For the last two years, I have written to Ava on Valentines Day. This year is no different. I want her to know how strong she is and while the sibling of a fighter can sometimes go unnoticed, she is never in the shadows in my mind. So this is my tribute to all the siblings out there and my Valentine letter to My Ava.
First a note about cancer siblings… they are thrust into a confusing, scary and unforgiving fight too… as Ava says “Cancer is a family fight.”
- The sibling of a child with cancer (any life-altering illness I would think) is most often the unsung hero in the fight. The siblings are the ones who pine away, trying to make sense of so much they don’t understand while doing their best to keep everything normal.
- They are the ones who bring the biggest smiles to their brother or sister; the ones who are bounced around from grandparent – to aunt – to friend’s house while the parents are focused on their ill sibling.
- They are the ones who see the patient leave the house to head out for an inpatient chemo and not return to them a week later sick and ill from the effects of treatment and think the parent hurt their brother.
- They are the ones who pray for life to go back to normal, to “help my brother beat that mean cancer, so we can play power rangers again.”
- They are the ones who have all the games planned out for the siblings return, only to be disappointed when their brother or sister doesn’t feel like playing.
- They are the ones who are pulled out of school because the doctors said there is nothing more we can do.
- They are the ones who sit on the couch with their headphones on trying their best not to listen to the cries of a parent after the doctor leaves the room.
- They are the ones who, at such a young age, don’t understand death… don’t understand that when the casket is closed, it will never reopen.
- They are the ones in a state of constant confusion.
- They are the ones who wake in the middle of the night crying because they can’t remember the last thing he said.
- They are the ones who are angry because they feel like hope was a lie.
- They are the ones who feel like a failure, while the other is hailed as a hero.
- She was the one who was told she was his best medicine, which, in her mind, should have saved him.
- She is the one who took the BEST care of him.
- She is the one whom he called out for.
- She is the last person he asked for.
- She is the strength in our broken world.
- She is the one who found the words to honor him in front of hundreds.
- She is the one who was able to play under the willow tree, who not only found a smile for herself but one for the rest of us too.
- She is the one who asked “how do we help all the other kids?”
- She is the one who says “I bet Heaven has the BEST… birthday cakes, Christmas programs, swimming pools, oceans, etc…”
- She is the reason we are able to fight Sam’s fight.
- She is Sam’s greatest legacy.
- She is our Saving Grace
- As Sam said countless times, she is “My Ava.”
To My Ava,
I hope when you’re older and you read this blog, you are able to see yourself the way we see you. You are the most beautiful person I have ever had the pleasure to meet. You have a humble beauty which exudes from you through the way you consider others, give of yourself, and through the way you walk with grace. Your internal beauty matches your outward beauty in every way. When life gets too heavy or too hard, you always find a way to get a smile out of those around you. You can read when someone needs a hug, when someone needs to be alone or when someone needs to “just be held” as you sing all the time.
Over the past year, you have marched in DC to tell the world your brother is worth #MoreThan4. You have written your legislators. You have spoken with national leaders. You have launched your “Ava’s Avengers Sibling Support Packs,” and all the while you were finding your way in this world with Sam on your shoulder, not by your side. You have worked through grief to shine light. You found a new love for swim team, caught up in school, and found your sparkle again. You made friends from all over the country who were eager to hear your story, but you wanted to hear theirs too. When a mom at CureFest said “I’m so sorry sweetheart, about your brother.” and you looked right back at her and said “Have you lost someone too?”… then “I am so sorry you lost your son too. My mommy had to do that and it’s SO so hard. I’m very sorry you had to do that too.” She looked at you, then up at me with tears in her eyes and said you have a special one there… I said, “I know. I sure do.”
On your birthday last year, you shared your party with a balloon release for Sam. I asked you if you wanted to privately send a few balloons up for him from his resting place, and that just wasn’t good enough, it wasn’t good enough for Sam. You shared your party and 100 balloons were released with a prayer for All the Kids. You later told me, “Sam and I will always share a birthday, it’s only right that we should always share our party too.”
Shortly after Thanksgiving, you got sick and have stayed sick off and on since then. You had mono and are still feeling the effects, yet when you had your blood drawn and tests ran you said Sam was sending you signs – it was all going to be okay. After you spent the day at the hospital for testing, you asked to go see Sam. This is something you rarely ask to do anymore, especially at night (which it was). When we arrived, I barely had the car stopped, and you ran to him. You ran through the snow, tears streaming down your cold and rosy cheeks. You fell to your knees in the snow wiped his stone clean and cried… You told him you really needed him that day. You thanked him for watching over you, and that you knew nothing bad will be on the tests because you are here to finish out his mission. You sobbed and thanked him for giving you the strength to know you’d be okay. You kissed the photo on his stone, bowed your head and prayed “Dear God, Please keep me healthy, so I can help Sam here on earth while he helps you in Heaven. And please tell him we need him here too, we miss him and love him…. Amen.”
Ava, you have no idea the impact you have on me. You don’t know what your strength does for all of us, so when you read this, know we are all in awe of you, proud of you and grateful for you. We love you Ava Bug.
Love with all of my heart and soul… to the moon and back,
This article was originally posted on Sam’s CaringBridge site.