About staceytangerineowlproject

I am a Chicagoland mommy, who runs the Tangerine Owl Project (tangerineowl.org) devoted to supporting families with infants in the NICU and/or those who have experienced infant loss. I am an advocate for maternal mental health, preeclampsia education and community outreach/support for the uncomfortable issues that families deal with. I have a ridiculously loving and supportive husband, two lovely children and a 3rd in heaven. Life can be chaotic, but we make the best of what's thrown at us, through all of this I am thankful that it has led me to meet and learn from some incredible people.

Its the Little Things

Today is the day that I will both love and despise for the rest of my life.  It’s my angel’s birthday and the reason that I am where I am today (for better most times, for worse every now and then).  She would have been 3 today.  I could choose to reside in depression about what I’ve lost, what our family is missing, what she would’ve could’ve or should’ve been doing now….. I’m an hour away from her gravesite, but I never felt much in the way of comfort there anyway. I could reminisce our short time with her by looking at my picture books dedicated to her, but her pictures are up in our home and I see those beautiful eyes every single day both in person and in my memories. Instead, like my goals with Tangerine Owl Project, I’m choosing to celebrate by “paying it forward” a bit by covering the cost of people’s morning cup of coffee….

What?! That’s silly, what does coffee have to do with an angel baby’s birthday or work for supporting families of NICU babies?  Well nothing inherently – but it’s the little things….. that make the biggest impact.

My little 1.5 lb. wonder did so much for me in her 27 days on this earth, this pales in comparison.  We dubbed her motto “go big or go home” because she didn’t do anything subtly. Preemies are said to be “small but mighty”.  I feel like the Tangerine Owl Project is small but mighty too.  We’re working one connection at a time, to make a difference in this world to the families that suffer in silence through the ups and downs of the NICU, or those who have experienced the same unimaginable loss and are trying to pick up the pieces.  There’s a saying about being kind to everyone because you never know what battles they are fighting by themselves.  Totally true.

Furthermore, coffee is my husband and I’s “thing”.  We don’t do a whole lot of “out and about”, we rather prefer being homebodies or having friends over instead of big nights on the town. Our coffee dates are where we’ve had some of our most meaningful conversations – a time to truly disconnect from the world around and focus on just being us. The Tangerine Owl Project idea was created over coffee.  It’s like a comfort zone for me.  Yes, I am absolutely in need of caffeine to get my day started, but it’s so much more than that.

So the little things like simply making someone smile feels like the right way to honor someone that most of the world never got the chance to meet.  Because she may have been gone for three years, but she’s far from forgotten, in fact, she should be known, because even from heaven, that girl is destined for great things.
XOXO Delilah, and Happy Birthday.

Stranger

Today is the 3 year angelversary of my friend’s dear daughter Noelle.  I have never met my friend in person….we have continued conversations online, via phone and text, but I share the bond with her of our lost daughters. I’d like to share a story with you –

On the day my daughter died, I got a facebook message from a friend of a co-worker.  She didn’t know me, but she had seen my co-workers post about Delilah and sent me a message. Instantly I was amazed that a stranger had reached out and could already understand my pain that I couldn’t even yet put into words and also that she cared enough to message a complete stranger. It was a time when I needed someone who just understood. Her message was real, It was more than just ‘sorry for your loss’, she had been there done that having lost her little girl only 2 months prior, but she had put aside that pain in order to comfort someone else.  I envy every bit of my friend’s strength and compassion, because I recognize exactly how much it must have taken to look over her own grief to try to help relieve someone else’s.

As such, I make every effort to replicate that gesture, because I swear if it hadn’t been for her, I may not have been able to recover. I think about her daughter often. We wonder if they’re playing together in heaven sometimes. We remind each other of happiness and beauty through our little girls and we needn’t speak of the sorrows, but if we need to, there is no doubt that we can lend a listening ear without question or pity.

So Noelle, happy angelversary to you my love – even though I never knew you, I am thinking of you today. I wish I had had a chance to know you. It seems that your mama and I were meant to cross paths and I hope that I can help take care of her when she needs it (on the days and months like today), just like she helped take care of me.

A Nurse’s Wish

Such kind words. This is a beautiful heart wrenching but still vital story. I remember all the care and compassion our nurses had, and am thankful that you are all out there fighting along with us for our health and our babies. Thank you for sharing.

ADVENTURES OF A LABOR NURSE

Being an obstetrical nurse, I am surrounded by beauty every single day I come to work.

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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.

Thankful through heartbreak

I didn’t take part in all the memes this Thanksgiving season, but that doesn’t mean I don’t have a lot to be thankful for. Everyday I watch others peoples worlds crumbling around me, and I remember when that time was mine…. Even with the extraordinary heartbreak that came with losing her, I am lucky to have had her, if only for a fleeting moment. I’m not always thankful, and we don’t always have to be. There is still room for sorrow, joy, confusion, anger, love, grieving and sometimes yes, even gratitude. Sometimes I need that reminder, and today I got one as I came across this. So as we close out November’s focus of saying and giving thanks, I’ll leave this image with you, in case it resonates.

lucky goodbye pooh rose hill

This gorgeous image was one from a talented artist at Rose Hill Designs FB Page found here: https://www.facebook.com/pages/Rose-Hill-Designs-by-Heather-Stillufsen/108858199201084.

31 Days of Mindfulness – an antidote to seasonal stresses

From my friend Leigh. A great idea, not only to remind you to practice self-care, but also this shows the intimacy of working through grief, and how much it takes of your own accord to process. *Hugs* to all my babyloss parents out there. We’ll make it through the season yet!

Headspace Perspective

It’s no secret that I am looking forward to Christmas being over. The excitement ramped up a couple of notches over the weekend with decorations being proudly displayed on social media, talk of gift buying, Christmas songs, advent calendar opening, and elves on shelves.

While I do not resent others’ excitement over the festive season, it adds to my sense of loss. I have been reading a grief book based on cognitive behaviour therapy (CBT), and part of that is about training your mind to weed out unhelpful thoughts and replace them with thoughts that are more helpful. It’s not easy, and takes time – both to recognise and replace such thoughts when you are feeling low.

I have also been trying to practice mindfulness – awareness of ourselves and the world around us – well, since Saturday, when I bought a book about it. I have been pushing myself so hard with writing…

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In Recovery

For the last few years I have volunteered with an organization that provides prevention, intervention, and treatment for adolescents who struggle with addiction and their families.  I recently found myself thinking that for grieving parents suffering the loss of a child, there are really a lot of similarities that parallel that of struggles with addiction and recovery.  That may seem unbelievable to you at first thought, but bear with me and let’s walk through it a little…..

Immediately after the loss, we may go through the denial in various forms – “No, (s)he is going to be just fine” (upon being told in no uncertain terms that no hope is left), “I’m fine” – virtually ignoring the fact that the child is gone and going through your days as though nothing has changed.

If we had time with our child, there may be times of withdrawal. All you think about, ALL the time, is your child.  If they had been at home, you may camp out in their room, snuggle with their clothes or favorite stuffed animal just to smell them again.  You may watch old videos, or continuously look through old photo albums, just staring at the face you will not see again in life. Many these reactions are part of normal grief, but some people get stuck here. Sometimes they remain stuck here for a very long time. More so, many of us start exhibiting addiction-like behaviors, such as not meeting obligations and work responsibilities, engaging in highly risky behaviors, losing interest in activities or doing things you wouldn’t normally do in attempts to deal with or process their grief.

“But isn’t that depression?” you may ask. Good call. I am not a medical professional, and there is way too much complexity in such things so I’m not even going to go there. My point is not to argue that the lost child is an addiction to some bereaved parents. Rather, my point is these behaviors can be similarly viewed with those of addiction and that because of this, looking at people’s challenges and steps in terms of a path of recovery can be useful in understanding their journey and potentially helping them.

First, I want to share a very important aspect about my personal view of recovery, and perhaps challenge yours…..

In volunteering for the organization I mentioned earlier, I have learned that there is a big push to redefine recovery (for the outsider’s perspective as well as the insider’s) as something to be PROUD of and shared openly, to learn from. You see, there has been a long-standing stigma associated with recovery and the programs that help others on their road towards kicking their substance of choice. Think about it: Secret meetings where you don’t talk to anyone else about what happens there (a bit like Fight Club, eh?)  You don’t disclose who may or may not be in their with you, you show up and keep the anonymity out of respect for traditional beginnings. You may feel shame in admitting that you’ve lost control of yourself, and in the things you have done because of that addiction. Addictions have been viewed by the outside world as something to feel guilty about, something we should be able to conquer our own, and when we can’t we are inadequate.  But much like the stigma attached to talking about dead children and our grief for them (no matter how much time has passed), because it makes others uncomfortable, this view must be changed.

A new view

Spearheaded by a ever-growing movement called Faces & Voices of Recovery (http://www.facesandvoicesofrecovery.org/) , the move now towards being open and brutally honest about being in recovery from addiction to substances hopes to provide not only a sense of solidarity with countless others in the same boat, but also the opportunity to share and learn.  We have learned much more from this movement about addiction itself. It’s helped us to be more recognizing of the inner struggles and signs of abuse/addiction, it’s shown us that there are people who are able to function nearly perfectly in public while still privately battling addiction, but still struggle to keep it at bay when they are alone, and it has shown time and time over that it’s not something that’s “cured” once the twelve steps are done, but rather an ONGOING struggle.

But what is recovery exactly? 

A paper published by the Journal of Substance Abuse Treatment in 2007 noted a special section about “Defining and Measuring Recovery” had a definition that made the most sense to me. It noted a working definition of recovery from substance dependence as “a voluntarily maintained lifestyle characterized by sobriety, personal health, and citizenship.”

Obviously the part about sobriety here may not apply, though it depends on how someone is handing the grief. I am not trying to discount the importance of sobriety with respect to substance abuse, surely substances may be a crutch in times of grief – but for my purposes, I’m looking more at the personal health and citizenship aspects.

In recovery, one should be maintaining personal health (it should also be noted here that personal health encompasses physical, psychological, and spiritual health as well as independence).In recovery, one should strive towards citizenship, meaning living with regard and respect for those around you.  I will view it here as when one chooses to re-enter their world as a functioning human person. Returning to work, taking care of things at home, acknowledging and caring for any other surviving children, social obligations, taking part in community events, and even volunteerism.

So what does this mean in terms of how we interact with and recognize recovery for bereaved parents?

This paper further notes the following things defining recovery that stuck out in particular to me:

1) Recovery is not simply sobriety. – Recovery is multi-faceted, and as mentioned earlier, its important to look at the health and social aspects not just the presence or absence of one single item.

2) Recovery is a personal condition, not a specific method.  There is no static measurement of recovery. Its highly subjective, because people all operate differently, and figuring out what recovery looks like for an individual who is already adjusting to a new normal further complicates that.  One should recognize that there is no single checklist to fit the bill.

So thinking about that…. let’s take a look at some of the varying programs for recovery that are out there and what we can incorporate into helping the bereaved parent

Acknowledgement

In some of the “Anonymous” groups for example, members get a chip for mile-markers of sobriety.  Every bereaved parent has those markers in their head.  Wouldn’t it be nice to recognize significant dates and milestones along with them? Not a “congratulations you’ve made it a year”, but more acknowledging the dates of importance.  Most bereaved parents are touched deeply when others remember their lost children (especially the more time passes) because we are afraid they’ve been forgotten by others except themselves.

Forgiveness

In the step-programs, making amends with those you’ve “wronged” is one of the significant steps.  An example would be the feeling of having wronged friends of family members by having innate anger or jealousy toward those with healthy children or those who become pregnant while the bereaved parent was mourning. Or they may have ditched their best friend’s baby shower or stopped hanging out with friends for those reasons. They may feel like they did them wrong by being unsupportive when they did nothing wrong, or just knew they couldn’t handle it at that time.

I think for bereaved parents, this is two-fold.  First, for the guilt they may feel for wronging their child in some way as their parent, even if they did not have any particular fault in their death. Parents instinctively have the protective response, so when their protection isn’t enough, when love isn’t enough, or when a mother’s body starts to work against her and her unborn child, the guilt sets in. Writing an open letter to their own child telling expressing their feelings, and asking for their forgiveness if they feel they need it may be a helpful practice. Secondly, bereaved parents should be encouraged to take time and focus on forgiving themselves, over and over as many times as it takes until they truly believe and feel it, and practicing self-compassion. None of these feelings are wrong in any way.  They are natural, and they are part of the grieving process.

“It takes a village” (kind of)

Many programs have both a group and mentor type support system, and many times it is a combination. Both have their pros and cons, but I generally advocate for bereaved parents to surround themselves with as many people as possible who, together, fulfill as many of their perceived voids. To clarify, I mean this as a sum of parts, not a team that is in contact with each other about the bereaved parent. The twelve step programs strive for members to recognize and admit that they are powerless against the addiction, that it is out of their control.  I believe that this particular acknowledgement is essential in a vast majority of experiences. Embracing that is essential for the self-compassion and forgiveness mentioned earlier.

The amount of support gained from each of these methods are dependent on the person.  Some may not get as much out of group-based support as they will from individualized mentoring and professional counseling for example.  What one may get out of their group (being in a place which provides tangible evidence that they are not alone in their struggles) could be the singular takeaway if they don’t want to share themselves, but still vital to their healing. Having a “sponsor” whom the person feels they can trust and turn to for help in times of need, would likely be beneficial. This person does not have to have a labeled role, but should be someone who has had at least some kind of similar experience to provide a peer-based support. Added to this team may be trusted health-care professionals, such as a social worker, psychologist, psychiatrist, therapist, significant others, family members, spiritual support persons, or others depending on life situation. It could be as simple as someone providing resources to the parent.

When they are stronger than they realize

Another recovery program, called SMART Recovery (smartrecovery.org) is embracing teaching self-empowerment and self-reliance. This program also teaches how to manage thoughts and behaviors, which may be of value to one who is struggling. This is completely opposite of the foundation the step programs were built on, but equally as important when focusing on recovery in the loss of a child. For as valuable as supporting players are, only the bereaved parents themselves can truly understand how their world will exist now that their child is gone and how to continue living in it.  Teaching them the tools to put the power back in their own hands is vital.

Giving the tools

Some recovery programs teach the importance of identifying and recognizing triggers and learning relaxation techniques. These are everyday life skills that everyone can benefit from, but are especially useful in helping those who have experienced a traumatic loss, who may also suffer from anxiety.  Loss sets off a ton of triggers, from the obvious (upcoming milestones, someone else’s baby announcement, etc.) to the hidden, like some random day a bereaved parent is walking down the street sees a child that doesn’t look anything like theirs (or what they envisioned he would look like), but is about the same age that their child would have been had they been here. Or a red bow, just like the one that was bought for their baby, an old picture they happen across when spring cleaning, or some stranger asking them how many kids they have, etc.  Helping teach bereaved parents to cope with the triggers and manage their preparedness for the obvious and not-so-obvious will do them a great service.

Conclusion

Bereaved parents are often “in recovery” for life. At the end of the day, there is no substance stand-in they can kick from habit.  But the process in recovery and some of the takeaways are useful. I encourage you to think about the models that recovery programs have provided us. I encourage you to challenge the stigma by teaching the bereaved that there a place for recovery, and it’s not just at a group meeting.  It is HERE. It is NOW. with anyone who will support them and give them the tools. It is those of us who will be there when they “fall off the wagon”, which really isn’t falling off at all, merely tripping on the road of recovery. No parent is every “cured” from their loss, they never completely move on, only forward, because the remnants from that loss will always be with them. It may be a fleeting thought, or a hard holiday every now and then. It is not always constant, but it is always there lingering, just like that urge of an addict to use.

***  Reference Note: The article I have been referencing here about defining recovery and such can be found here: http://www.naadac.org/assets/1959/betty_ford_recovery_definition.pdf

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.