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20 Years Later

To everyone out there worried about letting go, how or if they will be remembered, whether a new spouse or stepparent will “replace” you… this is 20 years later: from a spouse and a child who was 20 months old when she lost her daddy:

Attached are some pictures of the deathiversary tradition we did with the balloons. I am trying to change the tradition. When I did it I wasn’t aware of the environmental issues. But my kids have been so attached to the tradition that they continue to do it and I don’t have the heart to stop them. His father raised the issue this year and I said this might be a good year to make it the last year we do balloons and think about a different tradition that is more environmentally friendly.

Regardless, I want you to know, and feel free to share, that even 20 years later… you are never forgotten if you are in someone’s heart, like you are in so many, even beyond your immediate family. He has been more remembered this year than any other year I think. Other than the first maybe.

We had a table set up for him with his picture with Ashley at her wedding.

The frame/photo gift with a butterfly was from me. The flower vase was from her grandmother on her mom’s side. It was beautiful. ❤️

The girls have necklaces with some of his ashes that they were at special events he should’ve been present for.

I was grateful there was an empty seat where my sister didn’t show up for my daughters graduation, and while I was disappointed that my sister disappointed her, I was able to place flowers in that chair and it represented his absence.

When I die, I want part of my ashes buried with the remainder of his that I have in a safe in a small medicine bottle in case anyone loses their own ashes or necklace, so it’s not forever lost and they can get another one.

I’m certain he will be part of their every special day, all the way to their own funerals.

Please know you are never, ever forgotten, even if a stepmom comes in one day to give them a small portion of additional love (because it can’t ever replace you… it can only add).

My kiddo enjoying the rays I can’t with my kiddo! So grateful she has a good stepmom and I get to watch them grow closer! ❤️

I even recently shared with someone who is married to a man who lost his wife, and she told me about how she gave the kids a gift recently that honored their late spouse and mom.

I teared up over that. And I thanked her. And I told her she probably has no idea what that means to them. Because I know what it means to me when Kennedy’s stepmother thinks of me. That means she will keep me even more alive than I would be even if she didn’t acknowledge me at all.

I picked Kennedy up yesterday. She came with a picture her stepmom’s mother sent for me.

Anyway, I wanted you to know a lot of this stuff. Having been on both ends as the surviving parent and now the parent unlikely to survive, I know this issue from both sides. So I thought I would share this side with you, on the other side. Knowing how much Josh has a life in Madison’s life makes me feel more secure that I will not be forgotten when I’m gone. ❤️🙏🏽❤️

By Gladys D. Smith-Mangan

I’m a 46 year old mom to 3 kids and grandma to one, a military brat, a music lover, a widow, and an involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 12 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.

My condition, Churg Strauss Syndrome (CSS), or Eosinophilic Granulomatosis with Polyangitis (EGPA), as it is currently called, is sarcastic and ironic, just like I am. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring.

It is diagnosed in only one to two out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. It is most evident for me in the way it made my asthma go from completely controlled to uncontrolled, no matter what we do.
I’m currently on a low dose of chemo and a biologic in addition to prednisone, and trying to wean off.

My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can.

People always tell me I should write more, so here we are. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.

Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. (When it doesn’t cause a deadly asthma attack.)

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