Reason #... I don't know the number...

Reason #... I don't know the number...

I've always assigned a number to the the date, but for this one it's just a projected date... a maybe... a hope... a promise... that I don't know will be fulfilled...

Bean is handling her re-trach, physically, with flying stars...

But, emotionally, she is a wreck... I'm a wreck, too...

She cries to me to be able to swim and dance and just be back to herself... She equates herself as a 'baby', because only babies need to have these things...

I assure her that she is still the amazing, dancing, foolish, outgoing girl that is 'Ellie'...

But, she's not totally buying it...

I've sold my soul to the devil and promised her that she will be swimming again by the end of summer, but, I fear that may not be the case...

She will be seen by the BEST team to make this possible for her, but... she is unique...Even within her syndrome, she is unique... and 'unique' often ends up in dissapointment...

We are the case that defies definition...

When I was young, I thought that I wanted to make my mark at being unique, but now I curse it....

I long for typical...

I want my girl to have all of the god-damned typical things that she deserves...

I hate having my girl fall asleep feeling like she's missing out on all that life has to offer her...

I hate falling asleep being bitter that my awesome girl is feeling inadequate and secondary...

I know that in the end, we will perservere and be strong, But In this moment, Im just Bitter Mom...

Reason #... I'll get back to you with a number...