ad-free
Channel / Source:
TEDx Talks
Published: 2016-06-14
Source: https://www.youtube.com/watch?v=iGQbWJbi3hg
uhhuh on a month long to Toby's for and likes lego and jumping off things I might Dawson mia is seeks I likes wombats horse riding and hugs when my daughter dies I will wash her address her I will put flowers in her hair we will play music light candles and hold her our family and friends will come to say their goodbyes I'm just giving you a
tiny glimpse into the weed universe you find yourself living in when you're a parent with a dying child the crazy things you have to contemplate when you're facing a worst via every day I've been forced to think about this but I also have an ability to be able to see hard when life feels pretty hopeless living in grace means life is more eliminating it makes me
recognize the goodness in people I appreciate the privileges I do have the power of joy love and kindness give me a sense of hype flowers from a neighbor or hugs from complete strangers it's plain such a powerful an unexpected force before her diagnosis mia had been running around skew seeing singing songs and starting to count she was a healthy energetic affectionate baby and toddler and its
results should even mastered the odds of busing of school around especially her younger brother Tybee that means the hated times aggressive outbursts lashing out at her brother pulling things off the walls at first we just thought we were really bad at this parenting geek and vowed to be more consistent with boundaries and bad times and then out of the blue mia had a seizure doctors at
first diagnosed with epilepsy but the seizures got worse over the next few months me started falling down and hitting her head so much we had to figure out with a little rugby helmet and then suddenly she was struggling to walk and talk we were living in Singapore at the time and it got to the point where we've gone through a whole team of specialists working with
mia and they seem just as confused as we were so we decided to fly home to Sydney for a second opinion there is no higher preparations are being told your child has no future hi mission I was sitting next to me is bad in the Sydney children's hospital in round lake I mean it was such a shit sleeping from her license test checking for signs of
degeneration in how I size we had been warned that it may I tested positive outlook was bleak then you're all just walked into the room with an entourage of specialists and social workers and confirmed out west fees mia has urinals steroid Lee petition isis or light infantile bass and disease a very rare genetic you're a degenerative condition that affects less than one in one hundred thousand
children it is vital the doctor said to us we're talking about years not decades may I probably won't make it to high school a young doctor on the tame study crime but we were so numb so exhausted we couldn't cry not then it had been a really long day along week along yeah I crawled into the bed with mia and close my eyes and held her
her warm little body confident make may I have reached a point we soon which would not only be able to walk or talk and we knew that within a year or two she was going to deteriorate to the point where she would be blind depend on us for all her needs and we would start feeding her fiery choose the breakthroughs in enzyme and Jane therapy until
like fragile oughta so giving up the fight for her life has been replaced with giving her the best life friends and family rallied around us and supported us they held a fundraiser to mia their generosity and kindness was pivotal in our responsibility to carve thank cards me to set up a social media campaign about Sebastian which is it's gone on to achieve more than I ever
imagined in raising awareness of this rare disease me ya LAFD bouncing it is positive it resonates and it connects people the awareness is not going to change the path ahead familia but we want people to know about batten disease to support research and see the meaning in man's life and all children affected by life limiting conditions about Sebastian images have been describes as portraits of joy
and they share a powerful story of love and support I missed the hopelessness of a young child dying our reality has given me clarity to hiring you know what really matters sorry we can order the well meaning advice about night big decisions in a crisis within a week how you should quit his job and we started packing to go home to Sydney we knew we needed
to be back in Australia surrounded by family we were just ordinary family with no expectations and have health care disability or read essays trying to find out why in the chaos of caring grieving advocating and raising a young family coming back to Australia was a big reality check may as health deteriorated quickly to the point she needed a wheelchair the excruciating white list the endless appointment
deposit paperwork and those packing sentiment forms that no one on earth knows how to fill out pro we lost precious time being signed will buy like ataca centers and schools we couldn't pry money at the problem because private schools across the board just don't do high needs kids but I hadn't brought my child time to be isolated in her first school a small special needs school
which was left in soiled nappies and the staff referred to children as walkers or chance we felt disconnected and hidden away I pulled me out of that school with nice school to go to the department education service suggested homeschooling to us the exact opposite of what we needed hi mission I had made a promise to ourselves that we would give me at the most wonderful life
possible in the time she had left there's a public primary school just around the corner from our house I will pass it often and wanted from the moment we walked into that school it just felt like we'd finally come home the bright paintings possible if the classrooms the singing and all those smiling faces nothing was too hot for the principal no problem to be he was
empathetic he asked us about our hopes and dreams we waited a few months for the rams to be built and may have started school there at the end of last year being included in a big school community has transformed our lives it is everything we craved it gave us hope we could give me on a regular childhood as regular as a candidate mia has shown me
the most ten dot by giving elements of the human spirit I am immensely proud outdoors to teach his kindness empathy and acceptance they a beautiful qualities to foster in our children at school kids hold me as mia's hand they profit head back up on the headrest when it falls off they've read to her they sound by his sides and I laughed with her we've made new
friendships that we hope will last and sustain us beyond me as lifetime I find beautiful drawings and Katsumi is back most afternoons I love you you better than rainbows we are best friends and on the weekends we go to birthday parties and playdates mia has a powerful ability to connect with people Scott see or talk you can't move independently but she makes an impact and being
witness everyday to the beauty of humanity is a privilege for me people smile rate chops offer to help and show us incredible kindness I have a new perspective to be able to recognize and appreciate the small but not inconsequential human elements of connection I think he spy stranger on the cheek and a doctor's wife humor I've hugged and cried together with moms in the pocket only
just met I've listened to a nurse tell me about her experience of losing her children and seen the bare faced exhaustion love and fear on faces in pediatric wards and at the children's hospice we attend within our communities both virtually and locally we experienced depict connections in love we would never of nine if may have wasn't time perhaps in our situation it is just simply a
desperate need to do something when you were so powerless you really will do the craziest things when you think it might just help performing his diagnosis we were told the chance of awesome having the C. Ellen to batten disease mutation was one in four thankfully he isn't affected but I'm healthy four year old cont but help have some pretty we'd ideas about what growing up looks
like hanging out my kitchen recently Toby pops up but my teeth go wobbly and full out probably when you're about five or six like mia but still be up to walk when I'm five we try to be honest with tiny beads to help prepare him for the day when he's big sister white be with us anymore physically my six year old cot hug me anymore his
seizures are constant but she lost the feel of Warsaw and riding a horse H. wake and she caught get enough of our hearts present moment is the only place where I want to be right now I've been forced to leave via and letting go if tomorrow next week next month allows me to focus on what really matters right now life is more vivid more beautiful more
profound and meaningful and of course unspeakably sat I have come to accept that there is no IQ often my Georgia one day I will no longer have a warm little body to snuggle up with at night so when I put flowers in her hair and friends and family come to say goodbye I will remember the human capacity for hard is so strong that even when you
