Contacting SANDS

Just after Max died, my friend Leah, a midwife, sent me a package of information and brochures from SANDS, an organisation that provides miscarriage, stillbirth and newborn death support. It was so helpful and I am so grateful that someone knew where to turn on my behalf. At that stage I had no idea that other people's babies died like mine did, let alone that there were organisations that provided support and information for people just like me.

I received their brochure 'Your Baby Has Died', as well as a book of stories told by parents whose baby had also died. The brochure had so much helpful information, although much of it I wish I'd known earlier in the hospital when I still had time with Max and could have used their ideas of how to create more memories, for example.

I can't get that time back again, no matter how much I try, but I knew that what I could do was make a contribution that would help other parents to access the right information at the right time. I contacted SANDS a couple of weeks ago to volunteer my time, in any capacity they might need. It took me a long time to work up to contacting them. SANDS also provide counselling and support, although for some reason I never felt comfortable contacting them for that kind of assistance. What I feared most, I think, was making the initial phone call. What do you say when the person answers the phone? How do you begin the conversation with a stranger that your baby has died?

I really wish I had have called earlier, though. I contacted them by email to express my interest in volunteering, and shortly afterwards a really lovely lady called me back to talk. Although the purpose of our conversation was to work out how I might be able to help, we ended up just having a really nice conversation which was so helpful to me. I can't say how much it helped to talk to her, and to hear reflected in her words all the things that I am thinking and feeling. This lady's daughter died seventeen years ago, and still she was able to speak about her baby girl as if it were yesterday. So much of what she said resonated with me and I found it immensely comforting to hear of how her little girl is still so much a part of her life, even after such a long time has passed.

I was particularly interested to hear what she had done in the intervening years to make sure that her daughter remained a part of her life, and how her grief and love for her baby had changed over time. After her baby died, she did have another baby - a son who is now a teenager. She told a beautiful, although heartbreaking story of her son's relationship with his older sister. He was about three and a half when he really began to comprehend that there was another baby in the family; that the photos were not all of him. She spoke of how she and her husband always answered his questions, which grew over the years, with honesty, but how it did not really hit her son that he would never know his sister until he was around 12 years old. At that age, I guess, children begin to see themselves as independent people and begin to think about their place in their families and in the world. She said that at this age her son began to want to spend a lot of time at the cemetery, and that he would just sit at his sister's grave and weep as he figured out his own way to make his sister a part of his story, of his life. This was a really powerful image, I think, which illustrates that the impact of our baby's life, although it was brief, is a lifelong one that everyone in our family will carry with them now and into the future.

In terms of what I could do to help SANDS, it was timely that they are in the process of reviewing all of their brochures, with the aim of streamlining the information that is available in different states. On Friday afternoon I went into their offices, along with another bereaved mother, to offer some feedback on the brochures in their current form, and some suggestions for how to improve them. I brought the perspective of a newly bereaved mother to the conversation, and the other woman the benefit of having four years 'experience'. It was a really helpful experience, not just in terms of having the fortunate opportunity to have my voice count, but also in realising how much of what I think and feel is common amongst others whose babies have died, even under different circumstances. The other woman's baby was stillborn at 41 weeks, which was a very different situation to mine in many ways, but we seemed to have experienced so many things in common. Though in many ways her life had moved on - she is now parenting two beautiful living children - I could tell that part of her was still back there, in 2008, blank faced and numb and wondering what on earth has happened to her life. I found it very reassuring to talk to her, to nod and smile, and agree with so many of the things she said, but it also made me realise that the longing I have for Max to come back will never go away. That it will be a part of how I mother any future children, if I am lucky to have them. She was so kind, and gave me her email address to get in touch. I think I will, but I'm also conscious of not wanting to be the needy and annoying new bereaved mother on the block. She must already get that so much.

One of the brochures they wanted our particular help with was the one intended for family and friends of a person whose baby has died, which I think is really, really important. Dealing with other people's actions or inaction, religious beliefs, judgements or well-meaning but offensive platitudes not only compounds your grief but is exhausting. On the other hand, there are so many small gestures and words that have the capacity to make such a big difference, if only people had some experience or direction to lead them in their responses. For me, this blog has been a valuable way of me letting those people close to me know what I'm going through, but for some people their friends and family must be even more so stumbling in the dark. Resources for friends and family are therefore so valuable in making sure that bereaved parents get the support they need from the people closest to them.

Some of our quotes will go into the new brochures, and I'm really glad I had the chance to help. Until the new brochures come out, there are lots of resources on the internet about what to do when your friend or family member's baby dies, including information on how to deal with your own grief. Here are some good sites that really 'get it'. Please, if you have time, read them. You just never know when you'll be able to help someone, or point them in the direction of something that will.

http://www.glowinthewoods.com/how-to-help-a-friend

http://carlymarieprojectheal.com/healing/how-family-and-friends-can-help

http://www.bearsofhope.org.au/friends/For_Family_Friends

http://www.sidsandkids.org/wp-content/uploads/SIDSFamilyandFriends.pdf

A surprise blessing

There are three needs of the griever: to find the words for the loss, to say the words aloud and to know that those words have been heard. 

- Victoria Alexander

A few weeks ago I emailed my old school, Dominic College, to update my address since we moved house last year. I've always enjoyed receiving the old scholar's news from school and university. The old scholar contact person must have googled my name (scary thought) and found my business website, and afterwards he asked me to write a few lines about my time at Dominic and my life since then for the next edition of Veritas, the old scholar newsletter.

The newsletter just came out, and the little story of my school days is in there (page 16). As the newsletter also records births, deaths, engagements and marriages, I told the story of my little Max, too. It's important to me that he be acknowledged as my son, no less valuable than any other person's son for his life being far shorter than it should have been.

When I checked my email this morning I had received a message from the now principal of my old school that really touched me. I don't know this woman, as she was not at the school when I was there, and I couldn't believe she had taken the time, late on a Sunday night, to send me this message of thanks and support.

The email reads:

Dear Janelle, I read with warmth and tears your piece in our Veritas. Thank you for courageously sharing with us your life as it has been unfolding and the tragic loss of Maxwell. I cannot even begin to fathom this. May you continue to have courage and strength and know that your words of inspiration are resounding with our current students and our staff. It all makes a difference Janelle. You are in my prayers. And can I dare to say I am really proud of you! Prayers and blessings, Beth, Principal.

Since the fallout with my friend over my MamaMia article a month or two ago I have felt very judged for sharing Max's story and my journey after his death to the point that I have pretty much withdrawn from most forms of communication with anyone but those closest to me as a way of protecting myself from people having ill-informed opinions of whether or not I'm dealing with the death of my son in the 'right' way.

For example, I've deleted my Facebook account and made my blog private as a result of the few aggressive sentiments that were directed at me. I am not yet resilient enough to deal with those who take offence to my open heart, my rawness. Because I was so devastated by my friend's reaction to that piece of writing, I was not able to take in and appreciate the sheer outpouring of positive support that also came my way at the time, which was actually by far the greater sentiment expressed by so many people - by complete strangers and by those who really know me. 

This email from the school principal reminded me that I am doing a valuable thing in sharing my son and my grief, and that I must not let those who want to judge or wilfully misunderstand my experience make me afraid to do this. The simple act of sharing yourself, and your story, is a powerful thing. So much of what I have done so far shows me this clearly, and I've only just begun.

Shakespeare writes in Macbeth,

Give sorrow words; the grief that does not speak whispers the o'er-fraught heart and bids it break. 

May we all, no matter the nature of our storms and troubles, find the courage to share them so that others may learn and empathise. If I could ask one thing of anyone who may in the future read this blog it is that we better acknowledge our grief and disappointments, our weaknesses and our prejudices, so as to grow from them, and help others grow. When I give my sorrow words, now and in the future, that is my aim and my wish.