Feeling Cornered
Share
Renna was diagnosed with a rare genetic disorder called Pitt Hopkins Syndrome in the summer of 2022. This diagnosis gave us a feeling of relief, but also a dreadful feeling of being cornered. Of being trapped and stuck in our circumstances with little control of the outcome. But as time went on, we began to develop a support team. We connected with other families who also had children with Pitt Hopkins, as well as other disorders, disabilities and special needs. Our team of specialists, therapists, service coordinators and social workers also increased. We soon turned this negative feeling of being stuck in a corner into something positive as we began to actively grow our corner, grow Renna’s Corner.
It’s okay to feel “cornered”, but no one wants to stay there. It’s hard work to make all the phone calls, get out of your comfort zone, be vulnerable and meet other families who are also struggling with having a child with a disability or special needs like Renna. But it’s all so worth it!
Why you may feel cornered:
- Lack of options or resources: You may feel cornered or unable to move forward if you don’t know you have options or resources available to you.
- Lack of support from others: If you don’t have support or friendships with others who get it, you may feel isolated or cornered.
- Lack of control: We can’t usually control our circumstances or the fact that our child has a disorder that creates challenges for them (and us), but we can do things to educate ourselves, take care of ourselves, and surround ourselves with others who can help.
Do you feel cornered today? I encourage you to start by reaching out and getting people in your corner. Here are a few ways to start.
- Join Online Groups: Join groups online that have things in common with you and your family. Maybe they have the same diagnosis or live in the same area. Then dig a little deeper and send some direct messages to a few different members. Some people will be more open and willing to chat, those are the people you’ll want to see if you have a connection with. Begin to follow these families on social media and cheer each other on as you begin to build a friendship and grow your support team.
- Find Local Organizations: Find a local organization that will help support you and give you additional resources. You can start your search by asking your pediatrician for recommendations. Most offices will have a nurse or social worker that can help you find the right connections. You can also look online for early intervention services, developmental disabilities or support coordination services. Here are a couple that have been helpful for us.
Feeling cornered can look different for everyone and the solutions can also vary from person to person. So take your time to process how you’re feeling as you begin to grow your corner.