This has not been the easiest week. I have no idea why, there were no special days this week that triggered memories, no birthdays, no holidays, but for some reason emotions were all over, especially in me. 

The after school/evening times seem to be the hardest for me. I come home from work tired and drained and here are these two sweet kiddos who both want all my love and attention, (SG really just wants to eat, as she brings me any food she can reach and says. "Ease?"....translation, please?). There's homework to be done and dinner to make. I'm sure any mom can relate to these moments because I just don't have enough hands for everything they need. All my children have gone through this stage where they hit the 5:00 hour and they turn into little monsters....yes even the cutest of my children have a whole other side come 5!  SG wants to be held, be fed, pull every cabinet open, go in any room with an open door, unpack my purse, hit her brother....you name it, she's into it.  You can't fault her, she's walking everywhere now and exploring her world, she's also really good at testing every boundary she can dream off (she is so her sister, just at a much younger age!) 

(Standing up in her chair...she just learned this little trick...the chair was eventually taken away, because she won't sit in it!)

And then there's Noah. He loves to talk. Ellie was his best friend, they talked and played all the time, even if they were fighting, they were still playing. Now he has no one except me, since SG isn't always the best playmate!  When the crazy 5:00 hour hits, I miss her so much because the fact that she's not here is so obvious. Noah is almost 6, SG just hit 14 months....there's this large age gap that some chubby cheeks used to fill. 

Despite the toughness of this week for me, God has made sure that Richard could be the strong one this week. Finally after many tears last weekend he finally told me to get in the car, we were going to the cemetary.  I've struggled with the cemetary honestly. I never know what to do there. I know that only her body is there, and I kept telling myself that I don't need to go there to feel close to her.  Almost like I had convinced myself that I was weak if I needed to go there, I know it sounds crazy, but that's the only way I can think to describe it. So we loaded up and headed out.  As I sat down beside her plot and Richard took the kids, I was overwhelmed with sadness. It seems with each passing month I miss her more and more. I had this overwhelming urge to lay down on the ground beside her. Of course I couldn't get over my grown up pride so I didn't. Noah finally joined me, and took the flower I brought with me and asked which end Ellie's head was at, so that he could put it there like it was in her hair. He made me smile. As we were about to leave, Noah laid right down next to her...wish I had his bravery sometimes! He was sad and expressed it much better than I had been this past week. 

I know this walk is going to get harder with the upcoming birthdays, more holidays, and our new addition. I know there will be more enjoyment. There will be more smiles and more heartache. I'm just so grateful that when I'm falling apart, The Lord has blessed me with two amazing boys that know exactly what I need when I need it. 

Last weekend we attended part of the Relay for Life event in the county where I work. It was the first time I'd ever participated as someone personally effected by cancer. I really enjoyed myself, and once it got dark and the luminaries were lit, the tears flowed freely, but my heart was filled. We found numerous bags around the track done for Ellie. Noah loved them and would quickly drop to the ground to read them.

 And like the amazing little boy he is, he turned around and wrapped one skinny little arm around me and one around Richard, for a good ol family hug! (Ok now that I write this I realized where a lot of the emotions from this past week came from!)

Lots of prayers this week for those who have lost a loved one. Many of them have weighed heavy on my heart this week. Would you join in me in praying that they would feel the peace that only God can give?

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” John 16:33

Prayers, Praise and Pink

Carly

Happy DC, Birth, Mother's Day

I find it funny that like 5 hours ago I knew exactly what I wanted to write about...had the plan all in my head, and then all of a sudden its 8:20 at night, and all my brain cells are fried...but isn't that what being a mom is all about.  Being so caught up in the craziness of the day that you just kinda forget everything else.  And very appropriately this has happened on mother's day!...now its 3 days later and this blog still hasn't been finished, but hey that's life, when your prego, have a teenaged 13 month old, an almost 6 year old, a busy hubby and testing has started at work!!

This past week has been trying, emotional, and sweet all wrapped up in 7 days (probably like 11 days now)! It really wasn't as rough as I anticipated it to be....actually I didn't anticipate much from this week, maybe I mean to say it wasn't as rough as people might assume it would be.  No idea if that makes sense or not (remember its mother's day, and I've been home with mine by myself all afternoon!) 
Race for Hope DC was a fantastic trip!  Getting there was a little hairy....someone may have taken the wrong exit, someone may have had a meltdown or two, and some friends may have gotten stuck on the metro for an extra stop or two ( I was only directly involved in two of those incidents).  But once we got there and we started walking, I watched Richard take off running, for his girl.  I watched my sister and her husband take off running, for Ellie...my heart swelled!

(I just looked up and realized that Forest Gump is on TV and he's running...hehe).  Forest Gump just ran because he liked running, my family ran because they made a promise to run in her honor.  We finished the walk and found the Wall of Hope. There on this 20 foot long wall was my girl's beautiful face among all the other fighters, survivors and those whose journey had ended.

Of course there were tears, but hearing we were part of the 2.4 million raised, again filled my heart with pride. Our team alone raised over $4500!

During a crazy busy week at school, Noah once again spiked a fever.  He was already on his 2nd round of antibiotics and 2nd run in with strep.  I spent hours trying to calm myself down, to not freak out, its just a fever.  But again when you've been to the doctor's office as much as we have, its hard not to let your brain run wild.  He's all better now, and has been quite the sweet heart the past two days!

My birthday came and went, with sweet presents from my boys. I got to wear a tiara on my special day, but my boy was feeling puny, and my princess isn't physically here.  It wasn't a horrible day, just felt a little empty.

As mother's day approached, I didn't really have any expectations for the day. I was excited because we'd all get to go to church together in the morning, something that hasn't happened a whole lot lately with Richard's busy work schedule. I couldn't help but smile that morning. Preacher was praying, Noah was holding my hand, and then reached over and put his other hand on my belly, and just patted it.  This little boy is just wise beyond his almost 6 years. His heart, that he wears right on his skinny little sleeve, is just huge.  He loves to help others and is just an amazing big brother.  There came a moment in church, where that awesome peace came over me!  And my heart said, "I don't miss her today".  I know that sounds horribly harsh...but there are some moments in my day where the pain of missing her is immense.  Or I'd just like for 10 minutes to feel like a whole person, not that someone is missing.  And that morning I had it.  The thought of her made me smile, I didn't feel sad, I felt her all around me, saying "I yove you mommy!"

Preacher delivered such a meaningful sermon to our life at the moment.  This one line that struck me and stuck with me.  God doesn't tell us our destination in life.  If he told us the destination, we would focus on that and not the journey.  If you could have seen the light bulb that went off over my head!  Well duh!  If God had told me last February when Ellie was diagnosed with cancer that she wasn't going to live, that would have been my focus for 11 months.  I would have spent my time thinking when and where and why.  I knew God was capable of doing anything he wanted to do in her life, so we focused so much on each day, not the future.  We focused on making sure we prayed for her every day, we focused on encouraging others, we focused on keeping a smile on our family's face. We focused on living life.  Not knowing the outcome, allows you to completely trust in God.  With Ellie's type of cancer, we knew He was our only hope, we knew the statistics said that children under the age of 3 with metastatic pineoblastoma don't survive.  But because I put all my trust in the Lord, and just focused on the day we were in, we made it through with a ton of happy memories.  We went where the Lord told us to go, we allowed Him to shape us, to mold us, and to flatten us out a couple of times so that He could reshape us.  And He's still continuing to reshape and remold our family.
"Yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8 

Prayers, Praise and Pink
~Carly

In Celebration Of

It got quiet in the house just now...so rare around here, unless its 6am (and even then you have a chance of Noah showing up awake!) The boys went to the grocery store and SG just laid down for a nap and I was sweeping - because my dog has been slacking on the crumb clean up lately - and it hit me.  Tomorrow is the first walk we are doing "In Memory Of", which is way different than "In Honor Of!" We did this walk last year while she was in Memphis, and then two days later I got to take the long trip to Memphis to see her for the first time in 6 weeks. Tears arrived, and while I'm so proud of what we are accomplishing in her memory, I sure wish she was physically here to experience it.  I miss her so much, and its days like today where I could sure use a chubby cheeked hug from her.  Where she would tell me, "it will be okay Mommy!"  

This little old Princess Strong Team, composed of 26 registered team members has raised $4,339.  We are ranked #97 amongst 613 teams. I'm still amazed at the support so many people from all over the country give to us.  I'm amazed that strangers have become family and would travel all the way to DC with us "in memory of". 

I remember last year feeling so proud of my fighter, that she had this horrible disease and she was fighting it with a smile.  This year, I feel even more proud that she fought that entire battle with a smile on her face and a dance in her step.  She never complained about doctors and shots and medicines.  She loved her St. Jude friends.  I'm proud that we made choices for her treatment based on prayer.  I'm proud that she knew that Mommy and Daddy loved her to the moon and back, but God loved her most.  I'm proud that even those she's gone from this earth that we continue to raise substantial amounts of money to show just how important this all is to us.  I'm proud we are dedicated to helping others who will be faced with the same road we traveled.  I know Ellie's purpose was fulfilled here on earth, and I want so badly to fulfil mine.

Tomorrow we will wake up bright and early and head to DC, with lots of friends and family in tow.  I remember stepping into Freedom Plaza last year and having my breath taken away but the shear number of people that were there to support brain cancer.  I'm expecting the same experience this year, but probably with a heavier but super proud heart.  Noah is beyond excited for this day, as he happily emptied his cancer kid piggy bank this morning to add to our team total.  I'm pretty proud of the huge heart this child has for helping other children with cancer. 
So I ask for prayers tomorrow, for safety and for peace. That when I become overwhelmed at the masses of people and the stress of getting there, that I can take a deep breath, close my eyes and envision my girl, dimple faced smiling at me, reminding me to dance to the music and sing out loud. And when my feet are tired (3 miles isn't a Sunday stroll for me) I remember everything my girl endured and I can press on...because its all in Memory of Ellie! Although I think I like "In Celebration of" much better, because lets face it, we should totally celebrate the fact that she is in heaven, with her Heavenly father, no longer enduring the pains of this world, and one day we will all be together again....dancing.

If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you profess your faith and are saved. As Scripture says, “Anyone who believes in him will never be put to shame.” For there is no difference between Jew and Gentile—the same Lord is Lord of all and richly blesses all who call on him, for, “Everyone who calls on the name of the Lord will be saved.” (Romans 10:9-13 NIV)

Thank you for all who have donated to our team and helped us reach our goal.  There's still time if you'd like to help.  Click Here to donate to Team Princess Strong for the Race For Hope in DC.

Prayers, Praise and Pink

Carly

This is a test

I hate tests....I'm a bad test taker! Never broke 1000 on my SAT's (do they still take those?) Never in the past year did I really feel like we were being tested, although I may want to go back and read all my old posts to see if I ever said that...I'll rephrase. Looking back at the best year, I don't think we were being tested. I think we were being led on our journey. We were being taught our strength when we rely on The Lord. We were being shown a whole other side of life that a lot of people don't see or experience. We were being used to spread the Love of Jesus. 

Now, I feel like I'm being tested. I feel like God is saying "you just went through this crazy year, you learned a lot, now can you use it?" ....I'm sure my school friends would call that practical application or some Blooms taxonomy level. The bad part about this test is my brain is so jumbled up I just can't think. I'm having a hard time retrieving that prior knowledge and applying it to my new situation. (I've been planning my test taking/anixety lessons, can you tell?) 

In the past year, I've written a lot. I've preached a lot. I've encouraged a lot. Now I'm at the point where I have to take all that stuff I wrote about trusting God, believing in His plan, knowing He will provide and really live it. Kinda funny how easy it was to live that way when that was the only option. We couldn't control our situation, all we could do was to leave it up to God. We couldn't make the cancer go away, we couldn't make the medicines, we couldn't fix it. Realizing all that made it so much easier to trust God.  We aren't in that situation any more. We are back in the world where we can control things and it's funny how much harder it is. Living for today seems to be a thing of the past. Here we are once again trying to plan for the rest of our lives.  If I could figure out how to realize that I am really not control of anything, maybe it would be easier to trust in His plan again, instead of doing my best of convincing Him what I think His plan should be. 

The only study guide for this test is my Bible. And luckily everything I read tonight told me just how much my God loves me. Not based on my actions or thoughts. He knows my everything, and still loves me. 

The Lord is compassionate and gracious, slow to anger, abounding in love. He will not always accuse, nor will he harbor his anger forever; he does not treat us as our sins deserve or repay us according to our iniquities. For as high as the heavens are above the earth, so great is his love for those who fear him; as far as the east is from the west, so far has he removed our transgressions from us. As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. (Psalm 103:8-14 NIV)

I am asking for prayer for my family tonight, I haven't asked in a while, and I know that many still pray for us. But specially asking that we would truly surrender all control. We would trust that He has a plan. We would remember all those past lessons and apply them to our new life. Thank you.

There is one test I passed recently, that I've gotten pretty good at passing...

We found out in February that we are expecting baby #4. And as exciting as new life is, it came with some heart ache, and truely took me some time. I don't know how to explain the feeling you get when something exciting happens in your family, but there's someone missing to enjoy it with. It kinda is a mixture of guilt (even though you know there is nothing to feel guilty about) and sadness, but swirled happiness.  Once we told Noah and he became beyond excited I felt much better. He has been talking about a little brother since last year. I joking told him he better start praying...I guess it worked. We don't know if it's a brother yet, Noah has assured us he will be happy even if it's a sister, but for him, I really hope it's a boy!

Prayers, Praise and Pink

Carly

Learning and Healing

Probably a month ago Noah and I were talking. If you've ever had an in depth conversation with Noah, you know how his little brain works. How he processes information and you can almost watch the wheels turning in his head. This particular night, I don't remember how we got to this conversation or all that was said, but one particular thing stood out. I was talking about bringing Ellie home from St. Jude because the doctors knew the medicines weren't working and there was nothing else they could do to fix her. Noah looked at me with tears and said "They gave up mommy! You aren't supposed to give up, you are supposed to keep trying!" He was so genuine and so hurt. I, of course fell apart. Being a parent in my shoes, it's easy to let your mind go back there and think "well what if we had tried something else..." But there's no answer to that, we did what we knew God lead us to do, but it still hurt to hear Noah say that. As much as I tried to explain why we didn't do anymore medicines or try other things, his little 5 year old brain didn't understand all that, as much as I wanted him to...probably so I wouldn't feel so guilty! Within minutes he had moved on to something else, but that conversation felt burned into my heart.

This week we have had Jubliee at church. We've been up way past out bed times, but my heart has been touched greatly. Many nights on our 5 minute drive home (church is the only thing we live close too!) Noah is weepy from being tired or going on about the movie they watched. Tonight he told me about the balloons they let go at church, which led him to remember letting balloons go after Race For Hope, DC last year, which then led him to ask me what that walk was for, which led to a conversation about brain tumors and Ellie. And in the midst of it he says "Mommy if Ellie hadn't have taken all that medicine she would have died sooner, right?" 

"Probably," I answered. "And we would never have had all those great experiences we did, like going to TN, making new friends, going to Disney World"

"Well then I'm glad she took all that medicine, so that we could keep her as long as we did!" He replied. 

My heart soared, somehow that little statement relieved me. He's not thinking we gave up, he's not angry at the doctors, he's happy they gave her the medicine that they did, and he really wants to help raise money so "the doctors can find the right medicine that will make those bumps in her head go away and never come back!" 

It was a small moment, but for me, it just felt like we were heading in the right direction. He was feeling good about something, and not holding that anger...a little relief filled my heart.

Just so grateful tonight for the little things that encourage me to just keep going!

“Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.” 1 Corinthians 13:4-8 

 

Prayers, Praise, and Pink

Carly

Strength

Someone said to me recently they don't know where I find the strength, and sometimes they feel weak when they read my posts.  It made me really stop and think about what I'm sharing. I never want to give off the impression that it's easy or that if you just believe in God he will make it all better (although if you have given your heart to The Lord, he will always be there to provide the peace you need. He will not forget you).  Any strength I have comes straight from The Lord. I could never do any of this on my own. And there are many moments I feel weak and I fall apart. In grad school my entire research project was on grief and a lot of what I wrote about were stages of grief. I surely can't recite them all now because that was a million years ago, but I can assure you, from own experience grief comes in moments, waves, mountain slides, a gentle breeze or a big old hurricane. Sometimes it's quick and sometimes it lasts all day.  It's something you can't always explain to others, but can be seen all over your face.  

So I have been compiling a list of "confessions" I guess you could call them. Things others might not know who haven't walked this walk. Or if they have, maybe something they can relate too. My hope is to encourage someone that it's okay to be on the roller coaster, you aren't alone.

I often sleep with her monkey

I feel guilty sometimes that she's the picture on my phone, my watch and around my neck, and I'm grateful my other children aren't really old enough to feel left out.

Everywhere reminds me of her

I leave the radio on a lot because this house is too quiet

I try to take way more videos of the kids now

I stay up late looking though the pictures and videos on my phone

I search other people's Facebook pages for pictures of her

I get sad when I can't picture her in my head

I don't feel "her presence"

I don't know what to do at the cemetery 

I love to talk about her

My heart soars when I hear others talk about her

I'm scared she'll be forgotten

I watch my other kids neurological signs very closely

I stay in the shower for much longer than needed because it's the only place that I'm completely isolated

I'm tired of looking tired

I know what soul weeping is

I'm not depressed

I don't think people expect me to just be okay

Grief can still have a smile on it's face

Some days I'm just not in the mood to pretend I'm okay, and I can only be "not okay" around my husband

And some days it's easier to pretend to be happy then say how I really feel

I can't understand why there's not a cure for cancer, but we have the latest technology on our cell phones

I still take my other kids for granted 

I miss St. Jude 

I miss TN

I don't wonder what she would have been when she grew up because obviously that wasn't God's plan for her

I wonder how long till I see her

I read a lot about heaven

I cringe when Noah talks about death

I'm grateful Noah knows about death

I really wanted God to heal her, I wanted her to be that miracle 

I wish Noah had her back to play with because he drives me nuts some days

Knowing that I can't hear her silly voice or hold her any more breaks my heart

I talk about my daughter a lot, probably more than some people may be comfortable with, but it makes me feel good.

The shower and the car are the places I cry the most.

I doodle her name

I wish I could hear God more often

I miss her bald head way more than her pig tails

Sometimes when I see other little girls around the same age I get jealous

I hit my steering wheel in anger...just not sure what I'm angry at

Sometimes I get frustrated when people act like nothing has happened in my life, but also feel weird when I get treated differently because of what has happened in my life

I'm not scared of death anymore

So be strong and courageous! Do not be afraid and do not panic before them. For the Lord your God will personally go ahead of you. He will neither fail you nor abandon you.” 

Deuteronomy 31:6

Prayers, Praise and Pink

Carly

Happy Birthday SG!

With each new "special day" that occurs in our family, with out Ellie, is hard. Our anniversary, which you don't normally consider your children a part of, was rough, (possibly because I attempted to bake a lasagna in the oven and the whole pan exploded, which left us going out to dinner with two children at 7:00).  We survived that evening okay, and I think ended up having some great conversations...all because of an exploded lasagna (God works in the best, and in our case, messiest ways!)

So today brought about another "special day" that Ellie is not physically here for. However, today went better than previous "special days".  Today my sweet SG turned 1.  I'm pretty sure this was the fastest year of our lives ever. 

A year ago God started showing his hand in orchestrating her story.  Preacher had gone to visit Richard and Ellie. Ellie was undergoing her first inpatient chemo, she "just happened" to be released from the hospital the same day Preacher planned on driving back home to VA.  The doctors' just happened to decided that if they pushed Ellie's schedule by one day, she could come home for her sister's birth. My sister and I giggle when we hear about coincidences, I just don't believe in them anymore, it's just a God thing.

God allowed them to be there for this day, and I'm so grateful.

So now, 1 year later, this little girl who came into the world amongst chaos, is turning 1.

This munchkin for the first 9 months of her life was pretty quiet.  Pretty laid back, never made a fuss.  She just went along with whatever was going on or whomever was loving her. We have a joke around our house, that Ellie and SG had secret conversations before Ellie left us.  I believe Ellie shared all the tricks of the trade of being a little sister. Within days of Ellie's passing SG came out of her quiet baby shell.  She received her sister's spunk, and took over right where Ellie left off.  Not a coincidence at all, just God's handy work.

I thank God for this sweet girl.  When we found out we were pregnant with SG, I spent days trying to figure it all out, where kids were going to sleep, how I was going to get Noah to school when I was on maternity leave....doing all the typical Carly panicking/planning, I do so well.  We made it pretty smoothly through 7 months of pregnancy before Ellie got sick.  They I started trying to figure out how in the world we were going to make our new lives work. How was I going to have a child by myself, how was I going to be able to handle not seeing Ellie while she was in the hospital, how were we going to survive without working.  What have all these "panics" taught me?  The Lord will provide...for every single one of these.  I didn't have to worry about getting Noah all the way to another county for school while I was on maternity leave, a placement in a local preschool had opened up, and the teachers went to our church. I didn't have to have a child by myself, God brought them home.  People were touched by our story and provided iPads so we could see each other daily. Amazing coworkers provided sick days, so that I had a paycheck while I wasn't working. And when we had to pull Noah out of Kindergarten this past year, his old preschool teacher (who goes to our church) was now teaching Kindergarten at his new school.  I'm not sure how you can't look back on this whole ordeal and not see God in the midst of it all

God provided His grace in the form of a chubby little girl, with the same name. She daily reminds me of her sister. She has fallen in love with pink monkey, and often points to pictures of her sisters and smiles or giggles.  She drives Noah crazy, by always trying to get to his toys, and I'm counting down to the day where she starts hitting him, just like Ellie used to. And then I will once again hear "Mommmmmmmyyyyy, she's hitting me!" And the noise will come back to my house. It won't be the same noise, but it will be nice to hear again (please remind me I said that, when I'm ready to lock them up in their rooms)

My God will supply all your needs according to His riches in glory in Christ Jesus.
Philippians 4:19

Prayers, Praise and Pink
~Carly