I have tried really hard to not tell a story that belongs to another person here, but it is difficult when their story has had a dramatic impact, so today I am going to tell the story of a friends little sister.
I grew up in a tiny country town, a town where the only rules that kids had were leave a note on the table saying where you are going and make sure you tell your parents what you do wrong before the neighbours do. It was a great place to be a kid, you knew everyone and everyone knew you. Everyone was friendly. The friends I had as a child are still friends now.
I am still friends with my best friend as a child. We went to playgroup together, kindergarten, primary and secondary school together. We had our ups and downs as any friendship does, but we remained close. Most days, summer holidays in particular, were spent together hanging out at the pool or wandering along the creek, planning sleepovers, baking and cooking, attempting to be crafty and planning ways to ditch our little sisters so that we could go on adventures following the boys. Despite our best efforts, our sisters always managed to tag along. Of course we complained, but we kind of liked their attention and admiration.As expected, we all grew up and moved away to study and work, all except on sister, she is a country girl through and through.
My best friend and I are still close, well as close as you can be when you live on opposite sides of the country. We keep in touch through email, phone calls and the occasional visit. Mostly we are kept in touch by the local grapevine that keeps me up to date with what is happening in the place we both used to call home.
On one such visit to our home town, we were talking kids. She was yet to have any, but her little sister – country girl, had two daughters who were just a little older than my kids. She was amazed at the differences in the two littlest, both of whom were almost 2. My girl-child was up and running, climbing everything and talking in short sentences to anyone who would listen, her niece sat there and watched. She was a happy girl; smiling, laughing and clapping, but she made no attempt to speak more than simple words and phrases nor did she attempt to move. She could crawl and stand with assistance but didn’t even attempt to walk. My friend was concerned, so was country girl but no-one had any answers. Happy girl’s elder sister was frustrated that her sister wouldn’t play with her and was getting so much attention that she started acting out.
They joined the medical circle, having the happy girl dragged from doctor to doctor, specialist to specialist. Eventually she made her way to the Royal Children’s Hospital for more testing. The process was taking forever and still no answers. The happy little girl remained happy, but she showed no sign of developing, if anything, her co-ordination was deteriorating.
Eventually there was a diagnosis, happy girl had a very rare genetic condition (I can’t remember the name of it) that slowly shuts the body down until the child can no longer feed and eventually breathe. I say child because the life expectancy is 10 years and happy girl’s condition was reported as being aggressive. As you can imagine, the family was devastated. The town rallied around to raise money to help the family purchase additional medical equipment, walking frames to try and encourage her to gain some mobility and then a special wheelchair when her legs wouldn’t support her. Money for family respite and services to help out in many ways, even modifying the family home so happy girl would be able to move about the house in her chair.
It was also a time of quiet optimism, country girl was unexpectantly pregnant again. No genetic testing was available but when baby brother was born he was perfect. Happy girl was losing motor function but baby brother was gaining dexterity and movement and was at the developmentally appropriate levels for his age.
Testing for the condition of happy girl wouldn’t work until baby brother was 18 months old. No one showed particular concern as he was moving about unassisted just like any other toddler, far more agile than happy girl ever was. When the test results came back showing he was positive, just not as severely afflicted as his sister – yet. How can the world be so cruel as to allow one family to sit and watch two of their beautiful children slowly die?
That was 3 years ago, big sister is now 7, happy girl 5 and baby brother almost 3. I have seen them all for brief periods during that time, but not often enough. Today we were all together at a party, my friend, her sister and the kids. Happy girl is now unable to eat food or drink and is drip fed. She spends her time laying on the floor propped up by pillows. She has some movement of her arms, but no control over them. She can turn her head from side to side but can not lift her head. She looks like a baby just laying there, staring at the ceiling appearing to be fascinated by all she sees but is unable to make a sound. Baby brother has a little more upper body movement, he can still control the use of his arms to grasp toys suspended above him and to hold a drink bottle but he to is unable to sit up unaided or feed himself. He can still eat food, for now. It was amazing to see big sister, once a rude bratty child, introduce my children to her brother and sister and show my kids how to make them smile.
I found it difficult being there and remaining composed, watching their parents struggle to feed, carry and change them. Knowing that two beautiful children were slowly dying and there is nothing that anyone can do to change that fact. Wondering if the children are aware of their surroundings and the people in their lives or if that diminishes with their bodily functions. Knowing that some day very soon we will have to say goodbye to them both.
So that is the story of my friends,their beautiful children and their struggle to survive. I had to share this story to explain the funk I am in, to explain my desire to run up and down the stairs to just check on my kids one more time, just to kiss their forehead one more time and to be grateful for the truly beautiful family that I have.