Embrace The Unknown
Our conversations in the Rare Family Dynamics sessions seem to deepen each week. This week we peered over the edge into the unknown, and acknowledged how many things are in the Mystery.
Having a second child
As a raregiver, you may choose to take an IVF journey where you can potentially receive genetic testing. As you go on this journey, it is important to refrain from comparing your experience to anyone else’s.
Remember, so many things have to go right to have a healthy baby and ultimately, we are at the mercy of what wants to be. We are invited to lean in and trust the unknown.
Even when we have information, it is imperfect and uncertainty is the reality. Perhaps your baby has a heartbeat right now, and we know that this can change. You move from one data point to the next.
Attempting to control the unknown
You may wonder if you should get a heartbeat monitor or whether it’s true to learn how to live with continued uncertainty. These decisions must be made with a quiet mind and an open heart.
An inquiry
We looked into the future and contemplated the possibility that your Rare child will die before you do. What are the feelings that arise and what gives you strength and courage to continue?
Staying in the present
It can be challenging to stay in the present as you watch your child’s Rare disease progress. You may find yourself thinking about when the next thing will happen that will change your life permanently.
It is wise to restrict yourself from living in the future.
Loving what is
The opportunity is to notice and embrace things as they arise. For example, it might be snowing right now and yes, it’s inconvenient, and it is also beautiful. Both are true.
Loving what is is key to loving our Rare kiddos and it’s also important to love what isn’t.
Perhaps you’re living with the knowledge that your child could aspirate in his sleep or he could potentially live until the age of 30. You are living in the unknown.
A year to live
There is an incredible book I would recommend called “A Year to Live” by Stephen Levine. It invites us to ask the question, what if you only had a year to live? What if it were your Rare child’s last year? Would you still get them intensive therapies or would you want them to live simply and maintain the highest quality of life possible?
Every moment is precious
Perhaps you would choose to spend every moment loving your Rare child and understanding their essential Beingness. This is what lives on.
Meet your fears
Meeting your fears creates space to be fully alive. Allow yourself to have all your feelings and to grieve. Lean into the sacred nature of the moment.
Coming Up This Week: Bereavement & Survivorship
When caregiving has been at the center of your life and identity, the end of caregiving can trigger loss, grief and guilt and unanticipated feelings of relief. The feelings of grief can last years when your Rare child dies and you may experience new waves of feelings when milestones arrive that your Rare child would have hit. You might feel depressed or unmotivated which is natural. Please join us for a deep conversation regardless of where you are on the raregiver’s journey.
You Belong Here
This group is open to all raregivers regardless of gender or relationship status. Join our amazing community of raregivers who understand you. Come and be seen, heard and truly understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session.
Your presence is a contribution.
Zoom Link: Click Here
Sending Solstice Blessings and Happy Holy-days to you all,
Padma
