God with Us

This Christmas has a different feel to it...different bad, different good I'm not sure...just different.  I think it's pretty normal to take some inventory and realign priorities when someone close to you passes away.  In addition, I have also met another family that is really struggling this Christmas season with real life stuff that's real hard.  I have made statements like, "There is no end to the suffering here on earth."  I know it's a strong statement.  I don't feel like pretty-ing up my words right now. I am struggling with buying Christmas presents for folks who don't need anything and I am struggling with those same folks buying presents for me.  I know y'all are all jealous that you can't spend Christmas with me this year, aren't you?  No seriously, I don't say anything like that out loud because we're not supposed to, right?  So I don't, but I am struggling with it just the same.

At the core of it all...it's love...only love.  All of our Creator's love sent to us in the form of His Son.  A baby born to die because of unfathomable love for us...all of us.  I want my children to know true happiness and joy not just the kind of happiness we get from opening presents, that is so temporary so fleeting.  God, let them know true joy and happiness in their Savior...that is eternal.  Let us be particularly aware of what a gift these moments are with the people we love...let that love be so real and so genuine to everyone we come in contact with.  At the end of it all what we remember is how people made us feel...I rememeber my friend...

Praying for peace and contentment in our Christmas, for cherished time with friends and family and at the center of it all...love.  "And they will call Him Immanuel (which means 'God with us')" Matthew 1:23.  God with us and God in us will be the light in a world filled with darkness...it's only love and it's only Him.

And yes my children are getting presents this year so no one panic...I said I felt that way I didn't say I actually followed through with it.

Merry Christmas y'all.

On losing and gaining and continuing on...

As I sat on the bed with my youngest son one night, a ritual I cherish every night before he goes to sleep, he said her name, "Mrs. Theresa," the name of one of my dearest friends who was called home to be with our Lord almost two weeks ago.  As soon as he said her name, meaning to have said another friend's name, he had an apologetic look on his face and diverted his eyes from mine.  "I'm sorry," he said.  No child, don't be sorry, don't ever be sorry, please say her name to me.  She has been a huge part of your life since day 1...literally, she was there in the moments just before and just after you were born.  Don't ever be sorry, how could you not continue to say her name, it has been a part of your everyday conversation in some shape or form all of your 10+ years.  I know his "I'm sorry" was an attempt to avoid seeing his mama cry.  It touches deep places in a son's heart when they see their mama cry and they would do just about anything to stop that pain.  

Please never stop saying her name.  By saying her name your not reminding me of her passing, her physical absence in my life is felt and remembered with every second that ticks by.  There is not one task, not one errand, not one minute that passes by that her and her family are not on my mind, on my heart or in my prayer.  From the most simple to the most serious, we shared it all between us.  Who will I talk about our favorite show "Survivor" with?  Who will I share all my epic parenting fails with?  Who will I call when I am irritated with my husband (that's just a "for instance" Chad, that probably never happened, insert winking emoij here)?  Who will come over and have lunch with me when Sophie Kate and I are homebound?  Who will I go eat at food trucks with?  Who will I go to football games with?  Who will I play games with?  Who will I call when Sophie Kate is admitted to the hospital again?  Who will I call when...

Thankfully it is not possible to sum up 17 years of friendship, it will never be summed up it will only be remembered and cherished and relived over and over in my heart and my mind.  Doing life with my dear friend Theresa and her family and all our friends is a privilege and will continue to be a treasure to me.  There is no summing up or wrapping up of a lifetime there is only continuing on.  Life has a way of continuing on...how dare the sun have the audacity of shining on a day such as this but it does and it's a beautiful picture and a visual reminder to us of the light of God in our darkness.  When the satan wants us to dwell on our loss or on the finality of death, we know with certainty that it is a lie...it is not our truth.  We grieve for our earthly loss but we grieve with hope.  Our friend is with our Savior and Lord, she is healed and is with her Creator, her body no longer suffers from the cancer that she and her family have lived with for the past 6 years.  We cry our tears because we will miss her so so deeply, but we have hope.

As followers of Christ, as people who have chosen to accept Jesus Christ as our Lord and Savior, we know that we will see our friend again one day in Heaven.  Our suffering for Christ is never in vain and our Lord will use every tear, every day of suffering to bring about good for the Kingdom of God.  What satan has intended for harm, what satan has intended to cause despair, what satan has intended to destroy families, what satan has intended to cause people to turn from God will instead turn people to Him.  Theresa's life and legacy will point people to God. Her influence and her example to each and every one of us will have an influence for the Kingdom of God.  He is the author and perfecter of her faith and she is seeing that revealed to her in heaven.  Praise be to God!

I want to leave you with something I wrote just days after her passing when I was asked to give one word I would use to describe my friend...as you will see there is not just one word...

Teaching...Theresa never stopped teaching and I don’t just mean her class I mean all of us.  She never stopped teaching.  Whether it was in her 1^st grade Sunday school class or in her Bible Study or in a backyard Bible club or on mission trip or even there from her home and more specifically her bedroom when her time got small, she taught us.  Less than 6 months ago she was in Greenville, South Carolina teaching 2 and 3 times a day for several days in a row because of her love for Christ and for the children she and her family have been serving there for 6 years.  Even as little as around 6 weeks ago she was at church teaching those precious 1^st graders in that room that has been her's for so long.  There are not many of us here that have not been personally affected by her faithful teaching of our 1^st graders.  As one of our friends said, ”She thought she was just teaching children, but she taught all of us.”

She was real and it was that realness about her that bonded us so tightly as friends.  There was never a time you didn’t know how Theresa felt about something.  There may have been people in your life that you couldn’t get a good read on but Theresa was not one of those people.  She was for her family and friends, she was for fun and games and good food and good times, she was for playing tennis and for going camping, she was up for an adventure just about any time, she was for catching up on her favorite TV shows and for staying caught up with friends, she was for laughing until our sides hurt, she was for listening and sharing and crying with us and for us when things got hard.  She was for sharing parenting successes and fails in such a clever and funny way.  She was for people.  She was for Jesus.

She loves.  Scott, Benjamin and Emily never have to wonder how their wife and mother felt about them.  What a wonderful gift to her family and friends it is that we know exactly how she felt about us.  She expressed it both in her words and through her actions.  Equally comforting is that she knew how deeply she was loved as well.  Through conversations, text messages, meals, and running errands…through all the going and doing, laughing and crying…through the big gatherings and celebrations and in the still quiet moments…we knew and she knew…Scott, Benjamin, Emily, and Mr. White knew…there was always love.

She would be so uncomfortable with all this attention, but it is her legacy, it is real, it is sure, it is strong and it is all for His glory.

My dear friend, we will see each other again one day in heaven, until that time I will smile and laugh sometimes through tears in my eyes upon every moment we shared and it will be my honor and privilege to continue to love on, share with and do for your family. 

Nine Years

Nine years ago today you came into the world silent and still. Without a word you have changed our lives, we are grateful to God to share these days with you.

Happy Birthday Beautiful.

When God seems silent

There has been a long silence on the blog over the past months.  I want to fill y'all in on what has been going on...there has been so much.  I will start from where I left off back in April.  We have been battling Medicaid since the beginning of this year to get our private duty nursing hours reinstated (Medicaid denied them back in February).  We have appealed their decision through every avenue we have available to us within their system. The most recent appeal has been through what Medicaid calls a "fair hearing."  We are currently awaiting the judge's decision.  I want to give a helpful and honest opinion about what this process has been like both positive and negative for my special needs friends that may be facing a similar situation, but today is not that day.

This has been a long process filled with lots of "hurry up and wait."  I found myself consumed and overwhelmed by this process.  There were times when I had to just step away for a few days and could feel myself lighten up when I got some distance from all the preparation this process has demanded.

We have sought the Lord first and foremost through these days.  Should we continue in this process?  Should we go through with the "fair hearing?"  Why are none of the appeals going in our favor?  Is this a sign, is that a sign? We have asked so many questions along the way and I can't say that I ever felt 100% about anything, one way or the other.  It felt more like...silence.

There was no strong feeling of yes or no in my spirit.  We moved through each step feeling like, in the back of our minds, well, if we come up against something that is immovable is that our sign to stop or is that the time to push up against it...still silence.  During the times in my life where I felt as though God was silent, I have to draw on what I know of Him...what His Word says about Him, what others have testified about Him,  His magnificence in the the world around me, and the evidence of His hand upon my own life.  

Here is what I know...Christ settled once and for all how He feels about me and how He feels about you on the cross.  With every tortured blow of that whip, love poured out.  With the pounding of every nail, we were on His mind and on that third day death was defeated.  It was there that Christ showed us how He feels about us, we never ever have to wonder about that or have to question that again.

During even the most difficult of circumstances, when we feel like God is far away, when we wonder if He even knows or cares about what is going on in our life, when we ask why and don't get the answer we desire or maybe don't get any answer at all...we must know that His love for us never wavers, His presence never wanes, His plan never falters.  When we question if God is still there, if He even loves us anymore and if He does then why is this happening or why isn't He doing something about it...take it to the cross my friend...that is where He showed His immense and indescribable love for us.

Many times, we may feel that God is silent, but in reality, that is not how it is.  Be encouraged today the God of the Universe loves you and He is near.

Psalm 119:50, "My comfort in my suffering is this: Your promise preserves my life."

John 16:33, "I have told you these things, so that in Me you may have peace.  In this world you will have trouble. But take heart!  I have overcome the world."

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 bomb...no 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 deep...it'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 of...so 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.

Spring

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.    

Waiting

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."