Our son Maxton was diagnosed with left-sided congenital diaphragmatic hernia (CDH) at his 19 week ultrasound. Maxton was born on 3/3/09 at Vanderbilt University. He fought hard for 18 days but earned his wings on 3/21/09. Maxton was an inspiration to many during his brief time on earth and has forever changed our lives. If your child is diagnosed with CDH, please feel free to contact us. Maxton may no longer live here on earth, but he will live forever in our hearts...

To start at the beginning of our story click here and scroll all the way to the bottom.

Thursday, April 9, 2009

19 days

Maxton has now been gone for longer than he was here. I miss my little man and was re-reading part of his journey. I am so sad that he was taken from me but am so thankful to have received the gift of him in the first place. I've had people tell me they wish they could take it all away, but I certainly don't wish that. If I had to do it over, the only thing I would change is the outcome. It's probably hard for people to understand, but I am not sure that I would change Max being diagnosed with CDH. I have so many new people in my life because of it that it is hard to wish that it never happened. I learned so Max from Max in his 18 days, many of it I wouldn't have learned if he didn't have CDH. You may think I am crazy because CDH is what took him from me, but it also brought me so much. So, I think the only thing I would change is still having him here with me. ( catch me on a bad day and I will likely have another, more vulgar opinion of CDH!) :-) Really CDH does suck... and I certainly wouldn't wish it on anyone else. I guess I am just trying to say that I am so very thankful of the strangers that are now like family. I know I have crossed paths with so many people on this journey that I would have never met were it for Max. With the birth of one son, we gained a family. Max, though no longer here, will always be a part of this larger family. I know that when some CDH parents think of their children, then think of the others lost, and the others who survived. I know when I think of Max I think about the other stories I have read. The people whose lives have been changed forever because of this horrible birth defect. The lessons that this has all taught me will stay with me forever, and unless you have lost a child you can't really understand. I would never want to take back what happened, but if I could change the ending that certainly would be nice. :-) It's hard to believe he has been gone for 19 days...


Jaime's World said...

Hi Ashley,
I must admit, I was thinking the same thing about Max earlier (the number of days part). We miss your updates on him, but are so grateful that you remain part of our CDH community.
You're right, the diagnosis truly sucks, but God has given us this challenge for a reason, some day we'll all know that reason is.
In the meantime, keep in touch. We purchased a broadband card to stay connected online...internet here at the Ronald McDonald House is not reliable. I wanted to make sure we could all stay in touch and I wanted to be able to complete my homework ontime.
Take care of yourself, wishing you a peaceful weekend!

Dotty said...

blessings be with you always. im so sorry for the pain and the ache you feel. i know Maxton is sure proud of his mommy, he is watching over you and smiling ear to ear. he is happy, and pain free. i hope that time will help with your pain, though i am sure it will always remain.

i completely understand what you mean about not wanting to remove the CDH from our lives, but at the same time, its such a horrific defect. you grow and learn so much, from information, groups, doctors and nurses, but i think we learn most from our lil ones.
Maxton showed the world how it is to live thru God, to show his stregnth and touch so many lives. he will live on forever.

God Bless
lcdh to zach 10-26-07

Vince and Patty said...

People do not understand when we say we feel blessed to have put on this path and taken this journey. Charlie would have been amazing without CDH - that is for certain - but I feel like we are better people and better parents because of the experience we are having. We would not change any of it, which sounds crazy, but it is so true.

Stay strong... you are doing an amazing job and I am sure Max is so very proud of you!

Much love, Vince and Patty

Craig and Kristi Kuehl said...

Amen, Ash. I know what you mean about CDH. Even being in the "thick-of-it" I am so greatful of the people it has brought into our lives. I know one day, we will all be able to get together in person and celebrate our babies, no matter what individual outcomes. I do know that I would be completely lost without the support and love of my CDH family.
On a side note, I can only keep 2 isolet angels by Kaden at a time right now, and as soon as I changed them to Addison & Max, he started making imrovements :) Max must be "brothering him"....