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.

Monday, April 6, 2009

Rambling On.

I am not able to sleep- again. I lay down and try to sleep but just can't get there. Too many things running through my head. I miss my baby boy. He would have been 5 weeks old tomorrow... Going into this, I knew something like this could happen. Of course, you have to believe that your baby will be in the 50% that survives, but there were days when I would think about "what if?" I am actually handling it better than I thought I would... most of the time anyways. It's just at night. At night I lay there and think.. I think about how soft he was, and how much I wanted to hold him- just pick him up from the hospital bed and run away with him. I think about the only time I really saw his eyes and how hard he was tryign to focus on me but couldn't. I think about the only time I heard him cry and really wish that he hadn't cried then. I think about all the dreams I had for him, like playing games with him. And how I wanted to bake cookies with him. And read to him. And how I wanted him to love music like me. And love to work out like David. We had so many plans for Max. I know that Max is in a better place and I know that he is at peace but I just can't let those plans go. I have so many images from him in the hospital that play through my mind... I want to see the good images, not the bad ones, but for some reason it's like my mind is on replay of that last day... over and over. Whenever we bring up Max (which is often) we talk about how he is heaven and how he is safe, but I can't help but think... but I wanted him here. I needed him here. I think about how selfish that is for me to say. I went to dinner with some other CDH moms last night (their kids are at Vandy now)and we were talking about how we just wanted our kids to have a good quality of life. And I think that maybe that is why Maxton had to go, because he just wouldn't have been able to overcome everything and might not have had a good quality of life because of it all...And sometimes that does make it easier to think about. I didn't make him stay here only to have a bad life... but in my mind, his life would have been great because I would have made it that way for him. And it is sooo hard to get those dreams for him out of my head. I wonder, when I do have children again, what will my dreams be for them? Will I want to do all the things I had dreamed for Max, or will I not, because those are Max's dreams and I don't want to replace him. It's just hard... I had planned for a baby since July. Sure, i found out in August that something might be wrong.. and confirmed in October.. but I still let myself have dreams for my baby, what mother wouldn't? It's just that the death of those dreams has been hard to take. I am not sure if this is making sense.. I sure hope so, but it is late, and I am tired.. I just can't sleep. I wish I had my Max to hold or feed or something. I know I am going to be okay, and I know that this will get easier, it's just late at night... if only we could skip night time. :-)


Sky + Carla said...

I will probably post about this again later b/c as soon as I started reading your post I just started crying so I can't think very well right know. I just wanted to let you know that everything you just wrote described how I think I feel also, so I understand how you feel I don't know why this happened to our children and to us, and we will probably never understand why. I don't believe my CDH journey has ended, this journey just went a different route. I am very sorry this happen to you, no mom should lose a child. Joseph passed 3 weeks before Maxton and I still can't sleep well. I don't think I have gone to sleep before 4am. Okay, now I'm rambling.


~ Carla - Joseph's mom (2.3.09 - 2.26.09)

Craig and Kristi Kuehl said...

Oh Ashley. You are feeling all the things that any Mommy who had to let go to early would feel. I wish I could say that it will get better, but I honestly am amazed at how well you are doing. I know that you miss Max. I know what you mean about being in the hospital and just wanting to pick him up and run--I have that thought daily. I want to hold Kaden so bad and the mornings are the worst for me. I want to wake up and feed my baby and get no sleep for a different reason. In the last two days I , too, have questioned whether we did the right thing. It is so hard to see your child fight for their life--the life we gave them. But we gave them the chance at life and we had dreams for them. It is hard to leave the outcome up to God, but Max brought you to me and for that I will be eternally greatful. I do not know if Craig and I could get thru this without your support. I am not just saying that--I mean it from the bottom of my heart. Your and Marion's posts mean so much to us. You are supporting us thru your unimaginable pain and loss. I wish I could bring Max back for you--somehow make it right. You do not deserve not to have him with you--you are and will be a great mommy. No child will ever replace Max for you & David. God will bless you with another baby and it will be a different kind of love--your love for Max is special because of all he has taught you and all of us. I wish we were closer--I know we would be great friends, but I will take what I can get because I need you. I hope your saddness passes soon and you feel Max around you. I know I feel him around Kaden--his "brother" is helping him thru this.

I love you and I want you to feel better :)

Jaime's World said...

Hey Ashley,
I'm so sorry you're feeling this way, but from what I understand it's completely normal. I think that all of us CDH mom's feel the same way, honestly, Tom and I grieved the loss of Jaime the day of his diagnosis. I still have days wondering if I'm going through all of this in vein. Or are Tom and I selfish for trying to keep Jaime, knowing full well his life is going to start off horrible with no good predictor of how it's going to end! This is such a scary position to be in! I truly admire you and David for your strength. I know it's hard, but you guys are really strong!
Thank you for allowing us to share in your lives.
Hang in there,
Love and prayers for peace and comfort,

Marion said...

I know exactly what you are talking about. I do pretty well during the day and when it comes time to go to bed, my mind begins to race. I think of all things that I had planned for Addison and now I have empty arms and a lonely heart. I know that this is how it is supposed to be and I will find the reason in time. I also know that you are a very strong and amazing woman and will get through this and also have your ""ah" moment when all this makes sense.

Elizabeth said...

We grieve our hopes and dreams for our children as well as them too. Because I can promise you your thoughts for them - to love music or work out - well they have their own personalities! But you love them for it any way.

I hate this and I hated hearing it when I was where you were - but in time - you heal but you never forget. There is always pain - but you get used to it and learn from it.

As for what our angels now - they inspire us, they love us - keep your eyes, mind and heart open - they come to us in some amazing ways. That I promise.