Harvesting Wisdom
This week I had the honor of facilitating the Rare Mother‘s Round Table. The group had just completed a six-week meditation journey. We reflected on which elements of the meditation were most supportive and which pieces were challenging.
Here is some of the wisdom we harvested:
Your future self
When you visualize yourself in the future, it might bring up a future without your rare child. Maybe you visualize this like a movie playing on a screen or perhaps you can’t see it at all because it’s just too depressing to think about. And yet, it is useful to think about the future.
Practicalities
There are also many practical things to consider like, what if you were to die before your rare child? It is important to make a will and set up a special needs trust. Your child will be cared for if you invest your time and handle the practical details.
As you engage in this process, you take tiny sips of the future. Please move gently and offer lots of self-compassion.
The hard things
It can be really challenging to say the hard things out loud. Things like, “what will I do if they die?“ Or if you hear a medical professional say, “we expect that this will be fatal.“ Saying and hearing these impossibly hard things asks you to find a source of solace. You may find this in church, temple or in your daily meditations. Lean into the discomfort as you contemplate the future.
Big decisions
In your role as a raregiver, you will need to make a lot of huge decisions along the way. There are decisions about adding medications, transplants or whether to put your child into a clinical trial. You are doing your best to evaluate what is best and taking calculated risks. As you navigate these complex medical needs, it can be tricky to think about family planning and whether or not to have another child.
As you walk on the path of the raregiver, it is helpful to live in the present moment. Take things one day at a time and perhaps connect with your older, wiser self who can let you know that you will be OK.
Future tripping is perilous
Please restrict any future tripping or projecting the worst. It is not helpful. You are learning to live with what is in this moment which invites you to manage your inner voice.
Perhaps you say to yourself, “I’m here for myself through all of life‘s circumstances.”
And remember, “your worth is not measured by how well your child is doing.”
Join Us
You are invited to join us every week for our support groups on Tuesdays for Rare Family Dynamics and Thursdays for the Rare Mother's Roundtable at 10 AM Pacific time. You belong here. We look forward to being with you soon.
