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.

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

How To Get Through Today

Breathe.

I won’t offer remedies beyond that, because they may not actual remedy anything. You’re hurting, you’re angry, you’re agonizing, you’re swallowed whole with fear, anxiety, and/or depression.  Your child is struggling with staying alive, your child is at the mercy of a ventilator and fate/luck/a religious entity, your child is gone, you are in the NICU watching, waiting.  You’ve driven home with an empty carrier, or an empty womb, you’re numb.  You’re alone……..or are you?

I’m not going to tell you to ignore those feelings, because they all make sense, even if they’re happening congruently and conflicting with each other. So if things are too much, first breathe.  And then find someone who will cry, scream, sit in silence or at least join you as you curl up into a ball and ride the waves of emotion  No fixing, no rationalizing, no justifying with meaningless crap, just being there in the moment with you.

Write it down here, you’ve got the undivided attention of at least one person (that would be me).  Who am I?  Maybe I’m a stranger to you, maybe we’ve met online through various sharing of experiences and emotions, or maybe you are my friend or family.  But, it makes no difference. We’re out here in this world going through lousy things, together.

So Breathe.

The New You

In grief of any kind, you cannot possibly expect to be the same person you were before your experience.  But sometimes figuring out who the new you is is incredibly difficult.  After all, a piece of you is forever missing. A lot of us baby loss parents talk about “a new normal”…. and this is the same thing – it’s a “new you”.  Your personality, your appearance, your thought process, your hopes, fears and dreams have all changed now.  It’s like you’re a teenager all over again figuring out what to do with your life.

I believe there is truly a monumental shift after going through such a loss. I will never be thankful for losing a child, but when I lost myself, I found a different life, one that is more meaningful and one that makes more sense.

I spent months just going through the motions of routine and at the time that was what I needed as I processed everything.  Then I slowly started to return to life, and examine what that meant for us.  For my family, that meant a physical move out of the city we had lived in for a decade, a fresh start in a new place and a rebuilding of our lives. That helped, but I wasn’t able to find my “place”.  At first I didn’t understand or like the new me. I held two different jobs (not at the same time), but I didn’t feel settled, and I certainly wasn’t really happy, in fact they brought to light more things about my “new self”. The new me who was scared and lacked confidence, the new me who felt strained to make new friends in a new place, which before had come so easily. The new me who wasn’t sure I’d be able to be a good parent to my surviving children because of the one I had lost, and the new me who really didn’t know how I was going to make it through the loss. The new me who cried a lot and who found it difficult to be an optimist. The new me who had to bottom out before I could really come to terms with all that we had just experienced, even though I thought I had already done so.There wasn’t an “aha moment”. But those weeks and months made me realize that I needed to focus on me for a little while. I had focused on my loss for quite a while and vocalized it, but I hadn’t focused on rebuilding myself. Its incredibly important to realize that these are two separate things.  YOU are NOT your loss, though it’s hard to differentiate sometimes (especially in the beginning).

We often spend so much time in confusion and despair we get lost in the pain. We may try to go back to “normal life”, we try to make others happy, or we don’t do anything at all.  None of those options is good in the long run, because you’re ignoring yourself.

So I started being selfish. I didn’t care to appease people anymore. I did what was good for me and what I needed to do to be happy, which was to focus on my organization. With that, came opportunities and information that intrigued me.  The new me was motivated, and passionate. I found ways I could be an advocate for addressing and changing some of the issues I feel strongly about with my fellow baby loss parents. I formed meaningful friendships instead of artificial pleasantries. I lost weight and got rid of a large amount of anxiety that was hanging over me. I’m still navigating, and I think everyone will have their days that aren’t optimal, but I can honestly say that I feel the best I have since February 2012. I can feel the difference, and others have mentioned that its visible in both my appearance and demeanor, even with the missing piece of my heart that forever belongs to Delilah.

If you feel like you’ve lost yourself going through trauma of any kind, grant yourself time and patience. You will find a new you…..try hard to accept and embrace that person, whether you understand them or not. Eventually you will start to make some sense of everything, and you’ll find someone just as beautiful as before, with flashes of your former self, but different.

It’s a Mad, Mad, Mad, Mad World (today)

I’m fired up today people. Few things really grate at me beyond general annoyance at something, but today I am the passionate kind of infuriated that is making my fingers type faster than I can purposefully articulate a thought. So bear with me…. 

I’m mad that in a world of such advances in knowledge and practice, we’re sometimes just plain dumb.  Note, there is a difference between making a mistake and refusing to even CONSIDER that you have made one. I’m mad for the general public who has mental disorder labels put on them because a book says so, when what they really need is to be heard in a way that doesn’t involve just trying to “fix it” and “move on”.  I’m mad that what will truly help them is sometimes thrown off the map entirely because of a classification that they probably don’t actually even meet in any realistic terms.  Yes, there is a difference between Depression and Grief.  I’m mad at the doctors who refuse to actually “hear” their patients.

I’m enraged for my friends in the baby loss community who are subject to cruel and harmful words/actions (intentionally or not) every day, especially when it is by those who are supposed to love them.  I hate that some of these words/actions do irrevocable damage to our hearts and minds because we struggle internally with wanting to believe someone we trust or love has an answer to help heal us, but then realizing they don’t understand us, they’re not even listening, and they don’t care to. I’m mad for those of us who feel forgotten because those who we open up to downplays our experience or flat out ignores our loss. I’m sorrowful that as a collective group of people suffering a very real traumatic loss we can still feel so alone with our grief. I’m astounded that others try to put timetables for grief and healing on any part of the process. I’m angry that we try to project our own beliefs and experiences onto others, and even moreso when it’s someone in that community who should know better.  Sharing what you’ve experienced and what helped you is one thing, that may or may not be helpful, but it’s not the answer for everyone. I am me, and you are you.

I find it absurd that the following sayings even exist:

—“Time heals all wounds” – No it doesn’t. Not when you’re a parent.  You’re not healed, even when you’re functioning a piece of you will always be a little bit broken. Forever. You may be managing, but you’re not ever whole again.

—“It was God’s plan” – Really? I’m not even going to get into religion here…. That is their belief and it is wonderful to have (for THEM), but not everyone shares it.

—“We all have baggage” -again, really?  No *&^! I have baggage. I need my own airport for all my baggage from one single occurrence in my life of 34 years, and you’re going to try to sum it up like a relationship that didn’t work out?  This wasn’t one of us losing interest or giving up.

—“At least you…… [enter any seemingly positive thing here]” – No, there is no bright side to losing a child. Ever. Ever the optimist I tried to tell myself this during the first months…. “At least I got to spend some time with her”, but that didn’t make me feel better, it made me miss those moments more.

So I’m mad at all these things…..What am I doing to do about it (besides vent it out in writing form for your enjoyment)? I know I can’t single-handedly change the mental health diagnoses and criteria, and I cannot change some people’s attitudes, beliefs of actions, and I can’t always make people understand, but I will try.

What I will do is continue to do outreach and show compassion towards others who aren’t getting enough (or any at all).  I’ll find those who simply need someone to relate, on any level. I won’t try to fix them (though fighting that urge is hard, because I really do want to make things better for others, but some things you just can’t make better). I won’t tell them what to do next. I won’t tell them it will be OK or expect them to go back to being the person they were before. I’ll let them feel how they feel and share what they want to share, without judgement or expectation. I will understand that just like my thoughts here are my pictures of things I’m unhappy about, they have their picture of the world that they are trying desperately to adjust to. I will help them find others who share the same sentiment in getting them the support they need. I will not only listen to them, I will HEAR them for who they are, not who someone else says or thinks they should be.

Think of what our culture could become, what good we could do, if one by one we just made the extra reach towards showing compassion.

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?