James talks about his family's experience grieving for his son, Leo
Originally created for Learn About Spinal Muscular Atrophy ( [ Ссылка ] )
TRANSCRIPT:
You know, like any parent, like you hear your child, your baby is diagnosed with an untreatable, incurable, fatal disease and you want somebody to tell you it's not true or you want somebody to tell you that they can fix it or help you.
It helped in some ways only in confirming a lot of things for us, but ultimately, it is what it is. You go to the hospital or you're at the hospital everyday and you know that your kid is going to die. There's nothing you can do about it. There's nothing anybody can do about it. They can tell you the mechanics of the condition or why it happens or what the genes are, but it's still the same. You know, you still go to the hospital knowing that your child is going to die.
Even before he died, we started seeing a grief counselor at the hospital. Our families and friends were there every day with us. You know, people were great, but at the end of it, it's still just me and my wife, you know, and it's still our child and when we're alone at night, it's just us and how do we deal with it. And on some certain level, there's nothing anybody can really do. You know, there's nothing anybody can really do or say to make you feel any better.
It is good to reach out to them because they do have a lot of information that doesn't make anything any easier, but at least settles some of the questions in your mind. At least lets you know what you're dealing with, at least lets you prepare for what's coming and it's always better to at least know than not to know. It's always better to have information than not.
