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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Could Haves, Should Haves

The founder of the Zoe Rose Memorial Foundation (and my mama friend) Keira Sorrells wrote a guest post for Preemie Babies 101 called “If Only I Had….”

As I read, I found myself nodding and sighing. I think every parent, both moms & dads, face this at some point after the loss of a child, or even during their illness. You rewind and think about every little detail, and what you missed.  As parents, we’re programmed to protect our child, and we [seemingly] failed at that when they are lost.  In the preemie world, most times there is nothing we really could have done to prevent the outcome.

It’s harder to grasp that concept, because we are human, we feel so passionately about being responsible for our own lives and actions….we take control, we are driven to work for anything we want out of life, and we honor, and fight with great ferocity for, our ability to CHOOSE [anything!].  When things end in tragedy, and it’s impossible to clarify WHY, we can’t just throw our hands up in the air and go “oh well”.  We feel responsible. I found myself doing the same things with Delilah.

Why didn’t I mention that she had been lethargic earlier?

She got sick a two days after I had left the hospital to spend a few days (2) at home with my other two children & husband.  I’d been there, camped out at the NICU, for 21 days…since our home was an hour and a half away from the hospital, I was fighting leaving every step of the way because if anything happened I’d likely be too far away to get there in time.  Of course, when she got sick those fears materialized into guilt. “I left her and now she’s dying. I should have been there.”  It didn’t matter that I had already been back when she got sick, it didn’t matter that her brother and sister and dad needed me too. It didn’t matter that I probably needed the break from that environment.  All that mattered was the fault I found in myself for leaving, and I was paying for it dearly.

Was it rational? Of course not, but what the mind knows and what the heart feels are very different.

Why didn’t I know that I was sick? / Why didn’t I recognize the signs of pre-eclampsia? Then I could’ve noticed it earlier and we could have done something to minimize it and then she would maybe have been able to be in utero longer and would have had better chances of surviving….

IF………THEN….. only continually proves true in mathematical equations.  Life is just not ever going to work out as clear cut as that, because of all the factors involved, expected and not, explained and not, and circumstance.  You’ve heard of “the perfect storm”? Well, each case of a lost preemie baby is just that, the perfect storm of factors that effect the circumstances of that specific child.

Its normal to feel the guilt, and sometimes it gets the better of you, and Keira’s words here still ring true. I can’t tell you to not feel guilt, but I can agree with the fact that eventually you can choose to set it aside.  In any course of grieving you have to let yourself feel however you are feeling, rational or not.  So ride through the emotions, and point #2 she made is so true. Sometimes, even for a moment, focusing on the love that you had for your baby will bring solace.  It is and always will be there, and no one can take that from you, not even the could haves and should haves.

The worst thing you can say……

You may think that you will say the wrong thing.  You may think that avoidance will make your interaction better. You may thing you will shatter a bereaved parent’s world all over again by the very mention of their lost child…. But you would be wrong.

True, it may be hard for them to hear the name, to remember their little one in the world before everything broke, and to share about their experience of losing one whose life they hold more precious than their own.  But the absolute worst thing you can say……. is nothing.  

I have had this conversation with friends who were unsure how to approach the subject, but I have always reminded them that speaking about Delilah was not an off-limits subject.  Sometimes it brought tears to my eyes, and sometimes it brought smiles.  Sharing her with others was/is part of my recovering, but I will never be angry at someone for the mention of her name. 

Parents NEED to know that their supporters are behind them and willing to talk about the uncomfortable.  You don’t need to worry about saying “the right thing”, you just need to say SOMETHING.  Even if it’s “I’m sorry”, or something as honest as “You know, i don’t even know what to say, but I am here for you.”  I have been lucky enough to have friends and family that do this, and I’m sure it’s helped with my own grief, but I have talked to other parents who have sadly not received the same support, and they suffer more because of it. So I beg you, if you truly want to be helpful….

Say SOMETHING…. ANYTHING that will acknowledge the loss and the child.  Even if you can’t quite comprehend the loss on the same level, understand that this makes us know you are trying to empathize.  Simply not discussing it and/or hoping it won’t come up is bound to do damage to your relationship with the bereaved parent.  So do that relationship a favor and bring it up.  We (bereaved parents) write blog posts in hopes of sharing, we write books, we get tattoos, we wear memorial markers in jewelry or other such things as subtle hints that it’s truly OK for you to bring up the lost child.  No really, it IS ok.  If it were an off limit’s subject, we will tell you if it’s not the right time, but 98 percent of the time, we are proud to share with you, and even happier that you asked.  The entire conversation will not be about the child (especially as time passes), but even the brief mention, will mean the world to that parent.

This will be part of our push at the Tangerine Owl Project’s October SPARK (Supporting Parents through Awareness, Respect, & Kindness) Remembrance Event this October.  Take the taboo out of conversation about uncomfortable things.  It sucks, it’s tragic, but it happened, and we need your support, so SPARK the conversation with those who need you.

Don’t treat grief as a mental disorder

This is a very interesting take on grief that was found through the Willow House blog (willowhouse.org), and it’s our intention to share in order to educate, and support those who are going through their own grief.

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Fact: Grief is NOT a Disorder

The following was written by a group of concerned professionals in response to the release of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders ( DSM-5).

This statement was developed by a work group at the meeting of the International Work Group on Death, Dying and Bereavement in Victoria, British Columbia on April 28 – May 3, 2013. You have full permission to translate the document into other languages, and to distribute it via websites, blogs, the media, and other venues. It is our intention that the message be shared widely.

When does a broken heart become a mental disorder? Rarely, if ever.

But don’t tell that to the American Psychiatric Association, which has just released its fifth version of the Diagnostic and Statistical Manual of Mental Disorders. The DSM is a catalogue of mental disorders, hundreds of them, each trailing a listing of symptoms. The manual informs selection of a diagnosis, which is required by U.S. insurance companies for reimbursement for mental health care.

There’s a major change in the newest version, DSM-5, with serious implications for the millions of people who are coping with the death of a child, spouse, parent, friend, or other loved one.

But first, a quick glimpse at the history of this publication, often referred to as the bible of psychiatry. The very first edition, published in 1952, didn’t even refer to grief, considering it an accepted and normal reaction to the death of a loved one. The third edition added an exclusion statement under Major Depressive Disorder, referred to as the “bereavement exclusion.” Under this exclusion, a diagnosis of Major Depressive Disorder could not be made for a full year after a death. They recognized that normal and common reactions to the death of a loved one could look like symptoms of depressive disorder, for example, sadness, disturbed sleep, lack of concentration, changes in eating, and loss of interest in things that were once pleasurable.

In 1994 the 4th version of the DSM reduced the bereavement exclusion to two months after a death, and this new version removes the bereavement exclusion completely, meaning in effect that anyone can receive a diagnosis of Major Depressive Disorder two weeks after the death of a child, parent, spouse, friend, or anyone. Why does this matter? For at least three reasons:

First, normal reactions to the death of a loved one will be easily misclassified as the mental disorder depression. Grief is not the same experience as major depressive disorder. It is not an illness to be treated or cured. It is a healthy response to a painful reality that one’s world is forever altered, and will never be the same. Absorbing this loss, and adapting to all the changes it unleashes, has its own unique course for every person, and will not be stilled or stopped by quick fixes or simple solutions. Death is a life-altering event, but grief is not a pathological condition.

Second, antidepressants are commonly and frequently prescribed. There is a strong likelihood that newly bereaved people will qualify for a diagnosis of Major Depressive Disorder just two weeks after a death even though their reactions are normal. Antidepressants have not been shown to be helpful with grief-related depressive symptoms, and there is accumulating evidence of long-term negative effects of being on antidepressants. We need to ask why psychiatry is pathologizing grief and therefore making inappropriate pharmacological treatment easier. And we should not overlook the self-interest of pharmaceutical companies who see a new and substantial market for antidepressants, currently a multibillion dollar industry.

Third, about 80% of prescriptions for antidepressants are written by primary care physicians, not psychiatrists. We have the expectation that physicians, as well as psychologists, social workers, and clergy, to whom many of us turn for help after losses of all kinds, have professional training, solid research backing, and supervised experience to guide them. Some do, but in fact, a considerable majority of practitioners with these degrees have no professional training at all in responding to the bereaved.

The caution here? Be wary of physicians or other medical professionals who rush to prescribe antidepressants to address your grief.

Here’s a better prescription: Mourn the death of your loved one in your own way. There is no prescribed formula. You may cry; you may not. Your reactions will be shaped by many things: the relationship you had with the deceased, your personality style, and the support or lack of support you receive from others. Push aside those who tell you to move on, that every cloud has a silver lining. What one person finds comforting might not work for another. Find friends and family who understand, and with whom you can share your experience. If they won’t listen or help, or if their help is not enough, search for support groups through your local hospital, hospice or community organizations. Don’t be afraid to seek professional help, but if you do, ask about the person’s training, qualifications, and experience with grief, loss, and bereavement.

We grieve as deeply as we love. We can get off track with love, and we can respond to our grief in ways that aren’t healthy, or don’t serve us well. But let’s not make love, or grief, a mental disorder.

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This document was written by a group of concerned professionals in response to the release of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders ( DSM-5).

Thomas Attig, PhD, Professor Emeritus in Philosophy, Bowling Green State University

Inge B.Corless, RN, PhD, FAAN, Professor, MGH Institute of Health Professions, Boston, MA

Kathleen R. Gilbert, PhD, Executive Associate Dean, Indiana University School of Public Health,

Bloomington, IN

Dale G.Larson, PhD, Professor, Department of Counseling Psychology, Santa Clara University, CA

Mal McKissock, OAM, Director of Clinical Services, Bereavement Care Centre, Sydney, Australia

David Roth, Executive Director, Puetz-Roth Funerals and Grief Companions, Bergisch Gladbach, Germany

Donna Schuurman, EdD, FT, Executive Director, The Dougy Center for Grieving Children & Families,

Portland, OR

Phyllis R. Silverman, PhD,

Scholar-in-Residence, Women’s Studies Research Center,

Brandeis University, Waltham, MA

J. William Worden, PhD, ABPP, Psychologist, Laguna Niguel, CA

We would like to acknowledge the International Work Group on Death, Dying and Bereavement (IWG) for the opportunity to develop these ideas. This statement represents the opinions of the authors, not the opinions of the Board or membership of the IWG.

Start a Conversation about Baby Loss

Acknowledgement means so much – this is proof. It’s uncomfortable for some, but it can aid in healing for those who wish to share. Hugo inspires happiness in remembrance to his mother, even if accompanied by a bit of sadness, it is likely so much better than saying nothing.

Headspace Perspective

Since the death of my baby son Hugo earlier this year I have been overwhelmed with love, kindness and support from family, friends, strangers I have met and new friends I have met online.

Hugo and I enjoying a cuddle Hugo and I enjoying a cuddle

Very few of these lovely people were able to meet Hugo. My baby was born 16 weeks early and spent the 35 days of his life in a neonatal intensive care unit on a ventilator.

However, all of these lovely people know exactly how much Hugo means to me. They say his name, listen patiently to all the stories I have to tell about his spirited and mischievous character, and look at the many photos I have of my gorgeous son. They admire him, and agree that he was a wonderful baby.

For those few minutes, I feel my face light up and I feel like any other proud new mum showing off my amazing…

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I Found My Voice at BritMums Live 2014

A blog post a mommy friend of mine…. she is so strong and I am proud of her for expressing her feelings, and finding her voice even through heartbreaking loss.

Headspace Perspective

Me and Hugo Me and Hugo

I went to BritMums Live with a great deal of trepidation. I’d been in a deep depression since the death of my baby son Hugo in March this year, and developed anxiety issues that mean I sometimes feel unable to leave the house.

The kind and generous Kylie from Not Even a Bag of Sugar had offered me a ticket. I was interested in the Inspire sessions at the conference and how to utilise my blog to advocate for change, and raise awareness of issues.

The conference was the first significant thing I had done since Hugo died, so I was terrified.

However, I was determined to do this for Hugo so I put on my favourite dress, made myself look presentable, and got on the train to London.

I received a warm welcome when I arrived.  I’d made eye contact and exchanged smiles with a few other women, but…

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Link

Letter to NICU parent

I am not surprised, but I am overwhelmingly encouraged to see that there are other organizations that are dedicated to helping parents make it through their time in the NICU.  I found this letter, and it is inspiring and perfect in almost every way so I wanted to share. Because HOPE is needed every day, whether its day one in the NICU or day 564. There is no straight line to walk, there is no NORMAL in the NICU.  So, for those who want to support those they know who are fighting this fight and who are wondering what they could do, click through the link above to read the letter on the blog Life With Jack. PRINT this letter and give it to the ones who need it. It will matter and it will make a difference, if only for a moment, I promise you it will. 

Cheers & Hugs

Memorials for Preemies

I believe there is a sort of stigma attached to infant loss, and openly grieving is difficult for others to take in.  When a baby passes away, especially a preemie who may have never had the chance to meet anyone beyond their parents and caregivers or a baby who was born stillborn, it may be thought of as odd to hold a funeral/memorial service. 

Do they even make caskets that small? You may wonder?  Why yes, they do. For those parents who want to share their little one with their families and friends by holding a memorial, please don’t hesitate because you think it will be “too morbid”, too sad, or because others never knew your child.  Death is an uncomfortable subject, and those that occur taking the lives of babies just born are especially tragic, but we parents grieve like any other. If this can help to provide comfort and/or closure to the parents, then they should hold a ceremony that is meaningful to them.

No body is necessary, you can choose to have a service in which you share your little one with others in remembrance through pictures, stories, and songs. We were able to celebrate the short life of our little one and grieve the loss with those who we loved around us. To us, it was comforting to share stories about the first time we held her tiny little hand and the heartache that we were feeling.  We felt she deserved to be known.  She deserved to be acknowledged, and she was an inspiration to us, so we shared what we could so that she could also inspire others.  Don’t forget that this is also a chance for others outside the immediate family to be able to share their feelings.  The loss of an infant profoundly effects the parents and siblings of that baby, but just like a drop in water, ripples onto grandparents, godparents, cousins, friends of the family, etc.