A beautiful friend texted me today and said: “remember 3 steps forward and 2 steps back is still forwards”. Such appropriate words when Will has slipped 2 steps back this weekend. A simple Winter sore throat that swept through the house this week hit Will on Friday and by Saturday was a full blown, disastrous, infection. For 48 hours we have warmed him up, cooled him down, tried to clear his chest when he can’t do it himself and have worried for him… all over again.
My friend was texting me these words after I was apologising to her for us not being able to attend a fundraising party she held for Will on Saturday night. This is not the first fundraiser we’ve missed, or the first people we feel we have let down and left without an adequate thank-you.
This doesn’t sit well with me, I was raised to say thank-you; to show my appreciation for people that go out of their way to help me and support me. It keeps me awake at times knowing that people are so generously giving up their time and resources to support our family - often with little to no acknowledgment from Nick, Will or myself.
I haven’t worked out a solution to this. Our days with Will seem busier and more intense now than they have been at any other stage. No - we haven’t found a seamless routine, we don’t have a new normal, we aren’t experts and still have overwhelming feelings (at times) of stress, grief, anxiety and frustration. The more tired we get - the harder it seems and I feel like we’re getting worse, instead of better at juggling the needs of Will with the needs of our other kids… and the need to say thank-you and attend these incredible fundraising events and to be present and public seems to get more and more difficult.
What I can say however, is that when infections strike Will it reminds me more than ever why we need the support of our community. The ability to cough, adjust your body, and weight bare is so darn important in maintaining good health. Will’s rehab is starting to take shape and I have no hesitation to say it is expensive… it is horrifyingly expensive. Will is fortunate to have you all charging ahead with the fundraising allowing us to focus on his care. We have run out of words to show you all how grateful we are for your generosity and we are even more speechless at how selfless everyone is that no-one is expecting our thanks or recognition in return. As our local pharmacist found out last week - my new way of saying thanks comes in the form of silent tears!
For whatever reason, last week I was stripped of my mindfulness mojo and was flattened by a news story that quoted the cost of quadriplegia across a person’s life as $9.5million. I felt like creating some meme about when you thought you needed to raise $4million to look after your son and really it’s $9.5!
So - the purpose of this post is to say a heart felt and genuine thank you to ALL. To everyone who has signed up on www.wheretheresawill.com.au and made the dollar a day pledge or a donation, to those who have sold sausages in the rain, organised amazing galas, held garage sales and cake stalls in their driveways, given up birthday gifts for donations to Will, prayed for us, dreamt of Will walking, held football events in his honour, followed this page, read my blog on the website and held us in your thoughts… we are so, so very thankful!
We would have lost hope without you all.