on Emma

[juniperus]

Three years ago, seven other parents/bloggers and I banded together for a Blogging For Kids With Disabilities Day (my participation: part I, II, and III). Since then I've considered education (not only Emma's, but everyone who encounters Emma, and anyone else who will listen) part of my job as a parent. Invisible disabilities are difficult to

Comments

[sbrande]

Oh darling, my heart goes out to you it honestly does

[bellebonnesage]

Oh my dear friend. You'd mentioned Emma's trisomy recently, and I thought "hey wait, I didn't know about *that*." I definitely get the good news/bad news aspect -- how wonderful to have an answer, but an answer that doesn't tell you much AND that makes it clear that nothing can be done to fix the problem is a hell of a blow.

I am not religious at all, so I cannot see any higher purpose for suffering -- yours, Emma's or the rest of your family's. But I do think it is heroic to figure out what needs to be done, and to do it. You are a hero. Aragorn can tell you, it never gets any easier or any more glamorous (that's why he ducked his responsibilities for decades!). But nothing counts as much for me as doing what has to be done.

Thank you for your magnificent essay. Your writing is really wonderful -- your advocacy, your passion, your well-presented information, your clear style, and your humanity.

Much love to you all.

[shefa]

Thank you for writing this. You've been on such a winding road with Emma -- trying to figure out what her needs are, and why... and then discovering the underlying diagnosis along the way (despite what it does and doesn't give you, in terms of direction).

I also live with ADHD and ADD (as you know), and the feelings of hopelessness and helplessness are suffocating sometimes. I'd do anything for them not to have to deal with the issues this brings.

*hugs you

[sienamystic]

I don't have children (due in small part to the fact that I think any child of mine and my husband's would face way too many bad genes on both sides of our pool) but I watched one of my best friends fight a very similar fight through her daughter's childhood. Things are better now, although with puberty about to strike I have no doubt that my friend is battening down the hatches. It sounds absolutly exhausting and frightening.

Do you read Rob Rummel Hudson's blog about his daughter Schuyler? I've been reading him for a long time now - he's a fabulous writer (and recently published a book) and the bulk of his writing is about having a daughter with an extremely rare neurological issue.

[bluestocking79]

~hugs~

What a wonderful advocate you are, not just for Emma, but for all the kids (and parents) who struggle with so-called "invisible" diseases and disorders. To those dealing with them, they're all too tangible, but many other s really need to be educated in order to understand the challenges that these kids and their families face. Thank you for doing that with such clarity, intelligence and passion.

Also... I just want to say that I think you're a wonderful mom. I know you feel that you're just doing your job, doing what needs to be done, but your love for Emma and your mental/spiritual toughness in pursuing a diagnosis and making sure she's been treated in ways that work to her benefit... it's just very inspiring to me. ~hugs~ for you both.