Who Says We're Too Old to Play with Puppets?

Another CF Education day in Des Moines, Iowa came and went and another year with a fabulous guest speaker! Josh Mogren of Welcome to Joshland had the crowd's full attention. He brought his buddy, Moganko too!

Talk about hearing a man speak from his heart. Josh is someone who will tell it like it is and if it happens to be something you may not like, he'll let you know up front that it may be something you don't like and that he means no disrespect.

RESPECT, that actually should be Josh's middle name.

Josh will respectfully let you know what he likes and dislikes. He will respectfully tell you about his parents -- their ups and downs -- and with a heavy heart respectfully tell you how he honors and remembers his sister Angie who died from CF complications at the tender age of 16. He respectfully broached on the new 6 foot rule infectious control policy and honored it that day, and we honored it as well. But that hasn't always been the case...

You see, Andrea was so looking forward to going to our CF Ed day to see and hear Josh. But because of the new CFF guidelines Andrea was asked not to attend. Boy was she not happy about that. We actually were headed to Minnesota the week the new policy guidelines were released and what did we do? We met with Josh while we were in his home State and had lunch together. I brought a tape measure to make sure they sat 6 feet apart, but it fell short by 1-foot. Oh well, as Andrea put it…YOLO!

Shhh! Don't tell anyone they sat only 5 feet away from each other. :)

So what did we do come conference day? Well, we couldn't break the rule so we improvised. I brought my iPad to the conference and Skyped Andrea so she could see/hear Josh that way and it worked out perfectly.

Andrea is clapping after listening to Josh sing a CF tune. 

Where there's a will, there's a way and we made sure Andrea got to hear Josh despite the new CF guidelines. She learned a lot. While Josh spoke Andrea would text me me things like, "I can relate to a lot of things." She even asked him a question, which he respectfully answered. It was a great way to have my CFer "there" to listen and learn from another CFer.

If you're a parent with a child that has CF and your CF clinic center offers family education days, I urge you to recommend Josh to be a guest speaker. Trust me, you will not be disappointed!

Later that same evening, Josh and I were able to hang out. We hoped more CF parents would join us, but alas it was just him and I and we had a blast. I took him to a karaoke lounge and was entertained by his amazing singing. I personally wimped out and did not sing!

The most awesome thing about Josh is his beautiful, kind heart. Even Andrea told me, "Josh really loves us CF kids." I reassured her that she was absolutely correct! I'm honored to call him my friend!

Love ya Joshy! :)

Feelings

I'm sad today...

A tad emotional...

Shedding some tears of joy...

Feeling a little self pity...

I don't like feeling self pity!

I've mentioned this in other blogs...I blog to save me money on visiting a therapist.

So, why am I sad, emotional, tearful with joy and feeling self pity? Well, there's so much going on right now that is affecting me to feel this way. Let me get the sad one out of the way.

I unintentionally hurt a friend's feelings. She feels taken advantage of and used and although I did not set out to hurt her, her feelings were legit. I apologized profusely, but she has decided to not only not accept my apologies, she purposefully hurt me back by doing something I would ground my daughter if she did to one of her friends. The sad thing about all of this is I'm so worried about this friend. She has never in the 16 years we've been pals done anything like what she did. On the contrary, she has been a very loving, giving friend...so I'm sad that my forgetfulness and just plain stupidity has most likely ended this friendship. :'(

The emotional...

It's Great Strides season and I always get emotional during this time of year. It's a lot of work to fundraise on top of everything else that still needs to get done. It's an emotional roller coaster ride, as I get emotional over acquaintances, family and friends going out of their way to support us, support Andrea. They shower us with love by donating money, their time, their talent. It's just a feeling that puts me at awe; and although I know they're doing it because they want to and not for anything in return, I just feel like I could never repay them for their generosity.

I have some family health concerns going on that I can't help with because they are so far away. I always get very emotional when I can't assist my loved ones that have done so much for me over the years.

I scolded Andrea today for staying up way too late and not doing her morning treatments 100% as they should be done. This is the biggest emotional setter for me. I end up feeling guilty for scolding a kid—that in comparison to a lot of kids her age—she's doing a fabulous job in taking care of herself. AND I feel super guilty because I scold her about her health regimen while I'm not doing the best I can for myself. Look who's calling the kettle black. UGH!

Tears of joy...

Yesterday was a huge day in the CF world as Tommy Danger, a CF supporter extraordinaire, finished his goal of running across the USA in order to promote CF awareness via his More Than Just Miles campaign. This young man ran 3200 miles across 16 States, finishing yesterday by running 100 miles in 24 hours to reach the finish line in Daytona, FL. Some of my CF mama friends were there (insert jealous feelings here) and were kind to share photos and videos of the event. As I watched Tommy arrive at his final destination, I couldn't help but cry. I mean, come on...Tommy doesn't have a child with CF. His siblings don't have it, nor cousins, uncles or aunts. His best friends have a child who has CF and this is why he did this and...he's not done. He wants to raise ONE MILLION dollars by doing other extraordinary things over the next few years! He's doing this in honor of little Ethan and all CFers world wide and in memory of those beautiful angels we've lost along the way.

My sister is having a fundraiser today that I wanted so badly to be there for. It's a smaller type of event but it's being done with so much love and excitement. I talked with her just a bit ago while the party was going on and she sounded so happy. She set her Great Strides fundraising goal to $2,000 this year. I know how much work is entailed in fundraising, and she's a single mom! How could I not shed tears of joy over all she does for her "peanut"; aka Andrea. :)

Self pity...

For the past 14 months I've been dealing with foot pain on my right heel area. After months of seeing doctors and being diagnosed with several things, the main one being chronic plantar fasciitis, a third doctor discovered that I also had a stress fracture on the heel. I've worn a boot for 8 weeks, met with therapists, had treatments done with no alleviation, and now am on crutches and just finally starting to feel like I may be on the mend. Maybe. And the self pity has just recently set in and I hate it. I feel so nervy for feeling this way when others, like my daughter, endure their ailments everyday of the year, with minimal complaints. I'm working hard at ending this feeling. I have great days and not so great days.

So there you have it! My reasons for feeling how I've been feeling. I'm sure I could write more, but I won't. Some have actually heard me express some of these feelings out-loud and I thank you for listening and sharing your advice with me. I ultimately know I'm a strong person and will be fine because I'm surrounded by so much love; and nothing but great things can come when one is showered with love!

Get over it - there's too much love going around!