Friday, February 21, 2014

Hard to Breath

Sometimes it's hard to breath.
Not because I'm sick.
Or have a chronic illness.

It's a combination of things. But mostly panic... and dread.

It's hard to make friends in the CF community.
Not because I don't like people. (which I don't sometimes)
Or because there aren't many people to connect with.

It's mostly because when you reach out or get to know these amazing people and you learn of their struggles and share similar trials. You start to care for them, and fear for them. And you get slapped in the face with the harsh reality of cystic fibrosis.

It's a harsh reality.

Since Molly was diagnosed I wanted to connect with other people in the CF community. So I searched and read stories and cried.... A LOT. So I stopped.

It was too hard. I couldn't deal with it.
I would panic and cry at what was happening to kids only months older than Molly and fear for them. And fear for Molly's future. So I took a break and I had my family members with CF and they would be my community until I got stronger.

I still cry every time I try to reach out and be apart of the CF community. It makes me so sad. I know there is so much happiness. Don't think that it's this horrible depressing thing. There are so many positive and great things. I look forward to meeting and connecting with more people.

But it's hard. You need to be strong.

I'm not.

Not today.

I'm a hot mess.

I'm struggling, daily, to be able to just breath.

The older she gets the more I fear for her. I want her to stay little forever. Little and perfect and healthy.

We had a cf appointment and Molly's doing ok. Not great, but ok. Her enzymes seem to not be working for her any more. So we decided to switch to a different type and see if this will fix the problem.

In the meantime, while we wait for the insurance to approve the new enzymes, she will continue taking the ones she is already on. But like I said they don't seem to be working all that great for her anymore. So she is dealing with all that awesome upset tummy stuff. Bloated, spitting up, just pure awesomeness.
And because it seems to be going right threw her, she is starving all the time.
She's a joy to be around right now. But would you be a happy camper? I know I wouldn't be.

And so we wait, and pray, and try other things to see if we can keep her happy and healthy.

And just keep trying to Breath.

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