Receiving an Usher syndrome diagnosis evokes a lot of emotions. It is overwhelming to be told that you are going deaf and blind or that your child will one day be deaf and blind. It’s completely normal and acceptable to feel fear associated with these losses; fear of progressive loss, fear of the unknown.
Grief surrounds the loss of what you thought the future would be, along with new and raw grief when your vision changes. It can be just as challenging for family members - especially parents - as it is for the individual with Usher syndrome. While eagerly awaiting and hoping for research advances and news, it’s important to recognize and tend to the management of heavy feelings that are being experienced now.
The grief cycle is traditionally accepted to be: Denial, Anger, Depression, Bargaining, and Acceptance. Grieving is not a linear process; you will go back and forth between these stages. You may restart these stages again every time you experience a noticeable change in your vision. You may get used to a certain plateau in your vision and then experience a change, taking you back to the beginning of the grieving process.
Your emotions won’t always make sense. They are overwhelming and the best way to manage them is to give yourself permission to feel your feelings.
The only way out is through.
There is often a lack of closure because the future holds uncertainty. Living in the acceptance stage means that you are able to hold space for multiple emotions: hope for the future, fear of the unknown, grief and loss. The future can be exciting because there is SO much to gain, too. It is not all loss.
Having a strong #USHFamily gives us a safe space to process some of these intense feelings with people who “get it.” The USH Blue Book is a private Google forum where families can connect, share experiences, ask questions, and validate each other. A sense of community with those with shared experiences is essential.
When you find each other, it is a gift to realize that your feelings are valid and you are not alone. Do whatever you can to find each other. Connection is a part of the human experience and will provide support and nurturing when you need it most.
