Parenting and Rare Disease: A Journey Through Grief and Acceptance

The day my amazing little boy was born, I knew he was different.

I was 22 years old and forced to grow up quicker than most. Motherly instincts, formed over my 9-month pregnancy, told me this journey was just beginning. Part of me wanted to deny the fact that this life ahead would be hard, but the other part knew I needed to put my feelings aside.

Suppressing my own emotions

My son was the primary focus, not me. I often had to remind myself that he didn't ask for this life; it chose him, and my job was to be his best advocate.

Looking back, I realize that I suppressed my own emotions and didn't let myself feel them as they came in. Years later, I realized this was unhealthy and that to accept my situation, I needed to be able to deal with feelings as they came in.

Now, to avoid feelings of denial, I break my feelings down as they come in. I get to the root of what caused me to get there and find coping mechanisms to deal with the next time they hit – because they will return.

Fighting through depression

In 2022, I  struggled more than ever. The symptoms of my son's rare disease hit me daily and often reminded me how different our family is. I felt alone and isolated – even from my family and friends – with nobody on my side.

Despite the challenges I faced personally, I forced myself to find the positive. I wanted to give back and make an impact. My son's smile pushed me through my hardest days and landed me in my advocacy work. I was fighting for a way to connect with other families around the world who faced similar challenges.

Bringing our rare disease community together

In August 2022, I published www.vamp2.org to search for more patients, bring our disease community together, validate the feelings we all face, and help caregivers feel comfortable when they are vulnerable. I got through my days of struggle because of this.

I would be lying if I said I didn't still feel depressed. However, the impact I have made on families throughout the world outside of my own makes the feelings worth fighting through. Instead of fighting the emotions alone, I now have a community to get me through the hardest days.

Acceptance takes constant effort

Nowadays, my emotions seem to hit me when I least expect them. Today is one of those days for me. Last week, my son was admitted to the hospital for long-term electroencephalogram (EEG) monitoring because of an increase in staring episodes and tremors at home, and concern for seizures at school.

After being in the hospital for a few days, there was still nothing to validate my concerns. I was only told his EEG had abnormal spikes, which is normal for us.

Acceptance is a constant effort and one that requires a constant fight. I often argue with myself to get through emotions. I have learned over time how to manage, but accepting the unknown is not something I will ever fully be able to do.

I am the version of myself I was meant to be

As time goes on, I have learned how to better stay in touch with my feelings and needs. This has been a relief. When the feelings come flooding in, I often have a go-to friend, family member, or a self-care activity that temporarily takes the feelings away. Once I deal with the emotions, I force myself to write in my journal to make sure the feeling is gone. I document how I coped.

Although I dislike this journey, I am grateful for what it has brought out in me. I have found positives in areas most could never imagine and have become dedicated to helping others besides my own child. Having a child with a rare disease has allowed me to become the version of myself I was meant to be – one that I am so proud of.

Acceptance and grief are continuous. Grief will never go away, but it will change over time, and with that comes acceptance of the situation. Over time, grief will ease, and acceptance will become more welcoming. In my opinion, it will never be easy, but it is possible to manage.