Chapter One: The Fabric of Our Cystic Fibrosis Family Quilt

Chapter One:  The Fabric of Our Cystic Fibrosis Quilt

I think it important to tell this part of our story because it is vital in the way Matthew has been taken care of.  They mystery of how God puts us in the right place at the right time, the way he guides us towards those who will eventually become vital structures in your life, the way in which He works his special magic that only He can even if it feels like you are lost to him, he is guiding you. 
Jack Waldbridge was a friend of my parents that they met through work.  We had known him for years and we knew he had a son who was sick, and we knew it was called Cystic Fibrosis, but we didn't know anything about it. When mom told me about the walk, I said, "OK, let's do it, we'll take Matthew".  So, two weeks before Matthew was diagnosed with Cystic Fibrosis, on a beautiful sunny day, my mom and I walked.  She walked through the pain, again I believe guided by God because He needed her to be there, to feel the connection between this family friend who lot their son ten months before Matthew was born and ours.  Momma hurt her foot, but we walked, something told her we needed to, I think it was Jarryd introducing us to what would become of branch of our Cystic Fibrosis Family.  Two weeks later, Daddy and Jack sat in the first floor family conference room and cried together.  The words of their conversation were never shared, that was a special moment between friends, a bond which our family and theirs still shares.  
It was 2004, we didn't have smart-phones, well people who were important did, they had Blackberry's... That's all there was.  There was no Wi-Fi, Laptops were incredibly expensive and not a luxury most people could afford or even thought to have, and honestly, we wouldn't have known what to do with it if we had it because as I said, there was no Wi-Fi.  It was age before “google”, WebMD was about the only source where you could find anything anyway.
Although the nurses who had been there with us throughout Matthew’s many admissions over the first 18 months were special, Rosanna coming to mind, Jeanne, Jessica, Laurie, and those who came later...
One of the nurses who especially became part of our CF Family was named Jessica Smith.  We became dear friends, sadly we have lost touch, life gets in the way but she will always have a special place in our family.  
Another nurse who was with us was Laurie Damare, Laurie has a son who is Matthew's age, Tyler plays soccer with Matthew, the fabric of our lives are very interweaved.  One of our respiratory therapists, Sheila Hancock, is amazing.  She can beat a child like nobodies business and it turns out that her daughter Courtney was in Matthew's Kindergarten class, and guess what... They were born on the same day, in the same hospital, within twelve hours of each other.  Courtney and Matthew are still friends today, and we consider Sheila part of our CF family and she is a part of the fabric that forms the quilt of our family.  There are many others, too many to list but you are all important.  Brittany, Beverly, the two of you became my rock in this later years. 

There is this other nurse, who came and left only during certain times and at first I didn’t understand who she was and why she was there.  She was so knowledgeable and helpful and she adored Matthew from the beginning, Jeanne told me yesterday, February 24, 2012, "Don't forget us".  Jeanne, I could NEVER forget you... How could we possibly forget the first person Matthew had a crush on.  You have a very large piece of our quilt.  You have wrapped us up and held us together through all of this from diagnosis until right now, and until forever... For all of you, we are forever grateful.  You fought with me, you listened, you didn’t doubt me, you never thought I was crazy and you always knew I had Matthew’s best interest at heart.  For you, I am eternally grateful and so is my family.  These are my words, Tommy is a man of few words, and I was blessed with my Father’s gift of words, so I will not hold back.  Jeanne, from the bottom of my heart, I love you.  Don't think that if I didn't mention you, you aren't important... You are all important, there are just some people who were there from the beginning... The VERY beginning, before the beginning... Before we knew there was anything to begin.

I think I need to stop here for a moment, and talk about someone who I mentioned in my first entry.  I want to talk about a person who never gives up, never rests, always fights.  His compassion and devotion to all of his patients and their families I don’t think is praised enough.  And although, for a time, we strayed from him, Dr Eduardo Hernandez I would say is the border of our CF Family Quilt.  He has held us together, put us together, put us back together, given us hope, given us faith and now, along with Vertex he is giving Matthew life.  A life that I never thought he would have.  We have not always seen eye to eye, your methods and my ideas weren’t always the same but we worked together and I don’t know if any other doctor would have put up with me the way you did.  Do you remember the first words you said to us?  “This is not asthma, I do not know what it is, but I will not let you leave until WE know what it is.”  I will never forget that, and you held true to your word.  You found out what it was and WE treated it.  We all love you, and we look forward to watching Matthew grow up, with you, still along our side because you will forever be the edge of our quilt that holds us together.