Sunday, January 30, 2011

I was going to...

I was going to write a post here about the steps I have been taking in the right direction.

I was going to talk about how I got the courage to go into Peyton's room, and to wash the unused baby clothes in there in preparation for the snowflake's arrival.

I was going to say how big a deal this was for me.

How I must be healing.

How having this beautiful positive event in my very near future was bringing a sense of closure to my pain and anxiety.

I was going to say all of these things, and then tonight I went in to grab the last few items from her dresser, and I came close to the plastic bag - the one on the floor with her clothes in them.

The bag that has sat untouched,
unwashed,
unattended to,
since the day she died.

And I started to panic.

To panic about things that no one else panics about.

To panic that in being in the room with clothes that had chemo on them, maybe I had exposed myself and the snowflakes to something I shouldn't have.

To panic that the chemo on the tiny clothes in that secured bag may have somehow gotten onto other items in the room.

To panic over fears that wouldn't make sense to anyone else because people don't have babies born with cancer.

People aren't forced to start their child on chemo when they are just 6 days old.

They don't know what it looks like and feels like to hold a 28 day old little girl as she draws her final breath because the chemo has ravaged her body beyond repair.

People don't have to wonder two years later if using items that have been in the same room as a bag of clothes with chemo on them are going to equal some devastating exposure.

Exposure.

Exposure.

Do you see a theme here?

Exposure.

How am I supposed to relax when I am afraid of everything?

I see dangers in everything and feel so much pressure.

Pressure to protect them.

Pressure to keep them safe.

I am responsible.

I am their mother.

But how can I protect them when I couldn't protect her?

I tried my hardest, and it still wasn't good enough.

I didn't lose Peyton to some condition that the risks of can be ruled out at some point.

I lost my child to cancer.

EVERYTHING has been linked to cancer.

P.A.L. might as well stand for Paranoia and Anxiety after Loss because that is where I am tonight.

I was going to write something uplifting here about facing forward with a renewed faith in the future.

I was going to,
but then the triggers and the fears came for me instead.

28 comments:

  1. I am terrified of everything when pregnant. Even things that sound ridiculous when I say them out loud. I can't get it out of my mind that it might hurt or kill my baby...today I even wondered if I should still use the same exercise video I used with Jacob because he died and maybe something in the video that I did caused it.

    I wish there was some way to not worry about things, to be a "normal" (aka, never had a loss) pregnant women, but we are stuck.

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  2. Even in my pregnancy with Angus, I'm almost ashamed to admit having a child with cancer wasn't amongst my fears. It wasn't my experience, it wasn't what I knew.
    I hate how damaged we are by what happened to us. I know I was terrified of having a perfectly healthy baby die inside of me at the end of the pregnancy without warning, just like that. Sometimes I really think I had the blinkers on and could only worry about so many things at once. It is terrifying to think of how many things there are out there, lurking in dark corners.
    I wish you didn't have to worry about these things.
    I wish Peyton was born perfectly fit and well.
    I wish she was here and excited for the Snowflakes arrival.
    I wish cancer didn't have to be something you feared every day.
    Here supporting you all the way.
    I think you are doing such an amazing job.
    xo

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  3. Honey, I wish I had words. I worry every single day that something is going to cost me one or both of Bobby and Maya. It takes all that I have in me to keep the fear at bay and enjoy every second of every day with them. Because, really, who knows what tomorrow holds. I hope it holds me... holding them... but I dont know. And that scares the shit out of me.

    Sending you loving thoughts and hope for happy tomorrows.

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  4. Even though I am not pregnant, I have many fears like you Kristin. I want another child and it scares me to think I could have another child with Down Syndrome and or with a heart defect. I also too worry about other things like what you and Angel have been through. I know this may sound silly but Brandon who is nearly 22, worries me. He is on his own and away from me and everyday I worry about him. Worry that something is going to happen to him. The pain of leaving Zachery's house and Brandon moving on his own at the same time is hard.

    I am almost as excited as your are for the arrival of the snowflakes.I pray for you Kristin and your snowflakes and of course Peyton. Thinking of you and sending you hugs.

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  5. You write so beautifully and have been through so much... thinking of you xo

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  6. I wish you didn't have to go through all this pain. I wish I could say or do something to ease some for you. I wish I could hug you right now. I have thought about packing JD up one day & taking a trip to see you just so I could give you that hug. I am always thinking of you Kristin. I wish we both never had to feel any of this pain.

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  7. What you wrote here really hit home with me tonight. I, too, was going to go do some things in my Little Bee's room - and all of a sudden I just couldn't go in there. I don't have anything specific to worry about - but the general fear that my body will somehow kill this baby too is so overwhelming.

    Here's hoping that tomorrow will be the kind of uplifting and happier day that we wished today could have been.

    Big Hugs!

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  8. Oh Kristin, I am so sorry. I don't have any sage advice but I just wanted to say I wish I could help you somehow. {{{Hugs}}}

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  9. I so wish you didn't have to go through this. I wish you were still innocent. I certainly can understand your fears. Sending prayers for you, dear. I don't have any advice, either, but I wanted to let you know I'm thinking about you.

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  10. Thank you so much for your gorgeous comment on my blog... I was feeling as though the babyloss and infertility journey was a long and lonely one, until I started blogging a week ago :)) xo

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  11. I'm so sorry I don't have the words or abilities to make this better. Your babies are lucky to have you as a mama.

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  12. It sounds like the classic symptoms of Post Traumatic Stress Syndrome to me...

    http://anxietybc.com/sites/default/files/hmptsd.pdf

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  13. I don't know what to say. I am just going to pray for peace!

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  14. I wish you didn't have these fears. I can understand them. Wish we lived closer so that I can help you in some way. Thinking of you and your sweet babies, ((HUGS))

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  15. I am not sure how I came across your blog in the first place...but your story is so gripping...my heart has been very touched by your brave little Peyton who was such a special baby...
    I have experienced loss in my life, but I won't relate them to the level of your loss. What I wanted to tell you is that I so appreciate how honestly you share your feelings. My son was born with a rare overgrowth syndrome. He has a 1:10 chance of developing cancer in his abdominal organs...so I do know about fear that a mother shouldn't have to think about...

    Your post made me think about a plastic bag I have in a drawer in my bedroom. My son was born with a tongue that was too large, so he had surgery on it when he was 13 months old--to help prevent jaw surgery later on. After the surgery, he wouldn't take a paci anymore or nurse...I knew it was going to happen and prepared myself... but for some reason, I have kept this hospital zip lock, with his paci and the string that holds it since his surgery. I havn't opened it, and can barely look at it...it makes me cry. When they wheeled him off to surgery...he had it, and when I got it back, it was in that bag--labeled "biohazard". It represents so much for me...all that we went through in the first 18 months of his life..the journey we have been on since...and additionally, I miscarried a "surprise" baby just shortly after his surgery. I havn't told anyone, but I am confident that I miscarried the baby because of the stress we were going through at the time...combined with the hazards at the hospital. I didn't know I was pregnant when we were there for his surgery...but in the PICU with him, they kept taking x-rays of nearby patients...they would say (usually too late to jump up and leave) that anyone who could be pregnant should leave the room....so, just as a precaution, whenever I could, I would leave...but sometimes they took them before I could leave the room. I told myself...I'm not pregnant, this is silly....but then I got a positive pregnancy test the day we came home from the hospital. 9 days later, I lost the baby...it just didn't seem like a coincidence.

    I've been feeling like a freak for having such emotions about that little hospital bag with a paci in it...until I read your post today. It put things in perspective for me, which is why I wanted to comment, and tell you thank you for all of your honesty here.

    I'm so sorry for all you've been going through. I know there aren't really words that I can say to make it any less difficult, but I wanted you to know that you and your little ones are in my prayers...I pray you will be blessed with more joy than you know what to do with in the days ahead...

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  16. I am so sorry. I just know that I too will be paranoid once pregnant for a second time. I already am...doctors tell me that I can work while pregnant...I feel it was linked to me getting preeclampsia.
    I am so sorry about the fears of exposure too...I don't know what it's like to have a child die of cancer but I do know the fears of having a micro preemie that lives for 7 months and dies of liver failure...for what? TPN. I have fears of another pregnancy going bad and another child losing their life due to being a preemie. I think you have done a fabulous job with the snow flakes. I DO believe they are healthy and that they WILL come home safe with you. You ARE a GREAT mother. Don't doubt yourself, you have done amazing! I hope this helps. I'm thinking of you, let me know if I can do anything for you.
    ~Felicia

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  17. My daughter miscarried two but is now 11 weeks with #3. I worry about everything, especially since we don't have any clue as to the why's. I know it is not the same, but it is hard for me, especially since they live far from us. I am inspired by you and your family. Your refusal to give up, and your determination to hang on and move forward as you are ready. You and your family are always in my prayers.

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  18. I am 27 weeks pregnant with our fifth daughter. I only have two living... two passed away from a rare mitochondrial disease at ages 2 1/2 and 2 months old. The daughter we are expecting, like all of her sisters, has a 1 in 4 chance of having the disease, for which there is no cure. This pregnancy was not planned, btw.
    I know what you are feeling... but aren't your chances of your babies having cancer low, since they were "selected" during the invitro process? With me, a 1 in 4 chance of going through the loss of another baby is very stressful. We won't know until the baby is born if she has it or not.
    Just so you know... you are not alone in your fears.

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  19. I too am paranoid even though my kids are healthy, but they have had accidents and a scary hospitalisation, and I feel that I am never completely free of the fear that you never know when something bad could happen out of the blue. Still, it might help you to talk to a counsellor or something? Your pregnancy and post-pregnancy hormones are not helping, they make us women even more vulnerable (I went into a 2-yr depression after my son almost died from a sudden illness at 5 wks old even though he came out healthy in the end). Please, talk to someone if you can, I'm sure this is normal after the tragedy you've been through but I hope that somehow it can be eased for you especially for when the snowflakes come. Hugs to you, Anna

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  20. I am so sorry that loss has robbed you of so much of the joy you are entitled to not only in day to day life but in your pregnancy. I wish you more moments of peace than not and could not be happier to see that little pregnancy ticker on your site that says you have 40 more days to go.

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  21. Thinking of you everyday.

    Exposure. I think of that every day too.

    Exposure to pain...exposure to PAIN. I want to run from it...run from the pain of loss.

    I want to be told by some wise old woman that all will be well, and be able to believe it. With all my heart.

    I know better...I know that exposure is always there.

    It terrifies me.

    But...I still am hoping. For you. For me. For all of us.

    A gift is packed up and ready to go at the first of your contractions....look for it. The sound of snowflake music will heal us all.

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  22. I am so sorry for all you have gone through, losing your beautiful Peyton and losing the innocence of pregnancy. I am sorry you have so many worries, how can you not worry when you have experienced a loss like yours. I wish you peace and I will keep you and your snowflakes in my prayers.

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  23. i just wanted to let you know that Peyton is beautiful. im so sorry the aftershocks of her gorgeous and tragic life continue to touch everything around you. i understand, to some extent, the plastic bag. i understand, to some extent, the fears. things you wouldn't have if you didn't have that precious girl. im praying you start to feel more of the sweet and less of the bitter as time goes on.
    xoxo
    lis

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  24. I just came across your blog, and although this has brought me instantly back to those moments where it comes flooding back, I can not thank you enough for your words. The loss of innocence, the exposure, the fear..... it does not go away. I hate that every time someone tells me they are pregnant I am quietly hoping they never have to experience what I did. I hate that I am now so connected to 1% out of.....I am however grateful for not feeling so alone in this mother's world. Thank you for this.

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  25. I am so sorry that you have to think of things like this.. I am thinking of you...

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  26. Thank you for sharing and I am sorry that these are the things that go through your heart and your head. I am also pregnant since losing our son to CHARGE Syndrome two years ago and I too feel panic. I know our situations are not the same and our angels went through different struggles in their short lives, but the panic you wrote of is so familiar to me. Thank you again for sharing. I too am keeping a blog during this pregnancy. I look forward to reading more of your blogs and invite you to read mine (http://angelstepsechoes.blogspot.com/). Maybe each others' words will bring comfort or at least a feeling that we are not alone in our feelings during what should be the most joyous times in our lives. I just know that your precious Peyton has sent you two of heaven's finest babies to love and be a mother to. I will be praying for you and your babies, praying that all three of you are healthy and thriving ALWAYS! :) Sharon, Trey's Mommy

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  27. How touching because of your raw honesty. I wish I had words to console or calm but all I have to offer is my heart. I wish you peace.

    I have a car seat cover that I purchased for my Devon. I tried to open it for our rainbow baby but the panic set in. Needless to say, today...2 years later, it remains unopened in my rainbow's closet.

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