depressing

[nodanaonlyzuul]

so depressing I feel like my brain is going to melt out of my head because it's so ridiculously sad and upsetting.

I knew that Trey's goddaughter has SMA as I mentioned in the other thread but now the realness of it starts as signs of her disease are growing and getting worse. And it was even WORSE than the doctors originally thought. Her's is so bad that the life expectancy isn't even 2-3 years. It's 7-9 months.

She's 8 months.

We are basically beginning to see her slowly die. Her chest doesn't move up and down when she breathes because her muscles are so weak. Her diaphragm is doing all the work.

The nerves in her tongue are dying, and so her tongue trembles.

She can no longer reach her arms out because the muscles are dissipating.

Ugggggh I hate this. I hate this.

[cosmo105]

:( oh my god. such horrible news. puts a lot into perspective. let yourself cry, and be there for the family. hugs, girl.

[nodanaonlyzuul]

it's just something that completely overwhelms. We are going to love her and celebrate her through it all but it's heartbreaking.

And I can't think of anything that would explain or justify such a thing to happen to a child, of a couple that just wanted to have a raise a child out of love.

I just can't.

[abcdefz]

That's horrible. I'm so sorry.

I'd feel helpless if my kid just had a COLD. I can't imagine what something like this would be like.

[camo]

My heart sank and my stomach turned when I read this thread. That is terrible news. My thoughts go out to them :(

[Waus]

:(

[ms.peachy]

How heartbreaking.

I remember a few months ago watching a show about a little girl with cancer. She was 5. Her parents were talking about how she had been a perfectly normal, healthy kid almost right up until she was diagnosed with leukemia. And then she got very sick very fast, and started having to have all of this intensive chemo and radiation, which is of course quite painful and basically brings you to the brink of death. Of course as a parent you can't help but imagine yourself in that place, and I felt sick about it for days, just thinking what it must be like to one day have your happy, healthy, normal child suddenly become so ill, and have to watch your child go through something like that, knowing that they could go through all of that pain and you could still lose them anyway... ach it's too much.

I'm so sorry for you and your friends. It must be so hard.

[kaiser soze]

As a fairly new dad this hits hard - I couldn't imagine my son going through anything like this. I'm so sorry to hear that this is happening

It is difficult accepting this part of life - in a perfect world children would never ever suffer.

[Fern]

(n) sorry babe

[nodanaonlyzuul]

thanks all for listening/reading.

I hate when I get this information at work or see it/talk about it right before I go to bed because then I am thinking about it all day. But I'm at work and have to function so I end up e-venting.

She had a 8th month birthday party this past Saturday. It was already planned, but after the hard hitting reality this Thursday, her parents felt drained and wanted to but couldn't find the energy to host, so we did. We set it up and put up streamers, balloons, got snacks. She had a blast.

It's still heartbreaking, but I'm glad we are celebrating her and that we can be here for her parents to help out. Be it doctors appointments or with happy celebrations for her.

[monkey]

it is so sad :(

i dont know if this will at all be comforting, but my mom once told me that people come into your life to teach you something, and once they're done, they leave. perhaps this child needed to be part of all of your lives for a reason, and you all learned something very important from her, and now she just has to go. the fact that she was part of your life, albeit for a tiny moment, should be celebrated over the fact that she has to go so soon, because she has touched your life in a very important way. i hope the best for all of you.