When you have a child who is not well, your life changes. Your day to day routine adjusts to accommodate the unexpected, your moment to moment thoughts are often preoccupied with planning and worry, and the goals and dreams you had…change.
I find it hard to accept help, to accept offers of generosity and kindness. I am still trying to understand why. I think it comes from a place of fierce independence and a misplaced ‘I can do this’ attitude. The truth is we all need help – and we all need to help each other – and we need to be willing to accept it with a simple ‘Thank You’. The reason I am telling you this – to preface this post – is that it took me a long time to say a simple ‘thank you’ to Kate being granted a wish. To be aware that this was something that I should embrace for her.
There were many reasons why I put this off, Kate wasn’t well enough, Kate wasn’t old enough, Kate wouldn’t appreciate the wish, Kate couldn’t express what her wish would be, there were other kids who needed wishes more than Kate (so wrong).
It took the help of Kate’s palliative care social worker to simply say – “you are doing this”. She made the call to Make A Wish and nominated Kate and our family. She got the ball rolling with enough momentum that I couldn’t say no, and had to simply say ‘thank you’.
The Make A Wish concept is elegantly simple. What do you wish for? What do you want to do, or experience, or who do want to meet, or be most in this world? For the children who participate in Make A Wish wishing seems to come easily. They know what they want to do most.
Kate’s wish was simple, but it was also very thoughtful. You might know from following this blog that Kate can’t express her wish, but she clearly has things and people in her life that bring her joy – and as her family, Jack, Brian and I talked about what type of wish Kate would make if she could and decided we would make it for her.
Kate’s favorite things in life right now: Dora, stickers, gymnastics, school, swimming, her friends (tall and short alike) and her family.
The best wish seemed to be time with her family in a wonderful setting where she could swim as much as she wanted.
It was simply expressed and we put it to Make A Wish to come up with the design.
We were overwhelmed at what they came up with and the endless generosity of the incredible Make A Wish Eastern Ontario. They put together something that we could have never have done on our own – which is absolutely the point of Make A Wish – and they made us feel like the most important family in the world.
Kate’s wish was granted as a fabulous family get away to the Bahamas to a resort where she would have the ocean to play in, pools to splash in, waterslides to slide down, fish to watch, turtles to laugh at, dolphins to hug, and the sun shining down on her. It was an amazing get away – too short (maybe a month would have been better…or forever).
Kate woke every morning with laughter and giggles. Make A Wish had made it possible for her caregiver to come with us – and sleep right next door. Kate would bang her on door in the morning ready to go. She was the first one into her bathing suit (and it had to be the blue one with the flowers), even before we had had breakfast. With her ‘entourage’ (us) in tow, she would be ready for those slides and pools before they were even open.
I guess sunshine, fresh air and the ocean truly do have a healing effect because no less than 24 hours before we were to head to Bahamas for our trip, Kate was at CHEO on IV trying to get her through an episode of inflammatory cascade resulting from her mitochondrial disease. The day before our flight was to leave, I was on the phone with Make A Wish, crying – worried that we wouldn’t be able to make this trip and that Kate would be feeling too unwell to enjoy it. But working with her medical team at CHEO we were able to get Kate feeling well enough and I made a judgement call late in the afternoon, the day before we were to leave, that we would go.
Travelling with a child like Kate is not easy. Her illness can strike unpredictably with acute symptoms that require treatment and management in hospital. Make A Wish and CHEO had worked together to set up an advance team that had been briefed on Kate’s medical situation at a hospital in the Bahamas – the nurse in charge of Kate’s care, should it be required, was from Montreal Children’s Hospital. We knew we would be in good hands if we did need help, and Make A Wish ensured that travelling with our bag of medications would not cause any issues either.
So we went. And it was wonderful. And I felt joy and relief in watching my kids relax and play together. We really took advantage of every moment.
Kate learned new signs for ’turtle’ and ‘dolphin’. And it was really wonderful to see her enjoy those experiences. We truly were living a wish because it was not something we could have done on our own.
It is for you too.
If you are thinking it’s not. It is.
You have been through a lot. Your child has shown more strength, stoicism, and courage than anyone else you know and they deserve to have this special moment and to be celebrated like only Make A Wish can. There are people out there who want to help, and you can say ‘yes’ and ‘thank you’, and believe me, everytime you do it gets a little bit easier.