SO excited to announce that I have been invited and accepted to contribute to a book on dealing with pregnancy & infant loss that is meant to aid health professionals in understand how to better work with these parents.

The Book is called Our Only Time by Amie Lands and it will be out in just a few weeks!

(More info on the book here)

Its surreal to be in a space where I am viewed as an expert and where my experiences are noted in a platform different than an individual level when I am talking to other loss mamas.  Each and every story has value and I don’t mean to negate any of that – the one on one work I do is just as rewarding to help mamas navigate grief, but building a name for myself and the Tangerine Owl Project in the world of care and insight for bereaved parents in the face of healthcare providers and other professionals is such a wonderful feeling.

Once again, I am honored to be thought of and I applaud Amie and the other contributors for continuing to give voice to these mamas, and to hope that my words may help comfort those going through their own hell by knowing they are not alone and by guiding those health care professionals with them at this time who are tasked with the damn near impossible and completely unnatural – walking with these families towards the death of their child and navigating the road after with them.

In the past few months, I have been working in tandem with numerous other professionals with a variety of backgrounds to contribute to online course material developed for professionals working in the NICU.  This is a collaborative project between the National Perinatal Association, Patient+Family Care, & the Preemie Parent Alliance is called My NICU Network.  I am honored and privileged to have been included in developing part of the curriculum that will be provided to NICU professionals to help them further understand and work with these unique families.

Providing perspective as an expert in the unit on Pallative / Bereavement Care on how to interact with bereaved parents or parents whose babies are expected not to make it has been very fulfilling.  Not gonna lie, it was difficult to have to put myself back in that NICU room, back into the worst day of my life on an emotional level.  I don’t often like to revisit it, but parents who have been through this can offer exceptional expertise on what can both aid and hinder relationships with professionals in the NICU.  What are things that one may find helpful and consoling, what things should not be said and insight as to why seemingly innocuous or “supportive” words may not come across that way to someone in the crisis of torment, confusion, & grief. All together this is an awesome learning tool for those who don’t interact with these parents all the time and aren’t accustomed to or necessarily comfortable with the ins and outs of NICUs and all that go along with that experience for parents.  It can be a challenging time for both care providers and families, so I’m thrilled to provide any insight that help to provide and guidance that makes navigating the process, along with the other wealth of information that is available through this course.  Please share it with those who may find it beneficial in your networks.

This past weekend I both attended and spoke at the Preemie Parent Alliance Summit.

I was looking forward to it for a long time knowing that I would be reconnecting live & in person with people I haven’t seen since the last summit i was able to attend in Phoenix circa 2014.  Then, I was 2 years fresh off of the loss of Delilah, only a year and a half into running the Tangerine Owl Project and still super motivated to connect with others who wanted to help NICU families.

Though I have kept in touch with and kept a few tabs on some of the amazing people & organizations that I knew, there is just something about being there in person that has reinvigorated the drive in me that has been somewhat lacking, somewhat exhausted, at times somewhat frustrated and disappointed in myself, and even somewhat burnt out.

I felt like I haven’t been able to do a ton of meaning full things for Tangerine Owl for a few reasons over the last few years….  We have had a lot of transitions in family and work, increasing responsibilities with work, and have taken on more volunteer opportunities around Maternal Mental Health, infant loss, and things at the kids school.  I also had not yet been able to put my finger on exactly HOW to serve people through Tangerine Owl without being a clinician, a licensed anything, or having a ton of disposable income.

Being at this summit for me was a chance to meet and learn from a number of simply phenomenal individuals and give hugs to those who I have missed and talked with virtually for awhile. I learned more about self care and got some pointers on what I can do to help balance myself, I learned what others in the space are doing to care for NICU families and how.  I learned more about a lot of things. I got a chance to relax a bit and indulge a bit.

I also had the honor to present this year.  Those who know me know that I get very anxious about public speaking, it never has been my strong suit and its one of my least favorite things on the planet. BUT, this opportunity was for the greater good; It was sharing information that could help other people, it was giving validity and value to the bereaved parent and what they can teach others but are so rarely considered in transformative opportunities with institutions not centered around bereavement.  So I pushed myself to do it. Even when the people are interested, engaged, and in the same world that you are. My fight or flight response kicked in and I had to breathe through the anxiety.  Which made no sense at all (my head knew there really was no reason to be scared, but my body apparently felt differently)  I was up to 4:00am perfecting my slides and organizing my thoughts.  Worth It.

Travel is always exhausting, and its another source of anxiety for me and another not-so-favorite thing, even when its for something fun. Finding potential future collaborations, building my knowledge, seeing my friend & entrepreneurial mentor. BUT, this was so worth it and I would do it again in a heartbeat.  I realized just how much I missed being with people who are fighting the same battles, and reaching towards similar goals, and recognition for Tangerine Owl was just the icing on the cake.

Thank you to all who attended, led, shared, laughed, cried, guided and encouraged. You are my people and you have recharged me and reminded me that even little things are enough.  It motivates me to keep going and to know that I am making a difference, even if its not what i originally envisioned, as quickly as I envisioned, or even on the same path as I originally envisioned. I continue to learn from and love this group.

Why March for Moms?
As you know, my organization, The Tangerine Owl Project, is dedicated to supporting families who have suffered traumatic birth or stays in the NICU, premature birth, and infant loss. Any of these experiences can make mothers vulnerable and at higher risk for a perinatal mood disorder.

• 15-20 % of all women will be affected by a maternal mental health (MMH) disorder
• Maternal Mental Health disorders are the most common complication of pregnancy & childbirth, yet many go un-diagnosed

Because I am passionate about raising MMH Awareness, I have been working with 2020 Mom, a national organization who strives to close gaps in maternal mental care through education, advocacy, and collaboration.

There is strong correlation between untreated maternal depression or anxiety & premature birth moving 2020 Mom to launch “March for Moms”. In partnership with March of Dimes (MOD), our teams will walk alongside MOD supporters at MOD walk sites across the country to support moms & babies by advocating for MMH. We are raising MMH awareness about among a group of moms who are already at-risk for developing postpartum depression or postpartum anxiety.

I am leading a team that will participate in the Plainfield, Illinois walk on Sunday May 7, at 1:00pm in Village Green Park. This is not a fundraiser for the Tangerine Owl Project, however, it IS raising money for a cause that will affect many of the women we work with. It is for that reason that I hope you will consider supporting me and the wonderful work that 2020 Mom is doing in MMH. 2020 Mom will also donate back 5% of the money our team raises to our local MOD chapter.

Ways you can support my team & MMH:

• Join my team and walk with us
• Join my team & make a donation
• Join my team and ask people in your networks to join/donate to the cause too
• Make a donation to the team

To join or donate to the team, please visit my walk team page here:
https://www.crowdrise.com/mmh-walk-plainfield-il/fundraiser/staceydunlapporter

If you would like to start your own team to raise MMH awareness and fundraise for 2020 Mom at any MOD walk location in the US instead, that would be just as impactful! The more teams walking and the more locations the better!!! More info and step by step help to set up your team is available here: http://www.2020mom.org/mmh-walk/. I would be happy to assist you in finding your local MOD walk details and/or setting up your team. Walk Sponsorship Opportunities are also listed at the above link for businesses who would like to get involved. Feel free to get in touch with any questions.

Please share this with any of your colleagues, patients or friends/family members that may want to join or donate because of a personal experience.

Thank you for your support in helping both moms & families thrive!
Stacey

Happy Birthday my angel – you have been the driving force behind this project.  You have inspired me to continue my healing, but it reaches far beyond that.  Through you and your story, we have helped others by giving hope and support to those who are missing a part of their heart too.

I will be forever in awe of the impact that you have and will do my best to continue to engage others in these difficult conversations, walk with them through their grief, and fight hard against the stigma that surrounds discussing such sadness, and all that comes as an after effect, to turn it into something that gives others hope.  Just like you have done for me.

With love always.

It’s been 5 years.

5 years since I got to look at you.  5 years since our worlds were turned upside down.  And we are about a month away from the 5 year mark of the day our world shattered.

I definitely didn’t think that this milestone year would be easy, but I truly didn’t think it was going to sideswipe me.  These 5 years have been turbulent for our family….. the loss of you kicked it all off, and what followed over the years for our family was a collective 7 job changes, 3 house moves, 2 separate starts of elementary school (not different schools, just different kids), multiple pet losses and additions, the addition of many new friends, the closing down of my old event planning business (when we moved) that use to be so dear to me, but was no longer relevant to what was going on in my whole new universe, the loss of a path in life, the loss of my identity, anxiety and depression issues, new experiences and education that have lead to significant growth both personally & professionally…. a mix of positive and negative changes, but changes none the less.

(ok, turbulent may have even been an understatement – reading this back now, it seems sometimes all I’m missing is a book deal…)

By far the most exceptional change, was the creation of this organization that has been meant to provide support to families who are also missing a piece of something in their hearts, because that is an evolving relationship with you, when the physical one we had for such a short time has long since become static.  I am forever thankful to you for your inspiration and guidance Delilah in creating this project, because without that, all that’s left is “moving on” and letting go, which is simply unacceptable to me as your mother.  I don’t need or want to hold onto the past, that does no good either, but I certainly have worked on my healing through the passion and people in this space.  The loss of the person I was before you and the rebuilding has only been able to happen because you allowed me an outlet to grieve and process by walking with others through theirs.

Now is a scary time though, this 5 year mark brings a lot with it. It brings the drive to continue building momentum for the project, which is a good thing, and at times can be invigorating and its a reminder that I’ve made it this far. But it also brings with it the fear that all along I’ve not really had the calming environment or stability, in every aspect of the word, to allow myself to process the entirety of our loss. THAT leads me to question whether I’m waiting for the other shoe to drop, because I seriously thought I’d done a LOT of my processing over the last 5 years.  And that strikes fear in me like you can’t imagine.

When the moments come (and they will) that I allow myself to think about you and memories of our last days with you come creeping in too, because I can’t just remember your sweet angel face as you slept in your isolette or the pictures your brother and sister drew you that were hanging in your window. No, with the memories also comes the guilt, the sadness, the anger, the self-doubt, the sheer panic and breakdown I had on the morning that we had to bury you, all over again. I couldn’t walk down the stairs D, and I kept saying “I don’t want to do this”. Every year on February 14 I have to relive that, and it doesn’t get easier. Ever. It puts me right back in the awful moment. Every year. and it hurts, more than I can ever describe. I know that doesn’t displace celebrating the love that we all had for you and the love that was shown to us, but the two feel like two alternate realities sometimes.

Does that put me back at square one?  Because really if I’m still feeling these things and it still brings me to tears, have I done any processing at all?  And then I feel like a hot mess all over again.

Your brother and sister are older now and they talk about you more often, and they look at their pictures of you, they wonder what you would’ve been like or what it would be like if you were with us, and they cry over you and that makes me cry because they are feeling their loss just as much as your dad and I are.  For as strong as everyone makes me out to be in pushing forward and surviving though these past 5 years, there are so many times that I don’t feel it at all. I believe in the work I’m doing, but I would surely trade it all in if it meant that you had the chance to stay with us. So stripped down to my roots, it seems that I am just a grieving mom for whom absolutely everything and yet absolutely nothing has changed.  That kind of dichotomy is really challenging to wade through.

Today I was a guest blogger for North Shore Pediatric Therapy.

I got to share our experience in our other childrens reactions to the loss of their sibling. A difficult recount to write, but still honored to share with others in case it helps them.

Here’s the article:

http://nspt4kids.com/parenting/losing-delilah-rebuilding-a-life-for-siblings-after-the-loss-of-a-child/

I was watching the season finale of The Middle the other day. In the show, one of the characters is upset because she is graduating from high school and through a variety of incidents, she’s feeling like she has no legacy.  It’s got a happy ending where she recovers her lost yearbook in which all the pages are filled with messages from her classmates about how they noticed her and how she had impacted their lives. That got me thinking…..

We all have big dreams. I didn’t start on this journey with the intent to start a non-profit, and I definitely am not trying to become some grandiose organization that is known world-wide and has trillions of $ to spend – in fact, that terrifies me because when one gets too big, they lose sight of the reasons they started. When it becomes more about the business of things than the serving those very people you set out to help, things have gone totally wrong. I don’t know where that balance is, and we’re not near the point where I have to worry about it just yet, but it’s there looming in the back of my mind.

Then I start to think about the legacy of Tangerine Owl Project. What is it that I am going to leave behind with this organization? Sometimes its hard to seem like the “downer” because I make it a point to discuss things that aren’t bright and cheery. I am an advocate for lots of things associated with pregnancy that bring up how things can and do go terribly wrong.  I wonder if people look at me and all they think is oh, there’s the woman who lost her baby.  People have told me I’m inspiring and it’s really hard to take that compliment, not because its wrong, but because sharing my story is sharing Delilah’s story, and people should know how inspiring to ME she is. BUT she is not more deserving of recognition than that any other life lost too soon, any other parents fighting their way through life without their children. So many of us share in sadness, and many are creating their own legacy in their own way. So what is it I want from the Tangerine Owl Project?

I want to show my children that being there for people in times of uncertainty, despair, and all hell breaking loose is just as important as being there for their brighter counterparts.

I want to break barriers to discussion of “taboo” topics on a larger scale. I want people OUTSIDE of those experiencing it to allow those subjects in, even though it may be uncomfortable.

I want women who are watching their lives fall apart around them to feel empowered and ABLE enough to get the help they need, not stifle their rawness and their reality because of idiotic words from people who simply aim to dismiss them.  I want these women and the ones who love them to understand they’re not “being emotional” or “just depressed” with the situations at hand, like its something they can just snap out of.

I want honest compassion to be the norm instead of the exception when dealing with NICU or bereaved parents, across the board, from every care provider out there.

I want to provide a moment of true peace within chaos for these families, and I want them to feel supported instead of isolated.

I want a lot of things.

Most importantly I want to build a community of others who will promote and encourage all the above, because you’ve got to start somewhere if you’re going to make your mark on the world.

Friends we are so excited to share another milestone!

Last week, we received our first referral from a local hospital. The crisis counselor had been working with a family who was transported there during a medical emergency and had delivered the baby at 29 weeks gestation. Sadly, the baby did not survive, and the family had indicated that they wished they could do a private burial for their daughter.  This family did not have the financial means to do this, so she reached out to us to see if this is something that is within the scope of the Tangerine Owl Project.

We were so grateful for the referral, and after looking into the specifics more, we were honored to be able to fund the entire burial for this family.  Our hearts ache for this family, and all others who have had to endure such trauma and such heartbreaking loss. This may sound morbid, or trite, but let us share why this is such a thing for us to be proud of….As a parent, you want to make sure your child is taken care of and watched over, protected like any parent would do, even in death. Other families have had to endure this same thing and because they could not afford burial costs, their child was left to the county to dispose of. While many hospitals do as much as possible to respect and honor these families, it remains that their wishes for their child’s burial can not always be provided, and some don’t even know where their child has ended up.

So the reason we are so honored to have had the opportunity to do this, even when “it’s only money”, is that it’s not only money. It goes FAR beyond that. It is just a very tiny step that will help in the grief. Instead of wondering about her daughter’s whereabouts, this mother and her family can now go visit her in the angel garden, in their hometown, whenever they would like to. It’s one small move towards restoring balance to the new world order for them. Her mother can finally feel the slightest bit of comfort (however fleeting in grief) knowing that her daughter is at rest in the way they’d wished for. THIS, is one of the reasons that the Tangerine Owl Project was created – to help families find their way towards restoring their own balance.