Cystic Fibrosis, 65_RedRoses, and what you can do TODAY to help!

36 years ago, give or take a few months, there was a Respiratory therapist and a young man who volunteered at Cystic Fibrosis Camp. For those of you not familiar with Cystic Fibrosis here is some information:

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Statistics:

  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the late 30s.

While at that camp they grew close with many of the children and got to know each other.  They allowed themselves to form relationship with these young children, they wanted the children to have a wonderful camp experience, they wanted them to feel like “normal children”, to help them enjoy what little time they had left on this planet. All the while knowing that the bonds they would form would be short lived and their hearts would break deeply when they received the news that a child had died.  It had to take a lot to be willing to volunteer for such an amazing opportunity and yet heart wrenching one at the same time. The Respiratory therapist and the young man who volunteer at Cystic Fibrosis camp are my parents.  They met while volunteering at camp and would eventually marry and have 3 children of their own.  

Over the years I have heard stories about the children my parents had the pleasure of meeting at Cystic Fibrosis camp. I think I had forgotten that it wasn’t just what my parents contributed to the camp but it was also what they learned, shared, and witnessed.  Those children in a way live on today because of the memories my parents share.  My mother always speaks so fondly of two young sisters, 5 and 7, with big brown eyes, who were just the sweetest, gentlest, little angels.  They enjoyed everything an average little girl would enjoy, playing dolls, swimming, riding bikes, etc.  But their little bodies did not always agree with their little spirits.  They would be in and out of medical care, experience horrible coughing fits, vomiting, etc.

She has also shared the fact that Cystic Fibrosis can hit an entire family which is what happened to one such family, all four of their children had Cystic Fibrosis and yes, all four died at a young age.  As a Mother now myself I could not even image the amount of strength it must take to know that all four of your children will not live past their 20s.  The amount of strength it must take to live every day to the fullest because you never know if it will be their last. The amount of strength it must take to bury a child and know that you will be doing this again, very, very, soon. 

I was reminded of the courage and strength that those diagnosed with Cystic Fibrosis have and the strength their parents and loved ones maintain because they LOVE when I viewed the movie 65_RedRoses.

It also helped to watch Ava’s story and to understand that Cystic Fibrosis is not who she is, she is more that Cystic Fibrosis. Here is a clip that really helps explain 65_RedRoses.

 

 

After viewing 65_RedRoses I also double checked to make certain that I am an organ donor.  To know that if something did happened to me that parts of me might go on and make someone’s else’s life that much more fulfilling is a gift unlike any other.

May is CF Awareness Month

What You Can Do??

During the month of May, you can:

  • Walk in Great Strides. More than 100,000 walkers will put their best foot forward this year at more than 600 sites nationwide. Register today.
  • Be an Advocate for People with Cystic Fibrosis.
    • There are many federal and state issues that affect people with CF. You can help get our collective voice heard by contacting your elected representatives. Check out our “Take Action” advocacy page to read about the issues and learn how you can help.
  •  Download the “Cure CF” iPhone App. Use it to educate potential new volunteers and donors about the mission of the CF Foundation. Download it for free from the iTunes App store.

Flutter Your Worries Away at The Butterfly House

The first day of May brings about much anticipation and excitement for many impending events.   Big events such as, the culmination of the school year, the joys that will precede summer break, graduation celebrations, the excitement of Mother’s Day, and last but not least, Opening day of The Butterfly House!

The Butterfly House is located in Whitehouse Ohio, just a short drive from Toledo and it is by far one of the most relaxing outings/field trips I have ever had the pleasure of sharing with my children.  The first time we visited the butterfly house our eldest was 3 years old and infatuated with butterflies. In fact, her room is adorning with pink butterflies.  She practically lost her mind when we entered the magnificent space where she was greeted by gorgeous Morpho Peleides, Papilio palinurus, the classic, all-time favorite Monarch, and many many more gorgeous butterflies fluttering all around.  

The experience is amplified by the fact that while walking around viewing the gorgeous butterflies in such an idyllic environment classical musical plays in the background.  The combination of fluttering butterflies, the water trickling in the small pond, the amazing foliage all around, and the classical music embodies you and bring about one of the most relaxing experiences.  When I leave The Butterfly House I leave with the same relaxing mindset that is only equal to a Spa experience but for much less.

I had been counting down the days to our visit, so desperate for the relaxing feeling that encompasses you after the visit.  May seems to be one of the craziest months with school activities, after school activities, rehearsals for recitals, recitals, weddings, showers, Mother’s Day, etc.  I could feel the stress mounting and I knew that The Butterfly House was just the thing to help me relieve the mounting pressure piling up from the multitude of responsibilities and obligations.  And it did!

We so enjoyed our visit, we went with our Playgroup and the young children seemed to enjoy themselves as well as the parents. Our preschooler really enjoyed watching the butterflies eat and noted the Proboscis and how it looked like the butterfly had a cool straw that sucked up the banana. He also enjoyed seeing the pupa (chrysalis). The butterfly house has a window where children can watch the butterflies emerge from the chrysalis. It was a wonderful learning experience for our preschooler and toddler. We can’t wait to go back with big sister once school is out. The Butterfly House also has a beautiful space for picnicking after your visit, the scenery, breeze, and environment are unsurpassable.

 

Are you fascinated with butterflies? Do you have favorite butterfly?  Have you been to a Butterfly House near your home or perhaps the one in Whitehouse?

Mission impossible: To raise confident kids in a superficial and over-sexed society?

Being a mother of two girls my heart ached the other day when I witnessed a young adolescent girl walking down the street with short shorts, a halter top, and high heel shoes.  I wanted to yell out the window, “Honey, you are worth so much more than that”.  So this instantly got me thinking, who was this girl’s role model? Who influenced her decisions? Shoot, who influenced her wardrobe?  My conclusion was four-fold; perhaps her mother or female guardian, her peers, fashion industry, and/or the social media had something to do with her wardrobe selection that morning?  

Female role models:

A female role model could be a mother, sister, cousin, aunt, close family friend etc. It got me thinking about my own daughters and who their female role model might be once they reach adolescents. Then it occurred to me that what they witness today can even have an impact on how they mold their future self-image and behavior.  So I took a good hard look at some of the female role models that girls have to look up to today, number one being their own mothers. (Don’t get me wrong fathers play a vital role too! First and foremost they need to be present and they need to live a lifestyle that doesn’t encourage daughters to have low self-esteem.  It doesn’t help when dads are looking at magazines, watching, or frequenting establishments that encourage a sex sells innuendo. But more on that later.) Surprisingly this concerned me, it had me thinking about current posts on facebook, conversations with other moms, and cyber media. What did these all have in common, a strong self-deprivation agenda! Many moms are complaining about their weight, their thighs, cellulite, etc. and how unhappy they are, if only they could fit into their skinny jeans then life would be great! What messages are we sending to our daughters, to our sons? Are we saying that your worth is in some way directly measured by your pant, bathing suite, or dress size? Perhaps if we, as moms, focused just as much energy on the positive attributes as we do complaining about the flaws we could be that positive self-worth image that our young adolescents so desperately need to prescribe to?

Peers:

This one scares the crap out of me!! Because while you can encourage and influence friendships when your children are young as they grow older you slowly lose this ability.  They enter middle school, high school, get their first job, and suddenly they are introduced to a broad spectrum of individuals whom you will have no say in whether or not a friendship should be fostered. What if your daughter makes friends with the daughter of the mother who has been religiously bantering about her physical attributes for years and now her daughter thinks she is only valued by her appearance? But how does that young girl know if her appearance is valued? Well by the amount of attention she receives from the boys of course.  All that attention more than likely will lead to synthetic power; she has something all the boys want. Then, one day a young boy will say all the right things, all the things she had been yearning to hear for years, synthetic of course, and they give into the most animalistic behaviors. She will then lose her power and synthetic love so she will start the vicious cycle all over again, pushing the envelope further each time.  And your daughter bared witness to the entire fiasco. But, what will she think? Will she think she needs to dress reprehensible in order to get all the boys attention?

Fashion Industry:

My daughter is age 6 and currently wears a size 8.  I am 5’-9” and my hubby is 6’-6”, she is going to be a tall young lady. Unfortunately since she wears a size 8 it seems like the fashion industry feels as though she should be dressing as a pre-teen. I have had such a difficult time finding appropriate clothing for her. Shorts and skirts that cover her bum when she bends over and shirts that cover her mid-drift are difficult to come by. What gives? Why are children being exposed to an adult fashion industry when it comes to the styles that are available? Thankfully there is a strong dress code in the school district we reside in and all the children dress for success. But outside of school is another story.

It is obvious that stores are just trying to sell sex and at a young age. Just take Abercrombie & Fitch, what are they selling in the following ad….

 

Shoot, this advertisement doesn’t even have the model wearing ANY clothes!! So, what are they selling??

 

Media:

It seems like our youth are slowly becoming numb to the idea that something is too racy or scandalous to wear.  The skinnier, shorter, and sexier the better seem to be the motto society is feeding our young ladies. I know this is getting lengthy and I could go on for day so I will keep this short. Here are two quick examples of what pre-teens and teens are viewing these days.

J.Lo, you know the mother of young twins, singer and one of the judges for America Idol, the show pre- teens and teens watch in hopes of one day making it big themselves.  She has a new song and video out…..

 

And then there is this show that I found to be uncomfortable for me, a 30 something woman to watch.  I could not image my teenage daughter watching it.

 

We live in a society that doesn’t value or respect the female form; it is more like a meal ticket. Sex sells and until consumers stop buying, it will keep on selling and further assisting in the degradation of adolescent girls self-image.

So, as Gandi said, “be the change you want to see in the world”. Before you utter a self-degrading comment about yourself think about how it might affect those around you.  When purchasing clothing for your children look for age appropriate pieces that will help build their confidence from the inside. Lastly, and this one is tricky because children have so many means of viewing media, try to monitor what your child views or at least be present in the media so you know what type of conversations to initiate. Growing up televisions were not allowed in bedrooms and the computer was in a community space for all to view, I like those rules.

What are the rules in your home? How do you deal with outside influences? Have you experienced any clothing dilemmas? As I stated I have two young daughters, I am really interested in hearing other moms advice.

 

Happy Mother’s Day

Happy Mother’s Day Moms!!

Here is something beautiful I wanted to share with each of you on this special day.

The moment that changed my life!

 

First time Mommy amazed at the beautiful blessing that is her baby girl.

 

A baby asked God, “They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless? “

 God said, “Your angel will be waiting for you and will take care of you.”

 The child further inquired, “But tell me, here in heaven I don’t have to do anything but sing and smile to be happy.”

 God said, “Your angel will sing for you and will also smile for you. And you will feel your angel’s love and be very happy.”

 Again the child asked, “And how am I going to be able to understand when people talk to me if I don’t know the language?”

 God said, “Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”

 “And what am I going to do when I want to talk to you?”

 God said, “Your angel will place your hands together and will teach you how to pray.” “Who will protect me?”

 God said, “Your angel will defend you even if it means risking its life.”

 “But I will always be sad because I will not see you anymore.”

 God said, “Your angel will always talk to you about Me and will teach

you the way to come back to Me, even though I will always be next to you.”

 At that moment there was much peace in Heaven, but voices from Earth

could be heard and the child hurriedly asked, “God, if I am to leave

now, please tell me my angel’s name.” God said, “You will simply call her, “MOM”

What I Bought myself for Mother’s Day, 2 Apps every Super Mom MUST Have, and a Special Shout Out to YOU!

Okay, so I fell in love with this mug the moment I walked into Caribou the other day, I just had to have it. So, I did what any Super mom would do, I bought it for myself because if past experience has taught me anything it is that you sometimes need to purchase your own Mother’s Day gift. Please, don’t get me wrong, my eyes fill with tear the moment my children hand me those delicate imprints of their hands and I read those heart wrenching poems that coincide. You know the ones; the ones that make you want to come up with some secret potion to keep them small forever. Why must they grow, and why so fast?? And of course my hubby, God bless his soul, he does try to makes an effort to give me a Mother’s Day gift from the heart, kind of.  But if I have to fake a smile for one more gosh darn last-minute, convenience purchased, cheap, carcinogen based candle I might lose it! Seriously, I am not sure if he is aware of this or not but he has given me the same candle 3 years in a row, I have the proof.

 

So, long story short, instead of doing a woe is me pity party later, after the Mother’s day festivities I decided to purchase the mug for myself. This way I am guaranteed a smile Mother’s Day as I sip on my coffee from my new mug.  Despite what gifts and appreciation may, or may not be expressed on Mother’s Day I am already guaranteed a great day because my mug says I am a SUPER MOM!!

The mug got me thinking though, what does every SUPER MOM need in order to be, well, SUPER? Faith, patience, kindness, a sense of humor, love, tolerance, integrity, faith, a positive disposition, a sense of humor, fortitude, a sense of humor!! If you can’t tell, I think faith and a sense of humor need to be emphasized; you can’t take life or raising children too seriously and sometimes you will have those days when you only get by on a prayer. SUPER MOMs also need super support networks. A supportive family, friends, neighbors, etc. are a must otherwise you lose your mind and the SUPER. Then I started thinking about some of the more modern-day gizmos like technology, iPads, iPhones, etc. and the ways they support and encouraged the SUPER status. There are two must have apps that instantly came to mind.

 

Gube, it is wonderful, a true life saver in desperate moments.  You know those days when you are at your wit’s end and you feel like throwing in the towel but you still have 2 more errands on your list?  Well, Gube is the answer. Gube is an app that provides kid safe videos. Parent’s there is no need to worry about your toddler or preschooler stumbling across a provocative video on their search for Elmo or Yo gabba gabba. Gube provides parents with a catalog of pre-screened, moderated, and safe, yet fun, YouTube videos. Designed and developed by parents of toddlers for parents with young children. Paired with the BubCap (www.bubcap.com) home button cover, it turns your iPhone or iPad into a great learning and entertainment device!

Best part, as a special Happy Mother’s Day Gube is $0.99!! It is normally $3.99 but starting Friday May 11th– Sunday May 13th  it is $0.99, so be sure to get your app Friday! Moms this is a great gift to give yourself for mother’s day, trust me, you will thank yourself the next time you are waiting in the Doctor’s office, waiting in line at the grocery store,  going on vacation, or stuck in road construction (construction season is just around the corner).

 

The second app that is a must for a SUPER MOM is Rescuehood.  As many of you know I experienced a Scary Mommy Moment this spring while enjoying what was supposed to be a fun-filled memorable day at the zoo with my children and friends, but quickly became a nightmare.  As I express in Scary Mommy Moment: You can’t Find your Child!, there is panic and pure adrenaline that takes over your body when you can’t locate your child. It is a feeling that no mom, parent, or guardian should have to feel or experience. But if they do have the misfortune of experiencing this scenario Rescuehood is the ally you want on your side!

Rescuehood would instantly alert everyone in the area that a child is at risk, so a mass of people can mobilize into action and rescue the child fast. Rescuehood is an emergency broadcast social network however in order for it to work the technology needs to be on EVERY mobile phone in the world to help save children from harm. The founders are building awareness parent by parent, community by community.

Rescuehood is a must for every SUPER MOM and for that SUPER MOM’s support network. This app is FREE; please share with all you come in contact with today.

Now it is your turn to share, what helps you be the SUPER MOM you are? Do you have a support network, technological allies, or some other means for getting through parenthood, please share?

Lastly, I would like to take a second to give a special shout out to all the amazing Mom bloggers, followers, and friends, you rock!! You are all a part of my social support system, it is nice to read other moms banters and blessings, to know that I am not alone, that there are others who have experienced the same is comforting. To all the SUPER MOMS out there I hope you have a Happy Mother’s Day and God blesses all your efforts.

Added Bonus: The Ten Super Powers of Moms

This is pretty interesting, I just had to share. Take a moment to check out the top ten, their blogs, and accomplishments, talk about amazing. I have no doubt that a few of the mommy blogs I follow will be on the list in the future. Mommy Blogs Rock!!

Go Girl Blog

Nice infographic about the continual rise of the ‘Mommy Blogger’ (via  http://mashable.com/2012/05/08/mommy-blogger-infographic/#)  Are you surprised by any of the stats?

 

 

 

 

View original post