Adjusting to the New Normal

By Padma Gordon

In our Empowering Raregivers weekly support group, we focused on adjusting to changes (Stage 2 on the Raregivers Emotional Journey) as your Rare child’s disease progresses and how vital it is to acknowledge yourself for navigating a highly medicalized life. You are parenting and you are navigating a complex healthcare system with both its gifts and its limitations, often while hitting dead ends with insurance and care structures that simply do not address your child’s needs. Along the way, you become the resident expert on your child’s rare disease because information, treatments, and cures are mostly non-existent.

One participant shared how exhausting and retraumatizing it is to repeat her child’s story over and over to medical professionals, community members, and others since it means having to absorb their reactions while managing her own emotions. This constant explaining creates real fatigue. She now asks providers to read the chart before appointments…this is a boundary. In reality, many providers are looking to you to illuminate your child’s situation. Sending research, summaries, or chart highlights in advance can be a form of self-care. You often know more than anyone else in the room about your child’s condition.

Another participant spoke about how she is still adjusting, although her Rare child is now 21. When she says she has two children, people immediately ask where her son went to college which he did not. This hurts. He wasn’t diagnosed until 19, after years of fragmented diagnoses, so she was constantly adjusting to a new normal. As Raregivers, we eventually realize our lives will not look like other people’s lives, period. This makes consistent self-care essential. You might ask yourself: What can I let go of or delegate? Where do I want to place my attention? We can become so focused on our Rare child that we forget ourselves—and sometimes the relationships with other members suffer too.

Raregivers live a life of service. As one person said, “You want to do it, you’re glad you can do it, and… it’s a burden as well.” It’s a burden because it’s hard to relax, even when your child is stable. Your nervous system may still be sounding the alarm when there is no immediate crisis. This is why it’s so important to slow down and receive, to get current with your situation as it is right now. Be kind to yourself. Practice self-compassion, feed yourself, set limits, and please don’t beat yourself up if you let things slide. Life is asking a lot of you.

Reflection question: What is one small boundary or act of self-care you could offer yourself this week to support your nervous system and your heart?

Coming Up Next Week: What is a True Friend?: Communicating Through Awkwardness and Letting Go (This can happen in Stage 1 or really anytime along the journey)

Having a Rare child changes everything including friendships, how it feels to move in your community, and the world. You will experience awkward moments as you relate to others and many neurotypical people do not know how to act around a child with special needs which is often uncomfortable because you are now engaging with their discomfort and your own. 

How do you communicate with friends about what you need? Some friends pull away while others embrace the changes and are able to support you. You may need to let go of certain relationships while opening to others with people whose capacity allows them to meet you and your Rare family where you are. Learn to trust your intuition more deeply as you share your experiences and learn from others.

Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.

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

Zoom Link: https://us02web.zoom.us/j/84782918881

We look forward to being with you soon.

𓆩♡𓆪 𓆩♡𓆪 𓆩♡𓆪