The Impact Is Real

This past week in our Rare Family Dynamics workshop we explored the impact having a child with a Rare disease has on the members of your family. We looked at how having a Rare child invites emotional and spiritual growth.

Surrender

One theme that came up was the idea of surrendering your idea of what your family might have been. You may realize that the choice to have another child means there is a 50-50 chance they will also have a genetic disorder. The choice not to have more children means you surrender your idea of having a house full of children playing in your home. This is a lot to accept.

In some cases your child is born healthy and their Rare disease manifests later on. Your Rare child will have a lot of needs. The impact of being the primary caregiver is huge. You may need to do everything for them including bathing, feeding and running to get things like their phone charger. This takes a lot of energy.

You must find a way to let go of the idea that your child will be independent. In some cases, you will be your Rare child’s hands and feet.

Younger siblings

One Rare mother spoke about how her younger child, her daughter, had not noticed that anything was “wrong” with her brother. Being a four year-old, she innocently said things like, “I can run. I can walk.“ Younger siblings may not understand what is happening and you will need to have important conversations with them. You'll need to translate the magnitude of their Rare sibling’s new reality.

Little Helpers

Younger siblings will learn to be helpful and in many cases, they’ll enjoy fetching things for their Rare sibling. They learn to be caregivers at an early age. It is important to make sure they know that they are more than just a helper for their Rare sibling. It’s useful to spend one on one time with your neurotypical child or children. Cultivate special relationships with them because they need you too –  just in different ways.

Anger

Anger may arise for you as a sibling (or any member of your Rare family). One sibling who is much older than her Rare brother helped raise him. She described having feelings of anger at the lack of understanding neurotypical people showed and how they really had no clue about what Rare families go through. Rare parents have to fight to get the basic necessities for their Rare child. Services are not readily accessible and there are many bureaucratic hoops to jump through. The challenges of caring for a Rare child are many.

Feel Your Feelings: A Practice for You

When feelings of anger, sadness or anything else arise, it is essential to feel. You might even say to yourself, “ My feelings make sense.“ When you say this to yourself, you give yourself space to feel. You validate your own feelings. You breathe and allow the feelings to move through in their own time. Being able to feel fully takes practice. Please be patient with yourself as you grow your capacity.

Offering yourself the space to feels opens the door to giving others space to feel as well. You may even find yourself saying, “Your feelings make sense.“ Validation is a gift coming and going.

Feeling Unseen

Many of our Rare caregivers talk about feeling unseen by their own mother or mother-in-law. Neurotypical people like your mother may say insensitive things to you when you are grieving a miscarriage or in the process of making the difficult choice not to have another child. Rather than meeting you where you are, they may say, “Be happy with what you have. Be happy that you have one child.“ This can be quite painful.

Include It All

Naturally, gratitude is important and it’s essential to include your feelings of wanting a second child. The possibility is to hold gratitude in one hand and your challenges in the other. They exist simultaneously so do your best to include everything. By doing so, you expand your capacity to live fully.

Coming Up This Week: Losing Yourself as a Rare Mother: Keys to Self-care

As a parent of a Rare child, it can be easy to lose yourself in caregiving. You may experience a radical shift in your perspective on life and your identity as other than the mother of a child with a Rare disease may disappear. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list. 

Priorities shift and you dive headlong into learning everything you can about your child’s Rare disease as you manage their daily care. Join us for a conversation with other Rare caregivers who are discovering ways to care for themselves and their Rare family. Bring an open heart and trust that you have wisdom to share.

You Belong Here

This group is open to all Rare caregivers regardless of gender or relationship status. Join our amazing community of Rare caregivers who know what it’s like to walk in your shoes. Come be seen, heard and deeply understood. Let the community hold you. If you have been waiting to participate in this group and have felt it was not for you, it is now. We look forward to meeting you. The group meets Tuesday mornings at 10am PT. Come for all or a portion of the session. Drop-ins welcome.

Come as you are. Your presence is a contribution.

Zoom Link: https://us02web.zoom.us/j/82070611374

We look forward to being with you soon.

Warmly,

Padma