- in what ways are you proud of Peyton?
I am proud of Peyton's fighter spirit, and the way she never complained. Here this kid was going through the most awful types of treatments and medications imaginable, and she greeted every day with bright eyes, just ready to take the world around her in and be held. She rarely cried, except for during diaper changes of all things (she hated those), but there were some awful moments towards the end where any adult would have crumbled, and she just soldiered through them. I think there is a lot to be learned (and I am still working on this) from someone facing each day with such a great attitude despite the battles before her.
-What things are most precious to you about her?
Most precious to me about Peyton was her unguarded love. There were moments where she should have been exhausted, but for our sake she would stay up for hours staring into our eyes, or cuddle up, even when doing so meant more bruising (because of the Leukemia.)
- other than the obvious (Peyton not being here) is there anything you regret doing/not doing?
My greatest regret is that Peyton was never surrounded by pure joy. There was always an intense undercurrent of sadness. All children deserve to be surrounded by joy. In this way, I really feel I let Peyton down. We just didn't know. We didn't know our time would be so limited. Every day was a sort of panic mode, trying to get from one step in her treatment to the next. There were so many obstacles to overcome. I wish I could have not focused on Peyton's future, and just enjoyed her in her "present." That's not to say we didn't have beautiful moments, and we always smiled at her not wanting to let on how scared we were, but it wasn't pure joy and she deserved that from us.
-Is there anything you are especially pleased you did do?
Breastfed her and did skin to skin time with her. It was the only "normal" mother child thing we could do in the hospital, and I relished every moment of it. I know she did too. She would pick up her head, look around (a skill I was really proud of her for doing since she was such a little newborn) and sigh before laying her head back on my chest. On my really dark days, it is those moments I cling hard to. They remind me that she was here. She was my child. We had that bond.
- if you had to chose one word to summarise grief what would it be?
- if you could change one thing about how the world around you responds to your grief what would that be?
How unfairly judgmental people can be. People tend to see Peyton as less than a person because she was such a little baby, and me as less than a mother because she never came home. They say things like, "at least it didn't go on longer" or "at least she didn't come home with you because THAT would be really hard." My daughter is dead. A day old, a month old or 100 years old, that doesn't matter. She was still my child. I also really hate the way certain people use the "Everything happens for a reason" mentality to justify her loss. I have had two seperate people tell me that "maybe it is God's way of saying you aren't meant to be a mother."
Was Peyton a happy baby or did her illness overshadow that?
It took ALOT for Peyton to complain. She did alot of smiling and looking around, she loved being held. I think she was a very happy baby. Happier than most adults would be in that situation. I think the situation overshadowed our joy, not hers. Alot of people, I think, assume because of her age that she was this sick little thing in an incubator. She wasn't. She always looked older than her age, she had a sort of wisdom in her expressions, and was very interactive with us. That is what made it so hard for us to accept how incredibly sick she was. We would get horrible news, come back to the room devastated, and she would look at us like, "Hey, what's the big deal. Look at me, I'm fine." She was our greatest cheerleader.
What is your favorite color?
I never really had a favorite color, I have always been more of a wear black and white kinda girl. Now I would say yellow because since her passing, yellow butterflies tend to visit us alot.
What kind of books do you like to read?
Since her death, sleep is an issue with me, so I make a point to try to only read "happy" books before bed. I love Janet Evanovich, Sophie Kinsella, Nicholas Sparks. That being said "The Kite Runner" and "Bobbed Hair and Bathtub Gin: Writers Running Wild In The Twenties" are two of my alltime favorites, and I am addicted to reading anything that has to do with writing.
When people ask you if you have any children how do you respond?
I have alot of trouble with this. Usually I blurt out that I did and she is dead and everyone stares at me blankly sort of shocked by it all. I have not mastered a way to answer this without making a spectacle of myself. On the days I am thinking the most clearly it comes out like, "Our daughter died of Leukemia." But usually, like I said, it is more jumbled with emotion. That being said, I never say "none." I do have a daughter, dead or alive, she is still mine.
How is your coping with grief different than your husband's?
I wear my emotions like a Scarlet Letter. My husband keeps his all in. There couldn't be two people who grieve more differently than we do. We heard early on how so many couples divorce after losing a child, especially a first child, and committed to respecting each other's grief, even when we don't understand it. For me that means not saying anything when he can't answer the above question, and him not judging my need to write so much or go to therapy. Neither of us grieves better, just totally different.
When did you get Peyton's cancer diagnosis, in utero or after birth?
When Peyton was born via c-section the doctor told me "you have a beautiful, perfect little girl." By the time I was wheeled back to my room, she rushed to my bedside to say, "Something is very, very wrong with your baby." They had given Peyton some routine shots in the nursery, and couldn't get her to stop bleeding. It was very traumatic and completely unexpected. Within moments of Peyton's birth we were signing papers to authorize blood transfusions and to have her transferred to another hospital. It would be three days before I could even hold her. I hate to say this, but it is true. Peyton's birth was the second worst day of my life. Her death the first.
Do you think grief has effected your marriage?
Yes. There were days, especially in the beginning, when I felt toxic and jinxed. I love my hubs so much and would beg him to just leave and start over somewhere else with someone else who could give him healthy kids. I never wanted him to leave because I had stopped loving him or anything like that. I wanted him to because I loved him so much that I hated the feeling that I was holding him back from having a family. Luckily, he didn't listen to me. My husband and I have come through this committed to making it. We face high divorce odds because of the loss of Peyton, odds that are compounded when you add in our infertility issues, and that we don't share the same religious beliefs. There are things that on paper would spell out trouble, but we cross each pebble, rut, and mountain together, because we love each other. We have been dealt a tough hand of cards, but they are our cards, not mine, not his, ours. The sooner a couple in this situation realizes that, the better.
Do you feel like you really got to know Peyton well in the NICU, or do you wish you got to take her home?
I wish I could have taken her home, but by the time that was an option, it was as a Hospice situation. Peyton was suffering so terribly at the end, that I worried taking her home might bring more pain than comfort. That being said, I got to know Peyton. I got to know that she hated the cold hitting her bottom. I got to know that she loved skin to skin time, being held, and kissed and rocked. I got to know that she would fight off the pain of cancer, and chemo, and a mass in her brain, and spinal taps, and debrieding surgeries, and a horrific fungal infection, to stare into our eyes. The night before Peyton died, she stayed up for hours looking at us. It was the greatest gift she could have given us. I think of how hard that must have been. How much she must have wanted to give in and rest, but she fought through it never letting on to how sick she really was. I definitely got to know her, and I am so proud of the little girl I got to know.
Where do you live?
We live in a sleepy little town in Connecticut surrounded by rivers to tube, mountains to hike, and paths and trails to explore. I love the outdoors and nature. To me, this place is a little slice of Heaven on Earth.
What do you do for a living?
I had a great job and growing career in medical sales when I had Peyton. After she died, I wasn't able to go back. Confidence is what made me really good at that job, and my confidence was completely shattered. It was recommended early on that I do some journaling to get through my grief, and now I write. And write. And write. I have written a memoir about Peyton, some short stories, these blog posts. I don't write for a living, but writing keeps me alive.
What do you think is the biggest lesson grief/Peyton has taught you?
I would love to say something inspiring here, but it would be a lie. The biggest lesson this grief has taught me is how quickly all the plans you had for your life can fall apart. The biggest lesson Peyton has taught me is how deeply you can love someone.
My question is simply this: what piece of advice or wisdom you would share with someone who has just lost their baby?
Keep breathing. Even when you feel like you can't, when your chest is so heavy and you don't know what the point is in going on, keep doing it. Just take one breath, and then another. Be kind to yourself, and don't worry about what others think you should be doing or feeling. They aren't you. Even if they too lost a child, they didn't lose YOUR child in YOUR particular circumstance. Do what feels right in your grief, when it feels right, and when you feel up to it, find an outlet. Jogging, writing, boxing, art. Find an outlet to bear some of the burden of what you are carrying with you.
What is your most precious memory with Peyton?
Doing skin to skin time at the hospital. She would let out these adorable little sighs as she lifted and readjusted her head, and the minty sweet milky smell of her breath would waft up to my nose with each little exhalation. I had never felt so needed in all my life.
What has been the most helpful form of support for you following the loss of Peyton?
It has been a mix of things. I have wonderful family and friends, and an incredibly capable therapist who have allowed me to feel what I need to feel when I need to feel it through this loss. I have a husband who loves me even when he doesn't understand me, and have found a community online that knows, truly, what it is I am going through. I think it has also been so important to be allowed to grieve on my own time in my own way. This isn't something that can be rushed according to someone else's timetable, and anyone who thinks it can be, has never lived it.
When Peyton has a sibling, what things will you do to help them "know" her?
Peyton's name is spoken in this house every day. She was made of our love and her death doesn't change that. If we are blessed (knock on wood) to have other children, her name will continue to be spoken every day, so our kids will definitely know that they have a big sister looking over them. She is as much a part of this family as any of us. I have heard some cute ideas too, for when they are older, of hanging a stocking for her at Christmas for everyone to write notes to her in. I like that. We will also do Doing Good In Her Name as a family, and decorate the Peyton Tree together over the holidays. The only thing we might not do as a family is watch the videos of her, because towards the end, they are hard and might be difficult for little ones to see.
Did Peyton ever get to go outside? I know that you probably had to be very cautious about exposing her to germs...just curious.
This is one of my greatest regrets. Peyton never went outside, except the ride from one hospital to the next in an ambulance. If we had known her time was so short, I think I would have pushed for it. I honestly didn't even know that taking her outside was within my rights to do. The fact that she never felt the sun on her face is something that keeps me up at night.
When you think of Peyton, do you think of her as an 18 month old toddler or as a 4 week old baby?
I think of Peyton's spirit more than her age. I talk to her all the time, but not in a cooing little baby way, more just in conversations. I often ask out loud if she is tired of me burdening her little baby ears with all my complaining. I think because she had such an "old soul" look to her eyes, I always took her for being wise. That's the way I see her. I had a couple really vivid "dreams" about Peyton. In one she was young, maybe 5 or 7, in the other I saw her go through her whole life, so I guess I sort of picture her all different ways. The other day a woman said that she had a seventeen month old at home, and I tried saying that out loud to myself, "I have a toddler, I have an eighteen month old." I couldn't even imagine it. It felt foreign to put an age on her.
Do you have names picked out for Peyton's siblings?
No, haha. To be honest I didn't have Peyton's name picked out either. She was going to be Scarlett or Finn. Then, in a drug induced haze during the C-section I popped out with Peyton. Not wanting to argue with me while my uterus was sitting on my chest, hubs just sort of went with it. When I got wheeled back to the room I asked where Scarlett was and hubs said, "Scarlett? You said Peyton. I told everyone Peyton." Those were some serious drugs.
Does your husband read your blog?
No. I mean he has here and there, but he doesn't because it brings back memories that make him sad.
What is something silly about you; weird habits?
*If I really like something that I am eating, I will sort of dance around in my chair. I don't even realize I am doing it till hubs points it out.
*I took five years of Spanish and can hardly speak a word, unless I am drunk and wandering the streets of Mexico where I become inexplicably fluent.
*I am TONE DEAF but love to sing. In church, hubs will ask me to stop because I am ruining the moment for him. Being that he is agnostic, that is saying alot.
*As far as weird habit, I have tons of them. I can't sleep if the closet doors are open.
As a child, what were your dreams?
I wanted to be garbage truck driver/stand up comedian until I was like 7. I don't know why. Just did.
Since then, my dream has been to write.
What is your favorite memory of Peyton?
I already answered this, so I will add another. One day she was being changed and she started to cry and hit this really high note which seemed to shock her. It was like she had found something new, so she shot me this look like, "Hey mom did you hear that?" and went back to it again. She was only a few weeks old at the time. Suddenly she wasn't crying anymore, just hitting the high note because she could. She seemed very proud of herself.
If you could send her a message and know that she would receive it, what would you say to her?
You were loved. You were wanted. You still are. I'm sorry I couldn't do more.