Happy Rare Disease Day!

i have never really 'celebrated' this day before, or acknowledged it i guess you would say.  i never really knew that much about it.  i have kept myself kind of distant from things like this before, i haven't really gotten involved or let myself really get too close or aware.  i think i've done this for a couple of reasons....first, i really hadn't even heard of it until just last year.  but i think the main reason i haven't been involved or even searched out something like this is because it's been safer in a way for me to keep everything in, keep everything really close and guarded because that has made it less 'real'.....safer and easier to handle in a way.  i've been engrossed in everything RARE and UNDIAGNOSED for over 5 years now, searching and researching and living it and fighting it, but somehow not putting it out there for everyone to see and know seemed safer for me.  maybe i just didn't want to fully face reality, maybe by not opening up or letting others in would make it somehow less real....

sounds pretty cowardly, doesn't it?

and it's not like i haven't talked about it or don't share my beautiful boy's story with everyone who asks or is interested.  i love talking about my son, i am forever searching out people who will listen or who might have answers.  i just never got involved with things like Rare Disease Day or other things like this because i guess just wasn't ready to not have connor all to myself, not ready to step outside our little comfort zone.

i still sometimes feel like i just want to hide away, just keep my sweet boy all to myself and pretend like nothing bad will ever happen.....pretend like i will outlive my son the way i'm supposed to......pretend like we have a diagnosis and that there's something we can do to 'fix' it.....

but the fact is, my son has a degenerative brain disease.  he is UNDIAGNOSED.  his brain is shrinking.  no doctor knows why, or what it is, or how long he will live.  no one can tell me a prognosis or what to expect.  a few years ago his doctors did not think he would make it through the winter. 

but he's here.  and he's beautiful.  and strong. 

and i'm going to go out on a limb and say he's pretty rare......seeing as how they can't figure out what disease he has yet....

i have come to know of so many amazing children, so many amazing mom's and families living with rare diseases or facing difficult challenges in their lives.  they have inspired me.  in so many ways.  they have made me want to share my son and our story, if only for the reason that it may touch someone else's life they way their stories have touched mine.

i am so proud to be connor's mom.  i am glad i get to take care of him.  i am so grateful for the way he has changed my life and for the person he makes me want to be.

i am so thankful for the opportunity to share his story, to tell others about my beautiful boy and his sweet, special spirit.  

i will continue to fight for my son.  i will continue to search the ends of the earth for a diagnosis.  i will continue to love him with all my being and hope that it's enough.  i will keep trying to be all that he needs me to be.  i will try harder to spread awareness about diseases and rare diseases and the desperate need for more research and more funding for all the children out there being taken far too soon.

i will keep searching for answers for my sweet boy.   while we might not have any answers......

we always have HOPE.

<3