(C) Daily Kos This story was originally published by Daily Kos and is unaltered. . . . . . . . . . . We Didn't Even Have To Say His Name [1] ['This Content Is Not Subject To Review Daily Kos Staff Prior To Publication.', 'Backgroundurl Avatar_Large', 'Nickname', 'Joined', 'Created_At', 'Story Count', 'N_Stories', 'Comment Count', 'N_Comments', 'Popular Tags'] Date: 2023-01-15 One set of our adorable twins in our front yard a spring or 2 ago! We feed a herd, so I get to see their beauty every year! “I love you Mom.” was the text I just got. “Thanks honey, that means so much. Today is a hard day.” The reply I sent to my younger son who has twins with the fatal diagnosis of Spinal Muscle Atrophy. Precious fraternal twins that are the niece and nephew of his older brother we were talking about. Twins that were in essence his children too in an earlier, happy time, since he will not be having children. He loved them dearly. His name wasn’t mentioned in the texts. We didn’t have to, because today is his birthday. When I read that text, I had been thinking of him, and remembering where I was in my labor that day. I don’t know if you other mothers do that. I always think of this on their birthdays! “Well, it’s 11 o’clock, and I only had 12 hours to go!” Then I remember holding him the first time, looking into his eyes. The depth of those eyes was as clear and profound as the ocean. Coincidentally, that was one of the meanings of his name, the ocean or the sea. I sent him a birthday card this week, my first after being told not to about 2 or 3 years ago. I’m not remembering exactly any more. I believe it’s been 3 years since he spoke to me. There’s been a few texts that always end up in a diatribe rant against me. I’d much rather get none at all. This is for all my fellow Kossacks who’ve had their families ripped apart and destroyed by the trump, Q whacks, and nazi militia cults. Alex Jones and Steve Bannon are their heros. I’ve also lost my only sister and one of my brothers. The other brother, who would’ve been sane and “one of us”, is dead. He died of AIDS in 1992, and I was honored to help him and be with him when he died a beautiful death. Every facial line was erased, he looked 20, he was completely at peace. So I and my baby brother are left in what may be the shrinking world of sanity, on Earth 1. All alone with the exception of some nieces and nephews and possibly cousins. I’ve talked to very few since the dictator wannabe came into power. Being reps, I’m sure they voted for him and support him to this day. I’m sure our family reunions are over, or at least our participation in them. I know the orange ass has destroyed millions of families and friendships. I’ve wondered if there’s any resources on those stats? If anyone has any, I’d love to know. I personally know of many, who like me, have a hole in their hearts where their loved ones used to live. A hole that I don’t think is going to heal. One that I don’t know how to close. I’ve lost my child, such a great loss at any age. My younger son has lost his big brother, who was essentially his twin. They were only 18 months apart, one grade level apart, and did everything together with the same friends. When our little twin boy was in ICU for over 3 months, my oldest son and I were almost the only ones relieving his dad for days and nights in the hospital. Our baby was never left alone. Serious bonding happens in life threatening situations. I don’t really know why I’m writing this other than venting on my day of sadness. Thanks for giving me the format. I’d love to hear from anyone else in the same situation. I’d really love to hear if any of you have made it to the other side. Resolution. Family or friendships returning to where they used to be, after living the hell of that criminal president and his Q nazi militia followers puking all over us. As an addendum, our precious twins are progressing very well and are such happy little kids! The fact that they’re alive is miraculous. They are Type 1 SMA. This is the most serious type and the number one killer of infants in the U.S., unless that has changed. Do you remember the Jerry Lewis Muscular Dystrophy telethons? Many of those children in wheelchairs were Type 1’s. He vowed to cure SMA some day. I feel quite sure that the research he financed with all the money we gave is why my grandchildren are still alive. The only grandkids I’ll ever have. If they had been born much sooner, they very likely would’ve died. My son fought and fought for them to receive the new gene therapy, pre-release, on compassionate use. They finally gave in. It was a simple one-time IV dose costing $2.5 to $5 million. Multiplied x2 for us. And of course, insurance didn’t cover anything. The med was free, my son had to pay for all of the IV delivery. Preceding and following that, they were given Spinraza in their spines quarterly. This was $750,000. I’m not sure if that was yearly or per dose. Doubled. Now they are on a new drug they take orally every day that seems to be working well. Our little boy has to take it in his feeding tube. I have no idea what this costs. I haven’t asked. The real kicker here in Texas is that our little girl, with this fatal diagnosis, can’t get Medicaid because her parents make too much money. Right, and bullshit. There will never be enough money for everything these children will need for the rest of their lives in equipment and therapy and care. Our little boy only gets Medicaid because he came out of that ICU with a hole in his throat for the tracheostomy, and a hole in his gut for the feeding tube. They wanted to make sure they don’t lose money on him. His parents with the same amount of money, decent careers they worked very hard for, and still paying student loan debt, made no difference with him getting Medicaid. All boils down to the GD money, in medicine and everywhere else, every time. This is not a fundraising diary, I had no intention for that. I’ve never discussed my grandkids like this on a public forum. But since I wandered into it due to my eldest, their father started a “go fund me” after they received the twins’ diagnosis and knew what it meant. I’m sure desperation had a lot to do with it. Asking friends and strangers for money is very difficult for hard working, dedicated people. And they are both in service careers. They post pictures, videos, and lots of updates with the kids’ amazing accomplishments. And always, always sincerely thanking their donors, because without them, none of these accomplishments would be possible. These children could easily be bed-bound and immobile, and they are not. They probably get more therapies than any child on earth due to all those wonderful donors. It wouldn’t surprise me. If any of you have a little extra, and would like to help out with giving these twins a good life and education, so hopefully they can to contribute to society, I’ll be happy to share the site individually. Every dollar helps, believe me. And if you’re in my situation with your families or friends or kids, my empathy is with you. I keep thinking and hoping that all the indictments and lawsuits coming down on his head will make a difference. I can only dream of that day. [END] --- [1] Url: https://www.dailykos.com/stories/2023/1/15/2147360/-We-Didn-t-Even-Have-To-Say-His-Name Published and (C) by Daily Kos Content appears here under this condition or license: Site content may be used for any purpose without permission unless otherwise specified. via Magical.Fish Gopher News Feeds: gopher://magical.fish/1/feeds/news/dailykos/