Monday, September 29, 2014

Connecting

Sophie Kate's recovery from having her tonsils removed is going very well.  We are seeing great numbers on her monitors, numbers that we haven't seen in weeks maybe even months.  I won't bog you down with all the details, but those of you who prayed for her just have to know that she is doing so so good.  I am so grateful for God's healing hand on our little girl.

We were all back at church together this Sunday...it has been 3 weeks since that happened.  It felt so good to back together with this body of believers.  We talked about this specifically in our small group yesterday morning and I would love to share with y'all why I go to a small group at church.  It's not so that we can shut out folks who don't think like we do, it's not so that we can judge all of the folks who aren't there and it's definitely not so that we can think of ourselves as better than everyone else...please hear my heart on this.  

I go to a large church and I choose to go to small group because that's where relationships are formed, that's where we get to know each other and support each other and encourage each other.  It's where we become involved in each others lives and struggles and victories.  It's where we cry together and laugh together.  It's where we open our Bibles together by either turning pages or tapping on the app, it doesn't matter.  What matters is that we are reading, digging, discussing and applying the truths in God's Word...we are not called to keep this stuff to ourselves.  We are not called to sit in our closed off circles with our doors shut.  We are called to love and share and invite and help and serve to the absolute fullest of our God-given abilities with a humbleness of heart.

I want to encourage you to be in a small group in your church or to visit a small group in a church in your community.  I know wherever you go you will find a group of messed up people in desperate need of God's saving grace.  Yep, I know that sounds weird but we are...we mess up, we let folks down, we say and think stuff we shouldn't, we are anything but perfect but we also love Jesus fiercely and want to show and share His love with others.  

I want to leave y'all with something our small group leader said yesterday that has stuck with me..."You will always find God running toward the mess."  It's true, God doesn't turn and head the other direction when we mess up.  As a follower of Christ, I have never felt His presence more than when things were difficult and circumstances were just plain hard.  I am humbled and grateful that the God of the Universe loves me enough to run toward the mess I make of things...He loves you that much too.

Ephesians 3:17-19, "And I pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge-that you may be filled to the measure of all the fullness of God."

Monday, September 22, 2014

Home

We brought our girl home on Friday.  I could not have been happier to have my family all together this weekend.  It's so unnatural for us to be spread out here, there and everywhere.  It's necessary sometimes but getting us back together is almost all I think about.

This surgery seems routine to most, I know, but Sophie Kate does nothing by the book.  Removing the tonsils of someone who already struggles with their airway, presents a whole new set of potential problems and challenges...and our girl always keeps folks on their toes.  She had a very difficult surgery day.  I knew it would be a hard day, but 5-6 hours in the recovery room is not an experience I ever want to repeat and I know Sophie Kate feels even stronger about that than I do.

The hours that followed in the PICU were equally difficult as we hung on every number on the monitors and every alarm that sounded minute by minute.  We went to bat for our girl pleading for time before the decision would be made to re-intubate her.  They don't know her like we do. We knew that all she needed was time for them to see what she could do...this girl is so strong.  The looks on the doctor's faces was priceless.  They could not believe she did not have to be re-intubated.  I love to see a little 6 year old girl prove medical people wrong.  See it all goes back to the "they don't know her" thing...and I love it when she leaves them speechless.

This thing isn't going to be easy any time soon.  I've heard stories about how bad this stuff hurts and we are seeing that in our girl.  Now that we are home, the recovery starts and I am told that days 5-7 can be rough.  I pray that God whispers to her heart, her mind and her hurting places and takes the pain away from her.  That little girl in pain is a weight I cannot bear, God give me the strength to care for her as I sit by her side again.

This picture says everything I cannot say about our home...
Him and Her
They are all that is good in this world.

Please continue to pray for her recovery.  We are ready to see those smiles come back and stay for a while.

Wednesday, September 17, 2014

Right Now

I find myself in a very familiar spot, sitting as close as I possibly can to my girl's hospital bed.  We have been inpatient at Children's Hospital since yesterday.  Sophie Kate is having her tonsils removed today.  We have been dealing with an acute situation of upper airway obstruction for about three days now.  Her doctors have determined that her tonsils, being as enlarged as they are need to come out.  She has slept for three nights sitting almost straight up, leaning only slightly forward over a pillow.  It's no way to live and breathe, but it seems to be the only way she is able to take a good deep breath.

No one here takes putting her to sleep lightly.  While I have every confidence that they know exactly what they are doing, they also have a good healthy fear of her.  It's a good combination, because they know what they are dealing with when doctors start talking surgery for this girl.  It's a struggle for her to keep herself oxygenated right now.  In fact, she isn't doing it by herself.  There are a lot of interventions going on here and folks have been in and out of our room all night trying to help her help herself.  "Let's just get her to surgery time," they say and my heart hurts a bit more as I consider what she is up against...the recovery, the pain and the not understanding.

It's not her hospital bed, it's not the hospital bed in her room at home where she and I are most comfortable.  It's a hospital bed we don't know, with other folks making decisions for her, many who are new to this world we live in with her.  They listen to me as I try  to catch them up on the six years of her life.  It's almost impossible, so I go really technical and really medical with them just to get through it.

Her eyes were so big and bright yesterday, more than one person commented on them and on that smile of hers.  I know that is fixing to go away from us for some time. Please pray for her surgery, it will be taking place mid morning.  Pray specifically for her recovery, both immediately after surgery and a week out.  While we know this surgery isn't the answer to all our questions, we pray it will be the answer to some of them.  Pray she will come off the breathing tube from surgery and be able to oxygenate herself easily and without obstruction.

We wait and we hope expectantly in the name of Jesus.  I will leave you for now with the words my friend texted me after I asked her for specific prayer for Sophie Kate..."It's done!"  I love that!! 

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.