Rosebuds Superhero!

Elena was a CF superhero today as she recruited runners and team members for her upcoming Rosebuds jingle jog race on December 7th. She braved the rain at the big peach sizzler. She was adorable in her cape and mask!

She was visited by many friends including her awesome CF doc!

I'm a proud MaMa.

Want to join us on our mission?

Check out our super flyer:

Enter team "rosebuds" and use discount code "ROSES"! 

www.jinglejog.com

Registration will be open soon!

See you there superhero!

What cystic fibrosis has taught our family.

I have been thinking about this post for many months. I haven't been quite sure how to word it. However I've decided to quit mulling it over and just type from the heart. This is the result...keep in mind that we know we are not perfect superheroes, despite the picture below.

We are not in charge; God is. Remember that saying let go and let God? Yeah well, we only thought we were good at that until our first child Elena  was born. Then we realized we had a lot to learn. I felt like I aged 10 years the day of her birth. Not just in years but in knowledge and wisdom about life.

The Letter E is pretty cool for the obvious reasons like our children Elena, Ethan,  Emily,  and Everett. Or for ridiculously long Eyelashes. But also For Enzymes. Without them Elena  would not gain weight. Her tummy would constantly hurt.

Celebrate the little moments often.  Because you never know when things might change in your life permanently. This goes for everyone.

CF can change Elena's health in a heartbeat.  She can be healthy and playing one hour and in the next hour be admitted into the hospital. This is not a result of anyone failing to do the right thing. This is just life with cystic fibrosis.

Cystic fibrosis is an expensive disease to care for and treat. However, we would rather go without than have Elena  not get the medicine she needs. This is why it is important to support the Reaching Out foundation. This organization helps people that are struggling financially so their children will never go without meds. Elena's fundraising running team , rosebuds, supports that foundation as well as the CF foundation. She would love to have your support on this adventure!

Always assume the best when it comes to your family and friends' intentions, however when it comes to Elena's  health you can go ahead and assume the worst because it may be a reality. This may sound pessimistic but it also can save  Elena's life.

Laugh, and do it often! It helps take your mind off the reality of how very difficult your child's life is and will be with CF.  Find the positives in the bad. Go ahead, be a Pollyanna!

Pray and do it many many times during the day. Pray for the things you're thankful for, pray for the doctors and nurses and the researchers. Pray for your family and friends. Pray for the Siblings of those with CF, pray for the CF fundraising organizations, Pray for clarity on the toughest days, pray for peace when you're scared,  pray for a cure.

You must be organized and I mean really organized at all times. Juggling treatments, Meds, doctor visits, tests, homeschool, etc..you all know what I'm talking about. Everyone has their schedules and hassles to juggle. Your house may not look like the Container store or IKEA, or you may not sync calendars with your spouse yet, but strive to get there. Having things organized and clutter free helps make your brain feel clear. At least it works for us.

Others will not truly understand unless they have a child with CF. So, you don't want other people to understand ...ever... And you are sad when they do bc now they will have their own list of what cf has taught them.

Don't judge. You really don't know what people are going through. I have had so many people approach us and tell us that what we were feeding our daughter is unhealthy. I have had people approach me and tell me I was giving my daughter too many pills. Since the birth of Elena,  our family has had a different outlook on so many things. However, the one thing I have embraced is not passing judgment on anyone. This goes hand-in-hand with always assuming the best in people. What might look to you like a parent that doesn't care about their child's misbehavior could actually be a parent trying to help their child who is autistic.  What appears to be a quiet unfriendly person is actually someone who was just diagnosed with cancer. Don't judge but consistently show love. 

Surround yourself with friends that don't judge. They will be your life line when times are tough. These friends will understand when you can't call them all the time. These friends will understand when there's weeks of silence between the two of you.  These friends will understand when you have to cancel a visit at the last minute because of sickness.  These friends understand your good intentions even when the weight of cystic fibrosis has worn you down. These friends will always be there for you and you for them. Your energy is precious and should be reserved for your family and friends that love you, not wasted on trying to explain yourself. Show those that judge you love by taking the time to be courteous, but move on. 

Keep your home and your heart open to new friends. You never know what new and exciting people you are going to meet. I have met so many wonderful people within the cystic fibrosis support community. So many of them are friends for life.

Show respect to your parents and your grandparents. You are who you are because of them. The good and the bad times have made you who you are.  Be thankful for that and show them your appreciation as often as you see them.  Life is too short to hold grudges.  Replace the grudges with lots of grins!

  

Family, Family, Family...help them, love them, support them because they need you as much as you need them.

The flu, viruses, RSV, asthma attacks, none of these seem like a real big deal anymore when we're dealing with the non CF kids health. CF put things into perspective. Yes, These things could be scary, but nothing gets to you anymore. Other health concerns don't seem nearly as big a deal as they would if we didn't deal with CF daily.

Cystic fibrosis does not define our family, but it has helped us grow, learn, and love with a ferociousness that we are most thankful for.

You already learned these things due to your own life circumstances? Super- fantastic! Build your list! Look at where you are and look back at where you came from. What a road it is to get there! Now look around you. Are you surrounded by family and friends that support you? Go give them hugs or send them notes and tell them you are super thankful for them. Tell them how outstanding they are.  Squeeze your kids right now. Tell your spouse/ significant other how amazing they are and how much you appreciate their support and love. 

I wish I could say that I have mastered the lessons listed above, but I'm a work in progress. I'm sure I'll think of more lessons  later, but that's because we will continue to learn and grow. Thank goodness for that! Until then, we will continue to fight CF for Elena and our friends with CF.

Ready , set....FIGHT!

What have I learned? I love my family and  I love my friends just the way they are. I love my life just the way it is. Thank you cystic fibrosis.

Best everrrrr....

Best doctor visit ever! Her lung function is the highest it's been in one and a half years. :-)

This calls for a giant slushy at QT!

Thank you CFLF for a Recreation Grant for Elena!

Elena won a grant to participate in an exercise/strength building program geared towards kids her age at Body Plex.  She submitted her request to an organization called Cystic Fibrosis Lifestyle Foundation. They give people with CF grants to participate in classes/groups/events that will help improve their quality of life.  Elena was told that she MUST fill out the paperwork herself.  We are so happy for Elena that through hard work and dedication she earned her grant by writing the essay below.

My name is Elena. l'm nine years old. I have CF. Having CF is hard. I
have to say, the hardest thing about having CF is doing my vest and
nebulizer. My vest shakes to shake up the mucus in my lungs so it will
get loose and move out. My nebulizer is a breathing machine that helps
me get medicine in my lungs. This may sound like your normal just
taking a pill" but it actually takes a long time. I have to do it for 30
minutes every morning and night. This can really affect my schedule. lt
sometimes makes me go to bed late and makes us late for things in the
morning. I don't like that because we are always rushing to things and
then we are really tired the next morning.
Even though I don't like doing this stuff, I know it will help me be
healthier. Since I know this, I try to do my treatments really good
because I don't want to get sick and lay in my bed all day. I would
rather be outside playing with my siblings. I also wouldn't be able to go
to Summit Academy. That is a school for homeschooled kids. That is
where I do karate class, one of my favorite sports.
Because of what I am saying here, you can see that I like to exercise and
I DO. That is why I want to get the money so I can be in a weight
training class at my mother's gym that she goes to. I always ask her if
there are any classes that I can go to there. This is a really good chance
that I CAN be in one of their classes which can help me be healthier and
gain more weight (hopefully muscle weight). Even though I have to
take all this medicine and do all these treatments, I can still be kind of
like a normal kid. I can play with my other friends and read books at my
grade level and play with regular toys. Having CF is hard, but I get use
to taking all the medicine. This essay can tell you that I REALLY do want
to be in this weight training class.

Love Elena Goodrow

Wa-hoo Elena!!!! Now, let's go knock out Cystic Fibrosis...and some punching bags!

Elena in her first training class!

Knock out!

The boys really enjoyed watching her. Ethan kept saying "mom, she is doing great!"

Healthy, Happy, and on her way....

Since Elena was able to talk (at two in complete sentences) she has said that she wanted to be on TV.  Her desire and drive have not changed except that they have increased!  Now, she will let you know that she intends to be famous.  Her work with CF organizations are proof to her fulfilling her desires.  She takes on CF related projects and speeches and nails them every time.

On Thursday of last week she had lunch with Joy Pervis, the owner of the talent agency JPervis Talent.  Elena met Joy Pervis at the Wine and Roses Gala the night Elena was the guest speaker.  Elena made a silent bid on Joy's "Lunch with a talent Agent" package.  After hearing Elena speak, Joy decided that Elena would be visiting her agency regardless of winning the package!:) However, Elena's PaPa helped her win that package and she was counting down the days to meet with Joy again!

Joel, PaPa, Elena, and myself enjoyed a nice lunch at Figo with Joy.  It was full of plenty of conversation led by Joy and filled with Elena's enthusiasm.  Joel and I continue to be amazed her social skills and ease with any conversation with any person.  After lunch, we ventured back to Joy's office and got a tour of where she works her magic.  We met the staff, learned about people like Elena that are now in the movies, and then Elena did a short audition on camera for other staff to review.

The moment of real fun and excitement was when Elena was given a signed, framed photo of Blake Michael from Disney's "Dog with a Blog" show.  

She was about to talk with him on the phone to say thank you, but he was on set filming.  So we sent him a card instead.  She was hanging it on her wall within seconds of returning home.

The day ended with Joy suggesting we start marketing her so she can start having auditions.  She will start small with commercials and see how it can grow from there if she likes it.  Elena was unsure of what this meant.  So, once we were in the car on the way home she asked, "So, does this mean I can be an actress?  Did Joy say, 'Yes'?"

We shall see where this takes her.  Blake Michael told her to follow her dream.  Being famous and on TV is her dream.  I think this kid might do just that!

CF Superheroes take on Great Strides!

This Saturday at 9:30, our team brought to you by the letter E will be soaring in our super capes as we take on Cystic Fibrosis at the Great Strides walk on Georgia Tech's campus.  If you can, bring your side kick, put on your super gear and join us!  If your side kick is busy, or your bat mobile broke down, you can always donate towards the cause.
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8317&idUser=76056

Our CF Superhero may look super on the outside, but check out the picture below to see what CF does to her insides.  YOU can help us make a difference!  CF will NOT be a kryptonite to our family!

AMAZING!

Amazing is the word heard over and over again about Elena and her Bid for a Cure speech at the Wine and Rose Cystic Fibrosis Fundraiser dinner.  I've never seen so many hands fly in the air to write checks towards the cause. 

Elena spoke in front of a 300 plus crowd with such ease, grace, and poise.  She has big plans to kick CF in the behind and get her face out there to be famous.  If I had any doubts (which I didn't) last night would have sealed the "she's gonna be famous" deal!

Amazing? YES!  and then some!!!!