Testament

This blog has been a very therapeutic way for me to process and express my grief. Although my grief will never go away, writing has helped me pour out the myriad of emotions and thoughts...and I think it has done its job. The blog began so that I could record Sybella's story, pay tribute to her short life...to recount events of her birth and death to all, so that it was written, proof that she exists, proof that she matters. That she is my daughter. I was desperate to have her acknowledged and writing allowed me to share her spirit and her soul, because physically, I couldnt share her. As I worked through the blog, over 20 months have passed. Sybella would be 20 months old. Writing is incredibly cathartic, and I was able to allow my thoughts to flow onto a keyboard, when my voice couldnt do it. People have been able to see a different side to me than they may in real life. Lots of things that I used to keep quiet about were raised. Passions and beliefs of mine were brought to the forefront. Many were indignant about this, but I dont care. That's what she taught me. To be strong, to be brave. To have conviction. To be at peace with not having to be liked by everyone. Not that I am giving myself permission to be loose and not monitor my words. It's just that I didnt want to be a peacekeeper anymore, and I wanted people to know what was important to me. I also wanted to stand up for those who couldnt stand up for themselves.
I dont know where these changes came from...they have been gradual, and many people have been surprised by them. Truth be told, however: I like myself better this way.
I read something the other day: "Dont underestimate me...until you challenge me."
Never before has one sentence resonated with me so strongly.

The values that have erupted from my conciousness over the last 20 months...are all so important to me. I never knew it, though. She gave me the ability to identify them, and the courage to express them.

I'd still rather have her, though.

Beautiful People

Tonight I am feeling grateful for all the beautiful mothers out there who have travelled the journey of babyloss grief with me. You know who you are.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths.

Beautiful people do not just happen."

Elisabeth Kubler-Ross

Please Don't Tell Me You Know How I Feel

Reading though the SANDS SA newsletter a little while ago, I came across this poem that resonated with me quite strongly. Mostly because I am a changed person these days. Very different to who I used to be.
It was written by some friends of a couple who had lost their little grandson to a cerebral bleed shortly after birth. Jonah' story made me cry. So did this poem.

Please don't tell me you know how I feel,

unless you have lost your child too.

Please don't tell me my broken heart will heal,

because that is just not true.

Please don't tell me my son is in a better place,

though it is true, I want him here with me.

Don't tell me someday I'll hear his voice, see his face,

beyond today I cannot see.

Don’t tell me it is time to move on,

because I cannot.

Don’t tell me to face the fact he is gone,

because denial is something I can't stop.

Don't tell me to be thankful for the time I had,

because I wanted more.

Don't tell me when I am my old self you will be glad,

I'll never be as I was before.

What you can tell me is you will be here for me,

that you will listen when I talk of my child.

You can share with me my precious memories,

you can even cry with me for a while.

And please don't hesitate to say his name,

because it is something I long to hear everyday.

Friend, please realize that I can never be the same,

but if you stand by me, you may like the new person I become someday.

This Is Me

This is one of the most amazing blog posts I have ever read. This spoke to me in volumes. Carly Marie does it once again. 

October 15 2011 ~ Pregnancy and Infant Loss Remembrance Day

On October 15, 2011, it was Pregnancy and Infant Loss Remembrance Day. Last year, Kelvin and I hosted a candlelit balloon release on the beach for all the families who had lost children. We had dreams of hosting a large gathering every year, and wanted to be able to give these families an opportunity to commemorate their babies annually. However, this year, with a new baby and a little boy who was still finding his feet at school, we opted for a smaller, more intimate event with close friends only. It was lovely, and I was able to honour Sybella and really be in the moment, be in touch with my feelings...as much as I enjoyed hosting last year's event, I didnt get much time to focus on Sybella myself. I was very busy making sure everything was running smoothly. So it was lovely, this year, to just have a little picnic with some other babyloss parents, then move to a secluded little area and release balloons for our babies. The weather was gorgeous, a light breeze blew, and it was comforting and serene. After our little gathering, I went home with my family and we spent some quality time together. Just being together, feeling the profundity of the occassion and remembering the little girl who is such a huge part of our family but just isnt here with us. At 7pm, we lit our candles for the Wave of Light and we kept it burning for one hour. I always get especially emotional when I light a candle for Sybella. I am not sure why. Perhaps because the fragility of the flame reminds me so much of her little life. Just snuffed out in the blink of an eye.

On October 14 2011, the NSW government officially declared October 15 as Pregnancy and Inant Loss Remembrance Day across the state. While this is an enormous step forward and a key moment in ceasing the silence of infant loss, the next move is to have this day recognised across Australia. PILARI have begun an initiative to achieve this recognition. If you would like to join the initiative, you can click here to sign the petition and email your local MP.

Kristina and Caroline

Last night, Australian Story on ABC1 featured Kristina Keneally, former Premier of the Australian Labor Party. Kristina gave birth to Caroline, who was stillborn. Caroline had a fatal birth defect and died upon delivery. The episode was compelling and powerful. This woman is an inspiration, not only to babylost mothers, but to women everywhere.

I have always found her to be very dynamic and have liked her strength and fearlessness. This was before I was aware that she had suffered the stillbirth of her daughter.
What resonated with me the most, was again, just how much I could relate to the things she was saying about her experience. I find it truly remarkable that so many women who suffer infant loss say exactly the same things.

Kristina's husband, Ben said: "A few days later we went back to the hospital. It was very strange being in a maternity hospital and knowing that there were children being born all around and that that wasn’t going to happen for us."
Oh snap. I was hearing the first cries of babies being born in the birthing suite next door as I laboured with Sybella. I had a hard time believing that my own baby wasnt going to make a sound when she came out. It was an intensely painful feeling.

Kristina comments: "I do remember coming home and there was that damn vacuum cleaner. I just threw it and I broke it. Before I went to hospital I had been there with my normal life doing normal things like vacuuming - and when I got back my normal life was still there, but it wasn't. It was so vastly different. And that vacuum cleaner just seemed to symbolise all of that."
I remember leaving for my routine 34 week appointment with my GP. As I walked out the door, I noticed a giant bird dropping on the outdoor steps. I rolled my eyes and made a mental note to get Kelvin to scrub it off. Of course, it was at that appointment that I learned that Sybella had died. I didnt return home again until after I had delivered her and spent some time in hospital. That was about four days. When I got home, the bird dropping was still there. I looked at it incredulously, wondering how on Earth things had changed so much since I last looked at that damn thing.

Kristina goes on to say: "The absolute sadness of becoming the mother of a stillborn child, of Ben and I becoming the parents of a stillborn daughter. We felt like we were entering a club we didn’t know existed. We felt like we didn’t want to become members of this club..."
It is a horrible club to belong to, yet, some of the women I have met through our experiences have been the most understanding, gentle yet strong women I know. Each and every one of them fight for their child's memory. They dont allow their child to be forgotten, just because that child isnt physically present. These women are the most beautiful mothers I know. Isnt that bittersweet, that the most beautiful mothers are ones who dont have their children in their arms?
The palpable sadness of being the parent of a dead child stays with you every day. You are reminded all the time, at all the special occassions...Christmas, birthdays. You never stop wondering what your baby would be doing at that time, if they were here. It's just so sad.

One particulalrly poignant question that Kristina asks is: "It’s the biggest question women ask themselves - Why did this happen? Why did this happen to my baby? Why did this happen to me?"
How many times have I asked myself that? I spent Jack's entire infancy trying to protect him from harm. SIDS terrified me. The thought of one of my children dying (before it had actually happened) sent me into panic and I couldnt bear the thought of it. I read stories in magazines about women who had lost children, and I often cried. I couldnt imagine it happening to me. So why did it? Why was I chosen to be a babylost mother? I dont think it is fair. It's not fair that children die at all. I've learned just how redundant it is to ask 'why?'

Kristina says this, and this is self explanatory. She echoes the thoughts of probably every woman who has lost a baby. "Stillbirth is a tragedy...it was most remarkable to me how much I could love a tiny little baby who had never drawn breath. It’s impossible to compare the loss of Caroline to anything else I’ve experienced. The loss of a child stays with you forever."
I couldnt have said it better myself. Sybella's death was such a defining moment for our family. And the worst thing that has ever happened to us. Nothing else comes close.

Her final and most profound comment is: "I know something you guys don’t know. I know something about me that you guys don’t know and that is that I am tougher than you understand. I am tougher than you think because I have been through something truly awful and I have survived it. I’ve come out the other end."
It's true. You can deal with anything once you've dealt with this. It makes you so tough. Sometimes being that tough is tiring. But it makes you a better mother, I think. It makes me fiercely protective of my living children, which is why I advocate so strongly for childhood vaccinations. It makes me careful and aware of their safety at all times. It makes me live for their happiness and security. And it gives me the voice and the inclination to spread awareness about stillbirth and to keep the memory of Sybella alive. Because stillbirth and infant loss make some people uncomfortable...so being tough ensures that I can keep on keeping on in regards to my daughter and her memory.

You can read the full transcript or watch this episode of Australian Story here.

Offspring

I havent written in a long time, I know. It has nothing to do with not needing to write, or that I dont think about Sybella. I need to write just as often as ever, but as those of you with babies know, there is barely time for a bathroom stop, let alone blogging at the moment. Archie is a happy, cuddly, smiley, babbly baby. But he doesnt SLEEP! And so I am exhausted beyond belief. Sometimes to the point of tears. This evening was one such time. Last night, I dont think I had any real, deep sleep at all, but was in the "twilight" zone. My mind was in a dream state, I was partly awake the entire night as Archie fussed and fed.

Me and sleep deprivation dont go together. At all. When I get to the point where I'm crying, I have to mentally slap myself to remind myself that I have a baby who is alive. That's all that matters. And one day, I will sleep again.

Archie and I had a bath tonight, and I got into bed at 7pm, started to breastfeed him and catch up on the second season of Offspring, an Australian television show, about Nina Proudman, an obstetrician.

Some of you may know the significance of Offspring, especially Season 2, Episode 7, 22 minutes and 23 seconds in.

A baby is stillborn.

Offspring got it right. For those of us who have lived through it, we were that mother. I felt like I was living it again. I felt like I was on the screen, I felt like I was watching myself. I was paralysed with stomach churning anxiety while the events played on the screen, until Nina Proudman, upon being asked by the mother if she could see her baby, walked down the corridor of the hospital, swaddled baby in arms while a song played, the lyrics as apt as can be:

I told you. I told you I'd be here.

And I feel you. I feel you disappear.

I'll give you... I'll give you all you want.

 I'll watch you.

Then I couldnt help the tears that fell from my eyes, I cried so hard, that to call it "crying" isnt even right. It was face-soaking, gulping, blurry, temperature raising, grief and I could hardly bear the pain that was swirling in me. Salty tears dripped onto Archie's head and I buried my face in his soft neck while Kelvin stroked my arm. For that moment, I missed her like I couldnt believe and I wondered how on Earth I had gotten this far without her.

When the mother learns the news, she looks around in bewilderment, she begins to shake. The mother sobbed. She heaved with sobs. She swings between hyperventilating and holding her breath. I did that. I couldnt catch my breath. I remember, with every millisecond that passed after I had the information that Sybella had died, I couldnt believe it. All I wanted was to go back to the moment before I lay on that ultrasound table, when my world was normal again. How a world can change in the space of 30 seconds.

When she meets her baby, her expression swings between despair and grief but amazement and wonderment and pride at what she had created. How did they know? The Offspring people? How did they know that we screamed and beat our breasts and grieved our dead babies but still wanted to show them off? "Look! Look what I made! She isnt alive, but isnt she beautiful?"

It takes something like that, even though it is a TV show, to refresh the feelings, smells, and ambience of that time in our lives. Humans are made so that initial levels of new and fresh grief and anxiety have no choice but to dssipate in their intensity, as we cannot survive with those high levels of emotion. I'm constantly sad and miss Sybella crazily, but I havent felt that raw, trembling grief in nearly 18 months. It left me drained and wrung out and exhausted. But I am glad I had the opportunity to "feel" it, because it took me to a space of just her and I.

It was an impressive effort from Offspring, and I commend the writers, producers, directors and actors involved in that particular episode. I thank them for their courage at tackling such a "taboo" topic so respectfully and gently.

Walking Her Down The Aisle

A while ago, Kelvin and I attended a wedding. It was lovely. I love weddings.
The bride's father's speech went something like this: (Paraphrasing here)...

"When J was born, my wife asked if I wanted a boy or a girl. As a man, most would think that I wanted a boy. But I didnt. I wanted a girl. When my wife asked why, I explained that on the day of my daughter's wedding, I couldnt wait to be the man who got to walk her proudly down the aisle. I considered it an honour and a priviledge to have daughter that I could walk down the aisle."

I listened to this and my heart melted. I felt my husband reach for my hand and when I turned to look at him, his eyes were filled with tears.

He'll never get to do that.

Anxiety

I am a long time sufferer of anxiety, long before I lost my baby girl. I deal with anxiety constantly, and have done for a long time. It is debilitating for me, and difficult for those close me to understand and validate. I dont choose to be anxious, it is an innate facet of my personality. I dont choose it and I dont enjoy it. However, I also dont give in to it. Well, I try. I am not always successful. But I consciously work extremely hard to run my anxiety out of Dodge, and some times are more successful than others. I refuse to say this, though: "It is who I am. Deal with it." I refuse to let anxiety win. But it is two steps forward, one step back. Always.
Yes, anxiety is a huge part of me. But I constantly challenge it. It doesnt always seem like that to the outsider. But for me to physically manifest an overcoming of an anxious compulsion, it takes an incredible amount of work inside my mind first.
So, for someone like me, the experience of a stillbirth is so terribly unfair. Because now I suffer from Post Traumatic Stress Disorder too, and this manifests itself in a panicky fear for the wellbeing of my children. I am incredibly vigilant regarding the health and safety of my sons. I am perpetually fearful that one or both of them will die too.
Right now, a Whooping Cough epidemic rages in NSW. There is not much that I can really do about this, except vaccinate Archie on time (even early), restrict visitors who havent had a Pertussis booster, restrict Archie's trips outdoors, and when I do have to go out with him, cover him in the pram.
Many people think this is over the top. My own husband included. And my psychologist.
I have spent many years appraising my anxiety, calculating risk, cognitively assessing actual threat and deciding whether my anxiety was warranted. Many times it wasnt.

Not this time. This time it is valid.

I resent the fact that because I have a history of anxiety, I am now "tainted" as though "the boy who cried wolf." Anxiety was not something that I liked about myself. My fears, even though they seemed stupid to someone else, were very real to me. And as I slowly got better, I saw that my fears were silly. But now, when I am presented with a very real threat, and a viable risk, like Whooping Cough, I am treated again as if I am overreacting. It is thought that it is my anxiety disorder shining through.
Well, it isnt. Yes, I have anxiety. Yes, I see that my fears may have burdened you in the past. Yes, I take responsibility for the fact that you may not take me seriously now.

But I have a new baby. A new baby, born after a stillbirth. A new baby who spent 4 days in Neonatal Intensive Care with respiratory distress. A new baby who was hospitalised at 8 weeks old with Bronchiolitis.
My fears about Whooping Cough are valid. And realistic. I am a mother who will protect my children at any cost, even if it seems dumb to you. If you havent lost a baby...if you havent held your lifeless child in your arms...if you arent a mother...you wont get it.

If you urge me to take the cover off my pram "to challenge myself and see that nothing will happen"...I wont.
If you urge me to let a stranger hold my baby in a resturant...I wont.
If you are a selective vaccinator and think it is unneccessary that I got myself a Whooping Cough booster...it isnt.
If you think I am militant and fanatical...I am.

Because they are my children. And I cant lose another one.

Birthmarks

Whooping Cough

Some might be put off by what I am about to post. But I am at the end of my tether. I have no patience left, I have no tolerance left. I have no more polite "ah, yes, it's all a parent's choice, innit?" benign smiles left.
A serious Whooping Cough epidemic rages and I have a three month old baby. A baby who has only been eligible for one Pertussis vaccine so far. He isnt due for his next one until June 21st. Let me tell, you, I am crossing off the days until then. He isnt fully protected from Pertussis until he is six months old. How horrible and wrong that I am wishing away my baby's youth, I am pushing and hoping for the day that he is six months old and can receive his Pertussis booster because of misinformation, lack of education and unfounded fears regarding vaccines. I cant enjoy this beautiful period, I live in fear that he will contract Whooping Cough and I am desperate for him to be older so he can be safely immunised.
I fear every time I take Jack to school. I tense up every time I hear someone cough. Am I paranoid? Am I overreacting? Maybe. I take precautions to protect Archie. I limit my social life to keep him indoors. When forced to go out, he stays in the pram with a cover over the top.
Recently, Archie was in hospital with Bronchiolitis. He currently suffers a post viral cough. Here is what I do: I document the time of every cough and the number of coughs per coughing episode. I have had him swabbed for Pertussis, just in case what I think is a post viral cough is actually the start of this insidious disease. I have a script for prophylactic antibiotics on standby, just in case. I stupidly google the stories of Carter Dube and Dana McCafferey, newborn victims of Pertussis, to see if Archie is exhibiting any symptoms that those babies began with at the start of their illness.

If you are a parent who has lost a child, you may understand my anxiety. Going to extreme lengths to protect your other children from a potentially life threatening illness may not be unreasonable. Others may think I'm a lunatic. Or overprotective. Thank God I have never watched my baby cough for one minute straight, experience apnea, cyanosis and I never want to. Tragically, as vaccination rates drop, chances that more and more newborns will contract Whooping Cough rises.

Here I go:
If you dont vaccinate, you are responsible for the decrease in herd immunity. The prevalence of vaccine preventable diseases increases and this is on your heads and your heads alone.
It is your fault that parents with new babies fear going out in public. It is your fault that social lives are stunted, anxiety is increasing and babies are getting sick.
Prepare to be ostracized as disease rates increase.
By all means, do your research. Anti vaxxers bleat that they've done their "research." Unfortunately, their "research" is not evidence or science-based. It more often than not comes from dubious, unsubtantiated sources such as Natural News and Dr Tenpenny, two of the most dangerous and frighteningly diabolical sites for vaccine information. People who trust these sites lack critical thinking skills and even basic intelligence. Offensive, perhaps, but I firmly believe it. Google is not a research tool.

Please get your Pertussis booster. Many dont realise that this immunity wanes after ten years. Anyone in contact with a new baby needs this booster if they havent had one in the last 3-5 years, to be safe. Our family is completely up to date. It is the best gift we could give Archie. Dont be worried about "toxins". None are are dangerous as the Bordetella Pertussis toxin, that causes the coughing episodes may leave babies not only breathless but without oxygen. Infants are also at high risk for secondary bacterial pneumonia. They are also at risk for neurologic complications such as seizures and encephalopathy as a result of hypoxia from coughing or possibly from the bacterial toxins.

Get your booster. Immunise your kids. If you dont, you are a fool.

Broken Hearts - Finnan's Gift to the Royal Children's Hospital



Please donate to Finnan's Gift. 

Support through Finnan’s Gift will play a vital role in securing the new echocardiography scanner for the Cardiology Department at The Royal Children’s Hospital, Melbourne.

Out-Grieve Me

A Letter

Thank you. For telling me I could rely on you. But I couldn’t.
Thank you. For earnestly telling me to call you any time, day or night with any problem. But when I did, it wasn’t okay.

You pretended that you understood what giving birth to a dead baby was like. You had no idea.

If you did understand...

You wouldn’t have told me my anxiety in my subsequent pregnancy was abnormal. It wasn’t abnormal. What IS normal when your baby is dead and you carry a new one? Your body and world are filled with fear and grief. And a smidgen of hope. Just a smidgen.

If you did understand...

You would have smiled more. In a nice way. Not the smile you did as you joked about what a pain I was.

If you did understand...

You would have known when I had given birth to Archie. You never even checked.

If you did understand...

You wouldn’t have told me that other babylost mothers didn’t act like me.

You would have seen I was struggling and taken it seriously.

She was my baby. I knew her from the inside. She died. Her birth and death damaged me in a way that will never heal.

You have five children and never, thankfully, had to have a funeral for any of them. Lucky you.

You don’t understand.