WHEN YOU FIRST REALIZE…
The topic of our conversation this week in our Tuesday Self-Care group was "adjusting to the diagnosis." This stage of the emotional journey in the life of a Raregiver is challenging and may be shocking. Perhaps you slow down and take a look at what it was like for you when you first heard or realized that there was something different about your child.
Self-compassion
We took some time to send love and compassion to the younger version of ourselves who upon hearing the diagnosis felt like their life had just been turned inside out and upside down. When you get pregnant, you have a vision of what you think it will be like to be a mother and raise a family, and then you receive the news. In that moment you realize that everything is going to be different than you thought it was.
Both
Many Raregivers also have a Neurotypical child which can be both very healing and wound opening. One of our participants shared that once she had her girls she realized how she’d missed out on her Rare son saying, “Mama.” All the milestones that your Rare child won’t hit and at the same time noticing all the ways that your Rare child did hit certain little milestones like being able to follow your finger as you moved it around. The little things count as big things.
Acceptance of what is
Acceptance leads to freedom. Perhaps once you discover your child has a Rare disease, you adjust the map and loosen your hold on the expectations you had and the ideas of how your life would be. You might also release any self-blame and the notion that something you did or didn’t do created your child’s Rare condition. You did not and you actually gave everything you could. Motherhood is a devotional practice.
Here is a quote that speaks to the idea of acceptance being the road to freedom and how imagining things were different may lead to suffering, "But imagining what might happen if one's circumstances were different is the only sure route to madness."
- A gentleman in Moscow
Grief
It’s also important to let yourself grieve all the lives you did not get to live as you embrace the reality of being in the unknown in a way you previously have not known. It’s an invitation to surrender to the vastness of the unknown especially when you discover that the medical experts do not even know how to support your Rare child and they may not even be able to offer a clear diagnosis or a pathway forward.
Coming Up Next Week: Shifting Responsibilities: Role strain and identity change (Stage 3 Emotional Journey Map)
In the third stage of the “Emotional Journey map” we see how roles become strained and identities change. During this session we will talk about how family life changes as the need for caregiving increases, especially for women (as mothers, relatives, and partners), who are the dominant caregivers for people with rare diseases. Caregiving is time-intensive and involves adopting multiple roles such as care coordinator, researcher, decision-maker, and advocate. Becoming the main caregiver can place strain on those giving care as they try to balance employment, family life, and caregiving. Becoming a caregiver can also mean losing other meaningful sources of identity and lead to feelings of loneliness and abandonment.
Please Join Us
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/88974713173
We look forward to being with you soon.
