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