Padma Gordon

Spiritual self-care begins with tending to your heart. And, tending to your heart starts with listening. As a Rare mother have a very full life of tending to your child and your family. The reality is that you are the heart of your family and by listening to your own heart, you are tending to your family on a very deep level.

Paige Rogers

For a few days this past week in Chicago we experienced the first warm and sunny days in quite some time. I spent my entire day outside— this is one of the few benefits of a virtual world, the ability to bring my work outside. It was great.

And then the next day I woke up and the sky was completely grey and raining. It was a bitter disappointment.

To see thunderstorms on the weather forecast right after the beautiful weather was not a juxtaposition I was fond of. I felt discouraged and disappointed. I am ready for a season of warmth and sunshine. It felt like something I deserved had been ripped from me...

Padma Gordon

This past week in our Spiritual Self-Care Workshop we reflected on the tidal movement in our lives. We meditated and then journaled using the following question as a prompt:

Kate Milliken

We also spoke about time, clearly a valuable asset in the rare illness experience.  Do you find ways to make time outside the day to day routines?  With the time you have for yourself, do you use it in a way that feels good?  A great suggestion was to physically block time on a calendar where the only agenda is you. This team from ANGEL AID is within grasp, ready to celebrate your time and to remind you how beautiful it can be, if taking a long bath, or a jog or just laying on some grass and staring up at the sky isn't enough.

Kate Milliken

I started this season's journaling workshop asking participants about the loneliness experienced with a diagnosis, something I understood on some level as a result of living with MS. The range of ways people responded were varied, but all recognized that reality and that recognition introduced ways to release one thought to accept the next. Today I heard "It hurts to let go, but it heals to be free." and I think theres huge truth in that process.

Padma Gordon

Tending to yourself each day is the most important thing that you can do. As a Rare mother, you expend most of your energy tending to someone else. Perhaps you’ve been doing it for many years or perhaps you are at the beginning of your Rare mother’s journey? Regardless, your own spiritual self-care plays an important part in how you take care of your child and family.

Padma Gordon

"May your prayer of listening deepen enough to hear in the depths the laughter of God." - John O'Donohue, To Bless the Space Between Us

Spiritual self-care begins with listening. In the sacred space when we experience the Love in our own hearts that we may feel something similar to the reverence we feel in an enchanted forest that stands mystically shining in the sun. We are much more likely to discover love when we intentionally choose to walk down the enchanted path and listen. 

Padma Gordon

Our Spiritual Self-Care weekly workshop continues to grow and deepen with new Rare mothers joining each week. It's rich and diverse with some Rare mothers with children ranging from very young to early twenties and others whose children have passed away; the support available in our community is incredible.