It's a crazy world I live in when I consider having a rare disease to be "lucky."
Janis Marie |
Friday, September 3, 2010 at 10:00AM My son is alive. For this, I am grateful. Yes, we live with a rare disease, but compared to so many families we are lucky.
{Although I have needed to remind myself of that many, many times in the past few weeks.}
We ARE lucky. Some kids die of rare disease.
We live with one, which is a totally different animal altogether.
And never have I been more aware of that, than this past month as I have been working closely with parents of children diagnosed with rare diseases on the Vote4Hope Pepsi Refresh campaign for Children's Rare Disease Network.
I have been reading their blogs and posting their children's pictures...and crying. A whole lot of crying. Although to be completely honest, some of the crying has nothing to do with them.
It's about me. Us.
But, mostly me.
You see, we have another diagnosis lurking. One that is not so rare at all. And I find myself agonizing that my luck may have just run out.
No, this new diagnosis is not going to kill him. {Although, it very well may break my heart.}
The thing is, as crazy as this may sound, I feel like I am really losing my son this time.

Him, the person.
Or the person I imagined he would be when all this "other" stuff was resolved.
The person who could speak AFTER the Trach was removed. The person who could eat AFTER his jaw was moved. The person who could hear AFTER the ear reconstruction was done.
The cute kid with the big personality, the dreamy eyes and the bouncy curls was going to do all those things and more.
And he was going to live happily ever AFTER.
One day, some day... AFTER all this bad stuff was done.
***record scratch***
Nice dream. I know, I know.
But now my rich fantasy life has been disturbed by reality once more. And somehow, this seems harder to grasp than the life threatening condition he has now.
Weird.
Lately I have been wondering, 'Is it just me or do his eyes seem little less dreamy?'
Turns out, No, it's not just me. Nearly everyone agrees.
My son is getting lost {somewhere in the Autism Spectrum.}
This has me a.) worried b.) fearful c.) out of my element. KWIM?
I am used to being the "rare disease mom", the "trach mom" and the mom who is a fierce advocate for her child.
I have no doubt I will learn how to be that other mom too. {It's what I do.} I just wish I didn't have to learn about this too.
And, yes I know.
I am still lucky. My son is alive.
Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains a blog, Sneak Peek at Me to chronicle her son’s life and complex medical journey.
Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis.
Want to help Vote 4 Hope? You can visit our website or join our Facebook page for more information.

