Monday, July 28, 2014

A Different Kind of Summer

We are doing our best to soak up every last drop of our summer.  It has looked different for us this year than it has in past years. Last summer Sophie Kate was oxygen independent and this summer she is oxygen dependent.  It has changed the way we do everything.  It has changed the way she sleeps, it has changed the ease with which we get out and do things and it has changed the way we vacation.  

I have joked before that our girl does not travel lightly. Well, we have taken that to whole new level.  It doesn't matter where we are or what we are doing, there are still meds to give, breathing treatments to administer, feedings to give and frequent suctioning to do to keep her airway clear.  Her oxygen and suction machine have become our constant companions, they go wherever she goes.

Our days with this girl are measured in moments and experiences that look drastically different from what I had imagined over 6 years ago.  Last week we hung our legs over the side of a boat dock and let our feet dangle in the cool lake water, while being splashed by brothers and cousins as they jumped in around us.  It wasn't easy getting her out there but it was worth it.

Sophie Kate went to her first wedding this summer.  Macie has been in our life since Sophie Kate was born.  Just seven months ago she sat with me at Sophie Kate's bedside on the second worst day of our lives until my husband could get to the hospital.  As I sat next to Chad and Sophie Kate at her wedding just over a week ago I could not help but be overcome with gratitude. I am so happy that our girl could be there smiling and feeling good on that day.  Macie's mother said to us, "Thank you for coming.  I know it was not easy for y'all."  No, it wasn't easy and I appreciated those words...but it was so worth it.  Sophie Kate was having such a good day and she was all smiles...it was worth it.  She doesn't get many invitations and I knew that even though all of our names were on the invitation that invite was her's and her's alone.  It was worth it to get her there.

What do we do when our will does not line up with God's will for our lives?  That question was brought up recently, it's a really good question.  I am still figuring that one out. Are we going to let bitterness, anger, sadness and longing for something else consume us or are we going to choose love and joy and a heart of thankfulness?  It's a different kind of life we live with this girl of ours.  Hurt and happy coexist here, but so does deep rich relationship and conversation and understanding and acceptance and love. There is hope and healing in the name of Jesus.

Monday, July 14, 2014

Our Magic Moment

Our family got quite the surprise last month.  Magic Moments has gifted our family with a trip to the happiest place on earth.  


Sophie Kate's surprise was complete with little girls dressed in their princess costumes, balloons, a scrapbook to put all her Disney memories in and a letter straight from The Mouse himself inviting our princess to Disney World.

Magic Moments is an non-profit organization that "fulfills the non-medical wishes of chronically ill Alabama children."  They know they cannot grant the wish at the top of all their families lists which is healing for their loved one, but they can do smiles in a big way.  And y'all know that when our girl smiles it touches everyone around her...
Our surprise was made even sweeter with our family and friends in attendance.
These folks, among many others, have been with us since that Saturday on the 3rd of November 2007 when our baby girl was born.  We were thrilled for them to share in this day with us.
A huge thanks to the Magic Moments team, they were so kind to our girl and our family.
I love that this organization is local and I love that their focus is on the whole family.  The 6 of us have been through the hurt and the happy together.  We are looking forward to lots of happy in the near future.

Wednesday, June 25, 2014

Our Weekend

My husband and I spent 48 hours away from everything this weekend...away from our house, our jobs, our responsibilities and our children.  It was the first time we have spent that much time apart from Sophie Kate in her entire life.  Our church, as well as our friends and family showed us this weekend what "it takes a village" really means.

We slept late, we ate some good food and pretty much did whatever we wanted whenever we wanted.  We didn't even have to leave our spots poolside for lunch, they took our orders and brought our food out to us.  Seriously, the only thing I managed to accomplish on Saturday was to flip half heartedly through a Southern Living magazine.  Oh and I did manage to get myself to the spa for some indulging spa treatments.  We were totally spoiled.  

At one point over the weekend Chad asked me if I missed the kids.  My answer to that was that we have spent time away from the boys before, it isn't unheard of for them to go spend a week at my parents house during the summer, but we have never been away from Sophie Kate for that long together before.  Her and I are together so much, she requires so much of my time.  Tears filled my eyes and spilled over onto my cheeks just at the thought of her. There were so many feelings being apart from her...yes I missed her, yes I wanted things to go well with her while we were away and yes it just felt very weird for her not to be with me.  It's always her and I together, so this weekend was very much needed for Chad and I for so many reasons. 

It's still hard to believe that the weekend even took place, but it did and all the details fell into place and it all went so well.  So many people were involved not only to make this weekend take place but to make it the success it was, we are so grateful to all of you for placing such value on our marriage.  We are humbled again at the outpouring of love for our family.  

Friday, June 13, 2014

For Him

Earlier this week my guy went out of town.  Now Chad hardly ever goes out of town for work which is a good thing given how much he is needed at home.  He was gone from us for two whole days.  I get it that it doesn't sound like much especially when I see it in print but it was "much" I promise you.

The morning he left could have been any other morning, but it wasn't.  The morning he left he could have very well been leaving for work, but he wasn't and I knew that.  It should have been just like any other day...me here with the kids...but it wasn't.  On a regular day he works almost an hour away from us so it's not like he gets to drop by and join us for lunch or anything, but it was still different.  

And yes, of course I missed his help in the evening with all these kids but I can take care of all of them by myself I do it every day.  It was that he wasn't just working an hour away, he was a plane ride away and we all knew that and it felt different and weird to all of us and I'm glad it did.  

He wasn't home for dinner and he is always home for dinner and we missed that and I'm glad we missed it.  The boys didn't spend as much time downstairs because He wasn't there with them.  He wasn't standing across the hospital bed from me as we put our little girl to bed that night.  I did it by myself and while I am completely capable of doing that I didn't like doing it without him.

Things just felt different and they should because when he's home everything is better, everything is going to be OK.  He made everything OK when we moved here not even two years into our marriage and I knew no one and had no family here.  It was truly the period of time where he became my family.  Just him, just being there, just coming home to to us every single night...day after day, week after week, year after year...that is what a real man does.  As the head of our family he stood when I couldn't in a small room in the NICU when our world collapsed and so did I...he stood, by the power and strength of God he stood for me, for our girl and for our family.   No one can fill his role but him...just ask her...

"Happy Father's Day" isn't even close to enough for him.

Wednesday, June 11, 2014

What I'm seeing

The most beautiful things come out of this life with our girl...moments made sweeter I think because of the hurt and because of the difficulty.  I see compassion growing in these boys.  I see a tender touch or a conversation with her when they don't think anyone is watching.  I see them run through our family room heading outside and they stop and reach out to her and talk to her just long enough to see that smile.

At church, I see 13 year olds working with our special needs class and they're not just present...they are engaged and hands on.  I see a senior adult class getting to know a little girl in a wheelchair and finding out how they can help her and her family.  I see a group of men who work just as hard being retired as they did when they were employed doing what they do best.

I see new friends for Sophie Kate who want to get to know her and spend time with her.  Yes, friends her age...sweet girls with kind hearts.  I see friends, family, church folks and a community who never tire of being there for us.  I am so grateful for the folks God has surrounded us with.  He knows our needs before we do.  He goes before us.  He is making a way.

Monday, June 2, 2014

Vertical

I am having trouble putting words to my feelings lately. Things just feel different again.  I sat in church yesterday unable to sing a single word.  Instead I felt wave after wave of emotion and tears come over me.  I continuously had to tell myself "blink it back," "choke it down" and "swallow that huge lump of sadness that's stuck in your throat."  

We are at the beginning of summer, the most wonderful time of the year and I so want to feel every bit of the smile I am forcing across my face.  Last weekend, Memorial Day weekend, held with it all the possibilities and fun times that come with summer and I so wanted to feel it...to feel it without reservation, to feel it without concern.

How do I do this summer with these boys and this girl? How do I do summer, every day of summer with all of us all together?  This oxygen thing is trying to separate her from us.  All of her equipment is trying to do that to us, it's taking our place beside her.  It's pushing us further away from her, it's making it hard to get out with her, it's making it hard to travel and hard to vacation with her.  

She wasn't on oxygen last summer.  She no doubt should have been we just didn't know, but nevertheless she wasn't.  I didn't appreciate those years we were oxygen free enough.  She wasn't on cpap last summer either.  When we left the house we didn't have to travel with those things then.  

Our girl loves the water.  How do we go swimming with her this year?  We don't have a pool, but if we get an opportunity to swim sometime this year, how do we do it? I guess she gets to be in the water for a bit and then she has to get out for a bit and get on her oxygen.  That sucks.

When will we ever get back to the beach?  We haven't been since Sophie Kate was 10 months old.  Sand is not wheelchair friendly at all.  I miss it.  

I try to plan the days that we are going to get out and do things on the day Sophie Kate is with her nurse, but in doing so that means we have to leave her behind and that is incredibly difficult. When you see me out with my boys you have to know that as wonderful as it is to spend time with them and as needed as that time is, my heart hurts because she is not with us.  

I know part of my problem is that I am focusing too much on the horizontal and not enough on the vertical.  I am spending too much time watching and longing to do what everyone else is doing and not enough time in the Word and in relationship with my God.  I feel the discontent and jealousy creeping in.  I know full well that satan would love nothing better than for me to spend this gift of summer longing, wishing, worrying and fretting about what we can't do.  He would love for me to spend the next two months unhappy, discontent and in an all around bad mood.  He would really love it if he could get me to show my kids that you can't be happy unless you live as the world tells you to live.  

I know I am in a fight right now, a battle.  I feel it pressing in on all sides.  Outside influences and thoughts that are not of God are taking up too much space in my world.  My girl doesn't know of a world without joy and smiles.  I have never seen someone more content in their circumstances than her.  She finds joy in the most simplest of days.  She doesn't deserve anything less than 100% of me.  These boys don't deserve anything less either and neither does their daddy.  God has appointed me for this task, for these days with these kids...for this summer.  I don't want anything to steal my joy in these moments with them.

2 Corinthians 10:4-5,  "The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.  We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ."

Trying to keep my perspective vertical people.

Monday, May 19, 2014

What's your story?

Our Spring semester of horseback riding ended a week ago with a horse-show put on by the riders of Special Equestrian.

This has been such a neat thing for us to experience with her.
Our girl received a first place ribbon and a trophy. Somebody please tell me how every participant does not deserve a trophy...go ahead, I dare you!  I'm not sure who was more excited for her...Chad and I or Grey.
As you can see, Sophie Kate pretty much relaxes when she is on her horse.  It was a sweet ceremony and she got to ride a long time which she loves.  These animals are such good therapy for her.  I am so thankful that she is able to participate in Special Equestrians at this time.

There is a new movie coming out soon called "The Fault in Our Stars," actually it is a book being made into a movie. Now I don't put myself in situations to read or watch sad books or movies, but I have seen the movie trailer for this book/movie that I will not be reading or watching and there is one part of the trailer that I absolutely loved.  The main guy character is talking to the main girl character and he says, "What's your story?" The young girl replies, "Well, I was diagnosed when I was 13..." The guy then says, "No, I mean 'what's your real story, your hobbies, your passion." I seriously love that part.  I've decided this is going to my new response for Sophie Kate.  When doctors, therapists, etc ask me about her story I am gonna say, "Well, she loves music and being outside.  She is happiest around her brothers and likes to be right in the middle of noise and chaos.  She smiles really big when you get on her level and talk to her."  I can't wait to see all their faces.

Seriously, if I tell you she has Cerebral Palsy what does that really tell you about her?  If I tell you she is feed through a feeding tube and is on continuous oxygen now and she has seizures and she is nonverbal and is wheelchair bound...what does that really tell you about who she is? But when I say she has a smile as bright as sunshine and she lights up when you talk to her not at her and she's really into Tinkerbell right now...well, that's a description.  When I say she likes for someone to read to her and smiles when listening to music and likes to be tickled well that my friends is a story worth telling.  

Okay so while I will most definitely not be seeing this movie because it's going to be super sad and I don't do that to myself anymore, I have to say that I really love that part of it and am quite satisfied that it is the only part of that movie I will ever see.  I am so going to do this though and I will report back and let y'all know about all the funny looks and responses I get.  She is so much more than the sum of her diagnoses.