You Should Be Here

You should be here because we love you.  Isn’t that enough?

You should be here because we need you.  Though we may never outright admit to it.

You should be here because life is supposed to be better when you surround yourself with those who care about you.  But sometimes things still suck just as much.

You should be here, but you’re not.  Whether by chance or choice doesn’t matter. 

You are standing still and our world keep spinning. Catch up if you can.

Or am I still trying to catch up to you?

Fine.

fine 

We’ve all been there. We’ve all used this term and not really meant it.  I am fine today (for real), but I am “fine” other days. “Fine”, the one word answer that can mean so many things…

“Fine” = I’m pissed, at something or someone, in that passive aggressive way

“Fine” = I give up/I’m too tired to fight/ I am exhausted of talking about this subject

“Fine” = I’m not really well, but I don’t want to share with you, so I will just pretend I am so you’ll stop asking me.

“Fine” = I’m not really ok, but I’m scared to share my true feelings with you because you may think less of me

Fine = I really am doing ok (at this moment)

I have a hard time communicating when I’m upset about something. I don’t like conflict, I never have and I certainly don’t like to cause it. I have always been the “peacemaker” and the appeaser.  I also don’t like showing insecurity, unhappiness, and vulnerability to anyone other than my husband, certain family members and my very very very close friends. Sometimes I use “fine” because I don’t want to burden others. I’ve been very vocal in sharing my feelings about Delilah and her death, but other things are not as easy as sharing the love I had for her and the sorrow of her absence here with us in person. Sometimes it’s my job to make others uncomfortable, because the nature of the subject is uncomfortable, challenging others to think about what they say and do in wake of trauma, taking away a stigma from discussing infant loss with the public. I’m pretty certain that ignoring bad things don’t make them stop. “That’s sad, but It will never happen to me”, until it does. BUT, I digress. “Fine” applies to so much more than just one sad subject, though “fine” can certainly appear during times of struggle with it.

Sometimes people say they want you to be open and honest, but then when you are they don’t really want to hear it, or they will say or do something to completely invalidate your feelings or call it “complaining”.  It’s not always malicious when they do so, but it is always damaging. We fear the follow up when we give the real answers. I believe that’s a big part of what perpetuates “fine”.  So we have learned to bottle it up and hand out “fine” just as easy as we say “hi”.  In some ways it feels like it has actually lost meaning.  Sometimes, saying “I’m fine” is simply a denial. It’s us lying to convince ourselves that we are ok in wake of trauma, or not yet acknowledging that one has occurred or lying because everyone else expects us to be fine. But “Fine” doesn’t really bode well for anyone in the long run.  It causes self-doubt and inner conflict.  It damages relationships with those you love.  It may get you through a moment, but that’s all.

SO here is your next challenge; Find one person who you know isn’t “fine” when they say they are, even if it’s yourself, and open the door to share. You can’t force them to, but you can give them the option.  If they do, you may learn something valuable. Don’t say “fine” unless you actually mean it.  If you are feeling sad, say “You know, I’m having kind of an off day”, or if it’s in response to an argument or anger at something/someone, voice your actual thoughts to what extent you can. “It really hurt me just now when this happened….” or “I am really struggling with…..” , etc.  I’m not asking you to unload your biggest life challenges to complete strangers, but I am asking you to see through “fine”, and to move towards fine. There are many ways to accomplish these things, and it’s entirely up to the situational use of “fine” and who you are interacting with, but I think you get my point right?  Ok, Fine.

Perspective

I saw this quote today and it really struck me.

‘I stopped telling myself that I’m lost.  I”m not. I’m on a road with no destination, I’m just driving with hope that I’ll find a place that I like and I’ll stay there.  I’m not lost. I’m on my way.”

There have been many times where I’ve felt lost, but never as much as after the death of our daughter.  There is something about the way these words are laid out to take on so many different meanings that makes it worth putting out there to think about. 

Here’s my interpretation: It’s shockingly reminiscent of the journey that we take through loss/grief.  At first it seems like we’re in denial…. ‘I’m not lost…’ I just don’t know where I’m going yet….  Then the journey becomes a search for healing “I’m trying to find somewhere I’ll like”.  Once we’ve found that place of healing we’ll stay there (one might call that acceptance), and then the final line: “I’m not lost. I’m on my way” is the turn around of coming out of the grief and starting to rebuild their world.

In another interpretation, one may look at this simply as a positive re-framing of perspective. When you find that you are at peace with being “lost”, you then aren’t lost anymore, because there is no longer a need for a specific destination. So changing your own view is a way to move forward and stop feeling so stuck.

I struggle with this in life.  A planner by nature I like to have a plan and I like to see the road ahead of me on how to get to the destination.  That’s not to say that I always have a rigid unadjustable view, but I do want a general road-map (in sticking with the driving metaphors …) I want to know where I’m going and how to get there.  In my head, I’ve figured out the directions. Obviously when detours come along it really messes me up because I’m type A like that.  Going back to the words in this quote, when detours are thrown at you, and you begin to look at it that you’re on your way to the place you’ll like, it’s a lot less ominous. Even when you don’t know how to get there, and sometimes that is the best way to take the journey. 

 

How would you interpret these words?

Someday…..An exercise for you.

Dear parents….

When your life has been thrown into chaos, it’s hard to picture yourself on the other side, enjoying the sunshine when the only thing you can see at the moment are the dark stormy clouds.  Even after those have lifted and your days get back to relative normalcy, there are (and in my opinion will always be) those times where for whatever reason you just find yourself right back in that moment where you feel an overwhelming sense of sadness, anxiety, anger and/or loss.  I hate those moments, they make me feel small and insignificant.  They make me doubt myself and they make my heart ache for control over something which cannot be fixed.

So here I am going to suggest trying a little exercise, and I would LOVE you all to try it too when you are feeling off or when times are incredibly hard.

First things first: Figure out what things are difficult for you at the moment and why. Write them out. These may be things that are hard to do or that you avoid like the plague.  Next, below each one, write “Someday……” and fill it with your goal.  Finally, write a line below it that says “my child would be proud of me for…………..”.  

While the goals can be general, the accomplishments should be specific when they are written.  They can be something you’re planning to do in the future to give yourself something to aim for, (for you planners and list-maker types) or they can be left blank and simply filled in when you have done something that fits the goal.

I know my own personal hurdles, but where you are and what yours are will depend on your situation. For instance a parent who came to the NICU recently will look very different from one who has been in and out of it visiting their child for months, and a newly bereaved parent will look different from one who lost their child years ago. 

Here are a few examples:

[fear/anxiety] I can’t Leave the hospital room/ Go home – [reason] I don’t want to leave the room/hospital because something may happen to my child and I won’t be there. 

[goal] Someday, I will leave the room for an extended amount of time.

[accomplishment] My child would be proud of me for leaving for 10 minutes to get some coffee

…..for leaving for 30 minutes to eat in the cafeteria

…..for returning home for a few hours to see his/her sibling(s)

 

[anger] I have a hard time seeing other happy couples with their “normal” pregnancy/baby {reason] because mine is suffering and its not fair.

[goal] Someday, I will be able to be happy for them. 

[accomplishment] My child would be proud of me for attending a baby shower for a friend

…. for sending a card/ note to my pregnant cousin

…..for asking that woman at the grocery store her baby’s name

 

[sadness] I am having a hard time making it through the day. I don’t feel like getting out of bed.I am missing my baby so much it hurts [reason] because he/she has died

[goal] Someday, I will smile again.  Someday I will be able to think about him/her without a complete breakdown.  Someday I will start to rebuild my life.

[accomplishment] My child would be proud of me for answering a call from my mom/friend/etc.

…..putting his/her picture on the wall

……visiting his/her grave

……donating to a charity in his/her honor

…..going back to work

……laughing at a comic /tv show /video/ story

….cooked a meal for my family

 

What’s the point of this you may ask? its simply to put some of the control back into your hands and to provide proof to yourself that you can and will make progress through even the toughest of times. You will be able to identify the whirlwind of emotions that are occurring.  Sometimes just separating them out helps because you can tackle one thing at a time and it may feel less overwhelming. Additionally, it may pinpoint some triggers for some of these emotions should you find you feel off balance. Look for patterns in what you’ve written. Plus, If you can see the things you think your little one would be proud of. Wherever you are at that point in time, there was a worse time before that, just look at what you’ve been able to do since you started! Are these jedi mind-tricks?  Perhaps.  But if nothing else, it’s a throwback to recognizing how you can help yourself.

For me these days, the most frequent emotion is being sad she’s gone and the goals are trying to do positive things in her name. My someday is “Someday others will find support and comfort from our work so that losing you will not have been for nothing”. And my accomplishments?? Well, most of those bigger ones are yet to be determined, but as a start, “my Delilah would be proud of me for sharing her story with others at the Promise Walk and connecting with parents who experienced similar situations”. I’ve come a long way from “Someday I will be able to hear that damn Plain White T’s song without crying”.  To be fair, at the time I didn’t think I’d be starting an organization devoted to her legacy either…

Someday is out there for you too dear readers, whether that is leaving the NICU with that teeny tiny preemie and starting a whole new ride, moving forward from grief, or something else in between. So the next time that uneasy feeling hits, take out your list, and find something you can do to help calm it and move towards your someday, step by step.

A Letter to my Post-Natally Depressed Self

WOW. This is moving. And an exercise in forgiveness, acceptance, and healing; beautifully written.

Nervous PND Surviver

Hey you!

I see you there on the couch. Your dirty dressing gown hugged tightly around your shoulders as you stare vacantly into the middle distance.

I bet it feels like the first times in weeks that the baby hasn’t been screaming the house down. So now you don’t dare move in case you wake him. You’re semi-aware that now is probably a good time to grab a snack or a shower but you can’t move. The room is pressing down around you and you feel like you can’t breathe. I bet you can’t remember the last time you enjoyed something, or what it feels like to not be constantly worried about something, anything.

You can’t see the end of the next minute, never mind, the next hour, day, week and you certainly can’t imagine ever feeling like you ever again.

But listen, you will. You will smile, you will…

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Could Haves, Should Haves

The founder of the Zoe Rose Memorial Foundation (and my mama friend) Keira Sorrells wrote a guest post for Preemie Babies 101 called “If Only I Had….”

As I read, I found myself nodding and sighing. I think every parent, both moms & dads, face this at some point after the loss of a child, or even during their illness. You rewind and think about every little detail, and what you missed.  As parents, we’re programmed to protect our child, and we [seemingly] failed at that when they are lost.  In the preemie world, most times there is nothing we really could have done to prevent the outcome.

It’s harder to grasp that concept, because we are human, we feel so passionately about being responsible for our own lives and actions….we take control, we are driven to work for anything we want out of life, and we honor, and fight with great ferocity for, our ability to CHOOSE [anything!].  When things end in tragedy, and it’s impossible to clarify WHY, we can’t just throw our hands up in the air and go “oh well”.  We feel responsible. I found myself doing the same things with Delilah.

Why didn’t I mention that she had been lethargic earlier?

She got sick a two days after I had left the hospital to spend a few days (2) at home with my other two children & husband.  I’d been there, camped out at the NICU, for 21 days…since our home was an hour and a half away from the hospital, I was fighting leaving every step of the way because if anything happened I’d likely be too far away to get there in time.  Of course, when she got sick those fears materialized into guilt. “I left her and now she’s dying. I should have been there.”  It didn’t matter that I had already been back when she got sick, it didn’t matter that her brother and sister and dad needed me too. It didn’t matter that I probably needed the break from that environment.  All that mattered was the fault I found in myself for leaving, and I was paying for it dearly.

Was it rational? Of course not, but what the mind knows and what the heart feels are very different.

Why didn’t I know that I was sick? / Why didn’t I recognize the signs of pre-eclampsia? Then I could’ve noticed it earlier and we could have done something to minimize it and then she would maybe have been able to be in utero longer and would have had better chances of surviving….

IF………THEN….. only continually proves true in mathematical equations.  Life is just not ever going to work out as clear cut as that, because of all the factors involved, expected and not, explained and not, and circumstance.  You’ve heard of “the perfect storm”? Well, each case of a lost preemie baby is just that, the perfect storm of factors that effect the circumstances of that specific child.

Its normal to feel the guilt, and sometimes it gets the better of you, and Keira’s words here still ring true. I can’t tell you to not feel guilt, but I can agree with the fact that eventually you can choose to set it aside.  In any course of grieving you have to let yourself feel however you are feeling, rational or not.  So ride through the emotions, and point #2 she made is so true. Sometimes, even for a moment, focusing on the love that you had for your baby will bring solace.  It is and always will be there, and no one can take that from you, not even the could haves and should haves.

The worst thing you can say……

You may think that you will say the wrong thing.  You may think that avoidance will make your interaction better. You may thing you will shatter a bereaved parent’s world all over again by the very mention of their lost child…. But you would be wrong.

True, it may be hard for them to hear the name, to remember their little one in the world before everything broke, and to share about their experience of losing one whose life they hold more precious than their own.  But the absolute worst thing you can say……. is nothing.  

I have had this conversation with friends who were unsure how to approach the subject, but I have always reminded them that speaking about Delilah was not an off-limits subject.  Sometimes it brought tears to my eyes, and sometimes it brought smiles.  Sharing her with others was/is part of my recovering, but I will never be angry at someone for the mention of her name. 

Parents NEED to know that their supporters are behind them and willing to talk about the uncomfortable.  You don’t need to worry about saying “the right thing”, you just need to say SOMETHING.  Even if it’s “I’m sorry”, or something as honest as “You know, i don’t even know what to say, but I am here for you.”  I have been lucky enough to have friends and family that do this, and I’m sure it’s helped with my own grief, but I have talked to other parents who have sadly not received the same support, and they suffer more because of it. So I beg you, if you truly want to be helpful….

Say SOMETHING…. ANYTHING that will acknowledge the loss and the child.  Even if you can’t quite comprehend the loss on the same level, understand that this makes us know you are trying to empathize.  Simply not discussing it and/or hoping it won’t come up is bound to do damage to your relationship with the bereaved parent.  So do that relationship a favor and bring it up.  We (bereaved parents) write blog posts in hopes of sharing, we write books, we get tattoos, we wear memorial markers in jewelry or other such things as subtle hints that it’s truly OK for you to bring up the lost child.  No really, it IS ok.  If it were an off limit’s subject, we will tell you if it’s not the right time, but 98 percent of the time, we are proud to share with you, and even happier that you asked.  The entire conversation will not be about the child (especially as time passes), but even the brief mention, will mean the world to that parent.

This will be part of our push at the Tangerine Owl Project’s October SPARK (Supporting Parents through Awareness, Respect, & Kindness) Remembrance Event this October.  Take the taboo out of conversation about uncomfortable things.  It sucks, it’s tragic, but it happened, and we need your support, so SPARK the conversation with those who need you.