2009 Stanley Letter

Spring 2009

To my wonderful family & friends,

2009 stanleyHow are you? I hope you are doing well and everyone is happy and healthy. Since last May, a lot of big things have happened in my life. After a summer of long weekend getaways, I turned FIVE the end of August! I know that might not sound big to you, but for a five year old (and my Mommy & Daddy), it sure is a big deal! I also started Pre-K, part-time, in the Country near Mama & Papa’s house. What a difference going to school in the country than the city. I now get driven to school as opposed to walking up the street, and our ‘park’ at school- it’s just for my classmates, not the whole city! I’ve learned though that even when surroundings change, people are still friendly, loving and fun. I’ve met a lot of really great country friends, and luckily still get to see my city friends too.

In the Fall, a bunch of us city kids went Upstate NY and had a big 2 day country sleepover. It was so much fun fishing, running on trails and sleeping in bunk beds with my baby! She still allows me to call her that- but now she makes a point telling me- “Big Bro, that is my NICKname”. She really makes me laugh. We’re having so much fun together and love traveling all around. Being in the City and Country gives us the best of both worlds!

Luckily, we’ve been able to get out of the cold and take a few winter trips down to Florida. No matter how many times though we go through the airport, the xray man always stops us to inspect my workout machine & vest. It’s so important to take it with us everywhere we go. My vest, which I call my workout, really does wonders for me. When I wear it, all the goo in my lungs get shaken up and makes me breathe better. Amazing! Sometimes it does get frustrating for me cause I’d rather be playing outside than tied to my machine. But thank goodness for Baby though cause she always sits next to me and plays while I workout.

I must say, this winter I’ve been sick the least. Last year, I felt as if I was always on antibiotics and I had a lot more therapies to do. This year, I’ve only had to take antibiotics three times so far. Unfortunately I did get another lung infection over the holidays. Again we decided to skip the ‘2 week tune up’ in the hospital and did treatment in our Miami home. Lots of meds, workouts and salty ocean water! Luckily- it worked! Thank goodness, I’ve been pretty strong since.

My everyday routine hasn’t changed much. I still wake up real early by the sound of my Baby’s voice. This time she’s not gabbing, but speaking- and loudly! “Big Bro, it’s wake up time…”. We run down to Mommy & Daddy’s room, I do my morning workout & therapy and get ready for school or a ride to/from the City. Throughout my day I try to do a lot of physical activities. The more I run, the more my lungs will clear. I still of course take my ‘sauce’ (enzymes) with everything I eat. If I don’t take my sauce I’d get a really bad bellyache and probably be half my size! My sauce helps me absorb my food and minerals and makes me grow.

The other really important part of my routine is ‘staying away from germs’! I always need to be extremely cautious of where they are and who’s carrying them. Picking up germs for my body is really bad and can put me in the hospital. So it’s always important I wash my hands, play only with healthy friends, and limit myself by not going to real ‘germy’ environments. Basically, no matter what my day consists of, I always have to do my workout, take my sauce and stay away from germs.

Yes there are challenges with CF, but there are also some really good things. Like our NYC Great Strides walk! So many friends & family come out to support me and our cousin Sal. It’s always so positively overwhelming. I also get to do a lot of special things and meet really amazing people. In March, I got to see my good friend Lonnie Quinn from CBS and film a PSA with Boomer Esiason. For the shoot, I had to say two words, CURE FOUND. I don’t think I’ll ever forget it, nor will Mommy & Daddy. And Baby too. She’s still running through the house saying, “CURE FOUND, CURE FOUND, CURE FOUND”.

I think I’m starting to understand more about CF. All the support I receive and the things I do for the walk really help me grasp it better. Thank you. Thank you for helping me and being apart of that ‘understanding’ with me. I know we’ll all get through this… together…

I love you and hope to see your smiling face soon…

Big hugs and many kisses,

stanley

Stanley Richard from NYC (and Skylar-Rose too!)