4 year anniversary

Today at 9:15 am will be our 4 year anniversary of our diagnosis with Cystic Fibrosis.  I remember that moment.  I think it is ingrained in my brain.  Avery was almost one month old.  I sat in our bed with her in my lap while I fed her.  We were waiting on the phone call on her sweat test results from the previous day.  My cell phone rang with the read out "pediatrician."  I answered to hear my actual pediatrician on the line, Dr Padrez.  He informed me that her sweat test results were 101 and 104 for each arm and that in fact she did have cystic fibrosis.  I was absolutely shocked. We had gone in for the test, but were confident the results would come back negative.  We had no history of CF in the family.  Only 30,000 people have cf in the US...there would be NO way our baby would be one of those people.  I quickly got off the phone.  I screamed and held her to my body.  It was a gutteral cry. (it was not my best parenting moment)  I called Mike and he heard what I had to say and came home immediately.  I called my parents.  I now found out my mom had a similar experience with the news.  She was devastated.  Mike and I cried a lot for the next few days...and weeks.  We were put into contact with our CF center at Phoenix Childrens.  We will always have very fond memories of that wonderful team.  They were our extended family when we lived there...we saw them every week! 

I wish my self now could go back to that brand new mom and hug her.  Tell her she would be okay. Tell her that she was blessed to have this angel and to not worry.  That there would be hard times, but there would more great times than bad.  I would tell her that because of this disease she would see the most wonderful sides of people.  And she would be brought to tears because of their generosity and kindness.  I would let her know how this little baby was growing up.  That, yes, she has a lot of treatments, but the times that she is up and around she is funny, and spunky.  She is an energetic, beautiful little girl that loves to tell knock, knock jokes and cackle with laughter.  Most of all I would tell her that although her life would be different, it wouldn't be bad. 

I wish sometimes I could better put to words how much we appreciate our friends and family.   We have had some rough times.  Times that were exhausting and tough to swallow.  But you have always been there with a hug, a phone call, with words of support...thank you.  Thank you for all that you do to help fundraise for a cure.  Thank you for your time, your effort, your donations, your patience;)  Without you in our lives we could not be the parents we are for our Avery. 

Thank you.