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.

Tuesday, April 21, 2009

A Whole Month

Tonight at 11:56pm it will have been one month since Maxton passed away. This is so crazy for me to think about. It seems like yesterday, but a lifetime ago. My heart aches for myself. I know that Maxton is in heaven playing with his new friends, but I am left here. I should be rejoicing that he is with God. I mean, that's my goal. To live my life so that I can be with God one day. Maxton is lucky. He isn't in pain and is certainly enjoying himself there. I cannot begin to imagine what heaven is like. I am so curious now. More curious than I have ever been. I am sure is getting into mischief and "flirting" with Addison, Ava, and Ryann and buddying up wiht Joseph and Kaden. I can only imagine the fun they are having. In a way, I am jealous. I wish I could be care free like they are.

The past few days have been a little rough for me. I just miss him and wish he could be here. I was thinking about the upcoming year and all the things Max will miss. I wonder if he is heaven thinking of all things I am missing up there because I am stuck down here. :-) It seems like every month there is soemthing that will make me think of him. May- mother's day; June- father's day/ conceived; July- found out we were pregnant, my birthday; October- diagnosed/Halloween; November- Thanksgiving; December- david's birthday/christmas... it just goes on. Not to mention every 3rd of the month i will think about how old he would be; every tuesday i think about the tuesday he was born; every saturday i think about when he dies; every 21st i think about when he died... it's crazy!!! That is alot of thinking and "anniversaries".

There has been some talk of me stopping following other blogs because it is too heartbreaking. I CANNOT do that. The other families are a part of my family to me. It's my new CDH family and I won't stop reading. I rejoice with each successful, positive thing. And my heart breaks with each family facing new struggles or the loss of their child. For those of you who arent CDH families, just because your baby lives, doesn't mean that things are all peachy. These babies often have many struggles to continue to overcome.

When I read about Kaden today I was pissed! I am so angry that someone else is where I was a month ago. How many more will their be! It is simply not fair and I am sick of it! 50% survival rate... that is ridiculous! In fact, all the babies that I have followed recently seem to be passing away! It makes me so ANGRY!!!! Kellie, Carter's mom, has created a blog. I encourage everyone to check it out. It is a new idea to spead awareness.


Jaime's World said...

I must admit Ashley,
I absolutely HATE CDH! Who knew that this disease would cause us not to be "real" parents to our babies? It's so not fair!
Tom and I are truly grateful for every moment we have with Jaime, for we know not what the next moment will bring us!
If it hurts you too much to follow our blog, you don't have to, I'd truly understand. I also understand what it's like to be the cheerleader for the other CDH'ers, we all just want what's best for everyone!
I'm sorry it's been a month, I'm hoping that will each passing day, holiday, 21st, you will find peace that Maxton is no longer on this CDH roller coaster and that he is not suffering.

Hang in there girl,
Love and big hugs,

P.S. I was pissed about Kaden, too...stupid CDH.

Sky + Carla said...

Hey Ashley,

I read your blog often but I try not to post b/c I'm always pissed when I start reading CDH blogs. I have become very addicted to reading CDH blogs, in some way I think it helps and in other I know it makes me worst. I still can't believe Joseph is gone and it kills me not knowing what caused him to have CDH. I just want a answer... Its good that you still look up to God b/c I'm not going to lie I haven't been very happy with him lately. First Joseph, then Addison, Maxton and now Kaden. None of us or our kids deserve this. Why make us suffer so much, we want to have our babies and give them everything in the world. Why let parents like the guy in WA who just killed his own 5 kids, have his kids why? not fair :(
Sorry for the vent! I'll stop and vent again some more later :)


~ Carla

Craig and Kristi Kuehl said...


I am in so much pain right now. I don't know how you do it. I don't know what I would do without you--and everyone else who has been where we are. I am trying to come to grips with losing my son, and not questioning God's decision--for us all. It is just so hard to make sense of, so hard not to "go to that place" of why me. I just have to find comfort in the fact that Kaden and Max are together and looking over us during our pain. I am angry that CDH is not "known" and that there is not enough research. But it is up to us to change that. Kaden and Max deserve that. I don't want any other family to go thru the pain that Craig & I and you and David have gone thru. Just let me get thru this week, and we will make a difference. We will be heard!

I love you and may need you more than ever now.

Marion said...


I was heartborken and felt like I lost Addison all over again when i found out about Kaden. He and his family have become part of my family. I talked with my mom and she told me to read The Shack and it might help me comes to terms with acepting the why. I would reccommend that you read it when you are ready. I sat down yesterday and read the whole book. Lots of love, Marion

Stephanie said...

I can't believe it's already been a month. I can't imagine how hard it would be for those dates to pass, and you trying to keep the tears from falling. I don't think there is one cdh mom or dad out there that thought they would have to endure any of this pain, the day they found out they were expecting a baby/babies. I know that we didn't even know about it, when I took that pregnancy test at home, and it came up positive. It just doesn't seem fair, and I know you get that. My heart is with you always. Oh, and I logged onto Kellie's website, and am willing to do anything I can to show my support.


sdigregorio said...

Thanks so much for your message on our care pages site. I am so sorry to hear about your little baby boy. I know we have quite the journey ahead of us and appreciate the support of others that have gone through the same thing.

Thanks again!
Sarah DiGregorio

Elizabeth said...

I like Angelversaries. I also recall it was the 2nd - her birth, the 10th - her death and the 13th her funeral. The first months are a blur of those dates. How I would react/act and feel.

You are okay - not feeling anything anyone else has not felt.

Keeping you all in my thoughts and prayers,

PS And Miss Cecilia will teach your boy to make snow this winter - just a warning there!

Fer said...

I keep thinking and praying for you!