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 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 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 are her clothes and her 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.