Entry Twenty- The Zoo

We went to the zoo last week with my parents, my sister and my nephew. It was really nice to get out and do a normal activity. But I have to admit, it brought back feelings of grief. Both my social worker and my family doctor have told me that I need to work through the seven stages of grief after receiving Oscar’s diagnosis a year and a half ago. And I have or at least I have learned to cope better.

I have worked through the “shock” of his diagnosis. I am working through “denial” although I do think there are aspects of denial that I have avoided. Maybe I am in denial about my son’s speech? Maybe I am in denial that my son’s seizures won’t come back? Maybe I am in denial about what my son’s future will look like? But I think those are thoughts that I will have for a very long time. I never got “angry“. Maybe that isn’t my personality or maybe I am not there yet? I probably “bargained” when I was busy researching stem cell treatments searching for a “cure” knowing deep down that a cure for a genetic diagnosis is impossible. I have definitely been through “depression“. I have “accepted” my son’s delays and celebrated his abilities. And we are “rebuilding” and shaping our family in a way that wasn’t planned but that is working for us today.

But grief hit me at the zoo. Why there? Everyone had such a great time, including me. But grief hit me. I don’t think that anybody was aware of this because I do my best to hide it. I am not sure if the readers of this blog or my followers on Instagram think that I have it all together or that I have “gotten over” Oscar’s diagnosis… I haven’t and I am not sure if I ever will. But I do do my best to cope with it. Somedays and some moments of somedays I cope better compared to other days and moments. The zoo was a moment. 

My nephew is 5 months older than Oscar. It is impossible for me not to compare their abilities. My nephew is a perfectly typical 2 ½ year old boy who walks, runs, talks, eats and drinks independently.  At the zoo Olivia was running and playing with her cousin. She had such a great time with him!! “Chase me” ….” Find me” ….” Come and look at this” she would yell to him. They giggled as they explored the zoo together. I so wish that she could also do this with Oscar.

Olivia, Grandma and her cousin exploring the zoo August 2020

Why was it hard watching Olivia having a great time with her cousin? Because she can’t do those things with her brother (yet). And yes, their is a 3 1/2 year age difference between my kids and I understand that at their current ages there would be limitations in their ability to play together. His delays just make those limitations that much greater. It did make me so happy to see her playing with her cousin and it did also make me feel sad because she “should be” able to also do this with Oscar. The three of them “should be” able to play together. At almost 2 years old Oscar “should be” walking, talking and playing and he’s not. I do in someways grieve the brother/sister relationship that I had dreamed of my kids having. I can’t help it! Will my kids be able to ride bikes together? I don’t know. Most families of young children don’t even think of asking themselves that question. I think of it almost every time I see a family on a bike ride. Anyways, I can’t let those moments get to me.

Back to the zoo. Oscar was out of the stroller most of the time holding onto my fingertips as he walked or stood looking at the animals. Grandma and Pops helped him to feed the giraffe which he LOVED. We all had a great time together.

I am constantly reminded of how Oscar’s limitations change the dynamic of how our family interacts. Not in a negative way, it is just different from what I had planned. I am in “Holland” now and I am learning to be okay with that. Check out “Entry Two- Welcome to Holland”

Grandma, Oscar, cousin “B”, Olivia, Pops feeding the giraffes August 2020

2 thoughts on “Entry Twenty- The Zoo

  1. I can relate to this so much. My typical son is 4.5, my son with hypotonia is 2 and my nephew is 3 weeks older than my younger son. The bond they all share is amazing, but is definitely different than what I pictured when my sister and I were pregnant. Thank you so much for sharing!


  2. Hi Lan, your post resonated with me deeply. Although I don’t know how it feels to live in your shoes, I know that Olivia is happy. She loves her brother for who he is- nothing more nothing less and she always will. Oscar is “special” in so many wonderful ways. He has taught all of us, including a Olivia, to be more determined, more compassionate, more loving, more resilient, more hopeful, more understanding, more patient, more grateful. He will be ok because he is so loved and the gifts he shares with others are invaluable. What if Oscar is the greatest gift/teacher you could have ever given Olivia and Olivia the greatest gift/teacher you could give to Oscar?


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