I've been asked by the OR CFF to be the speaker!!!

Wow!
I am humbled and excited, nervous and thrilled all at the same time. I've been asked to speak at this years annual "Chef's Dinner & Wine Extraordinaire" for the Oregon CF chapter! It is their largest fundraiser. It is blacktie...I am so excited to be even a small part in getting the much needed funding to advance research and therapies to try to stop that dang monster CF from destroying the lives of too many families...I had some much needed quiet time this evening and really wrote out whats on my heart. Our journey. our struggles. our passion. our drive. our goals. our ambitions. i am pleased with the outcome. i believe my speech is complete! although, being the type A that I am (NO! not ME!) I will read and reread it and maybe change things around a bit or what have you. but the nuts and bolts of it is just how I would want it to stay. An amazing opportunity.
I have to say that sweet Conner man is doing so well these days! He's really perked up since making it home from his wish trip to Hawaii!!!! His oxygen needs have lessened, his smile is back, his zest for life is back, and yes even the fighting with his brothers is back too! that is a sound that i used to dread!!! but let me tell you, after weeks of seeing him just slumped over, not even enough energy to talk or fight...i WELCOME the shift! Bring on the fighting! I am just so glad that he can breathe again! I took him to clinic on Monday and they didn't even have us do pft's or check his o2...that was just a relief. Not sure about you, but i HATE numbers. Especially when they're bad numbers. I don't want them floating around in my brain causing me more greif then Im already dealing with. Phew. Conner will now go to CF clinic AT LEAST every 2-3 weeks they want to keep a very close eye on him. Unless he gets sick, in which case we take him straight in to be admitted. We filled out the forms to extend his home tutoring thru the school district. that was a hard decision to make. first and foremost I want my child to be healthy and safe. but at a very VERY close second i want my child to have an AMAZING quality of life. so to make that choice to not risk his health by sending him into germville was a very tough one. but i really feel it was the best decision given his current health status. we will make arrangements for his friends to come to our house, or maybe he can go to school when they have special activities like library day or something...it's all about quality.
today was also a very bittersweet day for me. i got his paperwork turned in to the local DMV office and got his disabled parking placards. the handicapped parking. ugh. thats a tough bullet to bite. who would've thought that would be so difficult. I was fine talking about it before they actually put them in my hand. i wasn't prepared for that today. i thought i was just dropping off paperwork...but she gave them to me right there...and said "oh gosh honey, this little guy is so young. bless his heart. best of luck to you" and that was IT! done! my heart sunk. my eyes stung. reality sank in.
cf...i hate you!!!