Tuesday, September 2, 2014

Right Here

I sometimes get caught up in what everyone is doing around me...their service projects, volunteer opportunities and mission trips.  I hear about a medical mission trip at church and being a nurse myself I think, "Yes, that's what I'm suppose to be doing."  I would so love to go on a medical mission trip one day, or at least I really think I would.  I may or I may not get the opportunity to do that one day.  God always reminds me as I am looking at the lives of others and thinking what a difference they are making in this world that I am right where I am supposed to be.  This space, with these people, in this community, in this city...this is my mission field.  He has absolutely equipped us for our journey and there is no way I can accomplish my purpose apart from Him.  However, I've not been called and I have not been equipped for someone else's journey and purpose.  

I know with certainty that my service through the direction and urging of God is to my family and the folks around me right now.  That may not always be the case, but God has shown me over and over again, because I'm real hard headed, that His plan for me at this time is here at home. That may sound like the easy way out to some, that I very lightly can say that I know this is where I am supposed to be and where I am supposed to concentrate my time, energy and effort so then I can say "No" to every thing else...that is not what I mean to say.  

I send the emails to folks wanting to volunteer...wanting to spend time at my children's school, wanting to help out at church and inevitably I end up having to send the email that says, "Sorry, but Sophie Kate is sick or she has a doctor's appointment and I am not going to be able to make it after all."  Yep, I'm that person and yet I keep trying.  It's a long and ongoing lesson I am learning.

I am sitting by her side again today.  I can read her feelings on her face.  Her eyes are not as bright as they usually are, she doesn't feel like smiling today, she's not feeling well. She's struggling keeping her O2 levels up due to her increased secretions.  I am doing all I can to keep her comfortable and to keep her levels up.  This is where I am supposed to be...I feel it, I know it.

Monday, August 18, 2014

Beauty in Difficulty

The most difficult and the most beautiful things have come out of these 6+ years with our girl.  The difficult things are never forgotten but its the beautiful that I want to remember.  It's the lovely that I want to treasure.  That's not to say that the beautiful cannot go along side the difficult because it certainly can, I have seen it firsthand.  I have a picture on my phone of Sophie Kate when she was so sick, in the PICU and on a ventilator with a smile on her face.  I sent it to Chad and he and I are the only ones to have ever seen it and I said, "Who smiles like that with a breathing tube down their throat? Who does that but this girl of ours?"  It was an extremely difficult time but a beautiful expression of her sweet spirit.

This Sunday I had the most lovely conversation with a lady who parked next to us in the handicap spot.  She had seen us around church and wanted to say "Hello."  She too had a special needs son who lived for 36 years.  We talked about our babies and I introduced her to mine and we connected in an instant.  It didn't matter our different ages or stages of life we were both mamas to these kids and we talked about the tough times and the lovely times...most definitely a divine appointment.

Different folks brought us dinner over the summer,  that in and of itself is lovely to me, but in one of the boxes we found this...
It is a note to Sophie Kate from one of her friends, complete with a picture of them in matching pink tutus...too sweet.  Sophie Kate also received her second invitation to a friend's birthday party last week.  The first one came years ago when she was in 3K.  How sweet of these girls to befriend SK in such a way...at their ages it speaks volumes of their character and their heart to look past the wheelchair, to look past the oxygen and know that Sophie Kate is someone worth getting to know.  I am privileged to watch these beautiful relationships begin to grow.

Romans 12:10, "Be devoted to one another in love.  Honor one another above yourselves."

Monday, August 11, 2014

What I want my boys to know concerning their sister

There are so many times that our life revolves around this girl of ours.  It may be a hospital stay or a sickness that keeps one of us home with her.  We can't just walk out the door and go somewhere at a moments notice and we never travel lightly.  Right or wrong, we will run ourselves ragged to keep things as normal as possible for these boys...to take them places and make sure they are still able to do things with their friends.  Things get really serious around here at times and hospitalizations occur and things get turned upside down and schedules get tossed out the window and then things settle down again and we get back to a "normal" of sorts and we are able to settle into a routine again. 

Whether it's crazy or calm around here I want you boys to always remember...

1. You matter.  The first thing that pops into my mind when I find out your sister is being admitted to the hospital is y'all.  It may be nothing more than pure survival but it is all for y'all....who will you stay with, what poor soul will have to feed all of y'all (ha ha), how will you get to school, practice, etc, when will one of us be able to get home to see y'all and tell you what is going on.  Even if both of us are needed at the hospital we can't stop thinking about where you are, what you are doing and how and when we are going to be able to get to you.  You matter big time.

2. You are prayed for as much as she is.  When your sister is sick and/or in the hospital I know you must think all we care about is that she gets better and that has to be our only prayer.  It isn't.  We pray that we will be able to help y'all have an understanding that is appropriate to your years. We pray that as you see us care for your sister you will understand what it means and what it looks like to put your own needs aside for someone else.  We pray that what satan has intended to tear us apart would instead bind us together in Christ and in love stronger than we were the day before.  We pray for you.

3.  You guys are always on my mind.  With every medicine I give, every feeding I administer, every diaper I change, your day and your schedule is on my mind.  I know you probably think that it's the other way around, that it is her schedule that runs our life, but I know different.  Yes, I have to do things for her out in public.  I have to feed her at football games or give her water and meds at a get together with friends or even change her diaper in some of the most remote areas of Disney World, but I do them so that we can be where we need to be for y'all.  I do that so I don't have to miss a game or so that you don't have to have time with friends cut short or so that we don't have stay home when we could be at Disney World.  Your schedule is why I do what I do.

4.  I would do the same thing I do for her for each one of you if you needed me to...please know that.  She is not more important than you or more loved than you.  It may appear to you that I do more for her than I do for y'all because she needs me in a different way than y'all do. There are basic human needs that I have to do for her that y'all are now able to do for yourselves, but you need to know that if the situation were reversed I would do the same thing for any one of you.

Always know there will never be a shortage of Jesus or love or conversation or laughs or hugs or back scratches here.

Monday, August 4, 2014

Back to School

Sophie Kate will go back to school on Wednesday.  For now, those in her life making decisions for her want to her to go to school.  Her parents, her doctors and her teachers want this for her because she enjoys it so much.  I know the day is coming when school won't be an option for her, I can feel it...but it's not this year.  

I am finding the thought of it difficult.  When school can adversely affect the health of your child you find it very hard to let go of her hand and walk out of that classroom without her.  I'm not buying crayons and scissors and school glue for my first grader.  I am scheduling the delivery of her oxygen concentrator so it will be waiting for us on the first day of school.  I am packing her AFOs so that she can use them during therapy.  Usually I get to at least do one "normal" thing and buy our girl a new backpack, but seeing as how she only attended school for three months last year her old backpack is still in really good shape...as are her clothes and her shoes...no scuff marks and no worn out places.  

After so much time together, I find it difficult to turn her over to someone else.  She will have a new nurse this school year.  On the first day of school I will be introducing a complete stranger to my daughter and am expected at some point to leave her with them.  I haven't done that in a very, very long time.  There is not enough time in the day to tell someone everything there is to know about this sweet girl.  There are so many things that are just automatic to me, I don't even think about them...I know I am going to leave something out. 

There won't be a bus pulling away with her waving bye to me in the window.  She won't be hopping out of my car in carline walking in with a backpack that is bigger than she is.  I will take her to school myself after all the other children have been dropped off.  I will do it though because I fear there will be a day when she can't go.  I fear there will be a day when the risk far out weighs the benefit.  It's not this day though so we will wake up ridiculously early and I will pack up all of her supplies because she enjoys school.  I can't keep her to myself, kids need to see her at school, they need to get to know her and spend time around her. She has purpose and worth and a smile that is so contagious.  God has a plan for her life and without a word ever spoken the two of them will change hearts and minds. She's the teacher and we are the students. 

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.