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.

I’m pleased to share that we have been recognized by the IRS as a 501(c)(3) organization.  This is a huge milestone and provides what we need to continue moving forward in working with our supporters to help these families who can now write off their tax-exempt donations while helping the Tangerine Owl Project. Its opening doors for us, and we cannot be more thrilled.  To celebrate, we’ve now put our “donate now” button up on the website (www.tangerineowl.org). 🙂 One more goal checked off our list!  WOOHOO!

We are looking forward to many new and exciting things happening so we will be posting more soon!  So exciting and thank you to all our readers who have offered input and feedback and support so far.  You are the best!

You know you’re gold when the people you have had the pleasure of meeting in all pathways of life come together to support you.  This week, I had a minimal ask, but one that’s super important to me, and one that has the potential to have a great deal of impact.  This week, I’ve reached out to people in my home state to help request an official proclamation of a preeclampsia awareness day to be passed in the cities they live & work in.

I have received an enormous amount of willingness to help thus far, and it has motivated me more than ever before knowing that this means something to future women, babies and families, having to deal with this condition. All it took was me asking. That means (in today’s terms): #winning.

THANK YOU to everyone I’ve annoyed already this week. I love you all.I am thankful and cannot do it without you.

Do you remember the time that you were at your worst? When you thought there was no more reason to attempt anything resembling a “normal” life?  Do you remember feeling like you would never be able to crawl back out of the darkness and you didn’t even really want to try?  How the pain and loss you felt overwhelmed you (and THAT is an understatement), and you couldn’t figure out how to get out of bed in the morning.  It hurt to breathe, it hurt to cry, it hurt everywhere. Perhaps flashbacks were going through your head, perhaps you were feeling guilt in addition to the anger and sadness and desperately trying to find a way to turn back time so that something, anything would be different.

Hearing that “it gets better” doesn’t help when you can’t find your way through the next 10 minutes, so what about the right now, for those in this moment of blackness? Being able to let yourself process is the only way to muddle through these extraordinarily complicated feelings.   What helped you process all your emotions?

Seeing as how I am facilitating a support group for bereaved parents now, I decided to go check out an established group to help gain some insight to them and what they may look like in practice. You see, after the loss of Delilah, I didn’t see myself as a group share kind of person.  Its not something I believed would make me feel better, I thought it would only serve as reminder that life was cruel to many parents, which is more depressing when you’re still trying to process everything you’ve just gone through. I wasn’t sure what to expect when I attended.

In sitting in and sharing with this group, the support that was provided to these women was palpable. Its hard to describe, but it was there. I wasn’t afraid to share now that I’m a few years out from my loss; I’m still not one who would find solace in group support in this type of atmosphere, because I prefer individual interactions, but I didn’t find it depressing at all either.  What I found was a group of women who laughed, ranted, and cried, sometimes together, sometimes individually but all in a place they felt safe. Through all of this I was reminded why I volunteered to be a group facilitator, and the proof that this is what some grieving parents need to make it through their dark times and better days.  Unlike the people who will come to my group, I will not be sharing a whole lot in this role, because this time it’s not about me. Instead, I’ll be making sure the group takes the shape of whatever these women need at that point in time.

Most days I look at myself and see/feel that I have become a relatively well-adjusted mother dealing with loss.  It doesn’t mean that I still don’t experience various moments of sadness and really feel the hole in our family (and my heart) from our missing daughter.  I know this.  I wonder how I was able to navigate through the grief so “easily”, I wonder why my days now are spent in relative happiness or contentment with life….  I wonder if you resent me for it.  I wonder if I am missing something here when I’m told that the other shoe will drop and maybe I just haven’t had it hit me in that big all out world ending type of way that brings me to my knees and makes me want to lock myself in a closet all day and bawl.  I just don’t see myself going there.  I’ve been able to process most of my feelings (and continue to do so whenever they surface), I’ve been able to lean on those closest to me at times where I needed to have her acknowledged.  I remember my days with her and the few times that I actually got to hold her with fondness, even when the end result is so tragic. I know I am changed from the experience, and that the catharsis of working with other families experiencing loss is not a tool to wallow in mine, but one to honor her.

Am i not crediting my grief enough? Am I just lucky that I was able to cope with all of this and found the support that made it work for me?  How does this look to others?  Do I put them at ease knowing that there is a way through it or do I make them uneasy because how can I sit there and be functioning in life when they can’t even see that life anymore?