Saturday, October 31, 2009

Happy Halloween

My Star Wars junkies, they have all been taken in by the dark side this year.

Count Dooku...

Darth Vader...

Jenga Fett...

I refuse to let my little Sophie be taken in by the dark side though. She was the sunshine of our day as this sweet little flower.

The whole group getting ready to go trick or treating, some of the cousins got to go with us this year.

Thank you, weather for finally cooperating, it was a super fun day!

Pictures from Sophie Kate's party will be coming soon to a blog near you, I am still trying to sort through them all, but I promise it will be so worth the wait.

Thursday, October 29, 2009

Sophie Kate's Life Verse

I would like to share with y'all how we came about choosing Zephaniah 3:17 as Sophie Kate's life verse. It came to us while SK was still in the NICU, she spent 25 days there. During the course of such an emotional time you really get to know the nurses and doctors that are taking care of your baby, it is a very close environment, no one is ever very far from your baby...there is a comfort in that.

One of Sophie Kate's nurses had left a note for us, in it she expressed our shared love for Christ and for Sophie. She told us that she had a CD in her car of Bible verses set to music and that when she heard Zephaniah 3:17 that morning on her way to work, it brought our sweet baby to her mind and she wanted to share that verse with us. "The Lord your God is with you, He is mighty to save. He will take great delight in you, He will quiet you with His love, He will rejoice over you with singing."

There really wasn't much left to say after reading those words, Chad and I exchanged a tearful glance and I don't even know which one of us said it first, "That's the one." That one verse speaks so much to us and to our little girl. The emotions that come over you after receiving a tragic diagnosis are pretty much indescribable. The pain is unthinkable but you also feel a numbness like all you can do some moments is just go through the motions.

As far as my faith goes, I feel like I have been through it all...doubt, anger, questioning (lots of questioning), complete submission, utter awe. You name it, I think I have felt it at some point over the past two years. For me it came down an issue of believing God. Oh I believed in Him...I still believed that Jesus was the Son of God and that He died on the cross for my sins and the sins of the world, I believed that He rose from the dead 3 days later, I believed that He conquered death and saved me and that I would spend eternity with Him in Heaven...I believed all those things still...but I didn't believe Him.

I didn't believe His words, I didn't believe that He wouldn't ever leave me or forsake me. In my mind I had been forsaken, so to read the words of Zephaniah 3:17 in light of the diagnosis we had just received and were still trying to process was like living water to the dying. "The Lord your God IS with you" and He is mighty.

Looking back on it now for me, it was easier to be upbeat, positive, prayerful and faithful those first 4 days of her life. Yes, we were told that more than likely she still wouldn't live and yes we were expecting a phone call to my room at any moment that we needed to come down to the NICU right then, we were told to be prepared for that...but each of those four days before I was discharged, each minute, each hour, each day she hung on. Each minute, each hour, each day she got just a teeny tiny bit better.

It was that fourth day, the day that I was discharged that we received the news of her extensive brain damage, picking up after that devastation is what I still struggle with everyday. I remember sitting in the family waiting room right before we were taken in to meet with Sophie's neurologist...I remember praying and saying to God and to myself "There is nothing that man can lay before us that is bigger than our God, there is nothing that man can throw at us that our God cannot handle" and then I left that hospital and my baby girl that night along with all the truths that I had held so tightly about my Savior my entire life.

I believed in Him, but I didn't believe Him anymore. I didn't believe that He could handle this b/c He hadn't handled it the way I wanted Him to. In my mind He had abandoned us and forsaken us b/c He had not given us our "perfect" baby girl. I go back to Zephaniah 3:17..."He will take great delight in you." Sophie's Creator takes great delight in her, wow I need to pause and just let that one marinate.

"He will quiet you with His love." I think of all the tears that have been shed, are being shed and will be shed in this house, both hers and ours. There was a period of time after we brought Sophie Kate home from the NICU that all she did was cry. Praise God that season is over, He quieted her with His love. He is still doing that for me in such a loving and gentle way.

"He will rejoice over you with singing." Rejoicing is the last thing I feel like doing most days and I really hate to admit that, but if I am being truthful, it is the bottom line truth. I should be rejoicing that she is even here with us and that we get to care for her like we do, so many families have lost their little ones. I love her smiles and her sweet baby breath. I rejoice over her good health of late and the days when we have less crying. But God doesn't pick and choose what He rejoices over like us humans do, He rejoices over the total package, she's absolutely perfect to Him. That's where I beat myself up b/c I just don't see her that way, I know, it's awful isn't it? I'm her mother for crying out loud!

There is still so much to work through and so much work to be done. We will continue to pray this verse over our family and over our sweet girl and will continue to be present in each day upheld and under girded with strength from God and God alone.

We are having one of SK's birthday parties on Halloween this year (her actual birthday is Nov. 3), we will be surrounded by family, it will be a day of thankfulness and celebration. Thank you for checking in on us and praying us through these upcoming days.

Sunday, October 25, 2009

The Changing of the Seasons

I have always loved this time of year. I love the cooler temperatures, the leaves changing and all the beautiful colors and smells that go along with Fall. It is a difficult time of year now though. My children are two years older, they have grown, we have changed, so much is so different.

They will not be in this season of life forever. One day they will not want to dress up for Halloween, but right now everyone is still very much into it and I love that. I wish I could just enjoy it for what it is. I am missing it b/c the pain of this time of year is so overwhelming for me. Y'all all know that Halloween signals the beginning of the end for me. I put on a brave smile for the boys, but my heart is breaking on the inside.

It signals the end of our "normal" carefree life with absolutely NO worries, oh don't get me wrong I thought I had problems then but I know now that I didn't. It signals the end of dreams, dreams I had for my one and only daughter, dreams that I had for our family that I have now had to completely let go of.

The grief is still so raw and so real. My breath is still taken away by the pain and hurt. I try not to let my mind go to the places of what could I have done differently or earlier to have had a different outcome...all those "what ifs" that invade my thinking, it is so dangerous for me to go down that isn't going to change anything now.

This time two years ago there was so much hope and promise and excitement which has now been replaced by so much sadness, unbelievable pain and lots of changes. I want to enjoy these times w/my boys, I want them to be happy and have fun in everything they do. I don't know any other way to do that besides pretending my way through it and saving my tears for my time with God.

If I can just get through the next 2 weeks around here, everything can settle back down and go back to our normal. I have to tell you though...I feel so guilty for trying not to think about it or wishing these next few weeks away b/c I feel like I am totally overlooking and forgetting the miracle God performed on that day. She should not be here, we have been told that on more that one occasion...but she is. She is here for us to love on and for us to take care of for as long and the Lord grants us. Her birthday is all kinds of emotions all at once.

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:16.

Thursday, October 22, 2009

Chattanooga Day 2

Day two of our Chattanooga trip was spent at the Children's Museum which was loads of fun with tons of stuff to do.

The rooftop play area...

Of all the special display areas they had while we were there, wouldn't you know that one of them was learning about kids with disabilities. Y'all I am not kidding it was called "Just like you, Just like me" and the children got to live in a house, go to school and play just like a special needs child would.

They had switch toys there just like we have at our house, SK cannot believe what she is seeing...

Doesn't she look totally thrilled...

She just thought she was going to be getting out of therapy this weekend...

Daddy and SK reading "Brown Bear" with the help of a switch so that SK can do it for herself...

Jacob putting a puzzle together totally on feel alone, those goggles made him visually impaired.

Busy, busy boys...

Sophie Kate's daddy is the best, he took her to play in the water area...I'm not sure but I think she liked it. What do you think?

SK got in on the swimming Saturday night...

I just thought she looked so darling Sunday morning as we were getting ready to leave...

SK was so good on our trip. She does not feel as though she needs to be our go along and get along girl when we are at home, but whenever we are on trips she feels the need to step it up a bit and put her best most smiley face forward and for that I am so thankful. She was an angel she went anywhere and everywhere just as happy as she could be.

This was the Grey man on the way home...

I so wanted to be him.

We had a great time. If you are one of the last people (like us) who haven't discovered the Chattanooga trip, I highly recommend it, so much fun!!

Tuesday, October 20, 2009

Chattanooga Day 1

We spent our fall break in Chattanooga. I feel like we are the last people in the area who haven't been to Chattanooga and everyone kept telling us how much fun it was there...well, you were all right, we had a ball.

We did the Tennessee Aquarium and IMAX thing on Friday...

Cooper and Jacob fed the stingrays...

Oh yes, we did have Miss Sassy with us, what a sweetheart she was on this trip.

And then we had to do some swimming at the indoor pool at the hotel...of course that was the highlight of the trip for the kids. Oh no not the awesome aquarium or the 3D IMAX movie and certainly not the nonstop entertaining Children's museum...nope the indoor pool. I guess there is some fun to be had when you get to go swimming when it is in the 40's outside.

Day 1 complete and we were completely exhausted, Day 2 to follow soon.

Sunday, October 18, 2009

Just a Teaser

Just a quick update until I have time to get a real post in on our fall break weekend in Chattanooga.

We had loads of fun doing this...

and this...

and seeing these...

doing a little bit of this...

and now we are all wanting to do a lot of this...

and I am not talking about the fella playing the video games. I am trying to tackle laundry and regroup for tomorrow morning, more to come later.

Wednesday, October 14, 2009

Girl Hair

I am always looking for new ways to do Sophie Kate's hair. It's a bit of a challenge b/c she can't sit up on her own so she is either on her back or she is leaning against the back of her head quite a a traditional pony tail is out of the question. The style also needs to be held tight enough so that it won't come completely undone as she lays on her back and turns her head from side to side. I wasn't joking, it's a pretty tall order. Even when I put her hair in pigtails I end up redoing it 3-4 times throughout the day b/c it just can't stand up to the wear and tear. Now you know why SK's hair is always on top of her head, b/c when I do it like that it doesn't get messed up during the course of an SK day.

A few weeks ago my mom was here helping me out with things after Jacob had his ear surgery and this is what we did one morning to SK's hair straight out of the bath tub, wet and all...

I think she likes it...

It stayed put nicely for about half the day but it was a jumbled mess by the time daddy came home from work. The problem with this particular style is that mama can't do it by herself, I need an extra set of as much as I loved it on her, there will only be random sightings of this one.

Alright, switching gears...I know y'all have been missing pictures of the G man in his underwear. Someone please tell me what 3 year old knows how to work a feeding pump...when SK's pump starts beeping b/c her feeding is finished Grey is all over it.

Yay, fall break has officially started! Two days off school to do whatever we want not including getting up early, bus stops or homework. It has been rainy, cloudy and gloomy here for over two weeks with very little sunshine to speak of. It has been so dark in the mornings that it looks and feels like two o'clock in the morning when I am trying to get the boys up for school at 6:30. Well, all I have to say is that the sun better not be blazing into my boy's room tomorrow morning, I want to see the sun just as much as anyone else around here, but I'd like to wait until 9:00 to do so, can I get an Amen!?!

Friday, October 9, 2009

SK's Stuff

Continuing with the Sophie Kate's room theme, I am now going to show y'all some of the things that are in and around SK's room.

This china hutch that is now a curio cabinet holds lots of sweet things...Sophie Kate's oh so tiny and oh so sweet first pair of shoes, some picture albums from SK's first year of life, some of the things SK made this year at Vacation Bible School and some stuffed animals.

Sophie Kate's jewelry box holds her necklace and bracelet as well as some well meaning plastic rings that Cooper and Jacob have brought her, such sweet brothers.

Yuck, some of SK's medical supplies; in finding out about SK you will quickly discover that these are a part of her everyday life, but they do seem outta place in such a girlie room.

Back to the cute stuff...awww...SK's shoes hanging out on her changing table.

This little praying bear has been our traveling buddy since SK was born. This bear, along with the painting of her life verse in the previous post and a picture of her 3 brothers has made every trip with us to Children's Hospital. There were always certain things I would go and grab without hesitation anytime we were admitted and those along with her boppy pillow were always a part of the grab.

Sophie Kate's feeding supplies...

her nebulizer...

This is my dish draining rack, everything you see here is used for SK...

These are the meds that SK receives everyday and some of them multiple times a day.

It doesn't seem right to me that those things should coexist with these things...

or these things...

Medical supplies and sweet pastel colored baby bedding do not go together, feeding tubes and frilly dresses go together about as well as oil and water, nebulizers and suction machines have no place with polka dot shoes and jewelry boxes but they do when you are talking about my girl.

It breaks my heart that these necessary evils have taken the place of my baby girl's baby dolls and tea sets. I hate that an IV pole, a feeding tube and a feeding pump have taken the place of what should have been my little girl's stuffed animals and snugglies at her bedside. I hate that these things have made themselves at home here, it is only b/c God has made Himself at home here that we are able to take it all in. He prepares our heart to be able to handle it, He gives us the strength to bear it each and everyday.

All of these things coexist for the most part peacefully here because without them we wouldn't have this...

and we are absolutely crazy about her.

Love you guys, thanks for loving our girl.