A snapshot of our day

I realize I haven't been on here in forever, but I never want to forget what our regular, ordinary days consist of sometimes.  As so many of you know Sophie Kate is basically home bound from the months of December-March, the sick season is hard on our girl and we go to great lengths to protect her in every way we can during this time of year.  The days are long though and can be quite lonely for both of us.  This year more than years past I literally feel like the flu is raging right outside our door.  Sophie Kate's three brothers are exposed to it in some shape or form every single day at school and then have to go through decontamination when they return home in the afternoon.  When folks ask how we are doing, I answer with my go to phrase of "We're still hanging in there," and we are.  And we will continue to do so until this awful flu season subsides; however, some of these regular routine days hold the sweetest moments.

Sophie Kate has been dealing with some pain for the last month.  It's not terrible pain, but she does cry out from time to time and we are having a very difficult time pin pointing exactly what it is that is hurting her.  It's not something that upsets her all the time or even some of the time, but we are dealing with something and as soon as all this flu stuff subsides we will investigate this further with her doctors, but right now it is not in her best interest to be anywhere near a doctor's office or hospital.  So, as we do much of the time, we are managing her at home.

On this particular day, I had moved SK from her recliner to the couch so she could lay down for a bit and it triggered the pain that she has been dealing with and she began to make that face that we all absolutely dread, which is the Sophie Kate cry face, it will completely break your heart.  Sophie Kate doesn't cry much at all so when she does, she means it.  No one can take it and we will do anything it takes to get her to stop.  On this day, Grey was home from school with us and he saw her begin to cry and came running over to her begging her to stop.  I am not kidding y'all, this is what we do.

Grey had been listening to music on his phone.  In fact, he had been at a church retreat just the weekend before and was listening to some of the worship songs from that weekend.  He had been trying to remember/find one song in particular and he had finally found it and he was playing that song when he came running over to his sister.  He pulled the ottoman up beside the couch so he could be near her and rubbed her cheek so softly while singing along to the song that was playing.  This was my view...

She stopped crying when he held her hand and sang to her, "Come Lord Jesus, come Lord Jesus come, we will behold the Lamb of God our Father send your spirit and fill this place with freedom."  Over and over he sang to her while she looked at him and knowingly smiled off and on, because she knows.  She knows far more than we do about her/our Creator and when someone speaks or sings words of life to her, it becomes a moment you can see and feel.  

She doesn't look at too many people like that, goodness she loves her brother and he thinks the sun rises and sets with that girl.  Just a regular, ordinary kind of day where we shut the world out as we fiercely try to protect her.  Thankful for these reminders on the long, hard days that seem endless this time of year.

Church and Community

My husband, Chad was ordained as a deacon in our church last weekend and while folks would tell us that is it an honor, if we are being truthful, you instead become keenly aware of your sense of inadequacy.  I am thinking that in this role as a servant in the church that is not entirely a bad thing.   Nevertheless, Chad stood before our friends, family and fellow church members and shared how he came to know and follow Christ and little about our family's journey since then.  He spoke about how God had been preparing him for that day in November of 2007 when our little Sophie Kate was born. Hearing him speak of those incredibly difficult days moved me and moved others as well.  Chad has always had such an ease about his acceptance of Sophie Kate and all that is our world with her.  It is an ease of acceptance that I have always somewhat envied.  See, he's not always trying to "fix" her like I am.  He just loves her and he just does for her...it's lovely.  I love to hear him talk about her to other people.  I had just never heard him speak to such a group about her as he did that night and it touched me and the boys deeply.

As I sat in the room watching him speak, I could not help but think of all the people we love so much that were gathered there.  I know Chad had to feel that too.  There were so many who have been such an influence in our life.  God has always known that we would be Sophie Kate's parents. God had spent years even lifetimes setting up the circumstances under which she would be born and raised.  He knew what an incredibly difficult journey this would be and He surrounded us and settled us in a community and in a church that would love us, support us and encourage us.  Those are not just good church words, please don't let those words fall flat because of their overuse.  Let me be more specific...folks in that room pick up my kids from school when I can't, some sit with Sophie Kate so I can go to church, some take care of her at school, some do things with my boys to make them feel loved and special, some cook for us, some do laundry for us, all of them do life with us and pray for us.  I could go on and on about our family and friends.  They aren't just there when things are good, they aren't just there when things are bad.  They don't tire of us and our girl and this journey we are on.

God allowed Sophie Kate to come into our life.  God allowed the incredibly difficult times to come into our life.  He also set in place every single thing, every detail big and small to support us and to show His love for us.  There is a passage in the Bible that talks about the parents of a blind man and the disciples of Jesus are asking what the parents did to deserve having a blind child.  It is found in John chapter 9 verses 1-3, "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.'"

May there be no mistake, there is nothing that Chad or I possess except that of Christ in us that has equipped us for this journey.  We are not good enough or strong enough or resourceful enough or determined enough for this...it is Christ in us.  It is to His glory and it is His power and His love and His strength, not our own that sets our feet and hearts in motion.

That evening was very special to our family and I will remember it for some time...that feeling of being among people who love God first and love other people second.  We felt such love and support for our entire family.  Thank you family and friends and church family for loving us the way you do.

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.