Looking Down The Road

Our Rare Family Dynamics sessions continue to be profoundly deep and rich. The quality of loving support we offer to each other is magnificent. 

This week we touched upon a very tender topic, looking ahead at the possibility, or the eventuality, that your Rare child will depart this world before you do. This is an incredibly hard thing to contemplate.  What comes up for you even hearing this? How do you stay steady in the face of this?

Here are some gems from the session:

Savor the good

One participant spoke about her adult child and how over time he's become frustrated with  himself and sometimes exhibits aggressive behaviors. This was upsetting for her.

She said she had some big feelings arise in response to being with things she cannot control. One thing she can control is focusing on goodness. She visited him and they spent the afternoon laughing together and doing a road trip around her old stomping grounds. It was a blessing for them both.

Alchemy

She experienced an alchemical change when she was willing to lean in and feel her feelings. They  were transformed into an experience of resilience and internal stability.

Bothness

When turning toward the difficult things, it is useful to look at the "bothness” which may mean that some things are going great while other things feel out of control. It's all happening at the same time.

For instance, perhaps your child is having repeated seizures and needs to be given his rescue medication almost on a daily basis. At the same time, maybe you are pregnant and looking forward to having another child, one who as far as you know, does not have a Rare disease.

What If you were to allow your Rare child to have a hard day and not let it color your entire experience?

It can be useful to create some distance from your Rare child, so that you can offer them physical and emotional support, along with love and compassion rather than being enmeshed with them.

Being resilient

Showing up for yourself and your Rare family even when you don't feel like it means you are resilient. Resilience can be especially challenging when you don't have a diagnosis and your Rare child is not doing well.

As the primary caregiver you hold a lot. Maybe you have a supportive partner and maybe you don't. It can be easy to get very stressed out especially if you are keeping everything inside. You have to let it out otherwise, your body will take the hit.

Catastrophic thinking

There are so many unknowns when you have a Rare child, and it's useful to restrict thoughts like, "what if we can't do…" This is called going into a future trance or catastrophic thinking. Do your best not to fall into this because it will take you down and drain your energy.

Recognize what you ARE doing

What if you understand that you can do what you can do and you trust that? Do one thing at a time. Simply take your next step. For example, maybe you do a genome sequence, and even if it doesn't tell you exactly what's happening at the moment, it can have a fruitful outcome regardless of the timeframe. Doing the testing is useful and it will ultimately help others.

Coming up on April 4th: We begin a new session this week! Please join us.

The theme is: The Power of Gratitude 

As a Raregiver, you experience many trials and also moments of profound gratitude. When you focus on being grateful and expressing your appreciation, your relationships will thrive. Taking the time to show gratitude to those around you who offer assistance helps them feel appreciated. Appreciation is one of the important ways we take care of each other. Come and join us to learn some simple appreciation practices and to receive appreciation for who you are from other Raregivers.

You belong 

As a Raregiver, you belong here. We gather from across the world to support each other. Your presence is a contribution.

Zoom Link: Click Here

I look forward to being with you,

Padma