What a ride!
For the last five years, we have been sharing Dexter's story.
It's not always been easy, sharing our hopes and fears; our celebrations, our shattered dreams and our biggest worries.
Over the last five years, we have gotten to know some really incredible people. The support we have been shown is often overwhelming. The love and positive thoughts that are showered over Dexter make our hearts feel warm.
Thank you for learning about Dexter and staying with us, to hear his stories.
Thank you for helping us through our bad days. Thank you for accepting us, as we are, and as we grow and change. Over the last six years, we have faced countless hurdles and our bad days have been truly awful. That changes you. We've often stumbled and tripped, but you have been there with us. You've waited patiently for us to find our feet, again.
We used the website, as well as the Love Dexter facebook page, to update family and friends on Dexter's treatments. Back then, we only posted during the chemotherapy days. We shared jokes and funny pictures, boredom busters and treasure hunts. We posted when Dexter was back in hospital, for transfusions or infections. The posts were always written as Dexter, in a cheeky and positive tone. We kept the scary stuff short and emphasised Dexter's personality. That tone has stayed and we still write as Dexter's voice.
We chose the name Love Dexter for a few reasons. It can be an affectionate signing off - Love, Dexter. It is also a gentle command, to love him. And, we do! That kid... people who meet him typically fall hard and fast for him. There's something about him that draws people to him... He sees the good in people and he brings that out in them. People want to be near him.
Sometimes, we open our hearts and share our bad days, our bad moments and our biggest fears. Sometimes, we vent. We do that for a couple of reasons; if people understand our fears and frustrations, they may understand us more and, we think it's important for people who 'look up to us' to realise that Dexter's story is not all cheekiness and happiness. It's tough, this disability thing. Childhood cancer is awful. Things are hard... and yet, there's always a silver lining, if you look hard enough.
For every person who whispers about Dexter, who judges or dismisses him, we have even more people standing beside him, celebrating his achievements and embracing his strengths. Thank you.
**Dexter's hepatoblastoma. His chemotherapy treatments, his blood, platelet and plasma transfusions, his weekly blood checks and his regular scans. The day Dexter had surgery to remove the cancer from his liver. Five years later, these days are still so vividly clear in our minds.
**Surgeries. His hips - twice, including the femoral osteotomy, when Dexter needed crash carts and we went very close to walking out of the hospital without him. The long weeks while he was in his casts and the years of setback to his development almost broke us, but Dexter helped us focus on the future and on staying positive. His 'nuts' surgery... (You guys missed the groin hernia, when he was four months old.)
**Dexter's equipment for his cerebral palsy. We have always felt such happiness for the days we got new equipment, because you shared in our celebrations. We love how you feel so proud of Dexter, when he achieves each new goal. Thank you. Thank you for seeing his strengths and courage, rather than his limitations.
**The house renovations - wow that was a busy time! It was tough, too. We were very involved in the process and worked on the house during the weekends and holidays. We are now very close to finishing the house. We could not have done the renovations without the support of some incredible businesses and generous people. Thank you. It wasn't easy, but the freedom Dexter has in his home now, is priceless.
**Pneumococcus, bouts of pneumonia, and a helicopter flight to Sydney. For a while there, we spent a lot of time in hospital!
**Cortical visual impairment. While this is a daily issue, we don't often mention it. We learned we have until Dexter is about eight years old, to teach his eyes and brain to better communicate and understand what Dexter is looking at. We try to provide as many vision therapy opportunities as possible.
**We've shared many wonderful experiences and opportunities. Dexter really does love adventures, so we can only hope that there will be many amazing experiences yet to come.
**School. Really, Dexter loves it! We see such growth in him. He is so much more alert. He is so happy, but becomes angry if he thinks he will be late for school. He is a bit shy about using his ipad to tell his news, but enjoys using his switch to tell his friends jokes. There have been improvements in stamina and strength, concentration and feeding. His vision seems more focused and he's proud of himself.
With Dexter, we have many awful memories. Those memories are burned so deeply into our minds, that they don't fade. We never know when we might suddenly fall into a 'ditch'. We never know when the bad days will come. We do know, that when the bad days come, they are awful, but we have the strength to keep walking. We find the silver lining. We find the rainbow. We find the hope. And, in the worst times, when the hope is hard to find, we find Dexter. His little fingers on us... lying against him... holding him.... If we are with Dexter, he helps us feel calmer and more settled.
Now, we are still scared and we are often sad, but we are stronger and braver.
Thank you for joining us, on this incredible journey.
Before Dexter was born, we had no idea about cerebral palsy. We didn't know about vision impairments. We didn't understand anything about communication with people who are non-verbal. And, childhood cancer? That happened to other people.
Now, we are wrinkled and have grey hair. We're covered in Dexter's spit and are sore from carrying him. But, oh my, we are filled with love.
And, we are incredibly proud of him.
Happy five years!
I wonder what the next five years will bring?
Find Dexter on: facebook twitter instagram youtube