Thursday, November 3, 2016

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.

Tuesday, October 25, 2016

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."

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 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.

Saturday, March 19, 2016

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.    

Wednesday, January 13, 2016

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."

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 perfect...no 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 health...it 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!