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Friday, November 21, 2014

Let's be honest

To be honest when your child dies, you just want them to be remembered...by someone besides you.  You crave someone to speak their name.  Someone to share a picture or a story about them. In my case, I look for Princess Strong shirts every where I go. I want someone else to remember "that was one of Ellie's favorite songs" and think of her as they sing it....and then tell me about it. I want to hear about your pink dryer lint that makes you think of Ellie! You just don't want your child to be forgotten. And even though people tell me she's changed their lives, they will never forget her, I still worry.  It's probably a selfish thing...but my daughters gone...this is all I have till heaven!

To be honest when it came time to register our team for the St. Jude walk again, I was excited. We had so much fun last year and we had a ton of support and we raised over $25,000! Why in the world would we not do it again? So months ago I signed us up. We sold shirts even had an auction to raise money for this walk.

To be honest, all along I had this lingering thought in my head....what it no one joins our team, what if no one donates? I mean I knew my family would walk...and that makes at least 40 or 50 people...but what about every one else?  Last year our team was filled with family, strangers and old friends. Our team was filled with love, and of course pink, but our team also had Ellie on it. Last year the amount of money we raised was more than I could have ever dreamed of! Ellie's story went viral, and sadly I guess a little girl with terminal cancer raises a ton of money. She pulled at people's heart strings and our story probably made many people think, "what if that was us?"

To be honest, here we are, the day before the walk and I'm not ready.  I've been wandering around the house all day trying to get everything ready, putting together last minute things, making lists (that I will probably lose before tomorrow morning). Oh and a pedicure (priorities!) 

To be honest, every time my phone or ipad dings with an email, I check it. I have watched this team grow from just a few Blaine's to currently 127 team members. I have watched my $10,000 goal for the team come and go, right now we have passed $13,000! 

To be honest I feel very blessed...and a little embarrassed that I doubted. I really wasn't sure anyone would care to help any more since out girl wasn't here. I wasn't sure they'd want to come walk in the cold with out the driving force behind our team.  But the answer is, people do care. Ellie is the reason for our team and the reason we care so much about St. Jude and childhood cancer, but God is the driving force behind it all.  He put this "want to" in my heart...even when I have doubts.

So to be honest...I was afraid to give our team a big goal because I was afraid we wouldn't reach it (I don't like failure), but I also wanted to push myself and our team. So I took a deep breath and went for $10,000, we did it, even without her here on earth. She's not forgotten. God allowed my family to open peoples' eyes to the needs of others...especially my sweet Noah. When I asked him what he wanted his goal to be, he told me "$1000", very sure of himself.  Of course mommy doubted, but went with it. Now he's past $1400...and so excited by it. I keep having to re-write this line...he has passed $1500 now!

To be honest, tomorrow isn't going to be easy.  Last year I had my little celebrity with me...this year I have her in my heart. But she will also be in the hearts of so many others, and her pink will be shining brightly for everyone to see.

To be honest this isn't all about me, or even Ellie, this is about letting others see God in us. Letting other people see and experience what life can be when you let God in. It's about God using my family to help St. Jude. And to be honest, I probably need that reminder more than anyone.

In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven. Matthew 5:16


If you would like to donate to team Princess Strong, for St. Jude please visit http://fundraising.stjude.org/site/TR/Walk/Walk?pg=team&fr_id=20997&team_id=56688

Thank you all who have made this possible, my heart is full of joy and peace right now...honestly.

Prayers, Praise and Pink,
Carly

Sunday, November 9, 2014

What's Wrong?

A question we seem to ask a lot lately, unfortunately I've been struggling to find the answer to that. I don't really know, I will be fine and happy and snuggling my new baby girl, and then it hits me, and the only way I can describe it is empty. That's probably the last word someone would think I would use to describe life right now. My house is busy, we are constantly feeding, washing, driving, changing diapers and sleeping (well some of us). My house is far from empty, and I like it that way. But my insides, those are a whole other story, those feel empty. I'm sure the crazy hormones don't help, but the hole in my heart these past few days, feels bigger than ever. It's unrepairable too it seems. I keep trying to fill it with something and every time I do, it feels even more empty. I've tried crocheting, jewlery, working on auction stuff, even cleaning (I know...I'm desperate) but nothing seems to fill that void. It's still there taunting me, reminding me, she's gone. She's everywhere in this house, in all the pictures, in her sisters, her clothes that SG wears, but she's no where. The empty seat in the van just screams...missing kid!!!  I just want to hold her, or even just her hand, that would make me happy. The feeling of being lost overwhelms me at times. Not like I don't know where I am lost, just without purpose lost. I sit here just hoping it will come to me, I will figure out what it is I'm supposed to be doing, hoping it will fill up the hole just a little bit, so it won't feel so empty, but so far it hasn't come to me.
Please don't get me wrong, I don't spend my days crying all day. In fact our house is full of new life and new love. Lulah is such a blessing. She's sweet and calm. She likes to snuggle and really isn't all that demanding.  Some nights she sleeps lots and some not so much. So tolerates SG's continual kisses, and attempts to pick her up....no worries, SG has not succesfully picked Lulah up, but you gotta watch her!  In fact, for the "non baby" person I am, I feel super attached to her. There's just all these other crazy jumbled feelings.

There's a lot I've learned about grief and a lot I'm still learning. One important thing I've learned is crying is necessary. There are days when a memory creeps in and I can turn it off because I know it's going to cause too many tears for that moment. And then there are times, I don't turn the memory off, I know it's going to hurt to allow it in, but sometimes the hurt feels good....that sounds so weird. 
This was our last trip to chic fila after what would be her last clinic appointment. This was the first time she threw up, and I knew why. I wanted to be in denial, pretend it didn't happen, but when I look back on this picture, I can see how tired she was, how hard she was trying. This is one of those memories that I can only allow through at certain times, because it hurts, a lot.

There's been lots of tears, and often all I can say to Richard is "I don't know what's wrong". It's closing in on a year since Ellie left us. I can't believe it's been that long.  Who knew the further out it got, the worse it would hurt.  I'm just over it. The reality is, it's not going to end, there's always going to be a hole that hurts.  Everything sparks a memory, songs, movies, sounds, clothes, car rides. Even Noah has been more weepy lately, maybe I'm contagious! 

What is my purpose in telling you all this? A release for me, sharing in case someone else is going through the same roller coaster ride and feels alone, or maybe just a big old self reminder that I will never be able to satisfy my needs with things go this world....that one literally just came to me like a huge light bulb! (That's why I blog!) I'm never going to fill my Ellie hole with crocheted hats or a clean house. The pain will never be eased by a shopping trip, even a Target one! Then pain will be eased through prayer, I will find direction through asking for it. This is just another valley I'm traveling through, I'm sure there will be more, but also many more mountains! 

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 Corinthians 4:16-18 NIV)

Prayers, Praise and Pink
Carly


Tuesday, October 21, 2014

Princess #3 has arrived

Our newest princess arrived yesterday, October 20th, 2014. She made her entrance at 8:13am weighing in at 7lbs 11oz and 20.5 inches long. She came out a hollering but quickly calmed down once she came to snuggling with me! We have no idea who she looks like, but she's beautiful! 

Her name is Lulah Marie. Many have asked where that came from, so I wanted to take a minute to share with you the sweet way her name came to be. Ellie had quite a few names, not legal ones, just ones we called her.  Along the way she aqurired a few names with Lou in it....Ellie Lou, LuLu, Lou and LullaBelle. When we were trying to find a name for this baby, I really wanted to some how tie Ellie into her name, but not shadow this baby in Ellie. We tossed around a few princess names, but nothing felt right. Once Richard said "I'm just gonna call her Lou" I knew what direction I wanted to head. This name is definetly not a "normal" name for us, and honestly part of me was pretty anxious and like typical Carly, worried what others would think. But the longer I sat with it, the more I liked it. And as Noah walked around calling my belly Lulu, I knew I had to set aside my worries.  I love that she will have a beautiful story to tell when asked about her name.

We are all doing well. Noah is once again in love with another sister. He has ohhhed and ahhhhed over her hair and tiny feet. SG isn't really all that concerned with her, and probably won't be until we bring her home, and she stays there! 

I'd love to thank you all for praying for us, these days have been pretty smooth and there hasn't been an overwhelming emotional melt down. Lulah loves to snuggle with her Daddy, and even her Mommy and that makes everything okay!



Ecclesiastes 11:5
Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother’s womb, so you cannot understand the activity of God, who does all things. 

Prayers, Praise and Pink,
Carly

Sunday, October 19, 2014

Plans

Last morning of sleeping in for a while. Tomorrow we get up at the crack of dawn to go have another baby. Wow, that just sounds crazy.  I love the look on people's faces when they ask me "is this your first?" And I politely say, no, my 4th. And then they always ask, how old are they? This is where I still stumble. I haven't found that answer I feel comfortable with.

 At the age of 33, I have to giggle, this wasn't the life I had envisioned in my plan for myself some 10 years ago. I only wanted two children, and I told Richard I wasn't having them until he was out of retail because it's too hard to raise children and work retail. I was also going to have them far enough apart that one would be in school before the next one so I wouldn't have to pay daycare for two.  Again, this was all my plan. I also didn't have a relationship with The Lord then, so I really felt like I had control over this all.  So as we approach baby #4, I'm pretty thankful it is God's plan and not my own. If we'd stopped at two, SG wouldn't be here, and as more and more of her personality shines through (although beyond onry at times) I couldn't imagine our world without her. If I had waited till Richard was out of retail, we still wouldn't have kids, we wouldn't have the amazing insurance we have and we wouldn't have had the support of such an a great company through out the past year.

 And as much as this all makes me happy, I'm still very anxious for tomorrow. We are once again facing a life event without us all here. Usually the day before one of these I get all crazy and snappy...at least I'm starting to recognize it now and I can try to better prepare myself for it. When SG was born, I was preparred to do this alone, with Richard and Ellie in Memphis, but then God made this beautiful plan and allowed Preacher to be visiting them and the doctors to let them come come for a few days. I was blessed with the midnight surprise of my life.  That's not going to happen this time, unless Jesus himself shows up. Nobody can drive up to heaven and pick her up, even if only for an hour. I love seeing my new baby's face for the first time, I love hearing that little scream.  But what I have loved just as much, these past two babies, is watching my other children meet their new sibling for the first time. The grin they get from ear to ear just makes my heart soar. I don't get to see that from all of them this time. You just don't realize how blessed your are in that moment. I'm sure I quickly took it for granted and got stressed out about something. Now as this baby arrives, I d give anything for the stress of having 3 children come to the hospital to meet their sister. Or the problem of trying to fit 4 children in our 3 bedroom house. Problems I never dreampt I would have. 
So I won't even try to pretend I know what the next few weeks has in store for us. Going into this with an open mind, but highly aware how emotional this child's entry to the world will be.  I pray that God will help us raise her with a love of The Lord and the knowledge of her older sister that she never met, but whom she will partially be named after....no we haven't shared her name yet. Totally unlike us (well unlike me) to be this last minute in everything, but this time is so different.
So as many times before, I'm asking our friends to cover us in prayer. That today we can be filled with peace, as anixety starts to grow. Prayers for our family who will indeed be hurting tomorrow. Prayers that we can see the miracle God has given us, and possibly feel some princess strength from our girl.  Thank you in advance for your love and prayers.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 

Prayers, Praise, and Pink
Carly

Friday, October 3, 2014

Back to St.Jude

On a plane, headed to Memphis, by way of Ohio...go figure. My anxiety has lowered, we got to the airport on time, they let me on the plane, and we are in the air! The flight attendant has already been super nice to Noah, and all is well. 

Trying not to put too much thought into what we are headed to do. I know this weekend won't be to easy, I'm aware of all the memories attached to what we are doing. In fact the gate at the airport, right across from ours was headed to Orlando and I saw little girls with Princess back packs boarding. 

Noah is just as excited this time and really wants to open up that tray table, he even brought work books with him since he's not at school today and he knew they were tables he could work on....I love him!

Thoughts going into this weekend....seeing St. Jude for the first time without her by my side. Will they remember us? Will it look the same? Will the same Starbucks girl still work there?  Will I cry? If I do, will I be able to control it? Will the bald heads everywhere tug at my heart? How will Noah do? I bet it will be hot, it's always hot there! Did I bring enough tissues? 

The past few weeks have been filled with many ups and downs. Many days of just missing her immensely but joy from others who share just what she means to them. 

One flight down, nice to meet you Ohio. Now to Memphis. I know that airport too well, I can feel anxiety building now, and it's not just the wiggle worm baby hanging out in my belly.  Noah is still chatting about clouds and when the lady is going to bring the snacks around, even though he has been eating the same breakfast sand which for the past 30 minutes. I'm trying to concentrate on him, I'm failing. 

When we left St. Jude almost a year ago, it didn't feel right. Not because we were now taking a terminally ill child home, but our time there just didn't feel complete, there was something left undone, call it closure if you want, I'm not sure. When a place becomes your life it's hard to just walk away. They didn't make us go, it was voluntary, but it still felt undone. We said good bye to those closest to us...a big part of my heart stayed at that hospital, in fact Ellie's name is on those walls. I knew I had to go back. Many people have thought I was crazy for trying to make this trip being pregnant, but I knew that if God didn't want me to take this trip, doors would have closed, things wouldn't have worked out.  I really need to remember this now. God wouldn't have let this work out if he wasn't going to be by me the entire time. Instead of worrying about my reactions, I need to trust that he's only going to allow what he deems good to happen.

Day 1 is done, we are whopped, but my mind is still going fast! 

Coming into Memphis brought tears. Memphis airport, more tears. Driving up to the hospital, felt like I couldn't breathe. Circled the parking lot 10 times trying to find a spot, helped break the string of sad thoughts! We park, we get out, we cry in the middle of the parking lot, Noah included. Oh wow, this is going to be tough. We pray. I later learned that others were praying for us all day, and I truly believe you interceded for us. We made it through the rest of the day with smiles and memories. One of my favorite moments today was sitting outside amongst the flowers. Ellie always ticked the flowers here, and she loved this one little maze like area with flowers and these big balls she could climb on. We went to take a "break" today (Noah was a hot mess for an hour or so, but he had totally earned the right to be one!) Before I could even realize what was going one, Noah was running around in that make like flower place, with butterflies just flying all around him. He started chasing them trying to catch one, and every time he'd turn around more flew. It was beautiful. I sat to put my feet up and enjoy this moment, and one little but fly landed near me, hung out for a few, then off it went. 
 


We then braved the inside of the hospital. Where we spent more than half the last year of our lives. Not sure I truely soaked it in, I think I was trying really hard not to look at anything too long, because almost every corner of that hospital holds some type of memory, from the reception desk to the waiting room outside of MRI.  We found her brick quickly, thanks to some tips from a friend! There her name is forever etched in the walls of St. Jude, pretty awesome feeling!

I have wonderful memories of that Starbucks too...after long nights of no sleep! So of course I visited, and yes the same girl works there.

Once we got back to our area, Noah quickly realized there was a table of goodies to color and make things, and friends there to play with, I saw him crawled up in a lap and he was happy, probably a much needed break from mommy and daddy! As nurses and doctors and receptionists started to file in, I wondered would they remember her, we weren't around for that long. But they did, they hugged and shared stories of stickers and pink monkey. Some even still have their Ellie stickers!  
It was a sad reason to see one another again, but I'm so glad we did this, and we saw them again. That felt better, like the way it should be. 

To the hotel, feet up for an hour, then off to see our Habitat for Hope friends and go find out how much these high schools raised this time! I had heard just how much Ellie touched these high school students lives. I had heard they were raising this money in her memory, but it didn't hit me until tonight when we got there and saw kids in tiaras. The pink pom poms took me a second to get over, since last year Ellie tried to steal a pair of those, and I forever have that image of her loving the cheer leaders! They announced the total at half time, and these high schoolers raised over $13,000 for Habitat for Hope, in memory of Ellie, oh if you could have seen Noah's face light up when the aid her name....he quickly went back to telling me how cold he was (oh yeah, it's not hot in Memphis this weekend, I was wrong!).  Ellie touched their lives too, students she never met, or only briefly met last year, have learned what is most important in life, living for today and helping others. The pure joy in their faces when they heard how much they raised was awesome!

Today I end the day proud. Proud of us for deciding to be brave and make this trip.  Proud that we've let tears flow freely. Proud that people recognize my daughters smile and remember her monkey. Proud that we have raised a son who loves to talk about his sister. Proud to belong to the St. Jude and the Habitat for Hope family. Proud that I have honestly shared this journey with so many, and because of that, lives are touched. Proud of my Blaine boys for being so strong today (and for how quickly they fell asleep!) 

Thank you all who have prayed for us this weekend. God used you to give us strength today. Keep praying for tomorrow!



St. Jude without you Ellie Lou, is definetly not the same, you my dear were such a light! But thanks to God sending his son, we have the promise of eternal life, we have Hope!

Prayers, Praise and Pink (and oh there was a crazy pink sky here tonight!)
Carly....and my sleepy boys!

Wednesday, September 17, 2014

Who Cares?

I sometimes wonder if people get tired of seeing my continual post about our fundraising efforts.  So I thought I would share why I care so much about these upcoming walks and all the fundraisers we are doing?

Because my child was diagnosed at the age of 2 with a brain tumor that has almost no chance of survival for children under the age of 2. 
Ellie, day she was diagnosed, February 18th, 2013


Because I know how it feels to wonder whether or not my child will live.

Because I've said the prayer where I begged God to heal her because the doctors couldn't.

Because I've spent hours googling my child's cancer hoping and praying to read something encouraging.

Because I've been in a hospital where children fight every day for just one more day.

Because I will never forgot the day the little girl across the hall from us passed away and I watched the pain on her family's face from inside my daughter's hospital room.

Because I've witnessed first hand the effects of these medicines. I've watched children get sick while desperately trying to eat something so they don't have to have their feeding tube connected.

Because I've been told "your daughter has 4 weeks to live."

Because I watched my family try to be strong while they were scared to death.

Because the scene of the last night of my daughter's life is permanently stuck in my brain and there are days I would love to turn it off.

Because cancer isn't just about cute kids with bald heads, 7 children loose their life everyday due to this disease!

Because before Ellie got cancer I was completely unaware. I knew nothing about pediatric cancer or the prevalence.

Because today 46 children will be diagnosed with cancer, and one could easily be another one of mine, my family's or my friends.

Because now I know and I want to be a part of the cure, not just hope someone else does. 

I know these aren't the pretty facts of cancer or our experience with it, but these are the realities. 

Last picture I have of Ellie on my phone, December 18th, 2013.  You can see the cancer has taken over, you can see how tired she is, but how much she still wanted to paint with Mrs. Kelly. 

There's my reasons for caring and why this is so important to me. If you'd like to join us in our efforts, below are some important links.

CureSearch Walk Team

St. Jude Walk Team
http://walk.stjude.org/princessstrong2014

Current ThirtyOne Fundraiser for CureSearch

For more fundraising updates, visit Team Princess Strong's Facebook page
https://www.facebook.com/groups/teamprincessstrong

Prayers, Praise and Pink
Carly 









Friday, September 12, 2014

Reality

Tomorrow we walk again....well don't think I will be, this 34 week prego lady is trying to keep this baby in! But this walk is different, and honestly I'm struggling. September is hard. If you weren't already aware, it's Childhood Cancer Awareness month, and I'm surrounded by things gold and yellow, the color of childhood cancer. And while it's nice to see so many people tuning in and supporting, it's heart breaking all the same.  Heartbreaking because in a few weeks the gold will be gone, but there still won't be a cure, my child will still be gone, the month will change and so will everyone's focus and the reality of childhood cancer for many people will turn off until next September. But not for my family. 
The reality is that 46 children everyday will be diagnosed with some form of cancer and 7 children will die from cancer. The reality is that these walks we do just aren't for fun. They mean something to me, and to all those whose lives have been forever altered due to this disease. When all these people join my team, people I don't even personally know, my heart is encouraged that we are brining awareness to others lives, we are supporting those still battling, and we are honoring those whose lives we're taken.

Tomorrow's walk means so much to me for so many different reasons, and is probably also the main reason for my emotions being all over the place tonight. This race is being organized by someone who fell into my life when her own cancer journey started. After making her a hat to cover her beautiful bald head, who knew what was to come of our relationship...God sure did. As she says, little drops of honey along the way.  Tomorrow, there will be pink fire trucks with pink firemen. The same pink trucks that pulled into my driveway a year ago, and made Ellie's feet dance. Tomorrow people will wear her name across their shirts, and read a beautiful bible verse about letting God's light shine through you. Tomorrow we will wear tiaras in her honor and get really messy.  Tomorrow lots of money (I'm hoping) will be raised for two charities that support pediatric cancer.  One of those charities is starting a fund, in honor of her. Tomorrow Ellie's Elves will make a big impact on the community around it.  Tomorrow toys will be donated to create toy closets in her name, but tomorrow, she won't be there. Tomorrow my heart will swell with pride, but the hole will be big.  



Richard often makes these pictures. I saw where someone shared it on Facebook, and someone else commented, "if he can heal cancer, why doesn't he?" When I read this I can easily see why someone would ask that. I've asked it myself, multiple times. But He does heal cancer, a lot, just not always the ones we want Him to. I don't know how He picks and chooses, but that's not really for me to know at the moment. I do know that because I am saved, I can one day be Christ like and I can know the answers to all my "whys", not that I'm sure that I will even care anymore once I get to heaven.  I truly feel that because Jesus lives in my heart, he gives me His eyes at times to see what he's doing. He let me see the lives we have touched.  He encourages me with the words of others.  He didn't heal here on this earth, but he gave her the gift of everlasting life, which is way better than any other gift, and as her mother you can be sure that I will be there with her, that's my reality.  
God used my family to be a reality to others, he made people pay attention to cancer, through her.  He knew that once this touched my life, I would forever be changed. I will always talk about my daughter, the struggles that she and so many other children face dealing with an incurable disease. The choices we had to make, and the beautiful things that happened. He choose us because we would make this reality known to many, we would share the amazing things God can do and will do, once you make the choice to let him in your life. No, he didn't heal my daughter and the pain is still raw, but he made sure that I would get to spend eternity with her. When you really, really think about it, He gave us something better than a cure on earth, he gave us forever. And yes I have to suffer now, and yes I have to cry and long to squeeze her, but I have faith that it is all going to be worth it.
I remember when we first started going to church again, I heard my preacher say he would rather God take his new baby granddaughter now, then to let her live her life not accepting The Lord in her heart and going to hell. I was shocked....why would any one want God to take their baby or grandbaby. I can't say I understood what he was saying until my own daughter was taken from this earth. My daughter was given a place in heaven because of her age, I don't have to wonder if she will be there or hope that she made that choice, or worry about it. I get it now. 

I can't give the perfect answer as to why he doesn't heal cancer the way we think he should. All I can say is he heals it according to his will.

Three times I pleaded with the Lord about this [thorn], that it should leave me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’” 2 Corinthians 12:8–9

He can heal cancer. 


 I warned you my emotions were all over tonight. I feel pride and nerves (which is nothing new to me), excitement and a heavy burden. Pride for my family and all we have done. Nerves because my name is Carly and I always get nervous. Excitement to do something fun with a lot of wonderful people tomorrow. And a heavy burden to remind you that life isn't always going to be what you want it to be. Things aren't always going to go your ways even close to it, but God has an amazing gift to give you that guarantees you will not suffer or feel pain any longer. God has the gift of eternal life, but you have to accept the gift. Will you?

Prayers, Praise and Pink
Carly