5 years.

Death leaves a heartache no one can heal, love leaves a memory no one can steal.

Tomorrow marks five years since my cousin Alexis passed away and earned her wings into Heaven...in some ways, I can't believe it was five years ago. It seems like I just saw her and smelled her (she always smelled like a tanning bed) and secretly giggled at her tongue ring. But her funeral seems a lifetime ago. I remember that day, July 10th, 2005, like it was yesterday. We were driving up to New York and finally, after a long car ride, we were almost there but my dad kept pulling over and he was talking on his phone. I was getting so annoyed! "Would we just go dad?! I'm so carsick! I want to get there already!" and finally, we did arrive. We got there and jumped out of the car, said hello to grandma and grandpa, and ran upstairs to the rooms to settle in. About twenty minutes passed, and my parents came upstairs and told us all to gather in the little girls' room. I was so excited...I felt as if they were going to give us a surprise - maybe we'd be going to a special concert or show while we were up there. Then my dad said, "Girls, your cousin Alexis died today." and my first reaction was laughter. Not laughter that she had died, but laughter as in disbelief. What?! She died?! When I saw tears in my dad's eyes, I looked up at my mom who also had tears in her eyes, and then to my left and ride sides at my two little sisters. I opened to my mouth to speak, "How?" The verdict? Drugs.

I was shocked. I had known that my cousin was an alcoholic and that she had some problems, that we were helping her, but drugs...at that age, I couldn't even fathom the idea. We all sat on the small, creaky twin bed in my mom's old bedroom crying for a few minutes. The decision was made that we would drive home the next day to get home in time for the funeral.

The funeral was a blur. It was my first real funeral. I had been to one for a dad of a classmate but it hadn't been someone I had known. This was the first funeral of someone that I loved, the first funeral that I cried true tears at. The only thing that I really remember clearly from her funeral was one man that spoke when friends could come up and share memories. He said, "Most of the time God picks weeds, but sometimes he chooses a flower. And boy, did he pick a beautiful one." Those beautiful words touched me and still do today. She was a beautiful person, and beautiful on the outside too.

Alexis and I had a good, close relationship. She was my "favorite cousin". I have so many memories. I remember playing intense games of Hungry Hungry Hippos. I remember her showing me one of those stick-on bras that her mom had given her and us giggling at it. I remember her braiding my hair before Easter mass. I remember her giving me a bracelet of hers to keep, one that I now treasure and keep close to my heart. I remember the last time I saw her telling her that I loved her shirt, even though I thought it was strange. I remember her telling me that I looked just like her in the particular outfit I was wearing, and how happy I was to hear that. I remember so many positive things about it. Alexis was troubled. She had a lot of negative things in her life, a lot of problems, a lot of things working against her. But I'm choosing to remember the positive things - her beautiful smile, her raspy voice, her motherly kindness, and her sweet gestures. Those things will live on forever.

And Alexis, I hope you know how much I love you up there. I wish you were still here with me today. I know our relationship would've even gotten better now that I am older...but God's will brought you home all too soon. I miss you so much and I love you. Lexie, do me a favor and take care of Ellie for me. She's my friend and she's new to Heaven...she just got there 2 weeks ago. You've been up there for 5 years now, you must know your way pretty damn good.

Rest in peace forever, Alexis.
February 8, 1981 - July 10, 2005

Vacation

I'm on vacation right now. We've been in New Jersey at the Jersey Shore and am now in Long Island, New York in the Hamptons. This vacation has been many things, but most of all, it was much needed. If you asked me on Friday, June 25, I would've said I didn't even want to go...and I didn't. And I said that. "I don't want to go on vacation." My mom said, "Lindsay, you've got to. It'll be good for you. You need to clear your head about all of the Ellie stuff and just relax. You deserve it." Sure, I smiled and nodded but what was I thinking? Whatever, mom, I don't want to go.

From the minute we arrived, though, I knew that she was right. This vacation has been stressful, chaotic, crazy, sad, emotional but it's also been wonderful. I am so glad I had the chance to see Hayden, my best friend who moved away two years ago. We had a blast together at the Jersey Shore. I love her and missed her so much! It was great seeing her.

I let two balloons go on the beach for Ellie...an "I love you" balloon and a "Hannah Montana" one. Not a second goes by that I don't think of our precious Ellie, but now they go by with a smile more often than a tear. Ellie's life had a purpose. She changed me, forever, and I thank her for everything good in me. I love her, and I miss her but thank the good Lord she is no longer in pain. Like she said in her video, "No chemo, no nothing, just relaxing [on the beach]." Now, the beach is replaced with a Heavenly beach...the best kind.

Hey, Ellie

A man named Dusty Hughes wrote a song for Ellie called "Hey, Ellie" and it's absolutely beautiful. It was played today at Ellie's funeral/Celebration of Life and it was really, really nice, though the people who sung it were nowhere near as good as Dusty Hughes. Wish he could have been here for it.

Last night was Ellie's viewing. I wore a coral shirt and a black skirt. When you walked in the doors, the first thing you saw was that breathtaking picture of Ellie that is the main photo on caringbridge (caringbridge.org/visit/elliepotvin). It honestly just took my breath away. They were handing out little pink ribbons twisted into a cancer ribbon, that had little butterflies on them in honor of Ellie. We waited in the line until we reached Amy and Tim. There were two TVs that had a slideshow of Ellie playing. I lost it while watching that. I clung to Holly's hand and just...cried. Cried for me because I missed Ellie, cried for Ellie because she's gone, cried for Grace because she lost her twin sister, cried for Amy because she lost her precious baby, cried for Tim because he lost his little girl, cried for all of Ellie's friends who loved it, cried for Ellie some more because cancer is so cruel. Finally, we reached Amy who looked stunning in her pink dress (she always looks gorgeous). Holly and I were rather upset at this point, and Amy pulled us into a hug and she said, "I love you girls, so much" and rubbed my hair to calm me down and rubbed Holly's back to calm her down. At that moment, I just couldn't believe it. Amy, the woman who just lost her daughter, was comforting me, a friend. She has amazing strength. She then said something I will never forget. She said, "Girls, what you have done for my baby made a difference. It really did. If I had the time tomorrow at the celebration to speak about all those who have helped and changed Ellie's life, you two would top the list."

We then moved on to Tim, and the rest of the family. Ellie was between the two families. She was laying there, one hand on top of the other. Her head was covered in very short hair. They had put some lip gloss on her. She had a teddy bear in her hand, and her cross next to her, and her favorite pink converse above her.

Leaving her was the hardest thing that I've ever done. I kept telling myself, "Lindsay, that is not Ellie! That's Ellie body. Ellie is happy, she's looking down on you now" but leaving how I viewed Ellie for all this time was still, very very difficult. I am so glad that we saw her, though.

Today's funeral was much more peaceful for me. I still shed many tears and was very sad, but it was a sense of closure. Amy and Tim had amazing strength as they spoke. Amy shared more about Ellie's last moments, about the Ellie she knew and loved...Tim thanked some doctors, and their families. It was beautiful. The music was lovely and the program is precious. Ellie would love it! We then let off some balloons afterwards at 1 o'clock. Amy yelled,

"FLY BABY, FLY!"

Fly Ellie, Fly. I love you.

Dear Ellie...

Dear Ellie,

This morning you sprouted wings. What's it like being an angel? I'm sure you are the prettiest around. Today I went over to your house and we spent time looking at beautiful pictures of you and Grace from when you were little, and some more recent ones too. We talked with your grandmother who told us that your mommy and daddy were at the funeral home picking out a casket for your earthly body. I know you aren't in that body anymore but it was where you lived for the past 8 years, and I can assure you they are going to choose a beautiful final resting place for the body you called home. But now, that doesn't even matter to you...how's your 19 bedroom mansion on the beach, Ellie? That sounds wonderful, like someplace I'd like to take a vacation. Ellie, you've only been in Heaven for a few hours but I miss you already. I know your mom and dad miss you too, and Gracie misses you a lot. What are you doing in Heaven right now, Ellie? Do you have that pet pig you always wanted? I'm sure the beach is nice up there, Ells. As much as we all want you here with us, Ellie, I am so happy for you - because you are cancer-free in God's name! You've had cancer for almost 2 years now, it must be a wonderful feeling to be healthy Ellie again! God will take good care of you forever. Now you're a beautiful angel, Ellie. Please watch over all of us down here on earth. Put a special word in with the Big Man for me, okay?! :) But more importantly and most especially, watch over your twin sister. I know you will. You care for her a lot. She really misses you, Ellie. On Friday I will go to your church and see your earthly body, all prepared beautifully. It's going to be sad to see your body without the Ellie we know and love inside, I know, but I am telling myself to REJOICE because you are in Heaven now! That body is just that...a body. You are in Heaven! One last thing; I love you Ellie. This past year Holly and I have spent doing a lot of awesome things for you and Grace. I know you liked them and that gives me a smile to know that I helped to make some of your last days better than they would've been. No matter how much I miss you, Ellie, I know that you are still here with me in my heart. And you'll be there forever. You were a special girl, and your strength, bravery, hope and will to live up until your last breath was remarkable. I love you and I miss you, Ellie Shoal.

Love you forever,

Lindsay

3 to 6 weeks

3 to 6 weeks is the amount of time that we should be counting down to our summer vacation. 3 to 6 weeks is the amount of time until we go to see our favorite singer in concert. But for the princess you see above, 3 to 6 weeks is the amount of time in her life that she has been given. Just 3 to 6 weeks. Cancer has stolen so much from Ellie Shoal Potvin. So much. It's solen much of her childhood (she was diagnosed two years ago on July 2nd, I believe). It's stolen her beautiful blonde hair. It's stolen her ability to walk now. It's stolen her ability to go to school and be with her friends. Now, after a 2-year-long fight, it's just going to steal her life too. It just isn't fair. Ellie is so strong, so so strong. She's fought long and hard for these past 2 years. She isn't ready to give up this fight either.

When you look into Ellie's beautiful blueish green eyes, you see love - the love of God. Ellie is an angel. What do you when you are told that your child has 3-6 weeks to live? Well, I don't know. Ellie is in a lot of pain physically. Amy, Tim and Grace are in a lot of pain too. Emotionally. Please keep this whole family in your prayers. 3 to 6 weeks is just so unfair.

God's Golden Glitter

On Friday, "our" Ellie had a CAT scan. And the growth was tremendous. She now has more than 40 lung tumors ... one the size of a golf ball. They also had a healing prayer service for Ellie. After it was over, Ellie's head and hands were covered in golden glitter. Amy asked Ellie countless times, "Ellie, are you sure you didn't play with glitter?" and Ellie's answer was always the same, "No, mom, I don't even have any glitter!". Everyone else at the service was shocked to look down at their own hands and see golden glitter on them, too. This is called God's Golden Glitter and Ellie isn't the first person it has happened to. The glitter shows God's presence and majesty ... that He alone is in control but that He has plans to prosper and protect us always.

Please continue to keep Ellie in your prayers.

Smile

Kids are so carefree...it inspires adults and big kids/young adults to be the same. A child could get the worst news that they think they could possibly get, and still be able to smile. When you think about how many times a day you just smile or laugh, it's a lot but are you truly happy?

I could say that most days I am happy but of course I have by bad days, my sad days. But what are my "sad days" compared to those of some others who have it way worse than I? I've been watching a lot of memorial videos for babies on YouTube and they break my heart...many of the children have been stillborn and some have had complications prior to birth. I got to thinking, "Why am I so drawn to watching these videos?" They really do make me very sad, but they put my life into perspective. As I'm pouring tears over precious baby Ella who was stillborn or over little Haylee who drowned, all of my cares go away.

And that sounds incredibly selfish. Who uses other people's sorrows to take away their own? It sounds absolutely awful, disgusting. But it goes way deeper than that. I don't do it to make myself feel better, I do it sometimes to cry, sometimes, yes, to put my own life into perspective. When you view the stories of children with cancer or parents who have lost a child, you cling even tighter onto your own family and realize that hey, Life is good. You may have had hard times and troubles and yeah, I have had hard times of my own...

...but just smile. You have so much to be thankful for. Even if you have had terrible tragedy in your life, look for the good. Strive to find the happiness in the smaller things, like a child.

Blog Makeover!

I've pretty much been spending this entire afternoon giving my blog a makeover, which isn't even a big deal to anyone because I don't think anyone reads this...but it's therapeutic and important for me to write down all my thoughts, plus I want to look back on this and be able to remember all of this special memories.

So, lots has been going on lately. The nonprofit is somewhat in the process of being set up. Because the attorney pretty much bailed on us (thank you, Brad) we are going forward on our own registering Butterfly Kisses Carebaskets Incorporated as a corporation in North Carolina pretty much on our own. We're using Legal Zoom which is actually quite helpful. Hol and I just need to get in contact with the support guy there, Steve, so he can help us fill in a few of the blanks that we don't understand. The good news is that North Carolina has no laws for the age of directors of nonprofit organizations - which means that the organization can officially be in the names of Holly and I. That's super important to us because this is our thing. All expenses are going to be paid by us and we're doing this on our own by choice.

Once we finally have it set up as a corporation, the next step is to obtain a federal tax ID #. Then there are several more steps, but we're going to really get down to business and hope to have it start soon. Meanwhile, if any of you know of any children in NC who are battling any type of terminal illness or condition, please let me know with name and info. Thanks.

The Future.

I love to think about the future because a lot of times I feel like I am an adult stuck in a child's body. I feel like I am lightbeyond most people my age besides those few people that I am especially close with.




I am really looking forward to my future. I'm looking forward to all of the guys growing up and for them to start acting like real men, rather than jerks. I'm looking forward to college, and getting married and starting a family. I'm looking forward to being a nurse midwife. Many people doubt that I'll actually become a nurse midwife but I've wanted it for so long...since age 4 I've said that I would be a "baby nurse". I hope that I do. I'm sure that I will.




At the bottom here, I just wanted to post a little dedication or whatever to Holly. Holly is my best friend here in Charlotte. She is one of the few people here who I actually feel is as mature as I am (and I promise, I'm not trying to sound boastful). Holly and I have shared so much! We laugh hysterically, have deep conversations and prefer to read MckMama's (mckmama.com) blog instead of attending the latest 'rave party'. Yes, we're insanely cool.

8 years ago...

Grace's First Holy Communion is tomorrow and whoa, I can't believe she's already that old. I remember so clearly the day she was born. I was at a friend's house (Grace was born 3 weeks early, so it wasn't planned for me to be there while my mom gave birth) and when I got home, I was told that she was at the hospital. At at 4:30 pm on November 15th, 2001, our worlds changed forever! Margaret was no longer the baby and everyone was told to make room for Grace Victoria! It's hard to believe she's already 8 years old. I often fear that one day, I'll forget all of this...forget all of these memories, which is why I'm so thankful for social networking and things like blogging, Facebook, twitter, etc. Hopefully I can look back on these times and see the craziness that we were all going through!

Right now Grace is sleeping in her room, Margaret is downstairs watching Wizards of Waverly Place, my dad is watching TV in his 'man cave', my grandpa is in the shower, and my mom and my grandma are talking downstairs. It's a big day tomorrow.

CONGRATULATIONS GIGI!

I miss you.

I miss you, I miss your smile. And I still shed a tear every once in awhile. And even though it's different now, you're still here somehow. My heart won't let you go, but I need you to know... I miss you.

We had a drug talk today at school which inspired me to write this post. Generally, I hate drug talks because they hit so close to home. So close to home. This one was a great talk, the speaker was brilliant, but it hit even closer than usual because the speaker was a recovering drug addict herself. Very recently recovering. I couldn't help but think the entire time, 'What if?'. What if my cousin hadn't moved out of our house? What if we had made her stay until she was done with treatment? What if, what if, what if? Would she still be here now? It's hard to say...I don't know. I do know that I miss Alexis like hell. Everyday I think of her. She was so special. I recently talked with her best friend, Jessica, on the phone. I reconnected with her on facebook and she wanted to call and talk, so of course, I agreed. She's a real sweetheart. She told me that Alexis adored me, absolutely adored me. She told me that she wants to keep in touch with me because I was so important to Alexis. She feels as if it's her duty to be Alexis to me, if that makes sense. Of course, I cried, she cried. Alexis was a special girl. Just as she was about to go back to college, get a degree and begin a new life...her addiction struck her again. I hate when people say bad things about drug users, because Lex was so not what I picture as a drug user. She was happy (or so she seemed), beautiful (as you can see from the above photos). She never came home without a smile. I love her so much and I miss her. Even typing this pulls at my heartstrings. I don't think my family realizes how much her death tore me apart...but it did. I miss having that 'big sister' which is truly what she was to me. Yes, she has a sister and I love her too, she's my family, but there is absolutely no comparison between the two. They're different people. Rest in peace, Alexis. I love you.

I hate cancer's F#$%ing guts.

"I screamed at the unfairness and told cancer how much I hate it's f#$%ing guts." - Amy Potvin

Since becoming more involved with Ellie and since my aunt was diagnosed with breast cancer, cancer is never far from my head. Since becoming more involved with Ellie, I've found countless more children who are also fighting this beast. And you know what, it SUCKS. It absolutely sucks. Cancer has affected everyone. Whether we "advertise" (that sounds awful, I know) it or not, everyone has been affected. Everyone knows someone who has cancer. Maybe they've had it themselves. I am absolutely, 100% amazed at all of these "cancer moms". Especially Amy, Ellie's mom. If you just read her caringbridge entries (http://caringbridge.org/visit/elliepotvin) your heart breaks with her, you laugh with her, you cry with her, you get angry at her, you hate cancer with her. She writes so beautifully and she is just as amazing offline. She has so much energy and is truly holding everyone together! Ellie is absolutely blessed to have her.

Ellie had a lung scan this week and the results showed that this chemotherapy infusion (the last one proven to work on rhabdo) has failed. Most of the tumors have stayed the same, but 2 have grown. All of this that Ellie's gone through in the past weeks and months, it didn't even shrink any tumors. What?!?! Again, cancer sucks. Big time. Moving on from here...I am confident that Amy and Tim will find the miracle cure for their daughter. Something has to be out there. Ellie is so high on energy, I believe it's a sign from God saying 'Hold on, be patient. Ellie will be cured on my time.' Ellie isn't miserable, Ellie looks healthy. Her beautiful wispy hairs and her gorgeous grin are infectous. She is the epitome of bravery and beauty. I have hope and faith in her. In God. Please, Lord, Please... Things are going well here. I can't believe the school year is nearly over. I'm incredibly emotional these past few days! (I HATE PMS.) I think it's a combination of PMS, the Ellie scan news, and just everything. There's a lot going on right now. Yesterday I cried about 10 times, no joke, 10 seperate times. 16 & Pregnant never fails to make me cry and add in that the couple is giving their baby up for adoption, let's call flood control please! Everything made me cry. But in a way I like crying. I get so annoyed with people who never cry in front of other people. (This is getting very off topic, but what the hell..?) I like to express my emotions. Because other people can help you through it. You typically don't help yourself.

Anyway, this is turning into a novel, but I just wanted to remind you to keep Miss Ellie in your prayers, keep her mommy and daddy in your prayers, and keep her precious twin sister, Grace, in your prayers as well. This beast will not win.

Life and death.

I feel like I've been...thinking...a lot more than usual. I've been taking more time to just think. I've been through some difficult times but for the most part, my life is so easy. My family is financially secure, I go to a great school where I don't have to worry about my safety and a school that I love. There have been several people in my life who have passed on...and death is so confusing to me. I don't think we can ever really understand it until it happens and well, then you can't come back and tell anyone how it goes. I know that lots and lots of people die each day...is there someone who cares for all of these people? Is there someone planning a funeral for them? Whenever I see a homeless person, I'm sad for them. I can't imagine not having a home or the neccessities essential for life...but what about death? When they die, who will remember them? It breaks my heart. What I'm trying to get at is, I want to make an impact during my life. You can't change anything once it's over. Once your life is lived, once you have died, you can't come back and say, 'Oh shit, I really didn't mean to do this...' or 'I really do love you dad, I wish I had shown it more'. It's something that I myself need to work on - if I died today, would I be happy with the way I had lived my life? I'm a procrastinator. I often wait to do projects until the last minute, homework and basically everything too. I often say, "I'll do it later/tomorrow/soon." and then it never happens but I need to change my life now. If there are things that I am doing that I don't want to be done, that I don't want me to be remembered by, I need to change them because life is a gift. It isn't a given, it's a gift. It can be taken away in the blink of an eye. A young man who graduated from my highschool a few years ago passed away last week. He was hit by a drunk driver...25 years old. A life cut short. Rest in peace.

Holly and I are in the beginning stages of beginning the nonprofit. I'll reveal more details soon but I am very excited.

A picture is worth a thousand words.

McKenna Maiorana

hopeforbabymckenna.com

twitter.com/hopeforbabymckenna

Stage 4 Neuroblastoma

Ellie Potvin

liftupellie.com

caringbridge.org/visit/elliepotvin

twitter.com/liftupellie

twitter.com/amypotvin
Stage 4 Rhabdomyosarcoma

Keegan Ray

caringbridge.org/visit/superkeeganray

twitter.com/teamsuperkeegan
Neuroblastoma

Kate McRae

prayforkate.com

twitter.com/prayforkate

twitter.com/aaronmcrae
caringbridge.org/visit/mcraekate

Brain tumor

Layla Grace Marsh

11/26/2007-3/9/2010

laylagrace.org

twitter.com/laylagrace

Stage 4 Neuroblastoma
Rest in peace, sweet angel.

These kids are all fighting for their lives. Layla Grace lost her battle. Only time will tell if McKenna, Keegan, Ellie, and Kate will win theirs. But truly, they have already won. Layla won. Layla is healed. She is not healed in the way that all of us hoped and prayed for. We asked the Lord to cure Layla Grace of her cancer and restore her to being a typical, happy 2-year-old. But that was not His plan. He did cure Layla, though. She is cured and she is looking down upon her mom, Shanna, her dad, Ryan, and her beautiful sisters, Jenna and Claire.

McKenna, Keegan, Ellie, and Kate are all fighting a very long road, a long battle. The battle doesn't end when the doctors declare remission. This battle is lifelong. It breaks my heart to see kids like this. Looking at the pictures above, you see pain but you also see peace. Kids have a way with dealing with hardships and obstacles that adults do not have. Kids live for the moment. These children aren't worried about tomorrow - they are living for today. As humans, all people have worries and fears. But our fears are so insignificant compared to what this precious angels are going through.

Today, I couldn't get Layla Grace out of my head. Every word I spoke and every thought that ran through my head, I just heard echoes of "Layla..Layla..Layla". It made me sad but it also made me happy. Layla will not be forgotten. She did not die in vain. She gave hope and inspiration to so many people. She'll always be remembered for that.

For now, all of these children above (besides Layla Grace) have a long journey ahead. Chemotherapy for some, radiation for others and for all of them, there is a hope and faith that remission will be in the near future. There needs to be a cure for cancer. Cancer is taking so many people each day...cutting so many lives short. We all have to come together to tell cancer, "STOP! YOU CAN'T take Ellie! You CAN'T take McKenna! You CAN'T take Kate! You CAN'T take Keegan! And DAMN YOU for taking Layla Grace!"

I hate cancer. It sucks. Sucks doesn't even really cover it. Getting a pimple sucks. Cancer is evil, vile, just awful. And it effects everyone in some way. Someone that you know has cancer. I can only pray that there is a cure in the near future.

Please pray for McKenna Maiorana, Ellie Potvin, Keegan Ray, Kate McRae and for the loving family of Layla Grace Marsh. Please pray for those who aren't listed above of course, as well. Kids with cancer are so special. They have a spirit to them that is amazing and a blessing from God.

Dear Lord, we ask you to heal these children. Let your will be done, Lord, but pretty please let these beautiful children live long healthy lives? Help their families to be strong. And please tell Layla Grace a special hello from all of her loving supporters her on Earth. Take care of her, O God, watch over her and help to ease her family's pain. Amen.