Yes I agree. In my experience, from the outside looking in people only see the survival. I have PTSD from everything we went through but all I ever hear is oh look how good they're doing now! You guys made it! And yeah I'm grateful and I adore my children. But this has been an uphill battle for all of us, it's not over, and it's like we aren't supposed to acknowledge that at all. Just shut up and be happy they lived. I am, but it's still fucking hard.
My twins were born 10 weeks early, weighing about 2.5 pounds each. Our neonatologists and other specialists all told us that they were very lucky to be as healthy as they were and not have any major disabilities. Lucky has meant heart murmurs, difficulty gaining weight and growing, reflux, chronic constipation, feeding issues requiring therapy, physical delays and disabilities requiring therapy, multiple surgeries, compromised immune systems, and more. They're six now and if you didn't know you'd think they are typical kindergartners. We currently have specialists for Physical Therapy, Urology, Gastroenterology, Endocrinology, and Psychiatry.
And we are the lucky ones. Parents of these preemies need to prepare for a lifetime of complications, doctors visits, stress, fear, and trauma. These kids will have to fight for every milestone. At what point does it become unethical to keep babies alive and force them through a life of suffering? My kids are happy and have excellent quality of life and I still sometimes feel guilty for everything they have to deal with. It is a very complicated topic for sure.
TheWayOfTheLeaf t1_jddynfs wrote
Reply to comment by brimpol in I have a child with an IEP, which school district would be best? by Thursigar
Can I ask which school this is at?