For More Ways to Help The Blaines

Thursday, April 10, 2014

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

Thursday, April 3, 2014


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

Tuesday, March 25, 2014

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

Monday, March 17, 2014

Praise Him

Psalm 148

Praise the Lord.[a]
Praise the Lord from the heavens;
    praise him in the heights above.
Praise him, all his angels;
    praise him, all his heavenly hosts.
Praise him, sun and moon;
    praise him, all you shining stars.
Praise him, you highest heavens
    and you waters above the skies.
Let them praise the name of the Lord,
    for at his command they were created,
and he established them for ever and ever—
    he issued a decree that will never pass away.
Praise the Lord from the earth,
    you great sea creatures and all ocean depths,
lightning and hail, snow and clouds,
    stormy winds that do his bidding,
you mountains and all hills,
    fruit trees and all cedars,
10 wild animals and all cattle,
    small creatures and flying birds,
11 kings of the earth and all nations,
    you princes and all rulers on earth,
12 young men and women,
    old men and children.
13 Let them praise the name of the Lord,
    for his name alone is exalted;
    his splendor is above the earth and the heavens.
14 And he has raised up for his people a horn,[b]
    the praise of all his faithful servants,
    of Israel, the people close to his heart
Yesterday's message at church was to "Praise Him". I believe this is a pretty simple, yet extremely important message. I know its not always easy, especially maybe on a day like today where you are snowed in with crazy kids, or had to try to get to work in the snow, but from personal experience I know that taking those few minutes to praise Him or thank Him will help change your attitude.  Right after Ellie took her last breaths, I went to my knees and I thanked the Lord. I thanked Him for her life, for allowing me to be her mother, for the lives she touched and for ending her suffering.  It sounds weird, but this was one of the most peaceful moments I had had in a long time.  Holy Spirit was all over me and as much as it hurt, a smile came to my face.
I have to remind myself of this often, its so easy to get caught up in the grumps and frustrations of the day.  Its easy to talk about everything that has gone wrong or what others have done that made you mad, but that's not what the Lord made you to do, he made you to praise Him.   "All you have made will praise you, O Lord" Psalm 145:10
Today I praise Him for the snow, for a day at home with my children, for a break from work, for a truck with 4wheel drive that brought my husband safely to work.
For Noah's sweet feeling of his sister right beside Him that brought the biggest smile to his face last night.
For co-wor4kers whose smiles say it all. They understand and they just love me.
For a job to go back to.
For little SG and her almost 1 year old self.
For a personal relationship with the Lord, and just when I feel so lost, He reassures me I'm on the right path.
For friends who always check on me, don't get discouraged when I don't respond, and just love me.
For allowing me 8 years of marriage to my best friend. Who pushes me because he knows I can do more, tries to understand my crazy thoughts, and tells me "no" when I need to hear it. 
So today, make your list. Every time you feel frustrated or angry, Praise Him, even if its just for the fact that you are here today. 
Oh wait....another HUGE praise! We started a new t-shirt fundraiser for our upcoming walks, in only 2 days, we have raised $1,480! Thank you all so much who have supported and donated!  The shirts will be on sale until April 1st.  If you'd like to purchase a new Princess Strong shirt, here's the info
Prayers, PRAISE, and Pink
New favorite song! Enjoy! 

Wednesday, March 5, 2014

I can shovel!

But don't tell Richard! We have had yet another snow storm here in good old VA! The only difference in this one is that Richard is in Florida. Normally when a snow storm is headed our way, Richard parks the cars in the right spots, remembers to put the wipers up and gets the rock salt all ready...well guess whose wipers were stuck to the windshield...opps! It started snowing Monday, and snowed hard all day, till about 3 and then the most beautiful pink sunset occurred. 

As pink sky pictures popped up all over Facebook, I couldn't help but smile. I guess as a parent whose lost a child, you are afraid that your child will be forgotten, she wasn't forgotten that day.

As the snow let up, I figured it was time to suck it up and start shoveling, at least the sidewalk. I have to be looked rough! I'm spoiled by my hubby who will go out and shovel no matter the conditions, and he always clears the sidewalk perfectly, apparently I don't have that same ability. I went on a hunt for rock salt to melt all the slick spots. I found some...up high on a shelf. Again I would normally ask for help, but I had to go find my own stool to stand on (man do I sound spoiled?) 

Today as I headed out again to take advantage of the sun and the warmth, I grabbed my shovel. And I not sure if I was just delerious from the kids at home by myself all week, or The Lord was truly speaking to me...but I heard "see what you are capable of?" And as the snow melted away, thanks to my shoveling and salt spreading, I had a sense of satisfaction. Not that I want to shovel in the next snow storm (and the way it's been a round here lately that may be next week!) but when I have to do something, when I have no other option, I can do it. I thought back to Ellie, like I always do. I thought back to all the times I heard "I don't know how you do it."  There were no other choices, we just had to. And just like shoveling is no fun, neither is watching your child near the end of her life...but what else are you gonna do?

Why does God put us in these uncomfortable situations? Why does he give us these tasks that seem impossible? The only answer I can give is so that you can see just what you are capable of. So that you can find your strength, and even if it's just from snow shoveling, you can feel happy of the thing you accomplished. I am not happy that Ellie is gone, but I'm super proud of the way Richard and I dealt with it all. I am happy that we continually prayed for guidance and strength to help us accomplish those gigantic tasks. We faced the unthinkable, and I remember often thinking, "how in the world are we going to do this?" But the awesome thing about God, he will lead you down the path that works best. It might not seem like the best path at the time, but I promise you, there's a reason for all the detours, wrong turns, u-turns and traffic delays...he's got it all worked out!

I face my next mountain tomorrow, I go back to work after not being there for almost 6 months. I told Noah I was nervous, of course he asked why. I told him I was worried I might cry...his response "remember what you told me at the cemetary mom? It's okay to cry" I hate when my words comeback to bite me, but he's right. The only person who has a problem with me crying is me. So I will head into work tomorrow (2 hours late...thank you Culpeper!) I know I will be surrounded by love...that's the best part of working with kids! I know that God has given me this challenge to help me see my strength and His. And I will keep reminding myself to be Princess Strong!

The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him. (Psalm 28:7 NIV)

I sure will miss these two tomorrow! And my snow shoveling super hubby comes home tomorrow!
Prayers, Praise and Pink,

Thursday, February 20, 2014

Fitting in

A few weeks ago our furriest child (the dog) took off when I let him out to go to the bathroom. This isn't the first time he has disappeared, despite our best efforts. But this time it was snowing and it was so cold. I waited, surely he'd get cold and come home...I waited some more, still no dog. I finally headed to bed, worried, but not much else I could do. When the phone rang at 5am to say school was cancelled, I went to check to see if he was home. I opened the door and there he was. However unlike other late night outings he's had, this time he was hurt...and probably half frozen. As I brought him in...tears started to flow...I got Richard up and we just stared at him.  We had no idea what was broken or hurt, but all I could say was "I can't do this again"... I know he's a dog and Ellie was a human, but that's right where my brain went. His breathing reminded me of hers, his was all too much. As Richard preparred to head out in the snow to the ER vet, I couldn't stop crying. He's technically our oldest child, and I started thinking of all those times I've fussed at him, what if he doesn't make it? After a long day of waiting all he had was a broken jaw and a cut on his head that needed to be stiched that was all that was wrong I had no idea, but I thanked God for it, this family couldn't handle that loss right now. Over the next few days we had to fight him to take meds and eat....sound familiar? Again it toke me right back to Ellie, to the point I had to leave the room when Richard was trying to get him to take his meds.  When I finally got him to eat, I felt like singing and dancing..."go Kapone, go Kapone"...that's what we used to do for Ellie when she'd eat.  

Is this what happens now? Every time something happens in our family, I go back to Ellie. When a kid gets sick, will I always cry thinking back to my sweet girl? Not a clue, I've never done this before!  As I go for more days inbetween meltdowns, I find it so easy to be pulled right back into that moment. Last night, SG let out a blood curdling scream in the middle of the night, I think I stopped breathing as I went running to her room. As I picked her up, I couldn't help but fall apart. Memories and emotions are so raw in our house. And the roller coaster still goes up and down, Richard and I seem to take turns with bad and good days. And as the days go by and I count down to my return to work, it can't help but worry about these moments occurring while I'm there. 

Peace just isn't found as often as it used to be. I don't think I realized it was missing until I finally opened my devotional again and read...
"Breathe in the peace of my presence: peace that transcends all understanding. Take time, take time with need to sit quietly, focusing your thoughts on me...the world is full of trouble, but I have overcome the world...assert your confidence in me, saying "I trust you Jesus, you are my hope...I am training you to be an overcomes."
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

I remember that feeling of peace in my heart, I miss it. Lately it's just a feeling of existence, not a horrible feeling, but definitely not as great as peace. When you have a sick child, that's your life, in fact your life just kind of stops...other things go on but almost all your focus is on illness and getting better. You become known as "so and so's parent", that is your identity. Ellie's illness gave me a whole new focus in life, it gave me a new identity. It taught me lots of things and brought me so close to The Lord, and now her illness is over. My focus isn't on hospitals and meds and living in another state. I'm still Ellie's mom, but that role carries a whole new identity now. Kinda feel like I'm back in high school trying to figure out where I fit in. I have two beautiful children and an amazing husband to care for, but I miss having the "purpose" of Ellie's illness in my life...does that make sense? It was such an important purpose, that made you forget about all the petty things in life, the silly agruements and drama and just focus on your child.  I hated her having cancer, I hated seeing her not enjoying life like a two year old should, but I had a purpose and a focus, get Ellie better, help her feel better, make sure she took the right meds, make sure her counts are okay, make sure monkey is clean, make sure her headband isn't lost (oh how many times we misplaced her princess headband!). Once I got into the groove of my new role in life, I got very used to it...and now that role has switched again. I know, with time, my new role will become aparent to me, and I will once again find where I belong (isn't that a Disney song?) It's just a weird place to be in right now, and I know I can't always explain it to those who are around me in the right way.  
I have focused on crocheting, a lot...not as important as taking care of a child with cancer, but it keeps my mind busy and it's all in honor of my girl. She is the whole reason I began crocheting 3 years ago. I have two craft shows coming up, first ones in a while, I'm excited to do them, excited to do something I used to do on a regular basis. I am also excited because it allows me to share Ellie more! She was always my model, so I have lots of pictures of her to display. I also use my craft shows to help raise money for our upcoming walks, we have two so far we are signed up for. If you'd like to know more about our walks you can visit team Princess Strong on facebook....

All the walk links are there, as well as any upcoming fundraisers we may have going on.  I believe raising money for cancer research, is part of my new role as Ellie's mommy! A role I'm getting used to, but will be tough without my girl there! 

I ask for prayers of peace for us, that we will remember to seek Him, breathe in His peace. And I praise Him for the crazy distraction this little girl has been!
Little Miss SG has become quite the character!

Prayers, Praise and Peace
Carly...aka Ellie's Mommy

Wednesday, February 12, 2014

A year ago

A year ago today, I was a parent of two with one on the way. I had gone to work, which was a rarity lately with Ellie being sick and no one knowing what was wrong with her. I left work early to go to my own OB appointment that I had rescheduled twice. Richard had stayed home with Ellie, and once again called the pediatrician with an update that she wasn't doing any different. I reminded him to mention that one side of her face wasn't moving. As I left my own doctors appointment, Richard called me as a van that looked like my mom's pulled in behind me at my doctors office. Richard was calling to say that they wanted him to bring Ellie to the ER again, they were going to do a CT scan, he didn't want me to panic, but had called my mom to do whatever she could. I drove home with Noah, chatting while mom followed me. As I pulled in the driveway an hour later my phone rang was Richard, with panic in his voice I heard, "they found a mass in her head, you need to get here". God covered me with calmness, as I told mom and ran I the house to pack a bag...what in the world do you pack at this point? Pretty sure I wandered aimlessly and left. I drove the hour drive in traffic....more panicked about finding them once I got to the hospital...UVA used to intimidate me. As I walked into the ER, there stood Preacher and his wife, looking for Richard and Ellie too. I was so grateful to see a familiar face to help me navigate the halls and find my child. I remember the doors of the PICU opening, the first face I saw was a nurse who knew who I was immediately and flagged me down...I don't remember much after that,it was all a whirlwind, lots of talking, I don't think tears, and off she went to surgery. 

Looking back, I can't believe that was a year seems like yesterday, but also seems so long ago, all at the same time. A year later I am the mom of 3, but I still only physically have two with me, which I've found is hard to answer when people ask you how many children you have. In the past year I have watched SG grow from quiet and calm baby to all out crazy lady. Noah has grown to have an amazing grasp of life and death, he asks fantastic questions, and cries just as much as he always has....he's so my kid! 

I find myself questioning things I never thought much about before. I think about heaven so much. I wonder what it is like now. I find it hard to be a mom and not know completely where your child is or what she's doing...I've often tried to explain this to others and I can't ever find the right ways to describe it. When Ellie was 800 miles away in Memphis, I could point to a map and know where she was. I could FaceTime her and see her face, even if she wasn't smiling, I knew how she was feeling. I could call her and hear all about her day. Richard could text me pictures to make me smile when I missed her most.  The mom in me wants to know she's okay...or should I say see and hear she's okay.  I "know" she's okay...but I wasn't able to go ahead of her and scope it out before hand. I know nothing about what heaven is right now. I know of the heaven that John saw in Revelation, but that's the new heaven and earth.
Then I saw “a new heaven and a new earth,” for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.” (Revelation 21:1-5 NIV)
I find myself reading and rereading Revelation, hoping for a clue, something I missed that would give me a hint about the present heaven. For a few weeks I struggled with this...probably not searching the right places for the answers I so desperately wanted. Often forgetting to turn the only one who could answer my questions, instead turning to google to search for answers. Preacher said something on Sunday that stuck with me...he leaves you in the strain for a reason. There's a reason I'm stuck in this state of questioning, possibly so that I will look more to him for answers, since man and google's answers aren't satisfying me. I hope this makes sense, possibly not to someone that has never been in my shoes before, but I truly hope by sharing these moments of confusion, someone else can relate. 
My understanding of Gods love and purpose for our lives has grown so much. Noah asked me one night if I wished people never died...I didn't know how to answer him.  Do I miss her, yes? Would I like to have her back, absolutely! Do I understand why she's not here...yes. If death is in Gods will, I can't wish it didn't happen...of course that was pretty tough to explain to a 5 year old. I am completely changed. Before this all happened, I just believed God loved me and he would take care of me, I honestly didn't think much about it. A year later, I have seen how God loves me, I have experienced how he cares for me, I have seen and heard.  I have all the proof I need.  

A year ago, after her first surgery...finally smiling again!

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)

Prayers, Praise, and Pink