Adjusting to a Diagnosis
Rare family dynamics are complex. In our Rare Family Dynamics Workshop we explored adjusting to the diagnosis this past week. If you look back at when you first received your child’s diagnosis, what was your experience?
Before you read this, please take a few deep breaths, close your eyes and find your center. Remembering or hearing about someone else receiving a diagnosis for a Rare disease can be triggering.
Receiving a diagnosis
Receiving a diagnosis can be a highly traumatic time especially if you are in the midst of postpartum depression, Covid is raging and your partner is not allowed in the hospital to visit you.
You may discover that once you hear that your child has a Rare disease you become a different version of yourself. You are catapulted into a new reality.
You may even feel as if the person you were before has passed away.
Laura Will, an accomplished poet and regular of our group expressed her experience beautifully in this poem which she wrote during the journaling portion of our meeting.
An unbecoming
… and then came the diagnosis:
a page marker in time, from which there is no return
as certainty and sense crumble
leaving just love and a decomposing former self
… and came the mourning the morning after, and the morning after that
as the mind screams and scatters
as the heart squeezes and expands
and the pit in my stomach confirms that my body
is still mine.
Unprotected, a soul shines forth.
To read more of Laura‘s poetry, please visit www.adragonmomswords.com
Receiving a diagnosis is BIG. One of our Rare mothers said, “my soul gained 100 pounds in that moment.“ You will experience a whole host of feelings and ultimately you will find a way to move from grief to hope and peace.
Staying Connected
During this process it is important to stay connected to yourself through movement, exercise, journaling, meditation and prayer. You will also want to receive support from your community. This is essential. We are here.
Coming Up This Week: Acceptance of What Is & The Impact on Adults and Siblings
We will discuss the different stages of acceptance you go through in a Rare family. A diagnosis impacts the adults in the family as well as older and younger siblings. The entire structure of your family changes in an instant and there is much to accept and integrate. Join us for a powerful conversation with other Rare family members. All siblings age 16 and older are welcome to join this group along with extended family.
You Are Welcome Here
This group is open to all Rare caregivers regardless of gender or relationship status. Join our amazing community of Rare caregivers who know what it’s like to walk in your shoes. Come be seen, heard and deeply understood. Let the community hold you. If you have been waiting to participate in this group and have felt it was not for you, it is now. We look forward to meeting you. The group meets on Tuesday mornings at 10am PT. Come for all or a portion of the session.
Come as you are. Your presence is a contribution.
Zoom Link:
We look forward to being with you soon.
Warmly,
Padma
