Every day when I get out of bed, I am reminded right away that life is not the same as it once was.
I no longer need to rush into Casey’s room to relieve the night nurse. I don’t have to get up in the night to be sure Casey and her nurse have what they need. I don’t have to juggle nursing schedules with Tim’s work schedule and running errands. I would give anything to have that hectic day back.
Now my day is filled with working on our nonprofit, going to class and renovating our ranch. There is not a lot of down time, on purpose. When we have free time, our minds tend to wander. We find ourselves spiraling downhill missing our baby girl.
We do our best to keep ourselves busy. Still, regardless of how busy I am, the first thing that comes to mind each morning is how much I miss her. One of the last things I do each night is tell her goodnight.
I miss the little stuff the most.
I miss her rolling her eyes when we’d tell her she had to take a bath. I miss her singing along to Christmas music even in July. I miss all of the pink and purple and glitter that was always on hand. I miss the snuggles and kissing her perfectly chubby little cheeks.
When I hear her name (even if it’s not her but another Casey) it fills my heart. When someone shows me a picture of her that they have, or shares a memory, it makes my day. When her friends come by the house and go tell her urn hello and how much they miss her, I know she is not and never will be forgotten.
We run a nonprofit as her legacy now. We host events for the disability community and we work hard to try and help families to celebrate life every day. It’s so hard to see all the other kids, especially ones that remind me of her, doing things that I know she would love. At the same time though, I know that it is because of her that they are able to do these things. It’s so weird to feel proud and heartbroken at the same time.
It’s hard to believe that it has been almost four years since I last held her in my arms. I am still trying to navigate this world without her. Some days are better than others, but every day I am so aware of the hole in my heart that will never be filled.
Grieving is hard and different for each of us. Here is information that may comfort and help.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.