"The road of life..."

"...is filled with potholes". Or in our case jagged cliffs, metal spikes, and moats full of fire breathing dragons. I am tired of everything being difficult. I followed the "right" path. I went to school, got a job, got married, bought a house, and then tried to start a family. Why doesn't this work? Why does it feel like I am trying to move mountains? I just want a family. I want Owen and I want Lucas and Owen and I to be a family. It feels like this huge conspiracy. No one tells you when you're growing up that someday you'll get married and then have two miscarriages and then have to try and try and try for a baby, take fertility drugs, and then have a very sick baby who does not survive despite everyone's best efforts. This is not the story you tell little girls because it is horrible and awful, and in some cases, it's true. It makes me feel like a failure that I cannot accomplish this thing that others seem to accomplish so easily.

Lately I feel like I've been looking to the future a lot. I wonder if this is what Owen would want me to do or not. I hope that he would. I hope that I never disappoint him. I want him to know that when I think about the future, he is always there...not with me, but always with me in my heart. I want him to know that if I am ever lucky enough to give him a brother or a sister that they will know about him and know how brave he was and how much we love him. It probably seems insane to most that I could even think about this right now, but to be honest it is the only way I can not go insane. I have to believe that someday Lucas and I will be able to be parents for longer than 6 precious days. I have to believe it in my heart or I will suffocate.

I want to believe that our road will get easier, but I don't think I'm brave enough to think that right now. I feel lucky to have a great husband who loves me and who I already know is an amazing father, and I am glad I have him to travel this road with.

So much for my happy ending...

Right now everything feels like this is the end of my life as I had pictured it, and the new picture isn't so great. Nothing can ever be carefree or truly happy after this. How do you look forward to things knowing that you will always feel sad inside? I find it very difficult to be happy for others because I am so angry that all of my happiness has been taken away. I'm sure this is not a healthy way to feel, but right now I cannot overcome it.

There is absolutely no karma in this world, because no one could have loved their baby more than I love Owen. And I don't feel like I am a bad person or that I have ever done anything too serious on the "bad karma scale". I know there are lots of people out there who are terrible and don't love the children they have been blessed with, and yet they are given healthy children and those poor children are subjected to terrible things when they didn't do anything wrong. I firmly do not believe in karma.

I am very angry and very sad and there is nothing that can be done about it...which makes me more sad and more angry and I don't really know what else to do.

No One

I feel like there is no one out there who gets this. Intellectually I know that there is... but it feels like I am drowning and there is no one who can save me. I am looking in the mirror at my completely wrecked body, and I know that I am going to have to look at it every day for the rest of my life and remember that even though it went through everything it had to go through to have a baby, I don't have my son. I feel sorry for it, like I'm not even attached to it. It's not normal for your stomach to touch your thighs and to not have a reason. I can't just say to people "oh, I just had a baby" because then they will ask, "oh, how old is he?"... how do I answer that question. Obviously I would go through it all again to have Owen... I just wish I actually had Owen. I want it so bad my entire body hurts with wanting it.

Normally women can sit around and talk about their stretch marks and baby weight with a kind of badge of honor, because they have what they set out to have. I can't take part in those conversations even though I went through it too. I'm a mother but not a mother, and I just feel like an outcast in this world of people who have families. I understand that I make people uncomfortable because I'm sad and it's hard to talk about what happened, but it hurts that I don't fit in on either side of the equation. I'm just on this island by myself, a sad lady with lots of scars and nothing to show for it.

Numb

I feel like part of me is getting used to the pain that I wake up with every day, and I guess that is probably part of "the process". I feel like I am ready for it when I open my eyes, instead of it blindsiding me. Another part of me thinks, how horrible is it to get used to something like that? It feels like part of me has been lost and has gone numb. I suppose that Owen was a part of me for a long time, and he is gone so I have lost that part.

I have the ability to go out and to speak to people and to get through a day. I am hoping that if I can fake being a human for long enough then I will eventually start feeling like a human again. Sometimes it feels good to go out and act like my old self. No one would ever know what is going on under the surface and that I miss my baby so much it feels like it is going to kill me.

Sometimes, actually a lot of times, I think about the future, and I try and make plans in my head for what in the hell we are going to do now. What do parents do who don't have a baby? I feel guilty for wanting to see past losing Owen. It just feels like... really?! This is going to be every day for the rest of my life... missing him. Not that I don't want to miss him, I just feel like there has to be a way that life can get better. I just want to hold him and have CDH not exist and then he would have been a healthy baby that I could have brought home with me.

I guess I don't know which is worse... being blindsided by the pain and feeling it, or being numb inside. I guess it's easier to function when I am not feeling anything, but it scares me to become a walking zombie who doesn't feel things. That's not what life is about, right?

At Least

"At Least...." I find that this is a phrase that people like to use a lot. "At least you can have more children"..."At least you know you can carry a baby to term"... "At least you know he is in peace"...

I know that these are meant to be comforting, and I understand that people don't know what to say to me... I wouldn't know what to say to me either, but I can tell you that there is no "at least" in this situation to me. My son is not here, and all I have is 6 days of memories of seeing him hooked up to tubes and machines and 15 minutes of holding him before he left me forever. This makes me very sad and sometimes angry. No one could love their baby more than Lucas & I loved (love) Owen and it will never be fair that he is gone, and right now I don't care about God's grand plan, because I can't think of any reason why I shouldn't have gotten the chance to raise my child.

It hurts that most people won't consider me a mother, or will never know that I am one, because I am. I will never stop being his mother, and I want people to know that he existed and he was really here.

Pictures and Words

I decided to add a picture of Owen to my last post. I went back and forth about this, because I didn't know how people would feel about it. I decided that I don't care how people feel about it because he was my beautiful baby and I want people to know that he existed and what he looked like.

I don't think I will post any of the pictures of us as a family because they are very private, but I did want people to see what a beautiful son lucas and I had and what our memories of him are like. We had a photographer from a non-profit agency called Now I Lay Me Down To Sleep come to the hospital on his last day so that we could have some really nice photos of him and of us as a family. It may sound strange to do something like that, and it is really hard to look at his pictures on most days, but I am so happy that I have them and that I will never ever forget his sweet little face or his little feet.

When I look at his pictures he looks so perfect and healthy and beautiful and peaceful. It is painful that the only time we got to see him without any tubes and tape all over him was after he was gone, but I'm still glad we had that time. That whole time is such a blur which is another reason why I'm glad we have quite a few pictures. I remember talking to him and telling him he didn't have to struggle anymore and that lucas and I would be ok. I got to hold him and kiss him which is something we weren't ever able to do while he was hooked up to ECMO. Lucas and I kissed him all over his face and told him that we would love him forever and I just hope that he could hear us.

I still write him letters all the time. I wish that there was somewhere I could send them so he could read them and know how much my heart aches for him. I feel very empty because I have lost all of his future and our future together as a family and I just want him to know that we did everything humanly possible to give him that future.

I love you Owen.

Smallest Wingless

I put the lyrics to a song called the "Smallest Wingless" in this post... because there is a line in there that gets me every time... when he says "we said hello at the same time that we said goodbye". That is how I feel. I didn't really get to know Owen, and that hurts because I know he would have taught me so much and been so amazing. He already taught us so much just in 6 days, and was such a strong fighter.

I just want to look into his little face again and feel him hold my finger.

I recently spoke to someone I have known as an acquaintance for several years and he shared with me that he had lost a daughter. It had been many years since she passed, but he still got choked up talking about it. This gave me a glimpse of my future. This man had always seemed so happy and jolly to me whenever I saw him, but he still holds all of the pain of his daughter's loss under the surface. It is encouraging to know that I may be able to be happy again in the future, and it may sound strange, but it is also somewhat relieving to know that I will never forget. I don't think I ever want to get to a point where I have 0 pain, because he is my son and I think that pain has to become a part of me. I do know I don't want it to be a 10 for the rest of my life, but a 0 is not an option either.

I am also wondering if losing Owen has lessened the stress in all other areas of my life. Worrying about him for all of this time has made me realize that nothing else I used to worry about was really that important. I don't really care what anyone else thinks, because for this period of time, I haven't and still don't have the capacity to care or think about anything else. It is making me realize how irrelevant so many things are that I would stress over, and that my family and my friends are what matter. They are the people who have helped me survive this so far, and will continue to do so.

I miss him. I hate the fact that he didn't get to grow up and we didn't get to know each other, and I hate that we had to say hello and goodbye at the same time.


Lyrics to Smallest Wingless :
Dear son, we've been waiting for you

Thrilled beside ourselves that you've arrived

White coats came in, heads held low

Talked for a bit, shuffled outside



We closed the curtains,

Held each other,

And cried

We said hello at the same time that we said goodbye.



And smallest wingless, oh you came to us

Leaving as soon as you'd arrived

But sadness is just love wasted

With no heart to place it inside



We closed the curtains,

Held each other,

And cried

We said hello at the same time that we said goodbye.



We closed the curtains

Held on to one another

And cried

We said hello at the same time that we said goodbye.