Bailey had no idea what to expect. She isn't a "girly girl" and has never really liked her hair and make-up done....but last night was different! It was a night that chemotherapy didn't matter...Thinning hair, didn't matter.
Last night, we were among family. A family that does not judge, and embraces everything about you.
Last night, was all about Bailey....And the 50+ other young adults who came out to the Prom that was held for current and past patients of the Children's Hospital in Aurora, Colorado.
We took the elevator to the third floor of the Mariot Hotel, and there were men and women, ready and waiting to glam up my daughter.
Bailey didn't know what to do....."Do you want your hair up or down?", "Curled or straightened?" Bailey just shrugged her shoulders, so the woman started curling. :)
Bailey looked so grown up....So beautiful....So happy.
Thanks so much to all involved with this wonderful night, aside from the parking, it was a night Bailey will never forget! :)
I just got an e-mail from someone telling me that they thought I was a fake. That my whole "Thriving Thing" was for attention and money.
I've gotten a few e-mails like this, in the the past, but never chose to address them. Rich tells me I should take the high road, and consider the fact that I may have some 'haters' as a sign that I'm actually making a difference.
One thing this person said is true. I am online and sharing my stories for attention - that is, ATTENTION for NF. Our disorder is one of the least recognized, least understood on the planet, and it deserves attention. I want others to hear what I have to say, and hear what YOU have to say, to allow it to impact their lives so THEY believe that they can also continue to learn more about NF, and aspire to themselves THRIVE with Neurofibromatosis
Anyone who truly knows me, knows that my only intention of being so "out there" with my Thriving attitude is simply to show others that they have the control to change their attitude....That having NF, or any other challenge, doesn't have to smash your dreams.
As far as becoming rich from Thriving with Neurofibromatosis....my husband and kids are still waiting for the Brinks truck to show up. Everything I make from Thriving gets put back into creating more product, bringing more awareness, or, as need be, making sure my lights don't get shut off.
The "profit" I see from what I do, is that of seeing others change their attitudes....And I guess THAT does make me rich.
I LOVE connecting with other families who are dealing with Neurofibromatosis. The connection these activities provide, is a vital part in how we cope with this disorder.
Today was the CTF Annual Picnic in Colorado and my family (all 8 of us) piled into the van, excited to meet some new friends.
Mr. Fun the clown/magician showed up and made all the kiddos laugh, with his jokes and great tricks!
Rachel was picked to show off some of Mr. Fun's silly tricks!
We've been planning it for WEEKS! Riley had been counting the hours....the minutes, until the day came, where the two of us could use our discount tickets for the LakeSide Amusement Park in Denver.
Yesterday, was one of the best days I have had in a LONG time. It was a time to just have fun, and connect.
Riley and I headed for the GIANT white wooden roller coaster, that has been a part of this park for more than 70 years!
Before the ride opened, Riley and I made a goal of riding this ride over and over 30 times.....After a few times on it though, we thought 20 times, was a more realistic goal.
We'd ride, then, run around to the entrance, over and over. Keeping up with Riley, my 10 year old, is not an easy task, but it was sure fun trying!
We made our goal of 20 times, and became quite popular with the ride operators who commented that they hadn't ever seen a "woman MY age", ride this coaster so many times. HA!
20th Time!
Wooo Hooo! GREAT ROLLER COASTER!
HATED IT! Anything "spinny" makes me horribly sick!
During our 18th time, on the wooden coaster, while raising my hands, for the entire ride, I slammed my elbow onto the metal bar.
I didn't know it then, even though the pain was horrible, that I had dislocated it.
Riley and I ran back around to the entrance, another 2 times, to complete our goal...By then, then pain too much for me to handle.
After our 20th time, the park closed ...We had MADE IT!
Kinda funny, and totally worth it. The emergency room doctors, kept popping their heads in asking me if I was "The Roller Coaster Injury".
X-rays were taken, then my elbow was popped back into place. It's black and blue and has a deep bone bruise.
This is kinda like life. It's hard, you want to give up. But you keep going, because of a goal! Life has its ups, and downs.....It's really fast parts, straight and slow parts, and sometimes you get hurt, but if you stay focused on your goal, it makes the ride totally worth it!
My favorite summer was in 1984. I was 10 yrs old and didn't have a care in the world. The day school let out for 2 1/2 months, seemed like the best day of my life!
"No more pencils....No more books...No more teacher's dirty looks!" was sang as I ran off the school grounds, to my house, a few blocks away!
I stripped of my school clothes, and put on my swim suit, that stayed on, the entire summer!
There is definitely something magical about summer! Until you become an adult...Then it changes into something different.
With 6 kids all home for summer vacation, as well as 2 babysitting kids, summer has become, well....BUSY!
We still have chemotherapy, and countless doctor visits. We still have days filled with nausea, exhaustion, and simply not feeling well. There is no "break" from all the seriousness that Neurofibromatosis has brought to our lives...No breaks from driving back and forth to the hospital....No breaks from blood counts, temperature taking and hair falling out.
What we do have, is today. We have the chance to make the summer as magical as we want it. We can live our days in our swimming suit, and watch tv till we fall asleep. We can laugh at the belly flops in the pool, and run through the sprinklers.
Sometimes, magic has to be found and sometimes, you have to make your own magic.
The last few weeks of Chemotherapy have been rough. We are almost done with our 8th treatment, and Bailey is having a rough time. She is tired all the time and is beginning to lose some of her hair.
The reality of all of this is hard on everyone....And I try to make sure Bailey knows, that it is okay to "fall apart"....To have bad days. She tries so hard to put on a good face...But one can only do that for so long.
“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.” -Napoleon Hill (1883-1970)
We have realized, as a family, just how strong we can be. We have learned to lean on each other and focus our energy on ways to keep our spirits up.
The kids are out for summer and Bailey is really looking forward to going to camp. It's a time away from Chemo and doctors...A time that she can just be a kid, and enjoy life.
