A letter to myself
We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.
Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work.
The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.
Below is a parent's response to this writing prompt:
Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.
A letter to myself
Don't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.
Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.
Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.
Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.
Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it.
Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.
When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.
If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.
And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.
Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone.
