Saturday, May 4, 2013

A Month Full Of Thankfulness & Gratefulness - April

Every month, I will be challenging myself to create a post of what I am thankful and grateful for in life. This will allow me to reflect on all the POSITIVE that is happening in my life. As we all know you get nowhere when you focus on the negatives in life.

  • I have moments in my life where I step back and think about how lucky I am to have what I have in my life. Here is why…………… I have a loving wife who would do anything for me and for our family.  There is nothing in life like knowing you have that person in life who is your biggest cheerleader in everything you do. LOVE YOU Maria!!  WE have a miracle daughter and when I think back upon our pregnancy journey I wouldn’t change it for second.  I know Maria I would have loved for you to not have gone through every thing that you have in these past 2 years but I think it has made us stronger in every single way!  Not only has it made us a stronger couple, it has also given so many other people hope in creating their own family.  I am so thankful I decided to share this journey with all of you.  I have found a new passion in my life that I never knew existed by going through our pregnancy journey.  Infertility, is a true nightmare in fact a living nightmare.  For anyone who is struggling with this process WE can understand as we were in that boat.  But I would like to say NEVER GIVE UP on your dream of a family. 

  • This bullet is for you mom and dad.  I am so thankful for having some of the most loving parents I could ever ask for.  I have come to find out recently that some individuals in my community may not have had that opportunity when it comes to the CF lifestyle that I have had and it truly is not fair! Thank you for always standing there by my side in dealing with my CF. I still remember that day and the first year that I was diagnosed with CF. It was shocking to you both but you never put it on the backburner at all. You accepted that your son had an illness and you both were determined to make my health a priority.  Dad, I can remember how determined you were to find the best doctor when I was first diagnosed. Dad, I can never thank you enough for finding me the best doctor out there and the doctor who understands me like he is part of our family.  Do you remember this dad….When we didn’t have the Vest you thought that I should wear a vibrating back massager on my chest to break up the mucus?  I can remember you calling the Homedics makers and writing them letters to see if this was being done in the CF world.  Maybe you should have been a researcher!  Mom thanks for always going to the CF appointments with me. You always till this day make it a priority to come with me to clinic even at this age when I can go alone.  (Yes, I have an entourage when I go to CF clinic….usually Maria and my mom both go. What a great support system you all are!).  Most of all mom and dad you never ever told me that I could not accomplish my dreams.  I am so thankful to have an AWESOME support system when it comes to my CF! I can never thank you enough!
  • Alayna celebrated her 6 month birthday in the month of April.  She is continuing to grow and change in front of our eyes.  I want to press the pause button sometimes just to slow things down.  Time is going by so fast.  Before we know it she will be walking across the floor and eating dinner at the table with us.  Here is Alayna's 6 month post.

  • I was very pleased to find that Kalydeco the magical pill may benefit me specifically my gene mutation.  It has yet to be approved for any other mutation except G551D but it looks vey promising that Kalydeco will benefit a few other residual function mutations.  I am in that boat and I will be following the research study to see what comes out of this.  I cannot wait to hear what the results are in September. Here is the Kalydeco link.  I will continue with part 2 soon!!

  • I am thankful that my fibro Jeremy and his wife Monica have had two healthy twin boys in April. They went through IVF just as Maria and I did and I am so happy everything worked out for them.  The twin boys are beyond adorable and I love seeing pictures of them.  Even though I do not know Jeremy or Monica on a personal level I know these two boys were born into one AWEOME family.  Congrats to the both of you! If you would like to read about Jeremy and Monica's experience take a visit to their blog and you can see all the pictures of their adorable twin boys.
  • I have found in life that there really are a good amount of people who care about me from immediate family, to my aunts uncles, in laws, friends, the list goes on.  But I was really taken away when a good friend of mine whose mom passed away recently.  He asked me for the address of Cystic Fibrosis Foundation and where checks should be made payable as he wants to put this in her obituary. He wanted to put this in the obituary in lieu of flowers.  His mom has no connection to the CF Foundation what so ever!  I am so thankful that I have people in my life who care so much about me and want to see a cure for me and everyone else! Thanks for your friendship Tom!!

  • Well winter is officially over and I made it through winter with no colds and no flu! Woo hoo to that! I am honestly shocked by this because I work in an environment where everyone sits very close and people were sick numerous times.  I guess these CF vitamins helped keep those bugs away.   But I am knocking on wood (my brain) as I say this because I do not want any sickness.  
  •  I am thankful that the weather is finally getting warmer.  This will make me get my butt outside more to take walks with the family.  I need more exercise in my life. 

  • As a lot of us know May is CF awareness month.  During this month I plan to write a blog about how I spread some awareness about CF lately.  I am thankful that there is a month dedicated to CF but the thing is it is up to us to spread the word!!
  • April has been another month of 100% compliance for me, Woo hoo!!! Since starting this monthly thankfulness back in February I have not missed a single airway treatment.  I have had 3 full months of tracked airway clearance and I have been 100% compliant!  This even includes doing airway treatments at 2 am.  Nothing like falling asleep and waking up and hearing Maria say you didn’t do your vest.  Do I need anymore motivation when the woman that loves me more than anything tells me to get my butt out of bed at 2 am to do my vest? If she is telling to get out of bed and take care of myself I better do it! 

Just like last month, this list is really long and could continue but I will end it here.  So with all that said........What are you thankful for today? 


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