Thursday, May 31, 2012

One Day

Its amazing how one day can make such a difference in our home.  Sometimes "one" day brings great things.  Sometimes "one" day brings set backs.  Today has been a set back day.  Just yesterday Erik and I were talking about how wonderful Lucy was doing.  She has felt better and has had more stamina than she has in over a year.

Then, around 10:00pm last night, she started screaming of stomach pains.  This went on ALL night.  Neither of us got any sleep and I know she had to be so tired today (because I sure was.)  The stomach pains have been mild today, but she has developed a yucky discharge from her eye.  I'm praying its just a sinus infection.  She did vomit tonight, so that has me on my toes a bit.


I asked Erik today if I would ever get to the point where I didn't find myself consumed with thoughts about Lucy's life and how she has been robbed of so much.  I have come to realize that so many times during the day I feel surges of anger that run through my body like electricity.  I hate it.  I hate feeling the way I do, but I hate more than anything what Lucy's life has become.  Right now, every single day presents a challenge, a struggle.  Bless her heart.  She is so strong.

I am praying for and waiting on the time when God begins to reveal the blessings that are going to come from this trial.  I believe that God has something great in store for her sweet little life.  I just hope that one day I can accept what he has in store for her and stop mourning the child she was.  I fear that my anger will cause me to miss the blessings.

BUT...she's here.  I am grateful.  I say prayers of thanksgiving every single day when I think about her and my other two beautiful children.  I'm also thankful to have an awesome partner in crime with whom I can fight this fight.


Daddy's a little under the weather, so this Momma has a couple of hard days ahead of her.  I'm going to try to get Lucy to the doctor tomorrow and then just try to keep our head above water until Erik is back in the ballgame.  Send a prayer our way.  We are going to need it.

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Tuesday, May 29, 2012

Mission Lake House...Complete!



We're back from the lake and I am so thrilled to report that it was an UN-eventful weekend.  In our world, uneventful is a wonderful thing!  Lucy has talked about this trip for a long time and I was tentative about how it would go.  She never got in the water but I didn't really expect her to.  It's usually pretty cool in late May.  She did, however have a great time riding on the boat, visiting with our friends, spending quality time with the fam and she loved driving the boat!  All in all it was a wonderful weekend.  (the only thing missing was my sweet grandparents who always spend this weekend with us)

I found myself saying "thank you Lord" a million times a day.  We all headed home with very grateful hearts.

I love their answer when asked "what happened to the tow rope?"

A trip to the lake just isn't the same without a visit with the Williams

Boat Captain!!

Lucy has found a new love for Chocolate

A teenager in the making.  Yikes!





My Dad had a mini-me all weekend long.  It was the most precious site.  Here Jack is helping him wash the boat.  


This is Jack's new pose.  He stands and walks with his hands behind his back.  Like a little man for sure.  I like how he is observing Erik and my Dad working and he seems to really be taking it all in.  

The princess with her hat, glasses and battery operated fan!



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Saturday, May 26, 2012

Wish Come True

When Lucy was asked what she wanted for her Make A Wish last year she immediately said "I want to got the lake house". Well, her wish finally came true!

Taking a blog vacation for a couple of days. I'll be back to "work" on Tuesday. We've got a lost summer to make up!

Wednesday, May 23, 2012

A New Look

Look who got glasses today!! Lucy is so proud and I think she looks like a doll. The optometrist seems to think that her eye issues are related to her overall body weakness but only time will tell. So for now she will be wearing them for "up close" work.

I love this girl!! Purple glasses and all.

Monday, May 21, 2012

Feeling Fine

I'm feeling better today.  Guess it's a good thing, because someone forgot to tell Jack that Mommy needed a chill day.




Summer begins for us on Wednesday.  It's Ella's last day of 2nd grade.  I'm anxious about how our days are going to go once we are all three home.  Lucy will continue with tutoring 3 times a week and we have decided to fight insurance for PT and OT extensions to carry her through the summer.  Ella has two camps, they both have a week of VBS, we have two trips with our families planned and a summer of "living" to catch up on.  Ella is doing swim team this year and we are hoping Lucy will adapt to the water soon so that she can begin swimming lessons/ water PT.  I'm buckling my seat belt because I know we are in for a ride!

Oh, and Jack.  Well, he got an "ish"




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Friday, May 18, 2012

Father of the Year

And the award goes to.....(drum roll please)


The father who didn't even hesitate for a second to jump right in and help out with the manicures!

Yes, I am crazy.  Ella is having a sleep over.  I have a horrible sinus infection and feel like poo.  Not matter.  This sleepover has been on the mind of a certain 8 year old for a long time.  And they have been wonderful!  I love these girls.  



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Wednesday, May 16, 2012

Choo Choo


I always dreamed of having a house full of boys.  I just knew it was in my "cards."  I even tried to argue with the ultrasound tech each time she told me I was having a girl.  I really, really wanted boys.  I can now say that I wouldn't have changed things in my life at all.  I love my girls and the things they have taught me.  I have loved experiencing hair bows, princesses, twirly dresses, playing dress up and painting fingernails.  I love shopping for cute clothes, watching them become young ladies and look forward and pray for the relationship with them that I have with my own mom.  I LOVE my girls!

But...I finally have a little boy and absolutely adore him.  It has been as wonderful as I thought it would be.  He wears me out and sometimes makes me want to pull out my hair, but he's awesome!  I know I am in for the ride of my life with him, but I'm looking forward to it.


One of the things that I used to dream about was playing trains with my "boys."  When I was young I would see movies or departments stores that had those suspended train tracks around the ceiling and just swoon.  I'm not sure why I've had a fascination with them all these years.  Maybe its that they just seemed so "boy" to me.
 

Imagine my surprise and utter excitement when Ella discovered Thomas the Train as a toddler.  It was an immediate love and Thomas became a permanent fixture in our home for more than a year or so.  Princesses won out, but I had so much fun during the train stage.  When Lucy came along and was old enough we brought out the train stuff for her, but she never took to it like Ella.


Recently Jack discovered my big Rubbermaid box of trains and tracks and it has been decorating the floor of our play room for the past two weeks.  We wake up playing with "Choo Choo" and go to bed with the same.  We are having a blast and I am thankful to have my boy moments with Jack.


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Tuesday, May 15, 2012

Photo Dump

Mother's Day Bedtime
I just want to say thank you all again for the kind words of support and encouragement.  I feel so very blessed to have so many friends!  And for those of you who like to pray for specific needs, I would love to ask you to pray for Lucy's appetite.  She desperately wants to get rid of her feeding tube.  We ALL do.  So I am praying that God will give her a wonderful appetite in the coming days, weeks and months.  Its not likely that the tube will come out before the end of summer but we would love to see it come out before school starts in August.

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Every now and then I just need to do a photo dump.  Tonight seems to be as good a night as any.  Many of these are from my phone, so the quality is not so great.  However, all these pictures represent a sweet memory that I want to have forever.

Jack simply adores his big sister.  He calls her "Yah Yah."  

I credit all the tutoring she and Mrs. Cissy have been doing. 

Our family is enjoying the time we have with my grandfather.  My girls just love him so much.  This particular night they took turns snuggling with him in his recliner.  

Lucy the safari guide.

Hogan sent me this picture last Friday.  I had taken the girls to the zoo for a school field trip and apparently Hogan and Jack had played very hard all morning long!

Ella before school one day last week.  She is growing up right in front of my eyes.  I am so proud of her.  

I love this picture.  

I have a whole post I want to do of Jack and this face.  Those eyes.  Wow!  He loves to pick up my phone or camera and say "chee."  This is the exact same picture I get every time.  He has the pose down to an art.
Days are hard here at our house.  Nights are sometimes harder.  There are a lot of physical demands placed on all of us.  Lucy has not made as much progress as anyone had hoped or expected physically so we are facing some huge hurdles there.  Insurance will only cover 20 sessions a year and we are on #16.  I am so very grateful to have good insurance, so this is not a cry of ungratefulness.  It is, however, a scream of frustration.  I don't understand how someone in some corporate office can dictate that my child only needs 20 sessions of PT a year.  The sweet angel can hardly walk from one room to the other.  She sure can't climb stairs on her own, get fully dressed alone or even put her shoes on.  I don't get it!  A PT session without insurance will cost us $400 an hour.  Clearly, that's not an option.

We are going to try to work with a couple of friends over the summer in the pool a few times a week.  If this works out it will buy us time until school starts back up in the fall and we can utilize the public school's resources.  I am worried about Lucy's body's ability to handle the chill of the water.  She has a very hard time controlling her body temperature due to the extreme doses of chemo that she received.  I have read about children swimming in wet suits to help with temperature control.  If anyone has had any experience with this I would love to know.  Thanks!


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Sunday, May 13, 2012

My Day


I hope that your Mother's Day was different from mine.  It's not that my day was bad, it was just hard.  I have fully accepted the fact that I am officially in the grieving stage of this whole ordeal.  I am allowing myself to do just that, too.  Some days are better than others.  Some days, like today, I cry a lot.  Before I even got out of bed this morning I woke up worried about Lucy and school.  I continued to cry in the shower as I thought about how she would handle it if she had to repeat Kindergarten, her friends leaving her behind.

Then as I made my way to church and listened to our Sunday School lesson I was moved to tears once more as my Dad spoke about Christ's suffering on the cross. We spoke of the Disciples and if they truly understood what the Last Supper meant.  The had to know that Jesus was going to die, but there was no way they could even begin to fathom the pain and suffering that He was about to endure.  And not to try to draw any comparison to Jesus' death, but I thought about Kristie and Jerry and how they knew their son was going to die but had no idea how hard his death would be.  How he would suffer so.  And that opened the flood gates for about an hour's worth of tears.


As I held Lucy in my arms during church and listened as she sang along to songs she did not know but sang with such a joyful heart my own heart swelled.  How precious is the child who LOVES the Lord.  Ella stood by me and sang with such confidence knowing that as a Christian she will spend eternity in heaven.  I too sang through tears of gratefulness and sorrow.  So very grateful for the blessings in my life and sorrowful for the hurt that we have experienced and witnessed this past year.


After church my entire family gathered at my parents house to celebrate my Grandmother on this special day.  I am so thankful for the godly woman that she is.  She truly is more precious than rubies.  She has served as a cornerstone of faith and integrity for our family since its beginning.  The only thing missing from today was my grandfather.  He is so sick that we all took turns going across the field (street) to visit with him.  Tomorrow he will go to determine if he will receive any more treatment for his cancer.  He is a very sick man but is facing this inevitability with such fierce determination and courage.  All four of this sons were in church today (two coming from Nashville) and it was rather emotional for everyone.  I know all too well how hard it is to look death in the face.  I am torn apart thinking about losing my grandfather, but I know its even harder on the sons as they try to imagine life without their father.


As everyone began to prepare for their travels back to Nashville and the local families went their own ways, we were able to spend a little time with my Mom...the most wonderful, amazing, incredible woman I know.  If my children are half as proud of me one day as I am of her right now then I will consider my life a success.  I love you Mom.  I love you more than you will ever, ever know.  Thank you for teaching me how to be a mother, a wife and a child of God.


 As I curled Ella's hair this morning I told her how proud I was to be her mom.  I told her what an honor it was to have been entrusted with her life.  I tried to explain to her what a joy it was to stay home with my children and how I prayed that someday she would have that opportunity as well.  I have learned a lot this past year about what matters in life and what doesn't.  I know that for me it is painfully clear that my only purpose in life is to 1. Glorify God and 2. Raise my children to love and fear the Lord.  That's it.  Nothing else matters.

I told my friend Amanda tonight that in some strange way I feel very honored and humbled that the Lord would trust me enough to have care over my children.  Lucy is so fragile in her health.  Ella is so fragile emotionally and Jack is just so impressionable at his young age.  And then there's Erik.  He needs me, too.  I told him tonight that I could have never been a mother without him :)  Man!  I love him so much.

What we have been through this past year is enough to tear a family apart.  It happens all the time.  Just ask anyone who has walked the cancer road.  I worry that I am going to do it all wrong.  I worry that my best is not good enough.  But I try not to let the worry get the best of me because I know that God will give me the strength I need to make it minute by minute.  He never promises any more than that.  But He does promise to provide for our every need.

Jehovah-Jireh, God will Provide.  My favorite name for Jesus.  He has never forsaken me.  He has never left me.  I know that He will provide the strength, courage and wisdom I need each and every day to be the mother He has called me to be.  And there is no greater calling on earth.

Mother.

Tonight my heart is full.


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Thursday, May 10, 2012

A Play and A Worm

***youtube link is now working***


I am a beaming Momma today.  Ella's choir group from church presented their Spring musical last night and it was INCREDIBLE!  I was so proud of her and all the kids that worked so hard.  Ella had two speaking parts and a solo.  It was such a great show and the kids seriously performed their little hearts out.  Grades 1-6 were in the play and I couldn't even begin to count how many hours were invested in the night.  I wish I had video to post because I think you all would be amazed at the quality of the event.  A huge shout out to my dear friend Sara who led these children in this huge endeavor.  Not only did the kids learn a great deal about music, but also about making good decisions in life..leaning on God for guidance and direction.

(The pictures quality is pretty bad.  Our church sanctuary is like a black hole for picture taking.  We will be moving to our new church the first weekend in June.  I'm secretly praying for much more lighting!)

The cast in top hats and their "big" suit coats

Lucy wither her favorite friend

Ella as an aerobics instructor.  Everyone said she was a little me in this role.  Barking out orders suited her well :)


Ella as the Royal Furnace Lighter.  Our friend Mackenzie was the fire.  They were getting ready to throw shadrach meshach and abednego into the fire.
Yeah, I'm pretty much a happy mom.  I am so very proud of Ella.  I think we might have found her "thing."

On another note...Jack.  That's all I can say.  Jack.  He is such a mess!  Check out this video of Ella and Jack exploring nature in my kitchen!

http://www.youtube.com/watch?v=fhJZD3hxsqY

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