Contemplating After life…

The conversation about end of life preparation is huge and a lot of tears were shed this week. In our Rare Family Dynamics group we explored what it means to honor the journey with your rare child. What kind of preparation do you need to do? What will help to make this journey as graceful as possible? 

Contemplating what comes after

Let’s face it, contemplating life after your child is brutal. You may experience a lot of feelings or a pit of sorrow may well up in your stomach when you even get close to this thought. However, there is value in contemplating their death. Regardless, the weight of the grief will be significant–likely more than anything you can fathom.

Burn, a poem by Laura Will

This poem by Laura Will, an amazing raregiver captures these sentiments beautifully. Here is a link to: Burn. Or paste this link into your browser: https://www.adragonmomswords.com/post/_burn

Please take the time to read it. It’s profound.

Unconditional love

There is a way that loving your Rare child is the purest form of love. It is a love without expectations of receiving any return on the time and energy you invest in them. When you look ahead to high school graduation or a cousin’s wedding, you may experience a painful inner knowing that your child won’t be attending these future events. When you have these thoughts, breathe deeply and let yourself feel. The only way out is through.

The more you invest in your Rare child the more neurochemically bonded you are to them. And the more bonded you are, the harder the thought of letting them go will be. We are here to sit in this with you.

Roots and wings

Being a raregiver insists that you expand your capacity to show up as courageous human being. It invites you to rest deeply into spirit, into the source of life. You are on a steep growth path and in order to stabilize as you grow, you must deepen your roots.

Deepening your roots means you recognize you are growing and commit to taking care of yourself. You show up in the weekly support groups as much as possible, take time to meditate, pray, journal and tend to your physical body. We are here to support you.

Coming up this week: Bereavement and 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. There will be opportunities to redefine your identity and find a new sense of purpose. This will all take time. Go gently and trust the process. 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 Rare caregivers who get you. Come be seen, heard and deeply understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session. 

Come as you are.

Your presence is a contribution.

Zoom Link:Click Here

We look forward to being with you soon.

Warmly,

Padma