Entry Nine- Underworld

There is this wonderful underworld of parents who are raising children with special needs. I never imagined that I would be apart of this underworld but now I am. Parents who belong to this world understand one another because we have all experienced something similar. We “Get it”. Friends and family have the best intentions by saying that they understand, but they are unable to truly “Get it” because they have not lived it.

They have not lived in emergency rooms, watched their child go through endless testing, ridden in ambulances, or spent days or even weeks inpatient with their child. And thank goodness they haven’t! It’s traumatizing. They don’t have a packed hospital bag in the back of their car in case they have to suddenly go to the ER and end up getting admitted to the hospital. They haven’t left in the middle of the night taking one child to the ER and their other child has woken up, surprised in the morning to find grandma and grandpa making breakfast and not their parents. These are things that are impossible to understand unless you have lived it.

We have family and friends who have come over in the middle of the night or taken my daughter for a few days to allow my husband and I to go to the hospital together. I have friends that live far away and are happy to just listen to me talk on the phone. We are surrounded by an amazing family and group of friends who support us. Even though they might not “Get it”, they support us 100%.

To those people: it is okay that you don’t understand, I am glad that you don’t. Just being there in the ways that you have been has helped in ways that “thank you” doesn’t seem like enough. You know who you are.

I titled this post “Underworld” because it is. Although we have had my son’s diagnosis for a year and a half, it is still painful to talk about. My son’s first year of life was by far the hardest year in mine (and I survived cancer). Part of it is a blur and part of it I remember so vividly. I have not shared a lot of my son on my regular social media account. I am not sure exactly why. Maybe it is because I know that he is “different” and I am worried that he will be secretly judged or looked at in a certain way that I am not ready for. I know that he is “different” and no matter how hard I try he will always be “different”. I have wanted to protect him, or maybe protect myself from that for awhile. I have felt liberated by my new instagram page because I now feel comfortable posting pictures of my son freely. Knowing that I am creating a safe place for myself to share all aspects of my “special family”. I have created my own underworld in a sense.

I want to gain the strength to be an advocate for my son. I want to be able to say “yes he has different needs compared to a typical child and how can you help me, help him create a life for himself”. I want to be able to share my blog on my personal social media so that typical families can have some sense of the inner struggles experienced by a mom and a family raising a child with special needs. I think that knowledge can create compassion. And maybe this knowledge will translate into more doors being opened for my son and also for other children who have special needs in the future

I think that this is the end goal for my blog. To bring my inner struggles to light and help in anyway that I can to unveil this Underworld.

Photo: June 2020

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