Accepting What is

Accepting what is can be very challenging. We talked about this in our Rare Family Dynamics support group this week. We have to accept that our Rare child is having more and more symptoms as time goes by. There are more challenges to deal with which impacts you as the primary caregiver and the rest of your family including any siblings.

Phases of acceptance

Along the way there are different phases of acceptance and sometimes you will be at peace with what is, while at other times you will fight with yourself and fight with the situation. The more you can open, widen and soften through your heart, the easier it will be.

Siblings

Very often your  neurotypical child will be left to fend for themselves. For example, if their sisters are having brain surgery, they are the priority. You may feel like your non-rare child is getting the short end of the stick. You may ask yourself how can I mother my son while my daughters are needing so much care? You have to trust that the love you are giving to each of your children is enough.

You are doing your best

It can be easy to see all that you are not doing. If this negative thinking pattern arises, take the time to notice what you are doing well. You are giving everything you have to your Rare child and your other children. The reality is children adapt to situations. Know that you are doing your best and accept that what you are able to give is enough. 

Accepting what is

The practice of acceptance includes accepting who your child is and knowing that your feelings make sense. Trust what is unfolding and offer yourself compassion. The truth is that everyone in your family is having a different human experience. This is what they signed up for. Love as large as you can and trust that each member of your family can handle what is on their plate. You can’t change their reality. You can simply show up in your heart and do what you can.

Coming up this week: Extended Family Dynamics -- Misunderstanding, Denial and Comparison

Parenting your Rare child means navigating a host of dynamics with your extended family. Oftentimes, your mother or sister won’t understand the nature of your child’s disease or what it’s like for you to live as a raregiver. Misunderstandings may run rampant along with the denial that there even is a medical issue with your child. You may also discover that you compare your Rare child to your neurotypical nieces and nephews when you see photos of them hitting milestones that your Rare child may not ever hit. Come and share your experience with other Rare caregivers who know what it’s like to walk in your shoes. 

You Belong Here

This group is open to all raregivers regardless of gender or relationship status. Join our amazing community of raregivers who get you. Come be seen, heard and deeply understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session. Your presence is a contribution.

Zoom Link: Click Here

We look forward to being with you soon.

Warmly,

Padma