Tuesday, August 9, 2011

How many children do you have?

How many children do you have?

It may seem like a really simple question for most, but when you have lost a child it is one that you struggle with each time it is asked. Personally I answer it depending on who is asking the question. For example if I am in the supermarket and the cashier is just making small talk I will say 3, but if I get the chance to bring up my firstborn daughter Yasminah in conversation and get to include her in my family I tell them I have had 4 children, but my second child passed away before birth at 37 weeks.

So what do you do when the government, the Australian Bureau of Statistics (ABS) in particular asks -
For each female, how many babies has she ever given birth to?
Include live births only
Exclude adopted, foster and step children

Personally this question had me torn. I gave birth to Yasminah, she is my child.

Many of my friends and the babylost community were in uproar! How can we not include our stillborn babies? We gave birth to our children, we held them in our arms. What about families who have adopted children or are foster parents? Why do they not get to include their children?

The following experts were obtained directly from the ABS, but I thought it was important that the information was highlighted so that we can all understand why the question is asked and why it is worded the way that it is and remove a lot of the confusion out there about this question.

This question is asked by the ABS to analyse the changing trends of the contribution of births to Australia’s population growth.

The term "fertility" is commonly used to refer to the capacity to, or the occurrence of conceiving and becoming pregnant. The term 'fertility' is used by the ABS in the context of 'measures of lifetime fertility' as a demographic concept, rather than a person’s biological ability to conceive. The Census aims to measure the population's performance in replacing itself by reproduction.

The term 'birth' is used to refer to the number of babies contributing to population growth, rather than the process of giving birth to a baby.

The ABS recognise that the use of the above terms (fertility and birth) may upset or offend some people. None of this should be taken to mean that babies that pass away before or during birth are not important. They are incredibly precious to their families, and are included in official statistics. The terminology used is consistent with guidelines set by the United Nations.

There are comprehensive statistics collected by State and Territory health departments on all births (including fetal deaths of at least 20 weeks gestation or 400 grams weight) and neonatal deaths. The national results are collated by the Australian Institute of Health and Welfare's (AIHW) National Perinatal Epidemiology and Statistics Unit and published in the annual report Australia's Mothers and Babies - Perinatal Statistics Series No. 24 (Cat. No. PER 50).These reports are available free on the AIHW website www.aihw.gov.au.

Australia has very good quality death registration statistics and particularly perinatal statistics, and therefor it is not necessary to include an additional question on the Census on stillbirth and perinatal deaths.

Did you include your stillborn child in tonight's Census?
If you want to make a difference and have your voice heard and have all children counted in the next Census 

There will be an opportunity for further consultation, research and testing of the question wording before the next Census in 2016. In late 2012, the Australian Bureau of Statistics will call for submissions in preparation for the 2016 Census and invite public comment on changes to the Census form

The full article regarding question 32 can be found here 

What are your thoughts?

The Special Mother

Last night I shared this poem called 'The Special Mother'.

I remember so clearly the night I found this poem, it was the night we were told that our daughter had congenital abnormalities and we were at that stage unsure what the future held for us and our unborn child. I didn't save the poem at that time and went back to search for it but couldn't find it. A few weeks after Yasminah was born, I found it again, or rather it found me. Although I am Muslim and believe in Allah, I still connected with this poem. The thought that somehow I had been 'choosen' for choice of a better word to bare a child who was different, who would be deemed by society as 'disabled' was life changing.

It is natural to ask why? Why me? Why our baby? What did we do wrong? I treated my body as a temple when I was trying to conceive and finally pregnant. After having such a hard battle and fight to even bare a child, I knew how sacred the gift of life was. I ate a balanced diet, I drank 8 glasses of water every day, I slept on my left side, I did gentle exercise, I didn't smoke or drink or take drugs, so WHY did this happen to me?

This poem in many ways answered that question and helped......it wasn't anything I did or didn't do, but God knew that I could handle this. We have a saying that Allah will never give you anything more than you can handle in life. This still seems somewhat cruel and very hard to hear, but in many ways I understand it and can appreciate the gift I was given.

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:
"Armstrong, Beth, son. Patron saint, Matthew."
"Forest, Marjorie, daughter. Patron saint, Cecilia."
"Rutledge, Carrie, twins. Patron saint…give her Gerald. He's used to profanity."
Finally, He passes a name to an angel and smiles. "Give her a disabled child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied."
"She will never take for granted a spoken word. She will never consider a step ordinary.
When her child says "Momma" for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in mid-air.
God smiles. "A mirror will suffice."

Maybe if........

Maybe if you met her, you might understand. Maybe if you met her, you may feel this pain. Maybe if your met her, you might miss her too. Maybe if you cared enough, you would of been there when I needed you.

Maybe things will never change, and that's alright too.

Thursday, August 4, 2011

A little lost

I always feel a little 'lost' around the 26th of each month. Today was no exception and despite having planned my day and to do list ready in hand, I hardly got through it. I try to make the most of each day as life is so precious and you never know what lies ahead.

We have a beautiful screen saver slide show of all our family photos on our media PC and Yasminah's photos are included. We don't have many photos of her but I deeply treasure the ones that we do have. She was just so beautiful and perfect! a true little angel. Little bits of her and memories come back to me as I watch the slide show. As I brush her younger sister's fine auburn hair each day, I think about what it would be like to also have her beautiful thick black curly locks of hair to brush, so different from her sisters.

Tonight after we read our bedtime story we blew kisses to Yasminah in heaven.

I just had no motivation today, no get up and go. Life goes on, but sometimes we just want the world to stop with us.

Monday, August 1, 2011

I wish I may, I wish I might, dream about my angel tonight...

Do you dream? Do you ever remember your dreams? Do you understand what they mean?  Do they mean anything?

Two nights ago my husband and I both had the same dream, we were watching our youngest daughter run! At the moment our twins are learning to walk. They are both happy to cruise around hanging onto furniture or holding our hands but not confident enough to let go and go off on their own, which personally is perfectly fine with me as I don't know what I am going to do when I have two little people running off in totally different directions!! Something they already like to do, one holding each hand pulling me in opposite directions. The day after having this dream Aaliyah took 9 whole steps on her own! All be them a little wobbly, a surfing moment at step number 5 before regaining her balance for the next 4 steps. I was loudly cheering her on for every step of the way and deafening my best friend who was currently on the phone with me listening as I yelled out each step.

Whenever my children reach any milestones, I always end up thinking about Yasminah and how we have missed out on these sorts of things with her. We will never see her take her first steps or run with her brother and sisters. It makes me sad.

I have only shared this with a few people, because it wasn't until later, much later after we lost Yasminah that I remembered this dream. When I was still pregnant with Yasminah, around week 35-36, I dreamt about Yasminah. At this stage I was on bedrest patiently waiting to get to the magic 38 week date for my scheduled c-section. It was such a strange dream and the only way I can describe it was confusing.

I dreamt that I had given birth to our beautiful baby girl, but I couldn't hold her. I could see her, but I kept reaching out my arms to hold her but she was just out of my reach. I felt like I was floating, trying to reach out to grab her. I remember mentioning this dream to my husband when he visited me that night. We knew when she was born she would be admitted into the neonatal intensive care unit for monitoring, so my husband just said the dream could just be about us not getting to hold her straight away as they will be taking her to NICU.

Was my dream a warning of what was to come? Was she trying to let us know that we wouldn't get to hold her forever.....

This is the one and only time I ever dreamt about my daughter and every night I wish, and wish, and wish that she might visit me in my dreams.