Answers

Only a couple people asked questions about me, so here goes my answers.

Has your loss brought you closer to your family and/or friends? So many are mixed on this so I was just wondering.
There are so many answers to this question! For myself and my husband, it has without a doubt brought us closer together. Sometimes I look at him and think about that song that has that line in it that goes, "And I thought I loved you then." Sure, we've had our fights and arguments, but everything that we have been through has brought us closer to each other then I ever imagined we could.

As far as family and friends, it's really a toss up. Overall, I have lost a few family members and friends along the way. I simply choose to end all contact with someone that refuses to acknowledge MJ. It's pretty sad that it's come to that. I don't understand how family, close family could pretend that MJ never existed. These family members (who shall remain nameless) didn't call and didn't come to his funeral, among so many other things that have happened since we lost MJ. The same goes with friends, I haven't even spoken to two of my bridesmaids since we lost MJ. One called and one sent a card, but I haven't heard anything from them since. And like I said in my previous post, I am in no way not taking any blame - friendship is a two way street, but at the same time, they should have been there when I needed them to - and they weren't.

The months just after MJ brought me further and further away from the rest of my family (except for my husband). I pushed everyone away and I just couldn't cope with how the world goes on, while I was standing still. It caused some relationships to suffer, because so many people just wanted to help me, but I didn't want their help, all I wanted was to whole up and remove myself from the world. Just in the last few months, things have gotten so much better. I am getting better emotionally, and I am working things out with those people that I pushed away. It's taken almost a year, and while I'm not quite there yet, someday I will be. And the people who still support me and love are the only people I want to be around anyway.

Do you work outside the home? If so, what do you do? Also, you are so great and I'm glad we have "met" even on such sad circumstances. Thanks for doing so much to raise awareness for CDH AND helping NICU parents!
I do :) I work for Friends University in Topeka, KS. I recruit for the associate, bachelors, and master's programs at our campus. I love my job and what I do. I think that education is a very important key to success and I am very glad that I can play a part in giving that to some people. I am also currently working on my master's degree in leadership and management. I have about a year and a half left in my program, which I am very excited about. It feels good to be back in the classroom, I think I enjoy it more now then I did in my undergrad work.

Since there weren't a whole lot of questions, here is a little bit more about me:
I grew up just outside of Chicago, IL, in a suburb called Mundelein. I played softball my whole life, and ended up getting a scholarship to Benedictine College, in Atchison, KS to play there. When I went there I thought it would be for four year, and then I would move back to Chicago and start my career. I never calculated falling in love and finding a husband! Willie and I met when I was a sophomore and he was a senior. We each took a class called Country and Social Line Dancing (I took it for fun, and he took it as a graduation requirement for his Physical Education degree). We got paired up as dance partners, and the rest as they say is history! We then moved to Kansas City, MO and lived there for a year before moving to Topeka and starting our family. We have two cats, Cammie and Charlie, and one dog, Lola. I swear each week we change our minds about moving or staying in Kansas! Part of us wants to move and get the heck out of here, and the other part wants to stay here and build our life. We just can't decide! I know that somehow, someday, it will all work out and wherever we go and whatever we do, it was meant to be. I always like to say, "If you want to see God laugh, tell him your plans." Life is so unexpected!

Clarity

Last night I couldn't sleep and for some reason or another, I had a yearning to go through all of MJ's things. So at midnight last night, I looked at some pictures and touched his things and I read every card, cried and sobbed as I looked through each item of his and when I was done, I had a feeling of overwhelming comfort. It's ironic, really, when you think about it. Going through his things, reading the cards that people sent us when we lost him, I thought it would make my longing for him greater, but instead it brought me a great sense of peace and clarity. I know that MJ is in Heaven, I know that he has a greater purpose on the Earth, and that purpose is not yet complete, nor do I know what it is an its entirety. I know that part of his purpose was for us to find the amazing friends, who have become family to us, and give other families the touch of comfort they need through MJ's Memories. But I feel as though his greatest purpose is still yet to come. What it is, I do not know yet, but I truly feel as though my son will have part in something amazing and wonderful. And maybe I will never know that purpose is, but as his mother I feel this amazing connection with him still. It's a bond that can never be broken, that of a mother and child, and even though he is gone, I can still feel it.

So as I was going through all of his things, part of me wishes that we would have waited to put them away after we lost him. Part of me wishes that we would have simply left everything the way it was, and just shut the door to his room and grieve, I mean really truly grieve before we put away his things. But for a multitude of reasons, namely being this little man below, we couldn't.

We had to go through everything and pack it all up just 10 days after we lost him. We had Will that was just a newborn himself and although we were amazingly devastated, we had to be parents and give Will every ounce of energy we had. And we did. We faked it, we smiled through out tears, and we sobbed at night and we tried to give him as happy a babyhood as we could have.

Just now, 10 and half months after we lost MJ, do I feel as though I have some clarity on his death and his life. It's the clarity that makes me able to smile when I remember the memories that we so cherish. The clarity that enables me to believe that something beautiful has come out of something tragic. For so long we have been trying to get pregnant again. I so wanted to be able to believe that although we have been through the worst thing anyone could ever imagine, something beautiful can happen in its aftermath. For so long I wanted that beautiful thing to be a peaceful, beautiful pregnancy ending with a healthy baby. And while I still long to be pregnant again and be able to achieve a new hope that only a parent of an angel can have, I know that something beautiful has already happened.

It's the friendships that I have made and the support that I am able to give to other families. If MJ would have survived, we more then likely never would have joined Project Sweet Peas and we never would have met the amazing women that I am lucky to call my friends. In the aftermath of losing MJ and being completely absorbed with my grief, I lost a lot of friends and family. I haven't even spoken with two of my bridesmaids since we lost MJ. (Kind of pathetic, huh?) I realize friendship is a two way street, but at the same time, a phone call would have been nice when I was so completely devastated I could hardly do anything. The girls from PSP and a few others (you know who you are!) have helped me pick up the pieces of my broken life. While I will never feel completely whole again, I am starting to feel not so broken. I know that I can pick up the phone to anyone of them, at anytime, and it feels as though I have known them my entire life. And you wouldn't believe that I have only met two of them - and just a few weeks ago!

It's starting to feel as though the cloud is starting to lift and I can live again. I am so thankful for that. Tomorrow I start my second round of the fertility drug chlomid. The first round simply didn't work so we are doubling my dosage. I hope this works! While I thought I was ready for another pregnancy a long time ago, I am thankful for unanswered prayers. I finally have the clarity to truly appreciate what it will mean to be pregnant again, and I know that I have the support of some truly amazing people who I am honored to call my friends.

Delivering and Remembering

So Friday we drove the little over an hour drive to Children's Mercy Hospital and delivered 20 more bags in MJ's memory. I thought this trip would be an easy one, stop in and say hi to the Child Life Specialist, and then go visit my sister for the afternoon. And overall, it was, but just as we got off of the highway, we pulled right behind a Children's Mercy Ambulance. And all those thoughts of that day that MJ got transferred came through my head.

When I was pregnant, we had two options to choose from to deliver. The first option was to deliver at KU Med Hospital, and hope for the best with MJ and that he would not need ECMO, or the heart and lung bypass machine to keep him alive. Every test that we could have done in utero, we did. And every test gave us a very optimistic outcome. His lung size looked good, he was a good size (weight), and most importantly, his liver was not in his chest cavity. Almost 70-80% of babies with CDH survive if their liver is 'down'.

The second option was to deliver at a nearby hospital and have MJ immediately transferred to Children's Mercy.

We chose to deliver at KU Med for multiple reasons: we thought that a transfer would be a lot on his little body, we did not want our boys to be separated, we did not want to be separated from each other, and we truly thought that MJ would not need ECMO.

The day after I delivered Will and MJ, the doctors came to us and said the were not sure if MJ was going to make it through the night. We cried, we prayed, and we sat by his side for as long as we could. And he made it through the night. We were so optimistic and so happy that he made it. Then the doctors came to us and said they thought that he would need to be transferred and they were making arrangements to do so. At that time, that was our worst fear. It was just about the most awful thing in the entire world to watch him be transferred. Three nurses and two paramedics came to KU Med to transfer MJ. He was hooked up to countless machines and each machine had to be unhooked and then hooked up to the transfer machines. It took about an hour and a half to complete everything. I stood and watched and sobbed the entire time. They then let us reach in and touch him before they whisked him away to the waiting ambulance. As soon as they left, Willie, my dad, and his dad all left to go be with MJ. My mom, and his mom stayed with Will and I. We were completely devastated. Although the hospital was only about ten minutes away, it felt as though we were separated by miles. The hospital offered to release Will and I one day early, but Will was starting to come down with some jaundice, so we decided that MJ was in the best possible hands that he could be in, with Willie, my dad, and his dad with him, and Will needed to be in the best place possible for him, if he needed that same level of care.  The next day we were released, and Will's jaundice was much better.

Seeing that ambulance brought back all those same emotions of devastation and heartache. I thought of that child's parents and how they must be feeling, and how I hoped and prayed that the child in that ambulance was safe and would come home. It's crazy how seeing one thing can bring back so many emotions and literally take me back to that day. In some ways its comforting. When we lost MJ I was so incredibly scared that I would forget. And while some of the emotions that we felt at that time have faded on a daily basis, the littlest things bring it all back. The sadness, the heartache, but most of all, the joy and hope that we had in our hearts. A few weeks ago Will was screaming and crying at my sister's house when we were visiting them. Her boyfriend commented on how we all knew that Will's lungs were healthy. It felt like a stab in my heart because if MJ's lungs were healthy, we would have two screaming babies at that moment. And so many emotions came back. So the moments like that, while I cry and my heartaches, I long for them. Because then I know, I just know that my little boy is always with me and he lives forever in my heart.

So, after that looong tangent, here are some pictures from our delivery of bags. Will had a great time being there, almost like he remembers that place and he truly enjoys when we go. Maybe he remembers that's where his brother was and that's why he likes it so much.

On a side note, my post about Questions is still open! So if there is something that you want to ask me . . . Go Ahead!