Navigating Without a Map
Our Women's Empowerment Circle continues to be deep and meaningful for those who are able to show up. It would be wonderful to have you there! This week we talked about managing symptoms being one of the primary tasks that falls upon you as a Raregiver. The truth is you are doing so much in your life, including researching your child's Rare disease, tending to your home, your family, and of course, giving special care and attention to your Rare child as you learn how to manage their symptoms. One of the most challenging things is that their symptoms are continuously changing. You owe it to yourself to put self-care on your list. One part of that self-care might mean putting these weekly support groups on your calendar because if they are on your calendar, they are more likely to become a regular part of your self-care routine.
Hard Conversations
As a Raregiver, you are juggling many things while trying to be present as a mom. One of the things that you may be juggling is the plan for school next year. You may discover that you enter into a conversation with school representatives with openness and excitement and then you discover that somehow you experience them as not being totally upfront with you. You might ask them questions and discover that you don't receive clear or direct answers. Some raregivers have said that it seems like they often receive pat answers and it's hard to trust.
A Broken System
You may wonder if the structures that are in place are actually designed to support your Rare child. This can be extremely challenging and these kinds of interactions can leave you feeling sad, angry, disappointed, and anxious. You feel like you should be doing something to get the support services that your Rare child needs and yet you don't know exactly what you are supposed to be doing. It is as if you are navigating a labyrinth of forms, rules, and regulations instead of talking about a rare child who is simply needing special services. Be that in the educational realm or in the health realm. You may feel like you are navigating the open seas without a map or a compass.
Remembering You Matter
In the midst of managing symptoms and navigating scads of bureaucracy, it is important to remember that you matter. Your self-care matters. If you are going to continue to manage your household, family, while tending to your Rare child and all of their changing symptoms, you need to put yourself on your calendar.
Micro Moments
It can be difficult to find extended stretches of time for yourself, and you can find micro moments. Things you can do in a micro moment include:
Taking three breaks of one minute each where you close your eyes and breathe
Going outside and putting your face in the sun for two minutes
Take a two minute stretch break
Put on a three minute song and let your body move
Close your eyes as you sip your morning, coffee or tea and savor the warm liquid going down your throat
Spend five minutes journaling
See if you can integrate these micro moments into your daily life. You will be glad you did because you will be more present with yourself, your family and especially your Rare child.
