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.
