Seeing Things Differently

Found in: SCEA News | Published on: 01 June 2016

I believe that everyone has a story to tell. And I am grateful for the opportunity to tell mine. Not for sympathy or pity but so others can be encouraged that there is always plenty to be grateful for.

Lance and I were high school sweet hearts. Both from Christian homes, we married when I was 20, and travelled and lived abroad until our first daughter, Chaela, was born.

Whilst living in Donnybrook for a tree change, I fell pregnant again. I knew something was different as I was really big and felt terribly sick. When Lance jokingly asked the sonographer “There is only one in there, isn’t there?”, we were stunned when she replied with, “Well, actually, there are two!”

Our beautiful identical twin girls, Bethany and Caitlin, were born at 35 weeks by emergency caesarian. Unbeknownst to us, they had Twin-to-Twin Transfusion (a complication of identical twin pregnancies that stops the babies from growing properly, and can result in death of the babies) and both girls were extremely sick. Thankfully after three weeks, we were able to go home.

At three months old, we noticed that both girls had a squint and limited peripheral vision. A month later, they were hospitalized with bronchiolitis, signaling the start of asthma and breathing problems, which resulted in them being in and out of hospital on a regular basis.

At 17 months old, the girls had their first surgery on both eyes to correct the squint. We were under the impression that this would solve the eye problems and lo and behold, within two days, they both walked for the very first time!

When the twins were two, we moved to hills of Perth. Both girls needed more eye surgery, and we needed to be closer to specialist care and hospitals.

Our delightful son, Declan was born when the twins were four and, asthma and allergies aside, things went well for a while.

At seven years old, Bethany’s vision inexplicably started deteriorating and Caitlin lost 95% of her sight within a few months of turning eight.  The squint Ophthalmologist was at a loss, and you can image that we searched high and low for an answer and fought to have the necessary tests done.  At last we received a diagnosis of Optic Neuropathy, which means that there is limited communication between the girls’ eyes and their brains, and their Optic Nerve is damaged and shrinking.

Optic Neuropathy is a permanent and progressive genetic condition usually presenting itself in boys and resulting in vision loss in the second or third decade of life. The fact that this condition has not shown up in either side of our families before, and its unusual presentation makes me realize that God’s bigger picture is one in which we all have a role to play.

The girls are now 11 years old.  Bethany has lost about 30% of her vision. She functions well and without any extra assistance.

Caitlin is now legally blind- not that you would know, the way she gets around! She uses a long cane, can only see hand movements beyond one metre and can’t distinguish between colours. Though she has been going through a grieving process these last 12 months for the things she can’t do anymore (and her sister can), she is an incredibly resilient, outgoing, and fearless child.  She loves drama, Girl Guides, swimming and soccer.  She is learning to use voice over technology and braille  and is an expert at mind-mapping.

This year, Caitlin has been nominated to be a Telethon Child. As a family we are passionate about fundraising for Guidedogs WA, as we will benefit from their amazing work in the future.  This year we all ran (‘Jog for a Dog’) in the HBF Run for a Reason, and have hosted a ‘Dining in the Dark’ party, where guests were blindfolded for a tea party to experience what life is like for Caitlin.  We are now proud Sponsors of a new Guide Dog puppy, whom we are excitedly helping choose a name for!

Our girls’ health has completely changed our lives and it affects us everyday. I never imagined the amount of ongoing, never-ending fighting I have to do for their basic rights and to get them the services they need.

People used to say, “God only gives twins to those who can handle it,” and I used to want to punch them! Now I am at peace. My Faith gives me enormous strength and I feel blessed that we are able to give our four children the stability and support they need. 

My life hasn’t turned out the way I thought it would. You never know what is around the corner.  Hard as it is sometimes, live well and stay faithful to God as He has your back.  Please try not to judge a child in the classroom (or anyone else for that matter); you just don’t know what may be going on behind the scenes.

Raquelle Hannen-Williams