In this holiday season, I hope we do not forget the families that are facing bittersweet moments…you all are in my heart and on my mind. This is an article by a friend a pray for daily, and I hope it will help anyone wishing to help families who are facing childhood cancer or other chronic diseases.
My friend writes:
I am the mother of a child with cancer. Long ago, my walk to work would take me past our local child cancer support ofﬁce and I would think of the parents who made use of the service, wondering how those poor families managed in such terrible circumstances. Then we became one of those ‘poor families’. Our lovely and lively young daughter, Hope, was diagnosed with a rare and difﬁcult-to-cure cancer just after her second birthday. Our family life changed in a ﬂash and we were thrown into a new world that we did not ask to be part of, that no parent should ever know of.
Time passed and we eventually found our feet amongst the confusion of worries, intense treatment and new faces. We coped. And then, two years later and just a few short months after ﬁnishing treatment, Hope’s cancer relapsed and we were once again thrown into that murky place of despair. For our daughter, a relapse means her cancer cannot be cured and she is now in palliative treatment, treading a careful balance between length and quality of life.
I am the mother of a child with terminal cancer. People sometimes tell us they don’t know how we manage, and I have nothing to respond with except to say that when things are going well, we just live. We try not to think too far into the future and we spend time enjoying our children. But there are other times when all we can do is simply get through the next few minutes, the next hour, the next day. We don’t ‘manage’ at all.
It is in these times that we feel most blessed to have the love and support of a great group of family and friends. In our most intense moments, their help has meant we have been able to step away from most of the detail of day-to-day life and focus on and simply be with our children and each other. We are so grateful for their care.
While every family’s journey with childhood cancer is different, I can say that for us the most helpful support has been where the pressures of daily life have been taken away. We have friends who coordinated a meal roster, and dinners (often complete with salads or veggies on the side and dessert!) just turned up where ever we needed it. For a while it was seven days a week, and as we started being able to manage it dropped off at our request.
Another lifesaver was when trusted friends offered to spend time with Hope and her brother, giving us a few precious hours to run errands, clean the house or just rest. Gifts of money have also been incredibly useful as our income has been compromised over a long period of time. We have used this money not only for everyday expenses but also for special memory-making activities.
We have been blessed with so many other gifts: a loan of a car, accommodation for us and visitors, holidays and other fun activities, vouchers for groceries and petrol, gifts for our children at hospital and home, gifts for us to help relieve our own boredom at hospital. Siblings often get overlooked in our situation and gifts feel extra special when Hope’s younger brother is included.
If you are looking for ways to support a family in difﬁcult circumstances, know that gifts are usually received in the spirit that they are given. Sometimes we are too overwhelmed with life to respond straight away, sometimes we never get to say thank you to people personally, but we are always grateful for even the most simple gesture. Messages of support, emails and cards, prayers and thoughts recorded on a Facebook page, simply making space in your life to provide a listening ear … The list is as endless as your imagination!
Finally, please don’t be offended if an offer isn’t taken up. It can be scary to leave your ill child in the hands of someone else, even for half an hour; it can be hard to let go of the illusion that we are ‘managing’ and let a friend clean our house or do our washing; we may not always want to ‘open up’ and talk about how we feel. Please be gentle with us and keep your offers open. We are grateful.
Carrie here: And thank you, dear friend. I am grateful you shared your wisdom here with my readers; a kind of wisdom no parent should have but that should be talked about.