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Our Birthday Girl

Tuesday, January 28, 2014

Her true birthday!
1st Birthday
2nd Birthday
3rd Birthday
 
Maybe its good I waited a little while to write.  I attempted to start this the night of her actual birthday, but I was just too tired and overwhelmed to get words on the screen.  I tried again yesterday, but I just couldn't find my happy place. So I quit trying to force things and I went to count pj's.  PJ's you may ask...why yes!  In honor of Ellie's 3rd birthday I wanted to do something in her honor.  I wanted to help out someone else, and I wanted it to be something Ellie would approve of!  So I contacted our Jesus loving, Doc McStuffins singing nurse from the PICU about the mission she volunteers with.  They run a shelter, and one of her ideas was pj's and stuffed animals. It was perfect!  Ellie thought princess nightgowns were amazing, and honestly there was nothing sweeter then seeing her twirl in one!  And she adored stuffed animals...although at times she refused to sleep with them because they wouldn't close their eyes! She was a nut!  So the Jammie Jam was created!
 
 
PJ's began to show up in the mail and on the porches of my collection helpers.  Ellie's reach continued on.  At a family gathering this past weekend, we decorated bandanas to put on the stuffed animals, they ended up looking like super hero capes, which I think is completely appropriate! 
 


 
Each bandana had the scripture "Before you were born, I set you apart for a special work. Jer 1:5" My new favorite verse!  I cannot wait for the children and families who visit this shelter to feel the love that went into these!  For them to know that no matter what they are going through, God has already planned it all out, and thought it may seem hard at the moment, He is in control.  At last count there were 320 stuffed animals and 516 pairs of pj's.  Amazing!  Sorting the pj's was hard...so many of them made me think of her, so much makes me think of her, but girly princess pj's really send me down memory lane. 
Since we couldn't do Rapunzel lanterns for her birthday, we found lighted pink balloons. They were perfect, and looked beautiful in the night sky...they were fit for a princess!

 
Yes, we are in our PJ's...it was a pajama party after all!
 
While all this was fun and felt so good to be helping someone else....it doesn't make any of it easier.  The days get harder, and I have to continually ask God to give me strength, even if its just for the next few moments.  Sometimes I only have to ask once a day, sometimes multiple times a day.  Sometimes its for myself, sometimes for Richard.  And the nice part is, God always delivers.  Sometimes I forget to thank him afterwards, but so thankful He doesn't hold it against me.
 
As I look back at her birthdays, I'm reminded of two things....it always snows near her birthday and there are always people around who love her, even when she can't be at the party.  It was so very hard not spending her day physically with her.  I love making fun parties for my kids, I love cute decorations and yummy food.  I love having all my family and friends around who love us.  This was a new version of a birthday party, cute décor, yummy food, but the presents weren't for the birthday girl, they were in her honor.  I don't know if she could see her party, I don't know if she could feel it, but I hope she knows it was a house full of love and a few tears, but all for her.
 
 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance. Ecclesiastes 3:1-4
Prayers, Praise and Pink
~Carly


 
 
 
 
 
 
 

Short but Sweet

Saturday, January 18, 2014


"Dear Ellie,
When you are 3, every day is a new adventure. You are learning and growing each day. You are a beautiful little girl whose life and love have touched everyone you've met. Keep shining, singing, laughing, playing, learning and living. I hope your 3rd birthday is full of magic and surprises."

This letter was written at my baby shower for Ellie. My sister had everyone write letters to her for each birthday. I found them today while working on Ellie's room. Tears immediately filled my eyes and my heart broke, I'm sure you can imagine why, then I couldn't resist reading #3, even though I knew I probably shouldn't...plus it's not her birthday yet.  This letter was written to Ellie, when she wasn't even born yet. No one knew the color of her hair yet, how chubby she would be, or that she would have the best dimple in the world. No one knew the path she would take, except God. And the story behind the person who wrote it, is pretty special too at this moment...but that for a whole other blog. 

As hard as today as been staring at piles of pink stuffed animals and blankets, finding her baby book I never wrote it, and sorting hair bows, remembering exactly what outfit she work with what....this is more proof to me that The Lord has truly laid out our path in life long before we were ever conceived.  And as much as I don't like the feelings of today, anger towards my situation, crazy with the battle of my flesh vs my hope in The Lord, helpless that this will never feel better...I know that He has a plan for all this.  There's a reason for the pain, there's a reason for birthday letters she won't read, there's a reason she had 500,000 stuffed animals (okay so I'm exaggerating a little, but there is a ton), there's a reason SG will only ever know her sister though stories, there's a reason for all the people that have been brought into my life, there's a reason her life was only 1061 days long. And I guess the reason I don't understand all of it at the moment, is God wants to have a good long chat with me when I get to heaven. I can't wait to connect all the dots, although I'm starting to see some of the lines, and they are beautiful.  To just think The Lord orchestrated this whole life just for me, for Ellie, for Noah, for all of us. Makes you feel kinda special.

I miss her with every inch of my being, especially as we prepare to celebrate her birthday without her physically here. It will be another part of our beautiful journey and I am so grateful to be surrounded by the people God has put into my life, that hold me up, even when they don't realize it.


 Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him
Lamentations 3: 22-25

Prayers, Praise and Pink
Carly

There's this hole

Friday, January 10, 2014

I'm pretty sure the hole is somewhere in my chest, probably in my heart. It's not diagnosed by any doctor, but I feel it almost every day. Sometimes I can feel it more than others. I know what put it there, but I'm pretty sure there isn't any way to repair it, at least not before Jesus comes again. Sometimes it feels like I can caulk up the hole, so that I can keep the good feeling in. But sometimes, no matter how hard I try, the hole just opens wide and all the happy and good flows out of it. Some days the hole feels really hollow, like when I breathe my stomach can touch my back because there is nothing in there. Some times the hole just takes my breath away. 
The hole used to be filled up with a little girl. Even though she always wanted to kiss her Daddy instead of me, I love her beyond words. I miss her more than I can explain. Her silly words still ring in my ear, and times I catch myself twirling my own hair or that of a pony. I snuggle her blanket and her monkey daily, hoping maybe a little of that joy will close up some of that hole.
A hole is the best way I can explain how I feel, losing my child. Go figure, I did my research project in grad school on grief....so I know all the stages and know that people all deal differently....so I won't begin to assume that my experience is the same as any one else's, but I can tell you what my experience has been like depending on The Lord. If you had asked me 5 years ago how I thought it would feel to lose a child, I probably would have told you it would be devistating, that I don't know how I would move on.  Even if you had asked me when Ellie was first diagnosed, I probably would have said the same thing. No one really wants to think about what it feels like to have your child die, it brings pain. And I have to tell you, that now I'm still look around and say "this is it" no endless days of sobbing, no inability to eat, no days where I can't get out of bed.....at least not yet.  I can only attribute that to a God who's strength is made perfect in my weakness. I used to think was a pretty tough cookie, I mean don't get me wrong I'm a crier (if you could see the pile of tissues beside me)...but in the chaos, I can stay calm.  I can hold others and offer them comforting words.

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too." 2 Cor 1:3-5

It's not me who is strong it's God gives me that strength. He gives me the strength to smile each day, to enjoy my kids, to look for the joy in things (even if that joy soon drips out of the hole).  And when I don't feel the strength for any of this, I tell Him. I won't say I hear some loud voice from above say "okay Carly, I'll take it from here"....sure wish I did some days...but I know when I tell Him my heart hurts...me mends the hole a little. I don't think that hole will ever go away, not sure how it could. But this hole I have reminds me of Paul's thorn. 

"or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:7-10 

I don't think one day God will just take all the saddness away that was caused by Ellie's death. He won't just erase the hole, as if it never happened.  My hole is a reminder that God will bring me though each and every day.  He brought me through an event most would find tragic, and I'm still smiling. His grace is enough to help me through, I don't need him to get rid if it.  It's like Mater's dents (from Cars 2....sorry to derail from the biblical train...but it works!) Mater didn't want his dent gone because it reminded him of his friend McQueen...sure it didn't look nice, but it was a reminder. My hole is my reminder of my friend Jesus, who has helped me every step of the way.  
Prayers, Praise and Pink
Carly

New Years Thoughts

Wednesday, January 1, 2014

Noah always says "Nana says when you are on a long car ride, if you do something it goes faster"...and then he falls asleep.  On our way to my in law's house today, these thoughts just came rolling through, and sure enough, before I knew it, we were there (its really only an hour ride, but to a 5 year old, that's an eternity!

When I hit the Facebook button about your highlights of 2013, you can guess what most of mine focused around! 2013 was tough and I think that's saying it lightly. 2013 will forever be the year we gained a child and lost a child here on earth. It will be the year I finally broke down and bought a minivan(which I now love). The year I learned I cannot plan out the rest of my life and I must focus  on today. The year we learned what cancer is and what havoc it can wreck and what it can never take away. The year we learned what a long state Tennessee is and that airports aren't so scary. The year I spent more time in a hospital the ever before. The year I learned that St. Jude is a real place, with amazing people, and it really is free. The year I learned just how strong God was going to make me. The year I had to explain things like, tumors, chemo, surgery, hair loss, death, funerals, caskets and cemeteries to a 5 year old. The year that 5 year old carried me through the toughest moment of my life. The year I saw the town of Orange turn pink. The year I attempted to learn that this is my family and I cannot compare it to anyone else's or worry so much what others think (still working on that one!) The year I learned that I must carry out what God has started in my life, I cannot hide from it, run from it, it's His plan, I asked Him to use me and He is, not always in the way I had dreamed, but then again, it's not my plan. The year I saw he true benefit of social media. The year my little girl helped raise over $25,000 for St. Jude. The year my marriage would be put to the test and survive all the tears, heart ache, yelling, distance, frustrations, birth of a child and the death of one.  The year I learned what "peace that passes all understanding" means. 
The year I learned you just have to let some things go, not all arguments have to be won, and I don't always have to be right(that's a hard pill to swallow!)  Grudges are dumb, anger that you hold on to is dumb because all it does is waste time, and time, is way too precious. Any of us could be gone tomorrow, we had warning Ellie was leaving us, we had time to show her just how much we love her and how much God loves her.  Not everyone gets that warning, would the people in your life know how much you care if they were gone tomorrow? Would your children know how much God loves them.  That was something that we started to really focus on with Ellie and Noah once we got the news of Ellie's spread.  I know I never really told them that God loves them more then I do, I think as a parent, we want them to think no one loves them more then we do, but there is one! Nothing was sweeter then hearing Ellie answer "Jesus" when asked who loves her most. I used to ask Ellie if I could keep her forever, hoping some miraculous answer may come from her, she'd just look at me and smile and say "no".  As much as that hurt, I knew it was the truth.
Now with all that we learned in 2013, what do we do with 2014? I think that's where we are stuck now. How do we take what has happened in our lives and use it for good? How do we share our lives, our love and what we have learned and really make something out of it.  I know I've shared our family for almost a year now, you have all experienced our smiles and our tears. I want to do more, I don't know what. God usually opens the door, and leads, I struggle lately because in typical Carly fashion, I'd like him to open that door right now, with a billboard blinking in neon lights, saying "go this way".  Richard talked about relevance, our lives have been too touched, too blessed, too encouraged to not be relevant. We have too much to just stop here.



So I ask for prayers of guidance and wisdom. Prayers of open ears and hearts. I wish I could say each day gets easier, it doesn't. I think with each day the numbness wears off and the pain is more real.  As we do more "normal" things, it become more obvious one of us is missing.  There is still an empty seat in our house, that isn't easy to fill.  I hear her silly words and giggles all the time and I'm grateful for them.  I am enjoying going back and looking through old pictures, remembering the spitfire she was.  I'm so thankful for my phone and the videos and pictures it holds, I know I will be working harder this year to take more pictures of my kids, because on a bad day, it makes all the difference! I can't really say there are bad days, just bad moments, and they pass.  I have no doubt the Lord will carry us through this valley too and we will look back with a smile and praise Him for it!
 
I've used this scripture before, but tonight it seems "relevant"....
We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
It is written: “I believed; therefore I have spoken.” Since we have that same spirit of faith, we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you to himself.  All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Cor 4:8-18
 
Prayers, Praise and Pink
~ Carly
 
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