I am a mom who has experienced times of both hope and low hope, throughout my journey caring for my son who had severe brain damage and physical disabilities. I say had, as he passed away a few years ago, at the age of 12. His 18th birthday would have been this weekend. We will still have a party……I don’t know if I would be planning this party if I was without hope.
I never really thought about hope during my caregiving years, but in hindsight, I see that I allowed my hope to gradually ebb away. Each ‘crisis’ seemed to drain me a little more. It was not until after my son died that I found the time to see a counsellor who recognized my hope was at a very low level. The first thing she helped me with was bringing about an awareness of hope and its importance.
I went home from the counsellor thinking “What do I hope for? Can’t she see that’s the reason I am there – I don’t really hope for anything”. Well I made a list, actually a collage depicting it. I really didn’t feel hope for any of my choices, but cognitively, I knew that they were things important to me. My counsellor spoke with me about my choices. She was keeping “my hopes” in sight, so I didn’t just let them go. Gradually over the next months, I realized that I was taking small steps towards some of the hopes for which I had some control. She didn’t ask me to do anything; I just made my list and we talked about its items. I believe this started a domino effect in a positive direction, exactly the opposite of that which had claimed my hope. Hope led to more hope!
Another activity I found beneficial was discovering my “signs of hope” – sights, smells, sounds – that bring a sense of hope. Whenever I experience these signs, I remember to actively hope. Sparrows give me hope that I will be with my son again one day.
It was only a few days after he passed away, when a sparrow flew into the house. A bird had never flown into our home before or since.
Unsure of what to do, I grabbed a large empty juice jug and put it on its side on the floor next to him. I thought I would have to “capture” him, but he just hopped right in. He did not flutter as I walked him to the backyard. In fact, the jug had no lid and I was able to look in on a very calm little bird. When we got to the deck, I put the jug onto its side again and the sparrow hopped back out and stood on the deck’s railing. I am sure it was at least 5 seconds in which he stood inches from my face looking at me, before he flew away.
Noel’s Suggestions for Hope
1) Make a list of hopes, even if you don’t feel them, and remind yourself of them regularly. Encourage fellow caregivers to discover those buried hopes, even when you don’t feel like it.
2) Find your own “signs of hope” that will remind you that there is hope every time you witness it.