CF Walk

Well the CF walk was a success!!  Most of you probably do not know that I am the chair of our local walk.  The CF Foundation caught wind of my determination to cure CF and contacted me last year.  I had a lot of help from the foundation but also did a lot.  So I was happy when it was over and done with.

We had a lot of fun this year...

Ethan led the walk...

He is so happy in this picture... Almost like he knows all 70+ people on team Clem Clan where there to support him because they love him.  I also cant help but think.. he is so naive to the harsh realities of CF. We were walking so hopefully he will never see that but I still think about it.  I love my little boy so much and fight so hard for him.

I have said it before and ill say it again.. we are so blessed by an amazing support group!!!  So many people showed up.  We had about half the walkers at the south bend walk on our team.  Clem Clan also raised nearly $9000.   We will for sure be over $10,000 once we have out Cruise for Cystic Fibrosis on June 3rd, which is almost sold out!!!  South Bend had over $20,300!!

Here is a group shot... we have an awesome/good looking group dont we!?

Thank you to everyone who came out!!!  

Special guest star!!   Swoop!

This time of year

This time of year is very overwhelming for me... for several reasons... One I am in the process of taking over running the local great strides walk with the guidance of the foundation... Next year its all me.. So this year I am learning everything that needs done on walk day..  Also this year I had the idea to do a "Cruise for Cystic Fibrosis" on the lake I grew up on.  We will be cruising in the evening with food, soda and beer all to a dj.  We have been busy rounding up raffle prizes and getting everything organized.   I am very excited about both, however, there is a lot to do!

Mainly this time of year is overwhelming for me because its a constant reminder of what we deal with daily.  Most of my facebook friends are CF patients or parents..  I am constantly bombarded with sad statistics, videos and pictures.  Its a constant reminder that Ethan will struggle with CF and we have rough roads a head one day.  Yes I am thrilled by the support and love that is outpoured for us and Ethan... but some days, this time of year, are hard.

april 27th, 2009

Everyone dreams of having their first child… What that child will be like.. What their hopes and dreams are for that child.. What they will do in sports, school.. What kind of person they will turn out to be…

When we found out we were pregnant with Ethan we were BEYOND excited.  We had been trying for 9 months to get pregnant.  We found out when I was 20 weeks pregnant that it was going to be a boy.  Sean and I were both HUGE into sports and we were so excited to possibly have a little athlete on our hands.  The big day came and Ethan arrived.. He was so tiny and beautiful.  Labor went well and I recovered very well.  We took him home and just enjoyed him.  We had some rough nights but who doesn’t with a new baby….We thought we had this “healthy” little boy.  Life was good.

Ill never forget the day…April 27^th…. We had just taken him to get his newborn pictures done and on our first outing as a family to pizza hut for lunch. It was so much fun.  The next stop on our trip was his 2 week check up.  The doctor came in and was looking him over and asking strange questions like “has he been coughing a lot?” etc…After he was done examining him he said “Well Ethan’s newborn screening came back showing two mutations for Cystic Fibrosis”.  Those words changed our world in an instant!  I instantly burst into tears as I knew what Cystic Fibrosis was.  Sean on the other hand had no idea.  A million thoughts instantly went through my head… He will only live to be 20ish, he will never play sports, he will be in and out of the hospital, he was have a sickely life.. You name it I thought it.  We learned later they weren’t true.

I hate CF… with a passion.  Currently the life expectancy is 37.  How would you like to hear that your son might not live into his 20’s?  That he will most likely have lots of health issues and face a possible lung transplant?  How would you like to see your son constantly being poked with needles for blood draws, being held down while he is screaming for this?  Witnessing what Ethan goes through breaks my heart… No, it SHATTERS my heart.  No child should have to be shaken in a vest for over an hour min a day… How do you tell a toddler.. I am sorry you can’t have that snack because you haven’t had enzymes…

I have learned how extremely blessed I am by an amazing support system..  I have friends from childhood stepping up, donating, raising money.. I have new friends who jumped right in and are doing the same.  No donation is too small, especially when it’s helping to save my son’s life.

Please click the link on my facebook page to donate today.