What I Need the Most as the Parent of a Child With a Terminal Illness

In an attempt to educate others, I’m going to be very real and honest. I’ve been parenting a child with a terminal illness for nearly four years now. People assume I’ve got it down pat. No one (besides my parents) calls or texts to check on me anymore. Jordyn’s diagnosis is “old news” to others. I get it. It’s the way of the world. The initial shock has worn off.

However, I think I can speak for other families when I say that our children’s diagnoses will never be “old news.” The shock will never wear off for us. Friends and outsiders are able to pick up and move on, but our daily struggles continue. Our kids struggle every day. We have good days, but we also have bad days and need support.

We began this journey in 2015 with the diagnosis of Alexander disease. We haven’t been the same since. We have aged well beyond our years. I struggle with bouts of anxiety and depression and there are days when medication no longer helps. Sometimes I feel there is a constant cloud over even our best days.

I think people are scared to reach out. Since Jordyn was diagnosed, friends that I once had are afraid to reach out – they might fear they are bothering me (never), think that I’m too busy to talk (on the contrary, I need the conversation), or fear that the discussion will turn to negative thoughts (which might be very likely to occur because life isn’t easy).

In reality, I need more people to reach out. Yes, I’m busy, but it’s important to me to know that people care — that we haven’t been forgotten. Our struggles, just like everyone else’s, are never over. We need all the love and support we can get as Jordyn gets older and her health declines. It’s not something I like to admit, but it’s inevitable with this disease. Until there is a cure, her health is unlikely to improve. The progression may be slow (we can at least pray for that), but it’s always there like a silent shadow. I never try to sugarcoat things. I believe the only way we can teach compassion is to help people understand our trials. It’s the only way we can truly get a sense of how to help each other. My hope is to educate others about this disease and help them understand that Jordyn fights big battles every day. It’s important that we never forget what each of us is going through. We need to try and lift each other up instead.