Ok... so I have now sat here for the better part of 25 minutes staring at a blank screen, trying to formulate the words to express the thoughts that are rushing through my mind, but honestly, words seem to fail me.
Tonight I have been humbled by the kindness of strangers and blessed by the support of a community, yet at the same time, I can't help but feel ever so slightly saddened by the circumstances that have brought all of this to a front.
You see, 12 months ago we started making plans for a big family trip to Disneyland. There was a Costello Syndrome family conference slated for late July in Florida, and we wanted to attend. We were also acutely aware of two other facts... one being that it would likely be the last international trip we would be doing for quite some time, the other being that in the last 3.5 years we have often been forced to sacrifice the emotional well being of our other children for Nicola's needs, so we were going to make it a great big all in family holiday.
Then Nicola got diagnosed with cancer.
The day after she had the first scan that found the tumor she had to have an MRI and a CT scan and that was when they found the metastasis in her lungs. It was a moment that I have never forgotten because for the first time ever my husband fall apart. He cried, the heart rending sobs of a man who's very being had been shattered.
We were sitting in the room, holding each other, reeling from the shock of everything, and he said to me "This can't be happening, not now. We have plans to go to Disneyland and I'll be damned if I let this get in our way!"
I think it was at that point that we made the decision that the trip was going to happen, we were going to get our girls to Disneyland, they were going to have lunch with the Princesses... ALL of them!
It became our reward, our light at the end of the tunnel. It was no longer about the conference, just the trip. It was two years away which meant that we had plenty of time. Nicola would finish her chemotherapy, she would have her radiation, she would have the surgery to remove the cancer and she would be declared NED (No Evidence of Disease) and then we would go, we would celebrate, it would be our trip of a lifetime, but we would be celebrating something that deserved to be celebrated in style.
Then it all changed... and we realized that we would not get that celebration. We would not be given the chance to see our child NED... and our emotional need to take the trip escalated even more.
All of a sudden we were no longer wanting to go to celebrate, we were just wanting to be able to go, to have that last huge huzzah with all four of our children together, while we still have them together. The trip of a life time... the trip of Nicola's life time.
It was during Nicola's last trip to Brisbane for chemotherapy that the possibility of international travel was first raised with the Oncologists, who were very supportive of what we were wanting to do... but they recommended that we don't delay because Nicola's future is so uncertain.
We need to do what we want to do now, make memories and focus on the moment.
It was a few weeks ago that I was talking to one of the other mothers at my daughter's school during a Mother's Day event. I had to explain about how Nicola's treatment was so far not working and that her overall prognosis was now not good... Feeling rather miserable, fuelled by the fact that I couldn't help but think that I would never share a school Mother's Day event with Nicola, I explained that we were just trying to do what we could, that we were focusing on happy memories and making every moment count... and that our biggest wish was likely to go unfulfilled because we just didn't have the funds to make it happen.
We were planning the 'beg, borrow, steal' path but even still, our chances were pretty slim...
Then last week, something kind of overwhelming happened. The same mother, who is also a teacher at my Daughter's school (her daughter shares a class with my oldest girl) told me that her students were so touched and saddened by Nicola's story that they wanted to help.
And so the Reach Out With Love campaign was started within the school who has now started engaging the wider community.
I feel so humbled that a group of people who know nothing about us have been so deeply touched by my daughter that they want to help... but beyond that, I feel so very blessed that I am part of such a community that is so kind and caring that they want to 'reach out with love' to the people that need it.
I also feel proud that my beautiful little Princess has touched the hearts of so many people. In some small way, that helps to make up a little for everything she is being forced to endure. Not much, not much at all... but just a little.