Wednesday, January 28, 2015

Homebound

Things have been quiet around here because quite frankly there is not a lot to report...and that's a good thing.  Sophie Kate hasn't been seen around town much these days because it is "sick season."  She is home from school, she is home from church and she is home from just about all extracurricular activities.  I would normally have a huge problem with that because there is always a part of me that gets sad that she can't get out and go places with us during the winter.  However, when I look back on this season so far, I know without a doubt that we have made the best decision for her.  She has been so healthy so far this winter. And it's not just that she is sitting at home with her boring mama either.  Sophie Kate gets 3-4 visits a week from the homebound services through our school system.  Her teacher and her therapists are coming weekly to work with her and she is making wonderful progress while being in an environment that does not compromise her health.

This would normally be the time where I would tell y'all how mad it makes me when parents send their children to school sick and how my "well" child can't go to school because of the selfishness of some parents.  And yes that still makes me sooo mad so don't get me started on that because I'm not doing that today.  She is doing so well and is accomplishing so much here and I am just not going to go there today.

Last year was our first experience with homebound school and it came about as a result of a very serious illness that SK battled in December of 2013.  So, homebound school last year was very limited for Sophie Kate because she was recovering and was so very weak.  This year, however, we took her out of school in November to try and keep her well through the winter.  So homebound school this year has looked quite different...she has soared.  I even get the benefit of seeing her teachers and therapists work with her and let me just tell y'all that is a privilege.  I wish everyone could see how hard these folks work and how much they put into these children and in turn how the children respond.  It is nothing short of amazing. 

Sophie Kate is using her switch to talk for her, she is making choices and she is staying strong and healthy.  So as you can see, my feelings about her homebound status this season have changed a bit when I see how well she is doing.  Now you know why my answers to your questions about her might be short and sweet...she's good, she's healthy.  It's really not a bad thing that I don't have a lot to say about what's going on here, it's a nice change of pace.  

Psalm 71:6, "By You I have been sustained from my birth; You are He who took me from my mother's womb; my praise is continually of You."

Monday, January 12, 2015

Yes

Going back to school and getting back to a routine last week was brutal, I'm not going to lie.  People are tired and ill-tempered and do not have nice faces when they wake up early around here...seriously I don't know how Chad deals with all of us some days.  He is the only one in the house that doesn't wake up mad.  Oh not mad at each other, just mad because it's too bright and we like sleep alot.  How many more days is it until summer vacation? Come on, I know someone knows the answer to this question.

Sophie Kate is doing really well so far this "sick season," as we like to call it.  We are keeping her home most of the time, but she has been to some of her oldest brother's basketball games.  Do you think having her hold her own bottle of hand sanitizer is taking things a bit too far?  Cause I think it sends the perfect message...back off!!  No really, I used to have a little stop sign that hooked onto her stroller that said, "Stop, wash your hands before touching me."  I don't know what ever happened to it, but I so loved it. Now, we just carry around our own bottle of hand sanitizer.  

We are managing well with her hip right now.  We did see her Orthopedic surgeon back before Christmas.  We have a lot of options on the table concerning her hip situation, ranging from doing nothing to full blown surgery (which really isn't a option in my opinion at this time).  We are weighing all the options and are seeking wisdom from the One who knows her best.  We pray for direction from God as we navigate this new road with our girl.  Please know though that she is doing well and she is healthy and for that we are so thankful.  

This sweet girl is so strong and shows me every day what it looks like to be content and joyful in your circumstances. This question was asked in our small groups yesterday..."Would we still love God as much as we say we do if everything fell apart?"  I have thought a lot about this very question or a variation of it many times over the past 7+ years.  I can honestly answer "yes."  Everything has fallen apart, everything I knew, everything I thought I would have...dreams and futures, paths and directions have all changed and the answer is still yes.  My beliefs have been challenged to the core and have been rebuilt with clear eyes and a new understanding.  My God, my commitment, my love and devotion to Him are no longer based on my circumstances but I didn't fully know that until my circumstances changed.  And in the midst of change and unbelievable difficulty and turmoil and the shifting of everything I have ever known...He remained. God remained unchanged and unmoved and steadfast. And while I would give anything for things to be different for Sophie Kate, I never want go back to the person I was before.

Hebrews 13:8, "Jesus Christ is the same yesterday and today and forever."      

Sunday, January 4, 2015

A New Thing

"Forget the former things, do not dwell on the past.  See, I am doing a new thing.  Now it springs up, do you not perceive it?  I am making a way in the wilderness and streams in the wasteland." Isaiah 43:18-19.

How is it that we relagate a new beginning or a clean slate or a fresh perspective to just once a year?  We kind of do, don't we?  And I get it, it feels natural it's the beginning of a new year, hope and possibilities seem to lay out before us. We feel a renewed sense of being able to change things and get things done.  Then life happens and disappointment sets in and we find ourselves living the same life and doing the same things we have always done day in day out, week in week out and year in year out.

But our God isn't confined to a new year or the start of a new month or the beginning of a work week because we come up against trials and difficulty and tough decisions continuously.  "Now it springs up, do you not perceive it?" Oh, I so want to perceive it.  It may not look like we want it to look, but we want to perceive it Lord.  He's making a way when it looks like there is no way, He is pouring streams into our wasteland.  He is sustaining us and holding us in the seasons when the answers to our prayers are "no" or "not right now" or "wait."  He is still doing a new thing.  He is doing a new thing in our hearts, if we will let Him.  He is doing a new thing in our families and in our churches and in our communities.  

We can't fathom it, we can't imagine it in our pain and in our hurt, but God let us perceive it...through the fog, through the tears, in the brokenness and in the heart sickness of this life let us perceive it!  In Your name there is hope, in Your love there is peace,  in Your word there is truth, in Your death and resurrection there is life.  You are light, let us shine everything You are on our darkness, on our hurt, on our worries and into our decisions and watch what "springs up."

He is doing a new thing!

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."