Love, Light, Strength & Purpose

Happy birthday Delilah Evangeline. You continue to be an unparalled force of nature in my life and the driving influence behind all that i have learned and accomplished these last six years.

LOVE – All of this starts and ends with love. If you strip everything down, I do what I do because its a way to honor my love for you and to make sure that love is known to others who never have chance to meet you.

LIGHT – You are my sun and my moon, the guidance in times of joy and places of darkness.  I am always captivated by the way little coincidences don’t seem so coincidental anymore when I look at the path I’ve been navigating since you left.

STRENGTH – I continue to find strength in you and have been able to provide strength to others who need it to endure overwhelming heartbreak.

PURPOSE – I can’t say (and never will) that there was a purpose for you dying, not in a real way.  I mean, there is a logical medical reason, but there is not a universal acceptance that will make sense that can explain reasoning for the loss of one so wanted, and so loved. Awful things happen to those who never deserved it, and that has been one of the most difficult things to wrap my head around as I searched for an explanation.  But my experience with grief and loss has opened up a world of intriguing information and passion that I would likely not have found otherwise.  You are behind everything I do; sometimes in a very lucid way, and sometimes so subtly that I don’t realize it until in hindsight.

It’s these reasons that I started the Tangerine Owl Project in your memory.  Its for these reasons that it continues to evolve, because little girl, you are the essence of it all. Sharing you with the world is an honor and a privilege that I am thankful for every moment.

With love, always.

Poppy’s Dream – MMBWGL

Today I had the opportunity to take part in something so beautiful and meaningful, it filled my heart and soul.

I serve on the bereavement committee for the Mother’s Milk Bank of the Western Great Lakes (www.milkbankwgl.org).   Together, we look for ways to acknowledge and honor mamas who have donated their milk after a loss. Those of you who know me know that I donated Delilah’s milk after she died, I didn’t see any reason not to.  I know that other mothers struggle with the idea of milk that was meant to sustain their child going to someone else.  It can be a painful thought and only mothers can make the choice that is right for them.

That said, for many bereaved moms, donating milk has been a tangible way to connect with their baby.  They find hope and peace knowing that their child can provide for another child in need.

Most often, donor milk is used for NICU babies who aren’t able to get milk from their own mothers for a variety of reasons, and IT IS CRITICAL to their survival.  Donor milk from mothers of preemies, is even more rare, and provides a different makeup of essential nutrients than normal full-term babies mother’s breast milk.  Donating Milk saves lives.

We reveled in that yesterday at the unveiling of Poppy’s Dream, a gorgeous tile mural at the milk bank that accompanies personalized stars with the names & birthdates of donor babies. We held a ceremony for the unveiling, and had an unprecedented attendance from donor families. It was a mix of emotions for those who attended as they reflected on their experience. I was asked to share Delilah’s story, and again was reminded of how meaningful she has been to others who were able to thrive and grow with her milk.  This mural serves as a reminder to the staff of why the milk bank exists, and its a stunning representation of the delicate balance in life, and the good that can come from bad.

It is an honor to serve on the bereavement committee for MMBWGL and allowed me a bit of space to be present with my thoughts on Delilah (who was also recognized in the candlelighting ceremony).  And what better timing as her birthday is tomorrow…..

There goes the universe working in mysterious ways again.

 

SACRED

All over the world mothers of pregnancy and infant loss united in a project put into the works by Stephanie Paige Cole & Pia Dorer.  A project months in the making for us who submitted our photos (and much much longer than that for the Stephanie & Pia), the film was released late yesterday for the world to view. In 7 minutes it has managed to encapsulate the intangible. Please take a look here: https://www.youtube.com/watch?v=EphBe_Xmck8&feature=youtu.be

These brilliant women and their collaborators put together a remarkable film full of imagery and hopefulness. The word Inspiration quite frankly feels like an understatement….. this is a visual dialogue on just how many of us have walked in these shoes worldwide, and what we are left with when we look at it in these terms, is stunning. The Sacred Project film is now a part of history and I am moved beyond words at the finished film. It speaks volumes.

Please watch and SHARE this project with your world, because its one of the most simple and loving ways we can influence change.  My deepest heartfelt thank you to everyone involved for bringing this to life.

More than one

lose it all quote

This is worded so perfectly, I couldn’t help but share.  It’s from Stephanie Cole’s book Still: a collection of honest artwork & writings from the heart of a grieving mother. www.sweetpeaproject.org/book

My heart sighs at just how truly profound and un-ending our losses as parents are when a child dies.  Sometimes I’m able to ignore dwelling on the nagging empty space that my heart holds for D. When I allow my mind to wander,  its these types of things that I grow angry about. I know we’re suppose to be happy about the fact that we got to spend any time at all with our little wonders (if we had the chance), but that doesn’t negate the fact that we have still all lost these opportunities to watch our children grown and experience the world and the wonders of life. It’s never singular; we continue to lose, over and over again.

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?

Winning at life? Give yourself a little credit…

I saw this article here on lifehack.org and thought I would share, because sometimes we all feel like we’re not growing and going places and that can be hard.  Give yourself a little credit! I know that I’ve made a lot of progress over the last 5 years, but I’m still working on some of them… The point is to appreciate how you have grown and if you want to make your life “better” then pick one of these things and make it an active task to work on this week/month/year.

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20 Signs You’re Succeeding In Life, Even If You Don’t Feel You Are

1. Your relationships are less dramatic than they used to be.

Drama is not maturity. As we age, we should develop maturity. So maybe your relationships were drama-filled in your past, but if you have moved beyond that, then you are successful.

2. You are not afraid to ask for help and support any more.

Asking for help does not equal weakness. In fact, it is a strength. No person has ever succeeded in isolation. It takes teamwork to accomplish goals. Asking or help is a sign that you have grown as a person.

3. You have raised your standards.

You don’t tolerate bad behavior any more – from other people, or even yourself. You hold people accountable for their actions. You don’t spend time with the “energy vampires” in your life anymore.

4. You let go of things that don’t make you feel good.

No, this is not narcissistic even though it might seem like it. Self-love is success. Love yourself enough to say ‘no’ to anything that doesn’t make you happy, doesn’t serve your purpose, or drags you down.

5. You have moments where you appreciate who you see in the mirror.

Ideally, you should appreciate who you see in the mirror at every moment. But even if that doesn’t happen, if you do it more than you used to, then that is success. Love yourself. You are awesome.

6. You have learned that setbacks and failure are part of self-growth.

Not everyone can have success 100% of the time. That’s just not realistic. Life is about victories and losses. So look at your setbacks as stepping stones to something better. In reality, there really is no such thing as as setback. It’s all just part of a wondrous journey.

7. You have a support system that includes people who would do anything for you.

If you have figured out the people who “have your back” and recognized the ones who only pretend that they do, then you have succeeded. This is a painful realization, but once you learn to see the signs of betrayal, you can stay away from those people.

8. You don’t complain much.

Because you know there really is nothing to complain about. Unless you really have gone through some horrific life experience and had unimaginable losses, most of what we all experience on a day-to-day basis is just mundane. And successful people know that. And they live in a space of gratitude.

9. You can celebrate others’ successes.

Just because other people succeed, that doesn’t make you a failure. Applaud the people who rise to the top. The more positive energy you give to other people’s victories, the more you will create your own.

10. You have passions that you pursue.

You are not stagnant. You know you have something wonderful to contribute to the world. You have unique talents and gifts. Not only do you know that, you pursue it.

11. You have things to look forward to.

If you don’t have exciting things going on in your life that you are eagerly anticipating, then you are slowly dying inside. Successful people create goals that they are passionate about pursuing. They let this excitement drive their life.

12. You have goals that have come true.

Even though “failures” are a part of life, you have stuck to your goals and dreams long enough to make them come to fruition. You have  some tastes of victory. It fuels you.

13. You have empathy for others.

A person without empathy is dead inside. Empathy equals spreading love and positive energy into the world. Successful people know this. They love others as if they are family.

14. You love deeply and open yourself up to be loved by others.

Love is risky, and sometimes scary for people. It’s the one thing we all strive for, but it’s also intimately tied to the one thing we fear the most – rejection. If you open your heart enough to love and be loved, then you are successful.

15. You refuse to be be a victim.

You know that life doesn’t always happen to you. Many times, you are a co-creator of your life experiences. Successful people know this and refuse to be kept down by life experiences. The rise up and conquer anyway.

16. You don’t care what other people think.

You know you can’t please everyone. You know that the standards with which society judges people is many times unrealistic. So you just keep true to yourself and love the person you are.

17. You always look on the bright side.

Life can be full of disappointments – if you choose to see them that way. Otherwise, they are learning opportunities. No negative experience is ever wasted as long as you learn from it.

18. You accept what you can’t change.

Let’s face it – there many things you can’t change in life. All you can change is how you view what happens. If you can change your negative perspective on situations to a positive one, then you are successful.

19. You change what you can.

And let’s face it again – there are many things you can change in life. Successful people don’t sit around accepting the negatives that are changeable. They get out there and do something about it!!

20. You are happy.

To me, this is the ultimate definition of success. It doesn’t matter what the balance is in your bank account, how big your house is,  or how many fancy vacations you take. If you are happy, then you are succeeding in life.

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So there it is.  Are you winning?  Are you setting some new goals?  Either way, you’re doing something, and that’s on the road to where you want to be as a human being.  So much more than fame & fortune isn’t it?

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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