Let Yourself Be Held

The topic for discussion this week in our Tuesday morning Rare Family Dynamics workshop was "adjusting to the diagnosis.” There is an initial period of adjusting to your rare child's diagnosis, and then later on you may have another round of adjusting to their diagnosis. As a Raregiver™, you are being asked to adapt and grow continuously.

Being held

It can be extremely helpful to feel how you are held. You do a lot of holding as a Raregiver™, and as the lodgepole of your family, and you need to be held as well. 

When you feel held, your nervous system can relax. This can ameliorate some of the stress that you experience dealing with a chronic illness.

Rest, meditate, and pray

Every time you take a rest, and drop into that silent sanctuary within, you are opening a new neural pathway. You are finding deeper access to a place of peace amidst the storm. Lean into your faith to hold you as well as your family and community members.

Communication

Something that came up today is the notion of how geneticists communicate. Almost every member of our group today has had a jarring communication from somebody involved in the field of genetics.

Communication is more than transactional. When you receive information about your rare child, you deserve to be held as a human being.

For many Raregivers™, that first genetic experience can be very traumatic. One person shared that prior to that initial appointment, she appreciated her son's unusual features, and found them to be cute. After the genetic appointment, she could only see the disease and was unable to see him as her son without the projection of the disease for almost a year.

Educate

The bottom line is, doctors and practitioners will not know unless you tell them. If they pass on information to you in a very sterile or abrupt manner, it can take months or longer to recover from it.

You need to be prepared for these kinds of appointments. Ask questions, and if a doctor says, "Isn't it funny that they all look like this?" You can let them know that it’s not. It's a good idea to tell them that it's not funny because once you see the diagnosis you can't unsee it.

If you are told your child won't walk,  talk, or live past a year, it's very hard to let go of that, and it can cause extreme stress and fear in your system.

Facing survivorship

We also talked about the reality of when a child, who has the same rare disease as yours dies, and how scary it can be. It's like if you're in a Facebook group and you see posts about other people's children dying, it insists you look at the road ahead.

It's important to share more about how you’re feeling and understand grief. We are doing this in our amazing community. You are not alone.

Coming Up This Week: Acceptance of What Is -- Communicating the hard things

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. 

Join Us

You may not realize how much you need the ANGEL AID community until you find it.

Zoom Link: Click Here

We look forward to being with you soon.