will most certainly talk your ear off on just about any subject.

Sophie Kate went back to school last Monday and by Friday her week had completely exhausted her.  It was wonderful to hear of the smiles and the good days she had. She works hard and plays hard at school and I am grateful that she was able to return this year.  In past years once we take her out for the winter months she doesn't end up returning to school the rest of the year. This year, though, with her small class size we decided to give it a try.  Every day that we are able to get her there, because believe me that is no small feat, feels like a small victory...that at 8 years old she is even still physically able to go to school is a gift.  Y'all really,  her doctors have been saying for years, "There will come a day when Sophie Kate is not able to go school and we're getting close to that day, but we're just not there yet."  So you can see how every day that she is able to go is a privilege.  And I try to look at it that way, when we are moving the mountains it takes to get her there by 8:15.

Spring also brings a break in sports, we'll kinda sorta. Y'all know that football never ends so there's that and if you know Chad and I at all then you know that we are sooo fine with that.  So when I say we have a break from sports I really mean that we are not doing any sports on the weekends, because Saturdays in the Spring belong to our girl and her horse.  We are back at Special Equestrians with Sophie Kate for her fourth year there.  It takes us longer to get there and back than it does for her entire lesson but those moments on her horse are indescribable. I would have never dreamed so many years ago that I would ever have seen her on a horse.  
 Spring 2015

Spring 2016

She's doing well, she's getting back to normal activities, she's back to doing some of the things she loves.  There continue to be hard days, but with that we have days like these too.  Our God is providing and preparing a way in the hurt and in the happy.    

Wednesday, January 13, 2016


It has been quite some time since I have come here to share my thoughts and feelings.  Sophie Kate has been doing well since her hospitalization in early November. She has been sick one other time since then and only by a miracle did we avoid another hospital admission.  I find that I am able to put up a pretty good front when she is in the hospital.  I am definitely in full nurse mode.  It is only once we come home or have the threat of returning back to the hospital that I allow myself to completely fall apart.  

Thanksgiving, Christmas and New Years were so special this year with friends and family.  We traveled some, which is proving to be harder and harder with each trip we make with our girl, but so worth it once we get where we are going and get to spend time with those we love.  I want this girl and these boys to have these experiences as much as we possibly can.  It is quite the task for Chad and I but somehow, I'm not really sure how, we get it done.  We opened presents, we ate lots of good food and we spent some good quality time on our pjs.  Most simply, I valued our time at home with these five that have my heart.

I get real introspective, even more than I normally am, after spending days in the hospital with Sophie Kate.  I know that these days when all six of us are together for extended periods of time are going to become fewer and fewer especially with one who will be driving later on this year.  I value the time I get to spend with Cooper driving him back and forth from practice and other activities...well, actually it's him driving me back and forth.  Nevertheless, I love the conversation I get to have with him one on one in those moments.  We talk and we laugh and I love every second of it whether it is a trip across town to a game or if it is only the 10 minute drive home from practice. 

Being in the hospital with Sophie Kate, definitely refocuses me and reminds me to be grateful for the days I get to spend at home with her.  I try to keep all that in perspective when the days run long and consecutively inside the four walls of our house.  I try to keep my thoughts positive and to have a grateful heart that I am able to care for her at home instead of in the hospital.  I am not even close to always successful in that endeavor. 

I heard something last week that I have been turning over and over in my mind...and it is about waiting.  I know that sounds so boring and so not fun, but just waiting.  Waiting on the blessing...not wishing/wanting/longing for or even worse demanding (God help us) something now that if we were to wait for God's timing would be a blessing in our future.  Right now is a "no" or it's a "wait," which is so so hard in the instant gratification world we live in.  And then in the waiting, in the meantime, can we/can I be grateful, can I find joy?  This is tough stuff and when I try to tackle this myself I am overwhelmed, because I can't do this I don't even want to do this.  But God...this is the game changer, I can't do this but God can.  It's too much for me, I am not capable but God can take the hopeless and give hope.  He can handle the hurt and provide healing.  He can change our heart if we are willing and we can feel His joy again.  

The days can feel so dark to me, God is my light.  Psalm 18:28, "You, Lord, keep my lamp burning; my God turns my darkness into light."

Friday, November 13, 2015

Her Birthday

I have kind of been avoiding this blog during the time surrounding Sophie Kate's birthday.  I refused to be sucked into another downward spiral of how difficult this time of year is for me.  Really and truly it wasn't even that I was making a conscious decision to avoid this space it's just that it hasn't even been on my mind.  Sophie Kate has been healthy for some time and we had a small, just the 6 of us family party planned for her on November 7th.  Y'all know how much she loves animals, so her daddy had arranged for an animal encounter for her at our local zoo. It was going to be cake, no ice cream...just some of the things Sophie Kate loves.  

Instead, her party had to be cancelled and I found myself standing over her hospital bed on her birthday (November 3rd)...and it wasn't her hospital bed that is in her room at home, it was the real life kind that is located on the 7th floor Special Care Unit of Children's Hospital.  Sophie Kate was admitted to Children's on November 2nd with aspiration pneumonia. We spent 6 days there including the day she turned 8 years old.

The irony was not lost on me that 8 years ago I stood over her hospital bed which then was an incubator in the NICU. However, we are not the same people we were 8 years ago, her and I.  And even though we found ourselves in very similar circumstances, we know that our situations do not dictate our joy and our hope in the name of Jesus.  I will not lie and say that day was all sunshine and rainbows because it wasn't...she was sick and we had an uphill climb ahead of us, but it's not a mountain that we are unfamiliar with.  This is familiar terrain for us, we have traveled these roads before and as much as I hate that this is our world, we know it and we know how to go about getting on with it.

The beauty of that day was that we were surrounded by so many who were there that same day 8 years ago when we were broken and in need of being pieced back together by our Creator and Healer.  The One who knows our inmost parts knew that we would need these people every single day of this journey and 8 years later they are still here...those things were not lost on me.

We are home now and at the beginning of the "sick season."  This too is a familiar place...being home with her. We feel safe and protected here.  It's a necessary part of our life to be here for these months with her.  We are literally nursing her back to will take time.

We are seeing glimpses off and on of our smiling, bright eyed girl.  We are ready for her to be fully back to us but for now we will keep sitting by her, caring for her, talking to her and praying over her.  Her biggest smile since she has been sick came when she was discharged from the hospital and we were on our way home...
Happy Birthday Beautiful, every one with you is a gift.

James 1:17 "Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows."

Tuesday, November 3, 2015

Happy Birthday SK

Eight years ago I stood at your bedside and today I stand there still...waiting on that smile that rights my world. 
Happy Birthday to my precious girl!

Sunday, September 20, 2015

His Perfect Will

I know y'all may be tired of me recounting my small group hour at church and subsequently just write about what other people say, but it's good stuff and maybe I just need to hear it again and maybe I just might need to read it again one day as well.  I have to preface this week's topic of "When bad things happen to good people" though by saying that it is my least favorite topic and usually when I know about this topic ahead of time I skip class...yep that's the real truth of it.  But this week I forgot that we were covering my least favorite topic ever so there I sat.

But God is not in the business of wasting time in dealing with us.  Our hurts, our difficulties and our pain is not in vain.  God uses every last bit of happiness and hurt that we experience to bring us and those around us into a closer/deeper relationship with Him.  He brings good out of tough situations...Glory to His Name!

God created a perfect world.  He did not create a world with sin in it, that was our doing.  Our bad decisions, our poor choices brought sin into the world not a holy, righteous God.  He cannot be something He is not and He is not sin.  He is perfect.  Therefore, He cannot bring anything but a perfect plan to our difficult circumstances. When we see nothing but darkness He is the light.  In our imperfection, He still has a perfect plan.  Sometimes the things that come our way in life are a result of our bad decisions and our poor choices and sometimes those things happen as a result of the sinful/fallen world we live in, nevertheless, God still has a perfect plan.  He is not pleased with our poor choices and He desires for us to make wise, God-honoring decisions but He does not abandon us in our difficulty.

We attach our human words and our human emotions to God, because we don't know of any other way to describe Him or feel about Him, but our words fail miserably in comparison to His majesty.  Our emotions no matter how strongly we feel them fall so very short in comparison to the all encompassing love of our Savior.  He cannot be anything other than who He is...and He is holy and righteous.  His will is perfect, even though I am not.  

1 Corinthians 2:9, "What no eye has seen, what no ear has heard, and what no human mind has conceived-the things God has prepared for those who love Him-these are the things God has revealed to us by His Spirit."

Sunday, August 30, 2015

Obligation vs. Opportunity

Today in our small groups at church we talked about obligations.  How do we define an obligation? What are our obligations? How do we feel about our obligations and what keeps us from fulfilling all of our obligations?  Yes, there was lots of talk about obligations and as a whole we all agreed that the word "obligation" has a negative connotation.  It's something we have to do or we feel like we have to do whether we like it or not.  Of course we had some fun with it and laughed a good bit at the things the guy groups and the girl groups came up with, but in the end it came down to our attitude and the way in which we choose to view things.  

When we only give God bits and pieces of our life and still try and cling to/control the other areas then those things begin to weigh us down.  Those things start to feel like tasks or jobs or...wait for it...obligations.  However, when we give it all to God...our family, our work, our finances, our extracurricular activities, etc then we can begin to see our obligations differently.

I have a real life example, I am living it actually.  Now please don't hear what I'm not saying, I don't live it perfectly.  I am no more here to judge you than I want to be judged myself.  I wake up every morning to a day that can be viewed as an obligation or as an opportunity just like you do.

Eight almost nine years ago when our little girl was born the world told us it was a tragedy and that taking care of her would be a burden to our family.  We had a choice then just as we do now, are we going to walk through this thing with God or without God.  Everything you go about doing throughout your day we have to do for Sophie Kate. We have to care for her in every way you can think of and in lots of ways you can't.  Yes, there have been many many days that I approached her and all the things I had to do for her as an obligation.  However, over the years God has been more patient with me than I deserve and He has shown me through her sweet spirit that she is not a burden as the father of lies would have me believe.

She gives me far more than I could ever give or do for her. She gives me the opportunity to be a better person by loving her.  She gives me the opportunity to be selfless by putting someone else's needs above my own.  When I look at her and love her as God looks at her and loves her, not that I can be equal with God or do exactly as God does but I can follow the example Christ has set, then she is not a burden or an obligation.  In fact, it becomes my pleasure and my privilege to care for her.  It is in these moments when my obligations, my gifts, and all the demands of life are given over to God that I can see the things that really matter and it isn't the things we are bombarded with every day.  It is in these moments that God reveals His priorities and contrary to what I may think or want it has nothing to do with outward appearances or what my house looks like or what kind of car I drive.

I can see what I once viewed as my obligations as opportunities when I see them as God sees them. 

Philippians 4:8 "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things."