The difference

When we found out that our daughter had limb differences, I searched for other families, other children that had similar differences. I wanted to connect with these families, find out how they had felt during their pregnancy, handled the arrival of their child, other people's reactions, things that had helped them and what had been supportive on their journey.

The hospital were fantastic and referred us to a genetic specialist, who then arranged for us to see a genetic counsellor. Our counsellor was lovely, very understanding and supportive of our decision to continue our pregnancy. The hospital arranged for us to meet with Limb Specialists at the Children's Hospital during the pregnancy. We met with Professors and Surgeons and were handed prosthetics that our daughter might one day want or need to use. We discussed adapting her clothing to suit her difference. Carefully selecting clothes that we could easily alter the sleeves. Dresses instead of pants to accommodate the cast that would be placed on her little foot when she was born to correct her club foot. We wondered how she would eat, use a fork or spoon, hold a cup to drink. Would she be able to ride a bike? How would we explain her differences to our family, her brother, our friends? Would she still be able to attend mainstream schooling? It was completely overwhelming, but we wanted to prepare ourselves and understand what options and support were available and give our baby girl the best possible start in life.

One thing we wanted was to meet other families. Our counsellor mentioned one group the name of which I don't recall, but they had no support groups in our area. There was no website or forum that supported families who were expecting a child with a congenital abnormality, especially a limb difference. I was lucky that I met a lady by pure chance after a Facebook search, whose daughter also had limb differences and she lived locally. She was starting an organisation called CHILD - Children Having Infant Limb Differences to help families like us that were faced with a 'different' outcome than a normal pregnancy. I felt relieved, connected and so grateful. We exchanged emails and then messages via Facebook. We both embraced our daughters difference's and were sure that our daughter's would become life long friends. As Yasminah grew in my womb, my friendship with Katherine grew. I shared her passion of wanting to help provide a supportive place for new families who were diagnosed with a congenital limb difference during pregnancy or after birth. From our personal experiences we envisioned supporting and guiding families through friendship and educating the community about limb deficiency. Katherine was also working on her book and I was honoured to be asked to contribute Yasminah's story.


Whilst it was mentioned during my pregnancy that the Dr's weren't sure 'what the outcome would be for our baby' no one ever mentioned that our baby could die in utero. We were preparing for a life. For her life. The exciting, wonderful life of our second child, our first little girl. It wasn't the dream we envisioned, but the difference to the eventual reality was unfathomable. We dreamed of a life.

I will never forget receiving a message from Katherine asking if Yasminah had arrived yet. Katherine kindly offered me her little girls clothes that she had outgrown. Heartbroken I had to tell Katherine that Yasminah had passed away unexpectedly in utero a few days before.

Katherine still wrote and published her book called 'Our Little Miracles' and she very kindly dedicated the book to Yasminah. I was too distraught to contribute her story, but I'm so very grateful that Katherine still included Yasminah as one of 'our little miracles'. Yasminah is our little miracle. Her story needs to be told. There are approximately 1 in 10,000 children across Australia each year born with a limb deficiency. Sadly sometimes families like mine, don't get to take their little miracle home. There is now a variety of support groups for families that experience limb deficiency. CHILD provide support to parents when they find out about their newborns limb differences. The deficiency can be diagnosed through ultrasound or after birth of the child. Also if the limb loss was acquired through surgical amputation. Through their extensive network of members from throughout the world, the parents never fall short of someone to talk to. This is a beautiful thing! What a difference time can make.

I was honoured to make some very special friends along the way. My CHILD friends are still an important part of my life. I'm honoured that they still involve me in their community and feel blessed to see a small glimpse into their world. I often wonder what our lives would be like if Yasminah was here. If she had of had a chance to the live the life that we dreamed of her having. The child we had, but never had and yet will have forever!

For Yasminah

I can't always do it all. I think that I do my very best and always try to do my best to juggle everything that life has to offer me. My dad always taught me to do my best. It didn't matter if I failed, or I made a mistake, as long as I had tried my best that was all that mattered. It isn't always easy, it isn't always magical, amongst the joy and laughter there are tears and sadness too, but I always push on trying to make the best of this life that I have been blessed to be given. Living each day with joy and gratitude. I give back in memory of my daughter, in the hope that it helps ease the pain of another family and that a little piece of Yasminah is remembered and her spirit lives on. Each breath I take, I take knowing my little girl didn't take one. Not one single breath. However she did her very best to stay with us. She did her best. Yasminah has taught me more in her lifetime than I would of ever learned in mine without losing her. I continue to do my best and try to make a difference when I can. I don't always get it right, but I always try.......

The tears have fallen tonight, they haven't stopped. I felt this wave of grief coming after visiting Yasminah yesterday. I just wish I never had to feel like this :( I wish I could tell you all that everything will be OK, but sometimes I don't even believe that myself. Dealing with grief, loss, sadness day in day out takes it toll and I need to often cleanse my own soul, and release the tears to keep doing my very best.

Then tonight I received a message and I wanted to share something a very dear friend is doing for Yasminah. She is doing her best. My friend has remembered Yasminah and has chosen to honour her life, by giving back to the community and an organisation called Heartkids. She is doing something in Yasminah's memory, for Yasminah that makes my heart sing, my eyes overflow with tears and made me more of a blubbering mess than I already was tonight!

Em helped me start Yasminah's Gift Of Hope. She was there for me during my loss, during my rainbow pregnancy, through the weeks that my girls spent in NICU and is still there for me today. She was going through and is still going through her own journey. She is still trying to do her very best despite all the difficulty life as thrown at her. Amongst all of her own struggles she is doing this for Yasminah. How seriously lucky am I to have such beautiful, supportive people in my life! A friend who isn't scared to say her name or talk about her and helps share her story. She is still there for me almost 4 years on. Words can't ever truly explain the gift of having someone you can share your innermost thoughts with or just cry and they don't question any of it. They don't judge you, they are simply there for you, offering a shoulder to lean on, a tissue for when you cry. This is Em. She is a beautiful, young, inspiring young woman and a wonderful role model for her daughter Kenzie. I'm so lucky to call her my friend :)

This is what Em wrote on her fundraising page tonight......

Over the last 4 years I have had the absolute honour to call the Aziz family my friends. I remember the first time I met Rebecca was when Kenzie had just been born and she travelled out to see me whilst glowingly pregnant with her beautiful twins Aisha and Aaliyah. We spoke of our losses, our joys and our daily struggles. Sitting in front of me was a woman of warmth, grace and above all courage. A woman who had farewelled her beautiful angel daughter Yasminah only months before and was already finding ways to help others.

So in the last week I decided upon reflection about congenital heart anomalies..Kenzie and I are not just doing this run for the fun of it. We are not just doing this run to take photos. We are not doing it for ourselves.

We are running "For Yasminah".  

Whether we raise $2.00 or $2,000000 to contribute to research into childhood heart conditions we do not care. All that matters now is that we will do it for her. We cannot bring her back, nor brighten the sadness at her loss...but we can run, skip, jump and dance for her alone.

We will honour you Yasminah.

Our love
E&K

Not many people are aware but during Yasminah's pregnancy at one stage it was thought that she may have a CHD, but further tests came back with the all clear. Heartkids is a very deserving organisation. I know that they have helped some of the families we also support so understand the valuable work they are doing and the drive to find a cure for CHD.

I made a donation a few weeks ago on my birthday, but will be donating again and would love to see Em and Kenzie reach their goal of $250 before the Swiss Color Run on February 10, 2013. So please get behind E&K and do it 'For Yasminah'!

To make a donation please visit Em and Kenzie's fundraising page http://www.everydayhero.com.au/hero_pages/view_posts/emily_eyles

Thank you Em from the bottom of my heart. Words can never truly express the depth of my gratitude and how grateful Iam to have you as my friend. Love you always xx

The winners of the Butterfly Garden Ball Tickets are....

Congratulations to the following winners who have each won a ticket to attend Yasminah's Gift Of Hope Inaugural Butterfly Garden Ball to be held at Lachlans, Old Government House, Parramatta, NSW on Satruday the 11th of August from 6:30pm.

The winners will join us on this very special evening as we dress up, dance the night away, make new friends and also to remember the children who were miscarried, born premature, born sleeping or who passed away during infancy or were born with a congenital abnormality.

We will honour, remember and celebrate them during the evening.

 Rebecca Henricksen and Nate Morabito

Sharon Borig-Lathlean and partner

Jaharri Pitts and Mariah Devontae

Chrissy Rickards and partner

Kirby Richmond Davis and Glenn Davis

Kellie Grainger and Christopher Grainger

Claire Elise Griffin and Bob Lloyd

Renee Yeardye and James Yeardye

Terrilee Zimmehl and partner

I look forward to meeting you all on the evening and want to thank you for supporting Yasminah's Gift Of Hope. 

If you could all please send me an email to book your tickets

Yasminah's 3rd Birthday Memorial March

On Monday 26 March 2012, Yasminah should be turning 3. Her family should be celebrating the life she had lived. Instead, they will be reflecting on the impact she has had on so many people’s lives.

On 26 March, we will be holding the inaugural Yasminah’s 3^rd Birthday Memorial March. The concept is simple, we want to raise awareness about pregnancy and infant loss, stillbirth, congenital abnormalities and premature birth. In Yasminah’s memory, we will work to educate more people about the heart ache that so many families across the world suffer.

Through the March, we will attempt to show people some of the pages who support the work that Yasminah’s Gift of Hope does, make them aware of why we do the work we do, and hope that they will in turn, share this information with their friends and family.

If it was up to us, Yasminah’s Gift of Hope wouldn’t exist. We wouldn’t be doing the work that we do. But while families suffer through the loss of their child, struggle through the diagnosis of a congenital abnormality, or ride the rollercoaster of the NICU after premature birth, we will work to break the silence, raise awareness and provide support so no family has to go through it alone.

Each year in Australia approximately 58,000 couples experience reproductive loss:
About 55,000 experience early pregnancy loss, 1,750 babies are stillborn and about 900 babies die in the first twenty-eight days after birth – how are you going to make a difference?

Here is a complete run down of the details:

Start Date and Time - 10am AEST Monday 26 March 2012
End Date and Time - 10am AEST Thursday 29 March 2012

To complete the March:
1. You must be a liker of Yasminah's Gift of Hope.
2. You need to go to the Yasminah's Gift of Hope Facebook page and go to the 'Yasminah's 3rd Birthday Memorial March Album'.
3. From the album, you need to visit each participating business in turn and 'like' their page.
4. Marchers will need to like the status about Yasminah as they visit each page.
5. Marchers must then search through the albums on each page to find the picture with a statistic or information about Yasminah on it.
7. You need to "collect" each of these statistics and enter them into the following link - https://promotion.binkd.com/Enter.aspx?id=2993
8. Once you have visited each page and liked all the statuses, you can submit your answers.
9. Whoever collects all the statistics and submits them in the required time (before 10am Thursday) will then be in the running to win the big prize. The big prize will be chosen through random.org. Everyone will be assigned a number based on when we receive their submission and this number will then decide the winner.
10. When you have completed Yasminah's 3rd Birthday Memorial March, please share this status "Today I am celebrating the life of Yasminah with Yasminah's Gift Of Hope. Will you help to break the silence? Visit Yasminah's Gift of Hope to find out how" tagging 'Yasminah's Gift Of Hope' Facebook Page.

Guest Post ~ Children Having Infant Limb Deficiency ~ CHILD ~ Katherine Moffett

This is my very first guest blog, of what I hope will be many more. My dear friend Katherine Moffett. I will always remember when we first found each other online, I was about 25 weeks pregnant with Yasminah. It was so wonderful to find someone who also had a child with a congenital limb difference. It gave me hope that everything would be OK and it didn't matter that Yasminah had a limb difference, she would still be able to do amazing things and would always have the support and strength of her family and friends. I still remember when I had to tell Kath she had passed away :( It was heartbreaking as she had offered to pass along some of Sienna's clothes. I knew even before I had Yasminah that I wanted to help other families in some way. Katherine was the person that helped me get all the paperwork and charity started as she had only recently done it for CHILD. Thank you Kath for being the most amazing, supportive friend a girl could ever hope for. I will continue to help with CHILD wherever I can as it will always have a place close to my heart and all the amazing friendships with the many different CHILD families I have made along the way. Don't forget that you are amazing and the person who inspired me to start something in Yasminah's memory, for that I will always be grateful ♥ Bec x x


This was Katherine's post on our Facebook page last week

Katherine

I was sitting here thinking about the past three and a half years for me. All the amazing people who have touched my life thus far. Rebecca and I met after she found out about Yasminah's differences as I run Children Having Infant Limb Deficiency - CHILD. We spoke here and there, I would try and shed light on the situation because I don't like parents thinking their alone when something like this i...s diagnosed. I remember when I found out about Yasminahs passing. I was sitting in my loungeroom in Prestons, Sydney. And I read a message Rebecca had sent me. I started to cry. She was the first little baby Id had the honour of being involved with who had lost her life. So when time went on and Rebecca said she wanted to start Yasminahs Gift of Hope, I was more than happy to help with whatever I could and I'm sure you remember Rebecca, the paperwork was a nightmere LOL....But Id just like to express my absolute love and admiration for one of my closest friends Rebecca Aziz. I have the utmost respect for her and all the work she puts in. Literally! Blood sweat and tears!! She is why I still do what I do, she is my inspiration. When my ex husband left me because we had a child born with disabilities it was my friends who picked me up and who encouraged me. In the last week alone, Rebecca has helped me so much, twitter, the blog, I just cant express how important you are to all of us Bec and I pray that a big tycoon with millions of dollars comes up and says "Here love, $1,000,000 to make a difference"! Love you xxx

Pregnancy can best be described as riding a very intense rollercoaster of emotions. Some days your up, others your way down. Other times you feel like your going around in circles and the weeks and months will never end.

But once labour is over, or the caesarean section is complete and your holding your newborn for the very first time, touching her soft skin, adoring her face, it all seems worth it. Picturesque isn’t it? Sounds perfect. Well the fact of the matter is, it’s not always like this.

This is her story, it is one of extreme lows, mounting highs and all the in-between.

Siennas pregnancy seemed normal. Besides some crazy dreams about her being born with dwarfism, a reoccurring dream I had at least five times and some bouts of anxiety my pregnancy was what I would call perfect.

Ultrasounds out of the way, we were told the baby was healthy, ten fingers, ten toes, I was content and anxious to meet my little bundle. When she was born though she was whisked away to the Neonatal Intensive Care Unit of the Hospital. I saw her for one minute after she was born and she was tightly wrapped, so tight in fact I could not unwrap her blankets and any attempts to do so were squashed.

Three hours after her birth, the news was broken to me that my perfect little girl, with ten fingers, ten toes and a button nose, wasn’t in fact what I'd expected. I was confronted with a very little baby, her arms were significantly different lengths, her shoulder on the right was smaller than the left, her right elbow was fused and could not be bend and the biggest shock of all, she had no thumbs. Eight little fingers is all she had. She had major upper limb issues, a heart condition and scoliosis of the hips.
The weeks and months that followed were tough, trying to adjust to life with a child with such different needs to what I would have called back then a normal baby.

My marriage broke down. The stress was all too much and I found myself attending the hospital appointments alone, dragging a three year old with one hand while trying to push a pram with the other.

Over the past three and a half years, I’ve tried to make Siennas life as normal as possible. She never misses out. She is always involved. Never left behind is my family motto. We have all pitched in to make sure my children’s lives are as unaffected by all of this as possible.

But what do you do when a child, who is around seven years old, decides to point out that he thinks your pride and joy, your little princess, is a “freak” and is “scary”. How would you deal with this? It’s so easy to dish out advice to other parents about how to handle things like this but when it actually happens to you, it hits you like a ton of bricks.

My answer, educate the community. Teach your child that staring at someone who has a disability, or any difference is not polite. Calling someone a freak, scary, ugly, fat, four eyes, none of it is right. Sticks and stones may break my bones, but I’m telling you words do hurt. How can I protect my daughter from the big bad world when all I want to do is hide her away and protect her? I’m asking parents all over the world, to do what’s right and educate your children. Teach them what is right from wrong. My daughter didn’t ask for this. She didn’t ask to be born like this. Lately she has been asking me why she can't have ten fingers like mummy. And also why she has to keep going back to the hospital.

I am now the sole parent to three amazing children. All of whom adore and love each other unconditionally. They are all protective and respectful of each other.
Please, help me make the world an easier place for children like my daughter to feel safe and not judged because of their physical appearance. Bullying is wrong! Teasing is wrong! Poking, prodding and pushing are wrong whether the person is disabled or not!

I'm doing my best to educate the world. I started a charity in 2009 called CHILD. Children Having Infant Limb Deficiency. To date I have made contact with over 500 families from all over the world whose child has either been born with a limb difference or has an acquired limb difference (amputee). Our children are all amazing human beings. And I am trying to help them get the confidence they need to face the world loud and proud!


I’m normally a very calm and placid woman but I need to stand up and fight for the rights of my daughter now and those of other children with any type of disability. Bullying is wrong; educate yourselves and your loved ones. Bullying is ignorance and I for one will not tolerate it anymore.

Katherine Moffett

To learn more about CHILD and support Katherine's work please visit www.childorg.net.au and follow them on Facebook

Gift Of Hope for Amelia Grace

A Gift Of Hope for Linda and Raymond

Amelia Grace McGowen was born the 14th August 2010

Sadly Amelia lost her fight for life on the 21st November 2010

As I write this Linda is currently 22 weeks pregnant with her Rainbow Baby a little boy Stig McGowen Due the 2nd October 2011

Wishing Linda and Raymond Hope, Light, Love and Happiness

True Feelings

I sit here at the computer with thousands of thoughts running through my head. 'It' is almost here.....Yasminah's 2nd birthday. I have knots in my stomach and tears welling in my eyes as I try to type. I constantly debate if I should be so open about how I am really feeling.......but decide I can't keep this bottled up anymore and if I share a bit about my journey it may help another family who are going through the same heartache.

So today I am going to bear my whole heart for the world to see, to get a glimpse into life after the loss of my child. My second child, my first daughter Yasminah Ann Aziz. I think to myself that I shouldn't even know what this feels like, no one should. I should have my daughter here with me and my family. The question will always remain, why did this happen to us? I miss her so much. I would give anything to be able to hold her in my arms one more time, to kiss her sweet cheeks and cute button nose, brush her thick curly black locks of hair, to hold her little hand and caress her perfect feet. To whisper in her ear "I love you".

Yasminah was perfect to me, a special little girl to love and care for. She was born with a congenital limb difference. Yasminah had no right hand and 3 fingers on her left hand. Yes it would have been challenging at times but it doesn't mean we loved her any less or that we should be made to feel as though 'it was for the best'. Our daughter died, but she lived within me for almost 9 months. In those 9 months I watched as my belly grew, I felt the first flutters, which turned into strong kicks and waves of movement. We heard her heart beat during our ultrasounds and at each antenatal checkup. We watched in amazement as she grew and developed into the beautiful angel that was silently born late Thursday morning on the 26th March 2009 at 37 weeks and 4 days gestation only a few days from her planned delivery.

Yasminah suddenly passed away in utero on the 24th March and I was induced into labour the following day. I am often asked if I went through labour, and yes I did just like any other mum does to deliver their child. My husband held my hand and brought me ice cubes as I felt each contraction come and go. I was urged by my midwife to push when the time came and had my daughter placed on my chest skin to skin, then my husband cut her umbilical cord. She was still warm, and covered in vernix. We were scared but excited about finally meeting our baby for the first time. We never heard her cry, saw her open her eyes or got to change her nappy. We did get to spend several hours with her watching her get weighed and measured. We gave her a bath, before dressing her and wrapping her up to keep her warm just like any newborn baby. We didn't think it was a good idea at the time to bring our son who was only 20 months old to meet his sister, but wish I had thought differently about it and had at least one photo of my children together. My husband and I posed for a family photo and individual photos holding Yasminah. The time then came to say our final goodbyes. I wish at the time those close to us meet our little girl, but for one reason or another they didn't want to. We may have more photos today, more memories to share with others and with them. I understand they were scared, but their actions deeply hurt me and make it hard to talk about her with them today.

Moving on almost 2 years later and we have been blessed with our twin girls Aisha and Aaliyah. It was incredibly difficult being pregnant so soon after the loss of Yasminah but it was the best thing for me and I truly believe if I hadn't fallen pregnant so quickly I would of been too scared to try to have another child. Our 2nd and 3rd daughters had a rough start to life born 8+2 weeks premature, and endured 4 weeks through the roller coaster ride of the NICU. Thankfully they are here with us today and I couldn't imagine life without them. Having my daughters has helped me to heal and brought joy back into my life. I don't think I would be where I am today if I didn't have them and my son as part of my life.

My husband needs to be mentioned, he is an amazing man. Strong, loving, honest, wise and kind. A tower of strength and always able to make me laugh, even during my darkest moments. We have shared many moments together over the past 12 years and I love him just as much as today as I did 12 years ago. I thank him for his support and understanding, especially when so much of my time is spent away from him during the weeknights and over the weekends as I continue to develop Yasminah's Gift Of Hope. It isn't always easy, but we get through it.

I often find myself wondering what life would be like if Yasminah was still here with us. What would Yasminah look like now? What colour were her eyes, mixed shades of brown and green like her dad and big brother, deep brown like me or piercing blue like her sisters? Would she like reading books or prefer to play with dolls? Would she be using a prosthetic hand like we had talked about with the limb clinic, or be fiercely independent like her younger sisters?

Saturday is her 2nd birthday or angelversary. As a part of the charity set up in her honour we are releasing butterflies in memory of Yasminah and all the precious children and the families we support. It has been raining for the last few days and is scheduled to rain on the weekend too. We hope the weather holds off so we can enjoy the day, so her brother and sisters can play at the park. It has been hard to do and I wonder if people will remember her birthday or show up on the day. Does she matter to them? I remember her first birthday a few beautiful friends sent me cards and one friend in particular gave me a beautiful gold star pendant that we engraved her initial and dob on. I wear it everyday as a symbol of my shining star. It was so nice to know that she has touched so many peoples lives. There have been some really beautiful people show their love and support this year by donating things for the Butterfly Release like Denni from PurpleX Design and Print who has designed an amazing canvas signature board for people to sign on the day that we can take home to remember her birthday. Michelle from Goodie Bag Exchange another fabulous business on Facebook has organised for everyone attending the day to receive a little bag filled with goodies donated by other Facebook businesses. Fiona from Eaton Photography has offered to capture the day and will put together a special memorial keepsake of all the photos available for $10, with all proceeds going to Yasminah's Gift Of Hope. I am truly thankful for the countless people the loss of my daughter has brought into my life. There are so many people who have shown their love and cried with me. I thank you all from the bottom of my heart.

I hope that I am not an emotional mess on the day and that I can enjoy it remembering the love we have for our daughter and we can celebrate her life instead of mourning her loss.