All For Noah
Updated: Aug 10, 2019
[Edit: 10 ways to honor Noah have been added to this letter as of today, his birthday, August 10th, 2019. & while they are especially meaningful today - if he ever crosses your mind and you find yourself wishing you could do something for him these are just a few ideas].
I'm not sure if you even knew that you are the reason this business actually became a business and didn't just stay an inside joke between Kasey and I.
When she tagged me as "Victoria Grace Photography" we laughed - and then people asked how much I charged. I don't remember the exact dollar amount but I think I told people if they'd donate 25-50 dollars to your Great Strides Team that I would do a photo shoot for them. Eventually I was missing work and had to tell people I couldn't just do them for donations anymore.
So a senior named Savannah told me she'd pay me for photos.
& that's how this business began.
Because of you.
When mom called me to tell me you were diagnosed with Cystic Fibrosis I was at WCU. I remember crying with my roommates because Google wasn't friendly and you were all the way in Texas. Then an episode of Grey's came on about a kid with CF and I lost it. You and Emily and Mom had very separate lives from me - and I felt that rift sometimes and it hurt, other times I was kind of thankful for it because it hurt to see mom and Emily hurt for you.
I have lots of photos of the three of you and Sawyer that I've taken. & I'm part of those memories but I'm just out of frame behind the camera in many of them.
& I feel just out of frame right now.
Reading details about your last moments here on Facebook and hearing about them on the radio has been hard. I've been all over the place emotionally and that's fine because that's how grief works. Part of me wants to stay separated from the situation entirely and pretend it isn't happening and the other part just wants to hug my mom.
I'm heartbroken that I didn't make it on time Sunday with dad for him to tell you goodbye. He so badly wanted to get there in time.
His birthday won't be the same this year - since you've celebrated it together so many times.
The photo of mom's face snuggled up with you broke my heart and not being able to talk to her or see her the day it happened or in the days after it broke it again because for years I've known losing you would hurt - and I've worried about what losing you would do to her.
I've been telling people for years that I feel guilty for keeping you at a distance, but I knew that losing you would break my heart like it broke my mom's. Broke Emily. Broke Olivia. & I didn't want to break with them because if I broke with them I couldn't be there for them if they needed me at some point in the process. I can't break because the twins need me.
Emotions from losing you come in waves.
Waves of anger.
Waves of sadness.
Waves of exhaustion.
Waves of denial.
Then it starts again.
Then it repeats.
I know you know I loved you.
Even if we don't have 35908 photos together.
I don't know if you know that I'm the one that taught baby you to say, "Mine!" "Mine!" when you pointed at something, much to mom's disdain. Or that I got a tattoo right after you got diagnosed of a poem that reminded me of you. It's purple because that's the color for CF.
I don't know if you know how many times I wasn't around for things even when I wanted to be because one of the twins had sniffles and we didn't want to risk getting you sick. I hope you know I love you as much as I love Sawyer - and that we only saw him more because he and the twins are the same age and they did toddler things together you were too cool for.
Brooklynn and Chloe are sad they won't see you again.
Brooklynn is particularly sad because she wanted to buy you a Pusheen train for around your Christmas tree and now she can't. I'm not sure if they even make them - but we will put a train around our tree for you. Pusheen or otherwise.
I don't know who mom or Emily or Olivia will be now that you're gone.
I do know they are all better for having known you.
Mom was the best version of herself for you.
Emily probably wouldn't have been the kind of mom she is without having helped raise you.
Olivia has grown because of you.
My life would be unrecognizable without you.
I know without you I never would have done my first "official" photo shoot because I never would have been comfortable charging money and I wouldn't have had the idea to donate the money to your Great Strides Team so I would have just said no.
If I wasn't a photographer I wouldn't have had the ability to move to Andrews, NC when I did.
If I hadn't done that - the twins wouldn't even exist.
The butterfly effect is mind-boggling when I think about it.
Several people have messaged me to let me know that they are becoming organ donors because of you.
That their children are organ donors because of you.
That if they lost a child they'd donate organs because of you.
People are alive because you donated your heart - and that both breaks mine and fills it with pride.
If I could be at your service Saturday I would thank you for giving me the best version of my mother for the last ten years. I have to be at a wedding - at the end of the day I still have to make sure the twins are taken care of and that means I have to work, even if my heart is broken that I'll miss it.
I would tell you that I've been in one fist fight ever and it was over you - and you weren't even born yet but I have wanted you to be safe since before I even knew you. I would tell you that I regret letting you introduce the twins to Pusheen because now they spot them and "have to have them" wherever they go (teasing). I haven't fought for you in the way that mom had to - but I fought for you in my own ways throughout your life.
I would tell you that I see dragonflies and think of you.
I see the color purple and think of you.
I see roses and think of you.
I think of you when I read poetry or hear lyrics about breathing.
I think of you when I pass video game advertisements or super hero posters.
I cry when I hear certain songs because they remind me of you.
I wasn't the person closest to you.
Not even the Top 10, but it doesn't mean I didn't love you or that I don't feel this loss - a loss I've been dreading since you were a baby and hoping it didn't happen. A loss doctors told us to expect years ago that I still wasn't prepared for.
I can't believe the last time I saw you was the last time.
I am, however, thankful that the last time I saw you that you were happy even if you were also hurting. & I'm glad the twins were with me.
That Pusheen comic will be printed and framed and it'll remind me that you were a kid that knew how to find things that made him happy even when you could have given up on finding it a long time ago. A kid who got excited about the little things.
A kid I am forever thankful to have known.
Thank you for changing my life in ways I can appreciate and in the ways I'll never fully understand.
& Thank you for smiling for my camera even though you low-key hated me taking your photos.
PS: I wish the money we'd raised through COTA could have been used to save you. I am, however, so thankful that money will help another child/children at another chance at life so that their family doesn't have to go through what we are.
For his birthday Debbie Fett of Amber's Angels is collecting new Pusheen toys for the children at Dell Children's Hospital, where Noah was diagnosed and treated the first half of his life. His birthday is August 10th - if you'd like to donate one to a child you can order one here from a wish list on Amazon [the twins and I picked out three].
10 Ways to Honor Noah:
1. Light a white candle on his birthday [8-10] like mom is asking. 2. Send a new Pusheen toy to your local hospital or Ronald McDonald House. 3. Call the Chapel Hill RMH and make a donation of any size in his name; something as small as $5 still helps. 4. Make sure you are an organ donor and that your family knows you are - www.donatelife.net 5. Share his story and encourage your friends / family with children to decide NOW when grief isn’t a factor that God willing should the worst happen to allow their child to be an organ donor. Mine would be. I hope they never are - but they world be. Noah’s heart saved lives; literally and figuratively. But if a parent hasn't decided that prior to losing a child the decision is so much harder. 6. Share the happiest / funniest memories of him you’ve got and photos of him you have that mom or my family may not without tagging mom - just use the hashtag #AllForNoah - she’ll see them when she’s ready. Being tagged in posts about Noah unexpectedly hurts her sometimes because they catch her off guard. Mine? Teaching Noah how to say "Mine!" to everything he could see. 7. Message Pusheen and thank them for making him so happy by making him a comic right before things got really bad - and for giving me that day as my last memory with Noah. I have, multiple times. 8. Call and make a donation to Chapel Hill’s Children’s Hospital in honor of Noah - because they gave us more time with him. 9. Wear your “All For Noah” shirts and hats tomorrow. 10. Send ten people you love a sincere message or call them and tell them how much you love them; one person for every year Noah was here. I see someone lose someone almost every day on FB. Life is short. Noah’s was way, way too short. & tomorrow isn’t guaranteed so maybe tell those people how much you love them today instead.
10 ways to honor the world’s bravest 10 year old boy.
If I have ever taken a photo you cherish - that's #BecauseOfNoah, truly.