Friday, January 31, 2014

Moving On

We are coming out of 3 days of being shut down due to winter weather here in Birmingham and the surrounding areas.  We are starting to thaw and will be emerging back into our routines very soon.  All the folks I have been surrounded by and have come into contact with have been doing the best they can in the situation we have all found ourselves.  Actually, in reality, everyone has been going above and beyond what was required of them...that's just how we do things down here, I would have expected nothing less of these selfless people.  There are no complaints or criticisms because there is no point. Everyone is stepping up and helping in whatever ways they can.  It didn't matter who your mama and daddy were, it didn't matter how much money you had, it didn't matter what church you went to or didn't go to...and you know what?  The pricey cars slid into the ditches just like the cheap was just neighbors helping neighbors and churches and communities supporting their fellow man.  It was good stuff in the midst of a difficult weather situation...well done southerners.

Sophie Kate has been warm and in her comfy clothes and in front of the fire.  I feel like a song put on continuous repeat when it comes to telling y'all how she is doing.  It's still the same...she's getting better, she's still struggling at night, the days and nights are long with very slow progress. She does better for a period of time and then she struggles for a period of time.  It's a lesson in waiting and being patient so that's what we're doing.

Catching y'all up on our Disney trip was very rudely interrupted by our stay in the PICU and I feel like getting back to that's what we're gonna do.  This trip has become such a sweet memory for me especially when I look back on pictures like this one...
On Wednesday of our Disney week, we spent our day in the Magic Kingdom.  It's my favorite place and the center from where all Disney blessings flow.  We were in for quite a day with an appointment at the Bippity Boppity Boutique and a reservation for dinner with the Disney princesses. This day was not capable of anything but smiles and fun.

She's already a Princess, nothing they could do would make her any more beautiful in my eyes, but it sure was fun nonetheless.

 Our Princess

MiMi and Sophie

 Me and my girl

 SK and her cousin Emma Claire
 PawPaw and MiMi with two of their Princesses
Our Princess Dinner...first order of business was meeting Cinderella of course.

 Snow White

 Princess Aurora
 SK and her cousin Olivia
Poor Princess Jasmine, she can never let herself go.  Thank goodness the boys weren't there her outfit was quite skimpy.

Our Princess dinner was just us girls.  It was one of the most fun things we did.  Sophie Kate was so so happy on this day.  She lit up when the Princesses came over to her. It was a treasure to do this with my mom, my sister, my nieces and my own little girl. I won't soon forget it.
This picture makes me so happy!!

Monday, January 27, 2014

What I Learned from Children's Sunday School

I have the privilege of helping with a second grade Sunday School class at my church.  Some weeks I teach, some weeks I plan games, some weeks I plan a craft or other activity and then some weeks I just sit back and receive a blessing even though I did nothing...yesterday was one of those sit back and get "schooled" days.  Our lesson was on Habakkuk, yeah I know, it really is a book of the Bible.  It is one on of the minor prophets in the Old Testament but certainly not minor in its message.

I listened as my son read Habakkuk 3:17-18 aloud..."Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior."

Oh boy, let's take pause and not miss the message here.  I felt like shouting after reading that one, except that's not really the kind of person I am, but I just couldn't let this one go by without a word.  It's easy to praise God and trust Him and be on board with the plan when things are going good, but a different story entirely to continue to praise and trust when times are hard and things hurt.

I feel like a bit of a rewrite might be in order here, not to be disrespectful to God's Word but to put it in real life application for my family, because all of us have had or are currently having times our life when we can live this thing out!  My version might go something like this...Though the answers to our prayers right now are "no" and our hearts are hurting, though we sit in the PICU with our daughter and cry out, though our strength fails us and we become exhausted and overwhelmed, yet we will rejoice in the Lord, we will be joyful in God our Savior.

God's people don't just follow God when things are going good. God's people follow God because He is God and when things happen that we don't understand we trust and we have faith in the One who set the stars in the sky and told the oceans how far they could come.  If He did nothing else for us He did enough by sending His Son Jesus to die on the cross for our sins so that we would not be separated from God for eternity.  If He did nothing else for us He provided a way through His Son Jesus for our sins to be forgiven.  If He did nothing else He saved us...but He didn't stop there.  God continues to love us and bless us and take care of us and pursue a relationship with us.  He continues to give and provide even though we are not entitled to a dang thing and in my arrogance and in my pride He still sees fit to love me.  It's all grace...unmerited favor from God, undeserving and unearned just given from a heart of love.  

Oh I will continue to praise Him when I feel like I am "stuck" at home with my girl.  We will continue to rejoice when things hurt and when circumstances seem impossible.  It's not all "sunshine and rainbows" over here, we hurt and this journey is painful, but the reality is we don't need a miracle to know that God loves us.  The debt for sin has been paid in full if we will just accept it and that alone is worth praising God and rejoicing over.  It's not all about us, it's not even all about Sophie Kate (even though she thinks it is, ha) it's all about Him! We want to ever and always point to the God of our salvation and give all glory and honor to Him!

Now that's a children's sunday school lesson that will preach...Habakkuk, who knew!

Thursday, January 23, 2014

A Servant Heart

Sophie Kate starts home bound services through our school system this week.  She will be getting all of her therapies (PT, OT, speech and vision) here at home through the end of March.  She will be seen once a week, which will be a good schedule for SK to start out with.  She is so weak right now so she will definitely need to build up some stamina before she is able to handle a full day of school.  She continues to get better, although we are still making adjustments with her oxygen.  Just this week we have had to go up on her oxygen to 4 liters after having a good run at 2-2.5 liters last week.  She is showing us that there is still healing that needs to take place.  I continue to be taken aback by how hard this virus hit our girl.  The toll it has taken on her is still evident within her body.

I tell her almost every day how beautiful she is.  There is beauty in her smile, in her face and in her presence.  It's not just outward beauty, but it's also an inward kind of beauty that is felt more than seen.  I spend so much time by her side.  My thoughts constantly battle each other for what is true.  I feel the attacks in my inner most thoughts and have to focus on what is real and what I know to be true.

Questions and fears that I don't even want to write down in black and white invade my thinking and scare me to death. I've had two really rough days this week where all this stuff hurt so much.  As I go about grocery shopping and running errands when I can, I wonder what the story is of the folks I encounter.  How are they hurting, what is weighing heavy on them as they go about their day doing things that have to be done.  We just never know what others are dealing with.  

My girl has given me a compassion and love for those who are hurting.  She has taught my boys how to love regardless of outward appearances and abilities.  My youngest son has asked us to teach him how to take care of his sister. Since Christmas he has learned how to prepare and administer her breathing treatments.  He has learned how to connect her feeding tube to her feeding pump, turn it on and feed her.  He gives her night time medicines (under supervision of course).  He even suctions her...y'all he's 7!!!  He does it all from a servant heart of love.  He tucks her into bed at night and after he has hooked her up to all her machines and monitors he climbs up into her hospital bed and kisses her goodnight...pure love.  A love that is so big and so strong for her that just telling her is no longer enough for him...he has to do and serve.  I am so touched by his kindness and blessed to be able to witness this act of love.

Philippians 2:3 "Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important that yourselves."            

Thursday, January 16, 2014

In His Name We Overcome

We are starting the process of home bound school for Sophie Kate.  Not sure what to expect or how this kind of thing is done, but what I do know is that she enjoys school. She enjoys being there, being around people, having people engage with her and participating in different activities that stimulate her in a positive way.  I was asked by her doctor if she enjoys school...that would be a resounding yes! The thing that makes my mama heart happy is that they miss her and they want her back at school.  I love how much they love her.  I love how much they do for her and care about her to the point that they want to continue to see her even when she is not able to attend.  Home bound school will be temporary for SK, she will be able to return to school in the spring.

She is doing so well at home.  Her numbers are looking great which makes my inner nurse very happy.  Her eyes are bright and her face is smiley which makes my mama heart happy.  We continue to work on getting her O2 back to 2 liters, we now have her pretty consistently at 3 liters which is a continued improvement.  It almost makes me think that she is ready to get out and about again, but then I remember 4 short weeks ago and I know we can't go back there and I know she still needs to be protected and her lungs still need to get better.  

"In His name we overcome,"were the words we sang Sunday in church.  I feel everything so deeply.  I feel the hurt but I also feel the highs.  I want to feel and experience these days.  The difficult ones make the good ones all the more dear to me.  Regular, "normal" days are a treasure to me, I long for them when our girl is sick and especially when we were in the hospital with her.  I would have given anything for a "nothing special" kind of day when I sat at her beside for 4 days while she was on a ventilator.  I helplessly watched her hurt and struggle, wishing there was a way I could trade places with her.  

"In His name we overcome."  We get through another minute, hour, and day because His love and His grace is enough.  We put her to bed every night and watch her drift of to sweet relaxing sleep while we look on exhausted from a day of caring for her.  Our strength fails us, but in His strength we go on.  Alarms go off in the night and we (mostly Chad because he's a rock star when it comes to thriving on little sleep) find a way pop up out of bed and attend to her every need.  Christ's love in us compels us to and in His name we are somehow not overwhelmed. There seems to be no end to the daily drain and strain on us physically and emotionally as we care for our daughter in every way you can imagine and in so many ways that you cannot, but in His name we carry on.

I want folks to know far and wide that it is nothing of ourselves, nothing that we possess, nothing that we know better than someone else, nothing that makes us more equipped than anyone else to do what we do other than Christ in us.  We are not smart enough, strong enough or capable enough for this journey apart from Christ.  It is in His name that we overcome...we overcome depression, feelings of isolation, hurt, pain and sadness on a daily basis.  We commit to live for Jesus and it is because of our relationship with Christ that we commit to each other and to this family.  In turn, in our thanksgiving and in our gratitude we experience joy and love and laughter and smiles in a real authentic genuine way.  I feel it and I have to feel it so that I can see Christ's protection and His hand on us in the darkness and then when He redeems us out of the darkness and we experience a time of healing and smiles.

John 16:33 "I have told you these things, so that in Me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world."

Thursday, January 9, 2014

An Update on SK

We continue to be in recovery mode here.  Sophie Kate is getting better and better every day.  We can see it in her eyes and in her smile. Metapneumovirus has left the building but in its wake it has left our girl with compromised lungs and a weakened immune system.  The doctors told us it would take months for her to recover from this and they seem to be right. 

She is currently requiring anywhere between 3 and 5 liters of O2, baseline for her is 2 liters.  She is still dropping her O2 sats on a daily basis, but has improved on the frequency of those episodes each day.  We continue to give multiple breathing treatments throughout the day and we are having to suction her more than normal as well.  We are, however, headed in the right direction, as almost all of these areas have improved since we have been home with her.  

We went back to see her pulmonologist last week and he too is pleased with the progress she is making at home. However, he feels as though Sophie Kate needs to stay out of school for the months of January and February.  He said the risk was just too great.  He told us she will get sick if she returns to school now and with the compromised state of her lungs, she will wind up back in the hospital.  Her lungs will not handle another respiratory illness well at this point.  He encouraged us to be patient with her will take months he said.

We are having to do so much without her and I don't like it. We went to church Sunday while a friend stayed home with her, it was weird being there without her.  I felt like I had left my heart at home.  It was wonderful being back among these folks that love and support us so much, but we were missing our girl.  We just don't feel whole without her with us.

She has come a long way since this picture was taken...
We are seeing more smiles each day like this one from Christmas Eve...
It is an absolute privilege to be by her side.  Just as she wakes up each morning with a smile as bright as the sun ready to take on the day, God too gives me the strength to face each new day with renewed energy.  It is never easy, I don't mean to imply that it is.  There is hurt and pain in our hearts, but there is joy as well.  She has such a pureness and sweetness about her.  Her smiles continue to right our world.

1 Peter 4:11 "Whoever speaks, is to do so as one who is speaking the utterances of God; whoever serves is to do so as one who is serving by the strength which God supplies; so that in all things God may be glorified through Jesus Christ, to whom belongs the glory and dominion forever and ever.  Amen."

Monday, January 6, 2014

41 years

Today marks 41 years for me, 41 years in this temporary place that can only come close to feeling like "home" when I am with these 5 most dear to me.  There really isn't a "heaven on earth" because here there is hurt and pain and struggle and disappointment and tragedy.  Here there are tears and sadness and anger and bitterness and loneliness. I don't want there to be anything here that I can compare to there. We only do that because we have this need to compare or equate life here on earth with what it will be like in heaven but I know it won't compare.  We want to try and use the limited words we have to describe it or put it into some kind of context that we can understand, but it's just not possible.  Our words fail miserably and I'm good with that.

While we wait expectantly here for that day that we will be there, there is hope and love.  Mixed in with the struggle there is joy and laughter and smiles and good times. Coexisting with the hurt there is healing and happiness and contentment and blessings that abound.  I have grown and changed and questioned and cried and experienced the realness of God more in the past 6 years than I ever did in the 35 years prior.  Through these 4 people God has given me the desire of my mother.  They have changed my body, the way my house looks, my goals and what is important on this journey.  FYI it's not the stuff I used to think was important.  

I am not alone in my joy and in my grief.  God saw fit to bring together two very different individuals in a lifetime commitment to each other and family.  For this man who does not take his vow to me or his commitment to his children lightly, I am grateful. In a "me first" society, he puts us before himself.  He has accepted our daughter's diagnoses in a way that almost makes me jealous.  It's a beautiful thing and I am sadly very far behind him on that. It makes their relationship so strong and allows him the freedom to love without expectation...once again, a beautiful thing that I am learning from the two of them.

"Where 2 or 3 are gathered together"...I am surrounded and supported by family, friends, church and community. These are the folks who are not afraid to laugh and to cry with me.  I lean on them in good times and in bad.  They listen and pray and do and encourage in ways that refresh me, lighten the load and make me laugh.  They get me out of the house and come and sit with me when I can't.  They don't want to be somewhere else when I am crying so hard on the phone that they can't even make out the words I am saying.  They don't stop calling and checking and praying and doing and loving.

At 41 years old, at the beginning of another year when there is so much talk about resolutions, fresh starts and new commitments, I just want to abide.  There is hope in Christ and when I abide in Him I find rest.  I find that what I once thought was in my control has always been in His hands.  What I continuously fought against and tried and wished with all my might to change, He said to trust.  

Abide means to continue in a place.  I want to continue in a place where Christ is welcome and real and active and alive and working...a place where love abounds and Christ abides.

John 15:4, "Abide in Me and I in you.  As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me."

Let's continue in that place...