Navigating Change
We had the second meeting of our Rare Family Dynamics Support Group and looked at what it’s like to go from being a full-time professional to being a full-time caregiver for your Rare child.
We discovered that this change may include a struggle to accept your new role. Do you find yourself wrestling with what it is? If so, this is very common. In most cases, Rare caregivers make the choiceless choice to take care of their Rare child. Who can do it better than you?
A Lack of Appreciation
At times, you may make this choice and your Rare child gets angry at you. One of our participants spoke about how her daughter was upset at her for leaving her full-time job to take care of her. In her upset she asked, “Why did you put us into poverty?“ The choice to become a full-time caregiver may include a lack of appreciation and an income loss which adds another stress to your Rare family.
New Opportunities
Several of our Rare mothers who are further along on the journey talked about the opportunities that appeared because of their Rare child’s diagnosis. If you open and surrender to what is, you may find new opportunities present themselves that you never would have dreamt of.
Letting Go
Receiving a diagnosis often means letting go of what you thought your life would look like. You may feel like you can’t get your head above water because you’re juggling work, your children and multiple doctors appointments. Even if you can work remotely, you may go through stages of letting go of your work or what you thought your work would be. Many of our participants shared stories of how their new career includes raising awareness of their child’s Rare disease,
Be Kind
It’s important to be kind to yourself and not beat yourself up because you're unable to do everything for everyone in your family. This is an unrealistic expectation and puts undue stress on you. Are you up in the middle of the night googling and searching for answers?
You are doing so many things. Your life may include visits to the emergency room, lots of medication changes, endless scans and diagnostic tests. And ultimately you may discover that living with your Rare child’s diagnosis changes every aspect of your life.
Capacity
It's important to recognize that your capacity changes. It goes up and down depending upon what is happening. What if you can love yourself as you are? When you can be flexible with your own capacity and let go of the expectation that you will be able to maintain your full-time job and be the primary caregiver, you are coming to terms with what is. Take the pressure off and show up in integrity with what you can do while maintaining the balance of your life.
A Practice for You: Explore Your Capacity
Pause and notice what your capacity is at any point throughout your day. Check in with your body. Are you tired, hungry or just at your limit? Embrace your capacity and show up for yourself.
Take time to receive what you are doing. You are doing a lot. Sit. Breathe. Let it sink in that you are doing your best. Love yourself as you are. This makes it sustainable to continue to show up for your Rare child and family.
Coming Up This Week: Adjusting to the diagnosis & Becoming an Advocate for Your Rare Child
Becoming a member of a Rare Family begins with receiving a diagnosis and has many stages along the way. Many feelings will arise as your life shifts and you become the resident expert on your child’s Rare disease. Come share how you advocate for your Rare child and what you’ve learned. Please join us for a potent conversation.
You Are Welcome 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.
Come as you are. Your presence is a contribution.
Zoom Link:
We look forward to being together soon.
Warmly,
Padma
