Caregiver Blog

I remember that evening like it was yesterday. The day my professor put a name to what i had experienced for years, “ambiguous loss”. I finally felt not crazy. Let me explain:

I had just written an assignment explaining the day my husband and I received our son’s autism diagnosis when he was 4 years old. We had reactions we were not prepared for; utter despair. But why?! We knew since our son was 2 years old that he was non-verbal and was already in need of indefinite therapies. However, with the concrete DSM-5 diagnosis now officially given to him, we were in complete shock and devestation. We cried for so long.

We tried so many therapies and food options. We would rush to a Church alter for our son to get a miraculous prayer answered to be “normal.”

What I had also told my professor was that I had received a much needed revelation from God not long after I was feverishly praying daily for my son to no longer be autistic. God stopped me to let me hear a question to answer, ‘If I give you the child you are praying to have, wouldn’t you miss this one?’ I had not thought about it like that before. Of course I would. I would miss our son’s mannerisms that let me knew he was over the moon. I would miss his quirkiness that makes him who he is and all that his personality has to offer those he comes in contact with. Our son is a genius and taught himself how to read, write, spell and do math. I had my genius child I always wanted ever since watching prodigy kids on the Oprah Winfrey show. I told God, ‘Yes, I would. I don’t want a different child. I would miss this one too much. I want my child.’ God was letting me know to appreciate the child I was entrusted with and enjoy who I have gotten to love so dearly.

After I shared my experiences with my professor, she said, ‘Sounds like you and your husband experienced ambiguous loss." I had never heard that phrase before. I suddenly looked into all the grieving stages. Sure enough, I had been through every single stage.

Now, this is what I have the honor and privelage doing. Processing the grief of ambiguous loss with other caregivers as well. Here’s the other thing about ambiguous loss, it is indefinitely experienced and processed for caregivers. That is because there is no actual death thank goodness, but that means there is no closure. That can be difficult for the brain that wants to find closure. However, with a tremendous amount of learning, I have also learned to live with ambiguous loss is not as bleak or hopeless as it sounds. Quite the opposite. Now meaning can be found along with a renewed sense of hope for our family’s future. In this journey, we have discovered what we have learned, experienced resilient strength, and ways to connect with others who are walking through very similar situations in their families as well. We’re not alone and even though closure is not in sight, flexibility and adaptability is allowed to be found with every new challenge or victory we get to experience. This life has turned to a motto of ‘I am forced to..’ to a motto of ‘I get to...’

So, many thanks to Dr. Linda Hoover for being the one to help me put a name to my experience that has now influenced the work I get to do with my clients and that I get to process with my family. It’s been a journey and we look forward to continued adventures of finding and learning more about ourselves and especially our amazing hero of a son, our ultimate champion!