This Day, This Year

This has been an absolute roller coaster day. I almost went back to bed after the first hour of my morning... 1. It has been 7 months today that Owen is gone. It seems like sometimes I am right back there in the NICU and there's no way it could have been that long. This should have been his first Christmas, and it wasn't. It was our first Christmas as the new people we are now, and it was not anything that it should have been. 2. We applied for a home equity line of credit to do some upgrading to our house, and I found out this morning it was denied for a really lame reason. We can still do some of the upgrades, it just means taking money out of savings and that's just not something I like to do. 3. I got a reply email from our social worker yesterday saying we would probably not hear anything back on our adoption certification until sometime in January... that our file had been transferred to a different judge who only looks at adoptions once a week.

At this point I just wanted to stay in bed until January 1... 2010 had broken me.

Well, I met another BLM friend of mine for coffee (a 3 hour coffee) and felt much better after that. I went to the flooring store to order the stupid flooring anyway and the sales people were very nice. The day was going better than I anticipated.

At 5:03 pm, the social worker calls to let me know our approval came through today. Today! It was as if 2010 felt some remorse for the way it had twisted my life and taken everything from me, and it wanted to give me this one thing back. I am glad. It makes me feel like ok... this is the new standard for 2011. I need joy in my life. I need to believe that I can have a family that gets to stay. I need to believe that I can be a mother with a child on Earth. I don't care how it happens. I don't care if we adopt or have another baby or if a stork drops a baby off on my doorstep. I need to believe it can happen.

I am not disillusion. I know that having a baby will not make me less sad. But I also know that it will make me more happy. This may sound insane, but for those who have been there, it does not. My heart is broken, but the pieces still have the possibility of falling in love with another child and feeling happy... even though it will never look the way it did before. My life can't look the way it did before. For that I am glad. I don't ever want to be 100% "better"... ever. I need to carry Owen with me, and that is as painful as it is necessary. I do look forward to a time when I have moments of happiness, not just "not awful"-ness.

I know this is a rambling post, but it just feels like a lot of things are tied together at the end of this year.

Lucas and I are ringing in the new year quietly, at home. I look forward to saying goodbye to 2010... the worst year of my life. But in some ways is was the best year of my life as well, and to say goodbye to that makes me feel very sad. I am leaving behind the year I got to see my son... to smell him, touch him, hold him, and look into his eyes. I got to hope for him and fight for him, and do the things a parents does for their child. It ended in the worst way possible, but I wouldn't give up those 6 days for anything on this earth. I don't want to keep moving farther away from the incredible time that I got to be hopeful. Time can heal, but time can hurt as well.

I wish everyone a 2011 filled with hope. I feel like I'm beginning to get some back.

Forgotten

I understand that Lucas & I are the only people in this world who remember that Owen should be here every second of every single day. I obviously don't expect anyone else to remember like we do or feel like we do. We are his parents.

Am I asking too much if I believe that at times, other members of my family, of Owen's family, should remember him as well? I am very hurt by the glossing over of his existence. I do not care if it makes others uncomfortable when I answer the question, "so, do you have kids?". I answer yes. Every time. I don't really care who they are. I don't care how they react, and I honestly don't care how they feel about it at all. I am not going to discount my son's life to make someone else comfortable. I just can't decide if I am expecting too much of others in thinking that they should do the same.

I am not saying they should shout from the rooftops what their relation to Owen is, and that he is gone. But there are certain circumstances where I believe that acknowledging his existence is appropriate, and the denial of which is unacceptable. Maybe I am being too harsh, but it physically pains me to see him written off as something "uncomfortable" to mention by his own family. I feel like if I don't stick up for him and demand that he be acknowledged, I am letting him down. And letting him down is something that I absolutely cannot do.

Any thoughts??

Oh...

I got a new student in my class this week. She comes from difficult circumstances, but is a very sweet little girl. She really likes me and talks to me often. This week I was giving her a language assessment to determine her proficiency in English, and she saw my cell phone with a picture of Owen as my wallpaper. She asked, "Is that your baby?". "Yes". "What is his name?" "Owen".... at this point I am doing ok. I have gotten to this point in a conversation with other children... and this is usually the time where they lose interest and move on. She asks "How old is he?"....

"Well..."

"I'm going to get him a Christmas present"

"Oh..."

I don't know why I couldn't just say that he was gone...I've said it so many times before. I just couldn't make the words come out and see the expression on this sweet little girl's face. It's just too much. Thankfully at this point another student walked up to ask me a question and we got back to testing after this. I am also extremely thankful that she did not bring me a present for Owen. I am grateful that children at that age forget easily. And I wish I lived in the alternate universe I imagine where I could have said "Oh, he's almost 7 months old!! He would love a present from you!!"

Missing him never stops. <3

Luck

Why are some things so easy for some people and so difficult for others. I just can't get past this issue of "luck" or whatever it is. I have no belief in karma anymore... too many good people have terrible things happen to them, so it has to just be simple luck right? How do I get it?

There are some things in life that you work for... and if you work hard enough, you can have it. This does not apply to everything. Some people get pregnant so easily... some by accident. It took me 2 years to get Owen. And we WORKED for that. We worked SO HARD for Owen to live. I did everything I was supposed to and then some. We researched and we made the hard decisions and we prayed and we begged and we tried to "stay positive". We loved him with everything we had and it wasn't enough. He's not here. Other people get to keep their children, and I am glad for them, but what did they do differently? How did they get so lucky? If I need a lucky rabbit's foot or some sort of crystal or magic rock or a genie then please just GIVE IT TO ME already. I can't take any more.

I want to be lucky enough for the chance to be a mom for longer than 6 days. I want to be lucky enough to make decisions about birthday presents, not headstones. I want to be lucky enough to hold my baby and smile instead of cry.

But what I really just want... is Owen.

When

When will it get better. When will ANYTHING get better. The bad news just keeps coming and I just keep thinking.... this has to be the bottom... things can't possibly keep getting worse. But then they do. It is literally taking everything I have to get out of bed every morning. I would ask "why" but I don't believe that I will ever have an answer, so what's the point. I don't want to keep trying because it's not working and I'm really not seeing the benefit. I can't imagine things would be different if I just stayed in bed tomorrow.

6 months.... 6 days

Sweet baby,

I can't believe you were born 6 months ago. In some ways it seems like yesterday... in others, like a thousand years have passed since I was able to see your eyes and let you hold my finger. I didn't know it was humanly possible to miss someone as much as I miss you. Sometimes I think you are here checking on me... if you are, then you will know I'm not doing very well without you. I want so many things for us... for our family. I want everything for you that all mothers want for their little boys. It doesn't seem to get any easier with you being there and me being here. It feels like the world is wrong because we are supposed to be together. It was going to be you and me and your daddy against the world. We were going to show those doctors that their statistics were wrong and we were going to bring you home and cherish every moment together. I want you to know that I am thankful for the 6 days that you gave me. I can't know how hard it was for you to fight against the odds you were given.... and you did it so bravely and you were amazing. I never want you to think I don't love and remember every single moment I had with you. You were stronger than any of us. I wish I had made the doctors let me hold you before the end was so near. I wish I could have slept the whole last night with you in my arms. I wish I could see you and talk to you now just for one night and hold you again. It kills me that I have to go the rest of my life without that. When I get to Heaven, it's going to be you and me, ok? Your family will be together tomorrow for Thanksgiving. I hope that you are with us. I will be on the lookout for a sign that you are there, watching over me, giving me the strength to keep going.

I love you more than you can ever know.

Mommy

Maybe Next Year

I don't know how people do this. I can't get it together for the holidays. Just thinking about it makes the tears start to fall. I don't care about the holidays. I just can't. I can't make myself feel something I don't feel. I can't cherish the family togetherness... I can't even enjoy my time off of work. All I feel is stress because I know that he won't be there and yet I still have to go through the motions of this time of year. I would honestly be content to just stay home, grade papers, and watch movies on Netflix.

Maybe next year I will feel differently.

My New Self

I have been trying to figure out what "being myself" means now. I am not the same person I was... but who am I?

I have started going to yoga again.... and went to hypnotherapy last week. I am trying to clear away some of this anger that has overtaken my life. I want to be a person that Owen could be proud of... and I am not. I am so angry and it makes me a harsh person. I don't even know how to describe the anger that sinks its teeth into me. I want to crush things. I assume that this is not how a healthy person should feel... so I guess I'm trying to remedy it.

At yoga this week... I remembered what it feels like to breathe. I feel like I haven't been able to take a breathe since January. Fear and stress and grief and anger have this effect to where I cannot breathe. I think breathing is the first step to finding myself. It seems simple... but it is so easy to give in to the thoughts racing in my brain and to forget.

So I am now going to consciously embark on a journey to figure out who I am now... underneath the anger.

Blood and Genes

I saw a genetic counselor yesterday. This was to go over the results of my "thrombophilia blood panel" that my regular OB told me were over her head. I was very pessimistic going in to this appointment... feeling like it would turn out as every doctor appointment had turned out since January- bad news. This was not the case and I am thankful for that. Apparently I am ok (I have a few oddities, but they do not affect me in a physical way) and the one thing that needs treated can only requires that I take baby aspirin and a higher amount of folic acid. All in all, this is nothing compared to what I was expecting.

He also assured me that none of my conditions could have caused Owen's CDH... he referred to his CDH as "lightning" and apologized that lightning had struck our family. I appreciated this reference because he seemed genuinely apologetic.... he referred to Owen as my child... not "my pregnancy"... he was a very kind man.

This appointment made me feel better in some respects, though still lost in others. Understanding that it would be extremely rare for us to have another child with CDH is great to hear... but it was extremely rare that Owen had it at all... something like 1 in every 7,000 babies have a right sided diaphragmatic hernia. Statistics don't matter unless you're on the wrong side of them. I guess I feel better than I thought I would after the meeting. He told me that when we are ready to try to conceive, there is no reason to believe, in looking at my labs and Owen's autopsy report, that we cannot have a healthy child.

While I don't want to hear that I am at fault for Owen's CDH, or his death, it is somewhat difficult to hear that it was just plain bad luck that our son is dead. There is no explanation, no known cause, for CDH to occur in an otherwise healthy child. Why us? Why him? What did we do to deserve this bad luck... this lightning? I will never know. I only know that I miss him with all parts of my heart and my soul and that I will never get over losing him.

Lucas and I discussed the differences in losing a child and the other types of losses we have experienced (a parent, friends, etc). When you lose a child you lose the possibility of obtaining everything you ever wanted. You hear people say sometimes... that they have everything they ever wanted... or "If I could just have _____". That is never a possibility for us. We could win the power ball, have 10 healthy and wonderful children... and something will always be missing. Do we want positive things for our life? Absolutely. Do we want a healthy living child? More than you can imagine. But if we get it... he will still be gone. We will live the rest of our lives knowing that a part of us will be missing until we die and are able to see him again. Losing him makes life seem very short and very long all at the same time.

I am glad for the news I have received from this meeting. I am glad that there is an opportunity for us to have a child of our own in the future who could be healthy. I am glad for a husband who loves me and still wants to move forward and have a family. I am forever sad that Owen is gone and I cannot get him back. I am sad that this hypothetical future child of ours will never know his or her big brother. I am sad that Owen never got to experience his life or make his own choices or see how proud we are of him. The glad and the sad must co-exist forever.

Breaking Down

I am not ok. I am so far from ok that I actually don't know what to do with myself. Today I broke my phone, made a mess of the house, and threw out a whole bunch of things I probably could have used. All of this because I can't find our drill. I wanted to hang a mirror that has been sitting on the floor for weeks. Clutter makes my OCD come out in full force and I just wanted the mirror to be hung. I am convinced that an evil elf has come and stolen my drill because it is no where to be found. This set off my entire afternoon.

After I was unable to complete that project, all of the other incomplete projects start running through my head. Clean the toilets, mop the floor, clean out the storage, hose down the garage floors, order shelves for the china cabinet, hire someone to clean the disgusting back yard, wash the sheets, put away the laundry, clean out the closet, pick up things from the cemetery... on and on and on and on and THEN it went on to the bigger projects I can't complete because we're absolutely and utterly broke...replace the counter-tops, replace the carpet, replace the tile, pour concrete in the backyard, replace the dead plants, paint the cabinets, buy a new dining room table, buy a chandelier, AND ON AND ON AND ON.

So I snapped and started throwing things and throwing shit away. I honestly do not know what is sitting in the garbage can right now and I don't really care. In the midst of my madness it just hit me that none of it matters because he isn't ever coming home. Who gives a shit if the laundry gets put away or the fact that our sink is separating from the counter top or that my bank account will be overdrawn on Monday? WHO CARES because 1/3 of my family is dead. 33.33333333% But it feels like all of it. It feels like I am all alone in this world because everyone is moving on without me and I am still in crazy town.

I know some people who read my blog are going to be absolutely horrified at reading this. Who knows, I may even delete it for fear of being judged. But this is the truth. This is what it feels like after your child dies in your arms and you have to go home without him and leave him in a hospital room. Even 5 months later. This is crazy.

Crying in Public

I am a loud crier. I am not one to have silent tears roll down my face. I will hyperventilate. Maybe this is because I usually don't cry unless I am already at the breaking point and have just been holding it in. I am never surprised to find myself crying. That being said, me being a loud crier does not mean that I want attention called to my sadness.

I hate HATE HATE crying in front of other people. Mostly because they feel compelled to try and make me feel better. This is admirable and kind and compassionate, and I get that. But I am not crying for a reason that is fixable. Hearing that he is "in a better place" or that "he is still with you" or "you'll see him again someday," does not make me feel better. He is not in a better place... the best place for him is with me in my arms. He is not still with me... I cannot see him or hear him or touch him, so this does not make anything better. And yes, I do hope that I'll see him again someday... but not in the way that I want to see him...not as a mommy to a little baby who gets to grow up who I can take care of and raise. I am not trying to be mean or harsh, because believe me when I say I greatly appreciate anyone who has cried with me. Those people are few. I just want people to know that they don't have to try and fix it. I'll stop crying eventually.

I also don't want people to feel like they "make" me cry when they speak Owen's name. His name is the most beautiful thing someone can say to me. I always know that he should be with me and he is not. You are not reminding me of something painful. The pain is there every second of every day. It does not waver. But the love is there too. I do not forget that I love him either. The absence of him makes me more acutely aware of the intensity of that love... because I have no little heart to place the love inside. It just stays inside of me. And yes, it makes me cry.

I will ask.... please do not forget that I am a mother too. I understand that people might think it odd to ask me about my pregnancy or about breast pumps or things like this. But the fact is, I have been there too. I have the stretch marks and the cellulite to prove it. It still happened regardless of the outcome. It hurts more to be excluded from these conversations than included and to remember him. I know I'm not like other mothers, but I still am one. Please let me know that you haven't forgotten, or that you still think about Owen. That is what can get me through a day, is knowing that I am not alone in remembering him.

I have realized that there are going to be times that I am going to cry in public.... so if I happen to be with you... know that it's ok because I have to remember him, and right now that's the only way I can do it.

On Your 5 Month Angelversary

"You'll Be In My Heart"

Come stop your crying
It will be all right
Just take my hand Hold it tight

I will protect you
from all around you
I will be here
Don't you cry

For one so small,
you seem so strong
My arms will hold you,
keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand
the way we feel
They just don't trust
what they can't explain
I know we're different but,
deep inside us
We're not that different at all

And you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

Don't listen to them
'Cause what do they know
We need each other,
to have, to hold
They'll see in time
I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know
We'll show them together

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on,
Now and forever more

Oh, you'll be in my heart
No matter what they say
You'll be in my heart, always
Always

Stuck

I am stuck. I don't know how to move from this point. It seems like if I take a step forward, I just end up going backwards, so what does it matter? I have tried throwing myself into work- I'm over it. I have tried being really motivated and working out and doing projects around the house... and I'm over that too. It's too exhausting. I feel like I should be doing something altruistic... like organizing something for charity or I don't know. I just can't stay focused on something. It's like I'm trying so hard to just move that I don't know where I'm trying to go. I would really rather go back... I want Owen safe in my tummy... I want to go back before we found out something was wrong, when I really believed I might get to be a mother. When I was still hopeful that he was going to be just fine.

Where do I go from here. I have tried thinking about the adoption... I have tried thinking about having a rainbow baby. I have even been so proactive as to go and have a massive amount of blood work done to see if that is even a possibility. (No results yet). But what do I do when I get the results back? Or when we hear from the state about our adoption certification? What.do.I.do? I don't know. Do I have the strength to go through the adoption process.... do I have the mental capacity to ever carry another baby inside of me? How can it not break my heart? I feel like I don't even know if I have any heart left. It is in Heaven with my boy.

I want so badly to have a child... to get to be the mother I know I am. I KNOW I can do a good job. It just feels like maybe this awful horribleness has taken that chance away from me. On one hand, like I said, I worry about what I will do if I can adopt or have another baby. But what the fuck am I supposed to do if I can't? What do I do if they deny the adoption certificate... or what if we don't have enough money to go through with the adoption??? What do I do if my blood work comes back and it turns out it is very risky to have another baby?? Thinking about it makes me want to throw up. Thinking about having to think about it makes me want to throw up. Where is my baby? My perfect perfect Owen. Why isn't he here to make this hole in my heart go away? There aren't enough tears in this world to make the pain go away.

I am stuck, I have no where to go. I have to stay here in the worst place I can think of until I figure it out I guess.

Getting off the island

Would it strike anyone as insane if I said that it surprised me to realize I was depressed?

I did not come to this conclusion because I cry everyday, or because my heart hurts every time someone talks about a baby or pregnancy, or because I can't remember anything. I attribute all of these things to being sad. I am SO SAD. I can't even breathe sometimes I am so freaking sad. And I'm allowed to be... I'm supposed to be. I have to have this sadness because I have Owen in my heart, and that's the only place I have him. Sometimes when my husband looks at me a certain way, tears spring to my eyes because I can SEE Owen's face... how he would have looked growing up... how he would have looked as a young man. I can see all of this in my husband's face. Is that wonderful or is that completely f*d up? These things make me sad beyond description- but it's ok with me to feel this way.

But depressed... I don't know... I guess I saw depressed as something else. I saw depressed as more of an unwillingness to feel... being a shell of a person, that type of thing. I feel every day. I work on grieving because I know if I push it aside or try and "just keep busy" all of the time, it will make it worse. But despite my painstaking efforts, it has happened anyway. I didn't realize it until I had a week off of work last week. I am so used to going to work, coming home, doing chores, etc, that I honestly didn't notice. And then I had free time. I had a list... as I do every break from school, of things to finish before I went back to school. Typically I get half of this list done in the first day. This week- I did nothing. I would get up and tell myself... today I am going to do x, y, and z. And then I just didn't. I didn't leave the house- with the exception of visiting my mom, which in my mind doesn't count. I can't even explain why I didn't leave... I just couldn't. I have become a hermit. I didn't call friends, I didn't do much of anything. It took me until Friday morning to realize what this was... this was depression and it had sneaked up on me.

If you have lost a child, then I imagine you are familiar with "the bubble". The bubble is your group of family or friends who know what you are going through and they know how to act towards you. They aren't afraid to speak your child's name... they cry with you when you need it... they laugh with you when you need that too. You understand that your child was a part of their life too, even though not in the way he was in yours. You do not have to offer explanations for your moods, you don't have to explain anything in this bubble.

I lived in that bubble all summer long. And then I went back to work and it was hard because I was out of it.... but I was so busy with my "very important tasks" that I didn't realize I had gotten lost somewhere between intense grieving and whatever tattered shreds there are left of my "normal". It is the island of depression.. and it is now my job to figure out how to get off of the island.

Missing You

Oh Owen. I miss you.

Just keep swimming

Hrm. This break from work has been interesting. It was needed.... I needed to just be able to get my thoughts together again. I didn't cry as much as I thought I would- although the week is only half way done. I think I cried the usual amount for me. Not sure that this has to mean anything, just an observation.

I have found a bunch of feathers this week. Inside, outside... feathers everywhere. Outside didn't strike me as strange... but feathers inside? Weird. So I thanked Owen for my gift and put them with my pennies.

I had bloodwork done this week. A lot of bloodwork actually. Owen's neonatologist recommended some blood tests due to some clotting issues Owen had. Also, before I got pregnant with Owen, I had a whole range of tests done to try and figure out why I was having miscarriages. One test came back in the slightly abnormal range- I don't even remember what the test was for. They told me to have the test re-done, but I didn't, and it took a year and a half and a round of Clomid before I got pregnant with Owen I still wonder why I didn't have that test re-done then, but who knows. they put me on progesterone when I got pregnant for the first 12 weeks to try and keep the pregnancy. Well, I kept the pregnancy... but why did that work? Lucas and I have talked a lot about how we would want things to go if I ever got pregnant again. I feel like doctors just give you things. They never tested my progesterone levels... so why was I given that hormone? I am grateful that I got to carry Owen and hold him in my arms, but it makes me wonder if I did something wrong in taking what the doctors gave me.

I know that many women take Clomid... I know many use progesterone... I know all pregnant women are recommended flu shots, but if there is ever a next time around- I don't want any of it. I am getting the blood work done to see if there is an actual fixable problem, which if there is, I am willing to do what it takes to fix it. I do not want to be given "maybe try this" answers and just put things into my body that maybe shouldn't be there. I don't know how I'll feel if they tell me there is a fixable problem that I probably should have known about before Owen. I think my only choice is to just keep swimming, because I can't go back. No matter how hard that is to accept, I have to know that I did the best that I could and we made the right decisions with the information we were given.

While I don't know that I'm ready to try for a rainbow baby... I need to know if it's even a possibility and if I need to put all of my eggs in the adoption basket (which is a weird metaphor, but whatever) and never look back, or if there is that option for the future. We'll see.

Stolen

"How are you doing?"

"I'm alright"...."I'm fine"..."Doing OK"...

And if you'll buy that, I've got some other shit to sell you.

It is just amazing to me that things can not only stay bad... but more bad things keep coming. I truly do not have any hopes for our adoption certification coming through right now. I almost feel like... why would anything good even happen? It's like the universe is determined that my life is to be a shit hole until I die. I am NOT in a positive place and I do NOT feel any hope for the future. It feels like every time I think maybe I've made some progress, something else sneaks up from behind and knocks me over. I am so tired of trying to stand up. I think I have 50 dollars in my bank account right now, and I just got paid on Thursday. Where does it all go? There are a few other storm clouds in the works that I don't even want to write about because it's just too much. Let's just keep adding to the pile. Last year at this time, I had just about everything I ever wanted. I had a great husband... a wonderful home, we could pay all of our bills, and I had just had my 8 week ultrasound and heard my baby's heartbeat. Oh how time can change things.

I still have a great husband... but we are both heartbroken and lost. Our house feels so empty and large with a room that was meant for Owen that he never got to come home to.... I have taken a pay cut and we are barely scraping by on our bills... and I have no idea if we will ever have a child. HOW HAS THIS HAPPENED?!!!!!! I am so fucking angry and I have no where to put that anger. It literally feels like the world is on my shoulders. I catch glimpses of myself in windows or mirrors and I look like a hunchback. I am trying to stand up straighter and look more confident, but I always revert back. I got a haircut a few weeks ago... and someone said to me "Oh my gosh! You look so much younger!!" Now, this is a welcome comment for most people, so don't think that I took it as an insult... but I am only 26 years old. And that made me wonder... how old do I normally look?

I feel like my life has been stolen from me and I can't get it back.

Shadow Me

Recently someone asked me what was wrong... and I kind of didn't know what to say. I guess I feel like it's obvious what is wrong. My son is dead. Is that ever going to be ok? I don't know, I feel like I don't need to offer up any other reason for being in a bad mood or being sad. Life is sad, I am sad. I am sad when people talk about their kids because I don't get to be a mom. It is really fucking painful, I can't change that. It is like being stabbed in the heart every time I think about it... I don't get to be a mom. The closest I get is to talk out loud in an empty room and pray to God that my son can hear me. That's it. I don't know how to deal with that being it. I know all of the standard answers of why I'm supposed to feel better- He's in a better place... he can hear me when I talk to him... I'll see him again someday. Right now, that doesn't make the pain any better. I hurt all of the time and that is all I can see and feel right now. I try really hard to be upbeat and 'normal' most of the time... but sometimes my heart gets the best of me and I just can't take it.

I feel like there are two "me"s. There is the real me and the shadow me. The shadow me looks like me and talks like me and acts like me. The shadow me goes to work and does my job and is doing a really great job in my place. The real me is sitting at home staring into space wondering how my life got this way. The real me is so broken that I can't wrap my mind around anything. The only way I get along in my daily life is to write everything down. If I don't, I literally forget it 30 seconds later-because I.don't.care. I want to care. I'm trying really hard to care. I want to recreate the scene from Peter Pan where Wendy sews Peter's shadow back onto him. Then I could be one person again. I just feel like right now those two people aren't compatible. I can't go to work and function being the real me, and I can't be the shadow me when I'm alone. Someday I hope I'll get sewn back together.

More Crazy Things

I have had one more experience like the one I described in my last post... and it makes me feel- well, indescribable :/ I want to know that's he's around, but more than anything I want him to actually BE HERE. WITH ME. RIGHT NOW. argh

Anyhow, weird things happened this morning. If you have read any of my previous posts, you will know that I have this mental image stuck in my brain of Owen as a fox for Halloween. It is a beautiful image but it breaks my heart.

Today, a little girl in my class walks up to me and says "Mrs. Tomczyk, I wrote a book last night and I want to show it to you". I said "Ok, sure". This book is called "Little Fox". And it is all about a baby fox and she tells how this fox is just like a person... he gets put to bed every night by his parents... sometimes he gets in trouble... he gets happy and sad and angry just like a person... and then he eventually grows up and has a family of his own.

I almost had to leave the room after looking at this little girl's book because it blew me away that she was showing this to me. We are not studying foxes, nor have we talked about foxes in class. I really feel strongly that I was shown this story for a reason, and that my little fox is happy and growing up wherever he is. It breaks my heart into a million pieces that I can't be with him, but I am grateful for the signs.

Thank you sweet baby.

Owen's Spirit

I have had several strange encounters lately, and I have decided to believe that they are really my sweet boy letting me know he's here... and not that I am going insane.

When I was in the hospital on bed rest, my grandmother came and visited me. She handed me a penny. She told me that since my grandfather passed away (almost 17 years ago) he leaves her pennies when he wants her to know he is near. My grandfather's name was Owen... and that is who my son was named after. I held this penny the whole time I was in the hospital.

The week after Owen passed away... I walked onto my back patio, and there was a shiny penny sitting right in front of me. I decided that my grandfather (poppy) let Owen know that I would know this was him, and it would make me feel better. I have probably found 7 or 8 pennies since then, and I keep them all in a cupcake bank that my friend gave to me.

The last penny I found was on the morning that Eli passed away... I found it shortly before he left this earth. I know that this was Owen's way of telling me he was with Eli.

About 3 or 4 weeks ago... I began noticed that my desk in my office would shake when I was sitting here all alone... usually listening to songs that remind me of Owen or writing on this blog. Randomly, my desk would just shake... so noticeably that my monitor will sway back and forth just a bit. It will stop as suddenly as it started. I have tried to keep track of when this happens, to make sure it's not the washing machine, or the garage, or something like that. It usually only happens when I am home alone, and it is not caused by the laundry or the garage. I decided to believe that this is Owen too. I learned that it takes a very strong spirit to cause things to move in our world from theirs... and strong would be the word to describe my Owen.

When this happens I usually just look at his picture and tell him that I love him. But I decided that next time it happened, I would tell him how I felt, just in case he didn't know.

Last night I was laying in bed, waiting for Lucas to get home, when it felt like someone was nudging my leg. I turned over to push Mandy (my dog) away, but she was already at the bottom of the bed. I kind of turned to see if it would stop when I repositioned, but I could still feel something. Then, I heard a very loud cracking sound... it sounded like someone was on the roof. I was positive that no one was on the roof, so I decided Owen was checking in on me. I kept my promise, and I told him how I felt. It was the hardest I have cried in some time. Every time I would stop talking... the cracking sound would come again... so I kept going. By this time I was convinced that I was now the crazy lady who talks to herself in her room... but I guess I don't care. The cracking happened 3 times- each when I stopped talking. Then I told Owen that I was going to go to sleep, but that I hoped to dream of him and happier times. I heard one last very small cracking sound, and then no more. I stayed awake a while longer to see if it was just the house settling and if I really was crazy... but all I got was silence.

I slept better last night that I have in a long time.

If you don't believe in things like this.... that's ok. You don't have to, but I have to believe that he is letting me know he's ok and that he's looking in on me. <3

Four Months

Here I am, four months later. In some respects, it feels like 100 years... like that's how long he has been gone and I have been in this much pain. In other ways, it feels like yesterday when I was holding him and letting him go. I cried all the way home today. I can picture what my life might be like if it wasn't this hell hole. He would be a chubby little baby who smiled and laughed and I would be getting his costume ready for his first Halloween. I would also be sleep deprived and exhausted...and I wouldn't care because he would have been home by now. They told me that if things went well he would go home in September....

I hate that this is my life and I have to play out these imaginary scenarios in my head... and that when I do it feels like my heart is breaking all over again. I have no baby things in my house, I have no stories to tell. I have no little fox to take out on Halloween. I miss my Owen. I. HATE. IT.

Everything is still so hard, and I thought maybe 4 months later it would be easier. I guess I have more "ok" times... but the bad times are as dark as ever. It feels like I am suffocating. I want Owen back and I want him to fill this giant hole I have in my heart.

I miss you baby.

Stronger

People keep telling me how strong I am... that they wonder how I can just keep going. People don't realize that there aren't many choices in this regard. You can either go on living... or not. I really do think it is that simple at this point. I have to choose to get up every day, to go to work, to care about my students, to go through my daily routines. It is a choice, it is not automatic. I want to stay in bed sometimes. I want to not shower or brush my teeth. I want to lay and cry and hold Owen's blanket and yell at an empty room. But I choose not to (most of the time). Because the other choice is to not live. I have been in the place where I wanted to die. I wanted to be with Owen and I didn't want to have to live through this. I chose to go through it instead. I don't know anyone who has lost their child who didn't think... "God should have taken me too".

You do not realize how strong you are until there really aren't any other choices. The social worker told me I have a "pattern of loss" in my life. I lost both of my best friends, my grandfather, my son. Lucas lost his father, and both of his grandparents within one year of each other, and now his son. I think at some point... this "strength" just turns to hardness and coldness. I don't want to be a cold person. I would give anything to be "weak" and naive and ignorant and blissful. Strength is not an attribute I want any more of. I want to stop having to choose to be strong, I don't need any more character. What I need is some hope and some safety and some happiness.

Please God... do not send me any more strength building events until I'm 95. Thank you. Amen.

Baby Clothes

Lately I have had the urge to buy baby clothes for no one. Yesterday I saw a blue owl outfit while I was shopping. I love owls and I wanted it so badly. Is this insane? I didn't buy it, so I guess that's good. I'm tired of saying "I just wish". Because it doesn't matter. I have a dresser full of baby clothes that I "just wish" Owen was here to wear. What do I do with them? I don't really want to give them away because they were for him. I don't really want to keep them because they were for him, and he's not here. Not sure what to do with that right now.

Eli

What is wrong with this world. If this is how life goes then I don't know that I want to be a part of it anymore. My nephew, Eli, passed away this morning. He was 11 days old and he was beautiful. How can this keep happening over and over to so many wonderful and loving people? I just want to put my head in my hands and cry and cry and cry until such awful things don't happen anymore. You would think that I would have some words of wisdom or SOMETHING to say to someone when this happens, but I am rendered speechless. I know that there are no words that matter... nothing matters. Eli- you are loved and you are missed. I hope you and Owen are so so happy. I know we will all see each other again someday, that day just seems very far from now.

Eli's brother, Nolan, is doing well. Please send love and prayers for all.

RARRR

I am angry at everything. I am angry that I spent so many years being "friends" with people who are just the crappiest friends in the world. I got a call from a "friend" of mine two days ago. This person was in my wedding and one of my best friends for years. I have not heard from her since I found out that Owen was sick. Not when he was sick, not when he died, not after the funeral. Nothing. But 2 days ago.... apparently that was a convenient time for her to pick up her f*ing phone. I decided that I had one of two options. I could answer, and really let her know how I felt, or I could just ignore it and keep living my life without her in it, as I have been doing for some time now. I took option 2, and decided it wasn't worth the blood pressure spike to answer the phone. She didn't even leave a voice mail. It's almost laughable to think about, if it wasn't so f*ing disgusting. Even without answering the phone, I still walked around the house swearing at the audacity of her picking up her phone over 3 months after he's gone.... to what? Say hey? See how things are going? F OFF. That's what I would have said had I answered that call. I am not a big enough person to forgive that.

Insanity

A friend of mine said to me the other day, that if she were going through what I am going through, they would have to put her in a straight jacket. And I feel like that would be a welcome relief. Sometimes I just wish someone would put me into a coma and I could wake up when things were better, but then when would that be? Never. I don't know how to keep on doing what I'm doing. I keep having flashbacks of the NICU and of the doctor telling us he was gone. I keep watching the video I made over and over and crying and crying and I just can't stop. My poor baby with his beautiful swollen face I just love him more than I could love anything in my entire life and I don't know what to do. I feel so lost and like things are getting worse instead of better. My job is making me crazy and I fantasize about typing up my letter of resignation and walking out of that place and never having to deal with some of the petty and ignorant people who are so self-important I can't even bear it. Sometimes I physically feel like I will suffocate if I don't get out of that place. And then I leave and it isn't any better. I feel like I'm fighting to just exist all of the time and I am exhausted and I don't care about anything. It isn't a way to live and I am hoping that this isn't my life forever. Missing Owen is my life, but I don't want to be this person that I have become. I don't even recognize myself anymore and I don't know how to change, I don't know how to feel better when I can still feel my son in my arms and remember what it feels like to walk out of the hospital without a family. It is ridiculous to be trying so hard to just get up every day and float through my life... and I am, trying. I have never tried so hard at anything in my entire life. I have to tell myself... you should do this, because this is what a normal person would do, but everything is work. I am hoping and praying that things get better and that I can be in a place where it doesn't feel like I'm being punched in the stomach all the time. I just love him so much and life is so unfair.

Owen's Video

So, I spent the last two days making a video of just about everything I have of Owen. I put them to the songs from the funeral, the last of which being our wedding song. In some ways I feel very good about making this video... I like having everything in one place where I can see it at one time. At the same time, it makes me sick that I used almost everything I had and it is less than 10 minutes long. And I can't get more. I don't know... the past few days I just feel like I am absolutely losing my mind. It feels like June again.... I am having NICU flashbacks and I can't stop crying. I don't know what else to do other than just be "in it". This is why I made the video now... I needed to surround myself with him and with my own grief. I don't know how else to be, but I do sincerely hope I'm not insane. Right now I am wishing I had another 3 months off of work and I could just be. This is not in the cards, so for now I'll just keep watching my video.

Fox

I was going to dress Owen up as a fox for Halloween. All of the Halloween things are out now, and I can't get the picture of him as a fox out of my head and it is breaking my heart every time I think about it. He would have been the cutest little fox.

Pieces

I went back to the place where Owen died yesterday. My nephews were born very early yesterday morning, each weighing in a 2 pounds 4 oz. They are doing very well, and are absolutely beautiful, but obviously have a long NICU stay ahead of them. They are about 3 or 4 doors down from room 220, where I last saw my baby. No baby is in the room now. I'm not sure if that would have made it easier, harder, or if it wouldn't have mattered. Part of me almost walked in and sat on the couch and cried, but instead I just stared at it. The smell of the NICU hit me just as hard as seeing that room. Baby smell... his smell.

Today has been one of the most difficult in a long time. I went to pick up Owen's things from the cemetery, as we do every month, so that the maintenance crew can mow and spruce things up. While I was there, I was amazed by how many dragonflies were there. I saw at least 7 or 8, and had never seen them at the cemetery before. I hope this was Owen telling me he was there.

Not 3 hours later, I went to get frozen yogurt with my mom and sister, and as we're walking up to the shop there is a little boy standing in front of the door. His mother says to him, "Owen, get out of the way, these people are trying to go in". So he scampers out of the way. Knife- right in the heart. As we ate out yogurt outside, that same family was leaving...
"Owen, slow down... Owen, come back here!"... I wanted to say the same things to my Owen... please, come back here. Those people got to keep their Owen, and I just want to keep mine too. As soon as I dropped off my mom and sister, I cried all the way home.

It seems like just living this life, without him, is like sitting around and waiting until the next thing happens to re-shatter my heart into it's millions of tiny pieces. I can't keep doing this over and over, it's too much.

Just Sad

Blah. This has just been an incredibly stressful week. Adoption things and more to do at work than can possibly get done. And it makes me really disgusted with myself that I'm letting it get to me. It's like I'm letting all of the unimportant things creep back in and I don't want to. I MISS OWEN. I want to hold him in my arms and kiss him and that's all that matters. It is horrible that I'm getting so used to this life without him that other things can even touch me. Nothing should be able to touch me except for him and this horrible awful pain inside of my heart. I feel so run down and so exhausted from dealing with everyday things and I don't know how to keep on doing it. All I really want is just to go to bed and not get out until someone gives me my baby back. I am so desperate just for the smallest piece of what could possibly be happiness or hope- and there isn't any. There is no hope for me to ever see him again or know him or hear him call me mommy. I'll never get him back and the finality of it all sometimes hits me all over again. I'm not just waiting for him to get better... I'm not waiting for anything, it's all over. My hope for my life is over. There will never be a time when this didn't happen. It's not like I can just get over it and put it behind me. It's over and it's forever. I'm just me and there's nothing special about me. I'm just a sad sad lady with a dead baby and that feels like all I will ever be. And everything is so hard and I'm just so tired. So so tired and so so sad.

Certainty

I miss Owen. I miss him every minute of every hour of every day. Sometimes the pain is worse than others, but the missing is always there. Despite this missing and this horrible horrible thing that has happened to us, we still want a family. It is very hurtful to hear someone say to me that she's concerned we're just trying to replace Owen. Only someone who has never lost a child could say something like that. He was a person, not just "baby". You can't replace a PERSON. I have written about this on a previous blog, but I just don't understand how someone can think that. I also don't understand the idea that there is a "convenient" time to want or start a family. If I could somehow switch off this undeniable wanting for a family until a more "convenient" time, I would do it. I don't believe such a time exists, however, so what would be the point? I hear, "Well, it will be easier in a year". Will it? I don't know. I can't predict the future so well as others apparently can.

Her hurtful words only continue, to tell us that we do not seem like a strong couple, but very separate. Again, I don't have any words for this because how does sitting across a table from us for an hour give you any indication of the status of our marriage? The thing is, I can't even explain this. I can't come up with any explanation to tell anyone as to why we would seem this way. I feel that we act much in the same way as we did before Owen. We have never been lovey dovey... we don't typically show affection in public. We're not hand holders. Not even when we were dating. This does not indicate that something is wrong, it is just who we are as people. I don't know if we are supposed to put on some sort of show for this woman, or if I should just go with my gut and tell her this is just how it is. She implies that losing Owen has damaged our marriage. I agree that we could have easily gone there. I explain that this is one of the main reasons I went to therapy, so that I could deal with us grieving differently. Since that time, things have come together in a new sense of normal. Not the old normal, but still normal for us as the new people we are. We have always been ones to just let each other be. Maybe we are "separate"... why is this a problem? We know that we love each other, but we are independent of each other also. This is not a change... this remains the same, except we have an even deeper connection of this incredible love for and incredible loss of Owen.

I would not be proceeding with this adoption if any part of me thought it wasn't for the right reasons. I am conscious of the fact that sometimes people can try and use a child to fix things in their lives. I absolutely know that a child is not capable of fixing anything. A baby's job is to be a baby. Not to fix a marriage or to "make up for" the loss of another child. If I believed that these were my motives I would be ashamed and I would not proceed. I know that my motives are good. I want a baby so that I can love him or her. I also KNOW with 100% certainty that if Lucas was not in this for the long haul, then he would not pretend to be. There is no amount of persuasive speech or tears or discussion that can make that man do something he does not want to do. He does not pretend, he does not do things just because. It is one of the reasons I am in love with him. It is also one of the things that annoys me most at times. But I am glad for it because I can be absolutely sure that he is in this. I have no doubts.

I know with my whole heart that Owen knows we love him. He knew that for every second of his too-short life. And now I believe he knows with a kind of understanding that those of us on Earth can never hope to achieve. I also know that happiness can live somewhere in the future for us. Not the kind of happiness we once dreamed of, because Owen will never be here with us. Part of my heart will be with him until we're together again. But there must be some kind of happiness that can co-exist with the missing of Owen. I have love in my heart that I know belongs to a child who is able to stay with me. I just don't have that child yet. The love I have for Owen belongs to him and no one else. This is all very clear to me. I am not confused. The only thing I am unsure of is how to prove all of this to someone else.. someone who doesn't know me... someone who can't understand what I feel for my son. This is what I need help with, not the other.

No words...

I feel like all of the hope has been sucked out of me. Like I am being punished for loving Owen so much. Can there be no joy in my future because of all the pain my past has brought to my heart? I don't have words or any metaphors strong enough to describe what this feels like.

Friends

When something really awful happens, you find out who your friends are, and who they definitely are not. I think I can count myself in the fortunate column in that most of the people I have chosen to have in my life really came through for me. They have been amazing- going above and beyond what I could have imagined to try and make my life easier. I hear stories from other moms who have lost their babies and the things that their "friends" have said to them... and I am glad that I cannot imagine my friends saying anything like that to me. You all have been my anchor, keeping me from truly losing my mind. I cannot thank you enough for your generosity and your support. I have to tell you that I still need it, I don't know for how long, but I am grateful to know that I can call on you and know that you'll be there. Some of you actually got to meet my sweet boy, and I thank you for that too... for knowing him, for not being afraid. For those of you who did not get to, I thank you for not being scared to speak his name, and for acknowledging his importance. It means more to me than you'll ever know.

An even more surprising thing than the kindness of my friends is the kindness of strangers or acquaintances. I remember the day before Owen's funeral, Lucas and I went to Kinko's to have one of his 3D ultrasound pictures blown up. (We had a few pictures from the hospital, but in this particular ultrasound photo he looks like he's laughing, and we wanted a happy picture). We told the girl at the counter that we just wanted it as big as possible without it being all fuzzy and Lucas told her it was for a funeral. She did an excellent job and gave us several copies on very nice paper. When she handed them to us she told us she was so sorry and that there wouldn't be a charge for the enlargements. I don't know why, but even typing this story now brings me to tears, as it did that day I stood crying in Kinkos. We desperately needed that small kindness on that day and this completely random person gave it to us.

Similarly, acquaintances I have known casually showed up at Owen's funeral... took off of work and came to mourn a baby they had never met and to show us that they cared. It is hard to express what that meant to us. Others have shared their own stories of the loss of their children with me... letting me know that I can survive this and I can have happiness again someday. Also letting me know that it is ok to be sad and angry.

Old friends... people I haven't spoken to in 10 years or more sending me cards and messages expressing how sorry they are. It makes me feel better about humanity reading these heartfelt messages from people who didn't have to, but took the time to tell me that Owen meant something.

New friends... my new safe haven of other baby lost moms that I can tell everything and anything to without the fear of judgment. I could not survive this without you. You are my lifeline and thank you for letting me feel how I need to feel and hurting along with me... praying for me even though your heart is as broken as mine. You all are some of the best people I have ever known... even though I haven't met you. I have hope in my heart for all of us and I know beyond a shadow of a doubt that we will see our children again someday.

This entry is a big thank you to all of you... I know that you know who you are.

Thank you with all of my heart,

Whittney

Seriously?

I find myself asking this so often these days. SERIOUSLY???? This is really my life? This is really how things turned out?! How can this be it. How can there not be an appeals process for this horrible things. Even serial killers get to appeal their fate... but I can't appeal this decision to take my son away from me? I know that I can convince God to give him back if He would just LISTEN. I feel so alone and so abandoned. I don't understand why this is my life. I could give a resume of my good deeds and deserving characteristics. I can explain why I deserve my son and why other horrible people do not deserve their children.

I also just can't care about other bullshit drama. I do my job at work. I like to think I do a pretty good job at that. But that's it... it's my job. I do what I'm supposed to and I don't give a shit about the drama. Whatever you tell me to do, fine, I'll do that. I don't have the energy to get angry about things that seem so insignificant. Nothing they can do to me at work even holds a candle to the hell that I am living in every day. That's how I feel. I am holding on for dear life to the hope that we will find a baby to adopt and we can fill our hearts with some joy to mix in with the constant missing. That hope is keeping me going. I want to do better and be better for my husband and for Owen and for myself. It is just slow slow slow.

I know in my heart that Owen is guiding us on this journey and that he will help us to find the right child for our family and the right brother or sister for him.


Oh how I miss him.

Baby

Oh Owen. I miss you so much and it hurts me to think I am forgetting all of your details. I hung your pictures this weekend and I hope that you like them. Now I can see you before I go to bed and when I wake up. I can't stand that the world keeps on moving without you here. I love you so much and I just feel like I can't breathe without you. It seems so endless... like it will just be so long before I can see you again. I just want to be with you and I want to hold you and smell you. I worry that when I get to see you again you'll be all grown up and I won't ever get to hold you. I don't know how things work where you are. I just want to be your mom and I want you to be my baby. I think I can feel you around me sometimes when I'm by myself. I hope that it's you and that you check on me. I am trying to be better, and I know your daddy is trying so hard. You would be so so proud of him. You have my heart. I would do anything to just make things different. Sometimes I just sit and wish and wish that there was just no such thing as CDH and then you would be here with me and I would be getting to know you. I could see you smile and hear you laugh. I would give anything I possess to hear you laugh. I just want you to know how much I love you and how my heart breaks every time I think about my life without you. You are with me always always always.

With all of my heart

Mommy

Far Away

Owen is so far away from me. I don't know what to do with myself. My heart is with him and yet I am stuck here. I had a dream about him the other night. We were back in the NICU, but everything was different. He was awake and looking around, and it was hopeful. Waking up was hard. I feel like sometimes I am just a walking talking zombie. Sometimes I am in the middle of a conversation with someone and I realize I have no idea what we are talking about. I just can't focus on anything for too long, because it always comes back to him. No topic is "safe". I was talking about mattresses with a friend of mine today, and it ended up me talking about hospital beds and magnesium sulfate. I'm sure I am a joy to converse with. I don't know how else to be. These are the only things that I think about and I feel like I can only fake it so far, and then it just spills out.

I really do want to feel better. I just can't.

Running

I wake up, go to work, come home, work out, shower, watch tv, go to bed. There is very little time in there for being sad. Sometimes it gets me in the car on the way to work, but I carpool for most of the way, so even then I am running away from it. I have a picture of Owen and Lucas on my desk at work... and every time I see it it makes me feel proud that I have an amazing husband and the bravest son in the world, but it also hits me right in the heart, just for that second. I am sitting in a classroom full of healthy children, and I just want to understand why their parents got to keep all of them and I didn't get to keep Owen.

I would have been the best mom. And I would have been a good mom even without the huge struggle to keep him here. I know this in my heart. I didn't need the struggle to appreciate him. I knew he was a miracle even before all of this. I was ok if I never had another child after him... I didn't need one... I just needed him. And as I sit here physically exhausted, I know that I'm just running from my sadness. I am not "better" or "happier"... I am just getting better at pushing it someplace else. I think I am going to regret this immensely this weekend when I finally have to stop because I have no place to go. I guess I will worry about that then.

Owen's story

I feel like it's June again and I can't stop replaying my days in the NICU over and over again in my mind. I am right back there in that place. I feel like I was more afraid before he was born than after he was born. Of course it was terrifying seeing him hooked up to all of those machines, and it hurt my soul to know he had to be on so many drugs, but he was amazing everyone, and I was more proud of him than I was scared. When they delivered him he threw his arms into the air and let out a small cry. For those of you who don't know, most CDH babies don't make a sound when they are born because they cannot breathe. I just knew this meant he was going to fight this. I didn't get to witness this event because I had to be out for his delivery, but I think he was trying to give them a story to tell me. I cried up up until the point they put me under, because I thought... when I wake up he could be gone and I will never have seen him... but he fought for me... he made it so that I could meet him and know him.

They doctors told me that his delivery "went better than they could have ever imagined"... we were so proud. The stayed stable for two days.... they told us they thought he had an infection, which meant they weren't going to be able to do his repair surgery... but I just knew they were wrong. They told me when I went into preterm labor that I had an infection, and that they would have to deliver him that night. They were wrong then, too... and I kept him safe inside of me for 4 more weeks... again.. pride for both of us, I just knew that we were going to show them. He didn't have an infection, and they did his surgery two days after he was born. It was very dangerous because his liver was in his chest, and the liver has a tendency to bleed during and after surgery, and he was on heart and lung bypass, so his blood couldn't clot. Again, they said the same words to me....the surgery went better than they ever could have imagined... no bleeding, and the hole wasn't as big as they thought it would be. I have never felt so proud of anyone in my entire life as I did for my son at that time. I knew the road was long... but the only life-threatening hurdle we had left was getting him off of the bypass machine. They told us he was doing great... that he wasn't out of the woods, but he was fighting. He looked so good... if he wasn't hooked up to the machines you wouldn't even had known he was sick... he was pink and beautiful. And it gave us a false sense of hope. I was thinking.. maybe he could tell them to take their tiny percentages and their statistics of survival and stick it. My baby was going to show them all and I was going to take him home. They even let me change his diaper... twice! I am so thankful now that I have that memory to hold onto. Everyone kept telling me how great I was doing after having a c-section, but they didn't understand that whatever I had to endure didn't matter. He was the only thing that mattered.

Lucas wrote him a special song the day that everything went all wrong, and my heart still breaks into tiny pieces when I think of that and us knowing that we were going to have to say goodbye. On his 5th day of life, I walked into his room, and I knew that things were different. Every other day when I walked in I felt hope when I looked at him and saw my beautiful son. This day... I looked at him and I knew it was going to be a bad day. The doctor kept telling me all of the things I saw were "run of the mill" for ECMO babies. His hands and feet were completely purple with bruises.... all the way past his wrists. He looked like he was in pain and was requiring more medication. They told us this day that they believed he was having seizures. Seeing your child have seizures when you can't hold him or comfort him... that is one of the worst feelings I have ever experienced in my life. They had to hook him up to a brain scan machine which consisted of what looks like hundreds of wires. We couldn't hardly fit in the room with all of the machinery. They confirmed that he was having seizures and ordered a head ultrasound.

This ultrasound revealed our worst fear. Owen developed a bleed in his brain from the ECMO. We knew this was a risk of the ECMO, but we had no option other than to utilize this potentially life saving piece of equipment or to let him go right after birth. The bleed was a stage one, and they said that it could possibly stay that size and not cause him any real problems. I never believed that this would be the case. I knew that he was done fighting and that it was just too much. They said if the bleed progressed we would have to talk about what to do then. A stage 4 bleed would mean irrevocable brain damage. They did another head ultrasound that evening which showed it had progressed to a level 3 bleed. We elected to take Owen off of the bypass machine as soon as possible, and to see if his little lungs could survive on just a ventilator without the use of the bypass. They told us there was very very little chance that he would survive because his lungs just weren't ready yet.

I was swearing quite a bit in the hallway of the NICU so they put us in a private room. We had agreed long before his birth that we were not interested in doing things "to" Owen in order to keep him alive... only things "for" Owen. At this point it was very clear that he was letting us know he was done fighting. We told the doctors to give it everything they had with the ventilator, but that it was time to stop the ECMO. We had the hospital chaplain come and baptize him and pray for our miracle. They weaned him off of the ECMO and turning up the ventilator throughout the night as Lucas and I "slept" in his room. I just kept staring at the machines willing his oxygen sats to go up... I wanted my miracle... I wanted God to appear in that room and fix all of it.

The next morning they told us the ventilators weren't doing enough, and we were going to have to say goodbye. I finally got to hold my son when I was telling him goodbye and I hate that. I hate that we have no happy mother and son cuddling moments. We each got to hold him while he was still on the ventilator, and our families got to come and and tell him goodbye. He continued to have small seizures even with the medication and it was breaking my heart. He was so sedated to keep him out of pain that he did not open his eyes during this time, and I hate that too. I wanted to know that he knew it was me holding him, but I will have to hope that he knew my voice. In the end it was just Lucas and Owen and me. We held him together and told them we were ready. I held him close and told him that I loved him and that he wouldn't be in anymore pain. I told him not to worry about us and that he didn't have to struggle and fight anymore, and that we would be ok. I talked and talked to him. I wanted to make it easy for him to let go. He fought so hard and I understand now that he did that for us. He knew that we needed him for that time. I did not cry until they told me he was gone.

We stayed with him for quite a while and had photos taken by a wonderful photographer from a non-profit who specializes in these situations. She was compassionate and wonderful and has given us the things I now hold most dear which are his beautiful photos. They told us we could stay as long as we wanted while they did his foot prints and keepsakes. But I think we both knew he wasn't there anymore. We had to get away from this place where we had lost him. We kissed him again and walked out of the NICU. That was the last time I saw Owen.

We elected not to have a viewing before his funeral. I needed to remember him as the warm, soft, sweet smelling baby that he was and I wanted that to be the last picture I had of him in my mind. I do not regret our decision and I hope that it stays that way.

We went home to our big empty house with an empty nursery. I hate that he never got to come home. I want to say that I hate everything about this story.... but how can I? I got 6 precious days with the most amazing person I have ever had the honor of knowing. Not even that, I got to be his mom. I hate the ending to this story. I hate that he's not here with me and that we didn't get to show them all. I hate that they were right. But I love Owen. I love everything he was and is and I love that he fought to be with us. This is his story, and I just needed to tell it in its entirety. This is not the end. I will make sure of that, he will live on and he will not be forgotten. We will ensure that other children are helped because of Owen's life and his strength and bravery. The name Owen means "Young Warrior". We did not know this when we chose his name, but it is the most perfect name for him that there could ever be. He was a warrior, and now he's his mommy's perfect angel. I love you.

When you come back down

"When You Come Back Down"
-Nickel Creek

You got to leave me now, you got to go alone
You got to chase a dream, one that's all your own
Before it slips away
When you're flyin' high, take my heart along
I'll be the harmony to every lonely song
That you learn to play

When you're soarin' through the air
I'll be your solid ground
Take every chance you dare
I'll still be there
When you come back down
When you come back down

I'll keep lookin' up, awaitin' your return
My greatest fear will be that you will crash and burn
And I won't feel your fire
I'll be the other hand that always holds the line
Connectin' in between your sweet heart and mine
I'm strung out on that wire

And I'll be on the other end, To hear you when you call
Angel, you were born to fly, If you get too high
I'll catch you when you fall
I'll catch you when you fall

[Bridge:]
Your memory's the sunshine every new day brings
I know the sky is calling
Angel, let me help you with your wings

When you're soarin' through the air
I'll be your solid ground
Take every chance you dare

I'll still be there
When you come back down
Take every chance you dare,
I'll still be there
When you come back down
When you come back down

I heard this song on a friend's blog, and burst into tears. I have since downloaded it and listened to it about 15 times. I miss him so much I can't even believe it. I thought it would get easier. I have no other words today... just the memory of him washing over me.

Work, Work, Work

Ok, so I went back to work this week. Parts of it are good... parts of it are very bad. I've only been asked once, "Hey, how's the little one doing?". And I survived. I am thankful that almost everyone already knew, because I think those words, "oh, he passed away" are the hardest to get out. They ring in my head hours later, because I hate that I had to say it out loud. Partly, because I don't believe it.... there was nothing passive about losing him. He fought so hard and we fought so hard and it feels like he was taken, ripped away from us... not "passed away".

I am dreading Monday night. If I could just make it so Monday night didn't exist, I would do that. It is "meet the teacher" night... and I will be seeing not only my new students, but my students from last year as well. I was out of school the last 3 weeks before summer on bed rest, so I didn't get to say goodbye to those students, and they don't know that Owen is gone. I just keep playing the scene of these children running up to me at school on Monday night and asking me how he's doing, and their little faces when I have to tell them or if they see me cry. I tried to get a letter sent out before this event, but that did not happen, so I feel like it's just something I am going to have to survive. I am so angry because it's so unfair that I have to do this. I can't even keep it together when adults ask me about him and I don't know how I'm supposed to do this. I just keep telling myself it's only one day, and it won't even be close to the worst day of my life, but I still don't want to do it.

I want things to be easy and happy, and I want my son back. When people ask me how he's doing I want to be able beam at them and tell them how great life is and how wonderful it is to be a mommy. I would even take being able to complain about late night feedings and lack of sleep and constant crying. I would take any of it if I could just have Owen.

Being around people with kids is hard sometimes. When he died, I thought I would be very angry or resentful of people with their healthy children, but I'm not. I don't miss their children... they are not who my heart hurts for. I do feel an extra surge of anger, I think, when I hear stories of horrible parents, or people who take their healthy children for granted. It is hard to hear the tales of parenthood though. I don't get to hold him and I don't get to raise him... I don't get to sign him up for preschool or take him to his first day of kindergarten. There will be no skinned knees to bandage, no training wheels to take off. Again, I don't feel angry at anyone... and I don't want people to feel like they can't talk about their kids around me... that would be quite unfair. I understand that your children are your life. It does make me sad. I want to be a mother so badly. My heart wants to explode with how much love I have for Owen, and I can't give it to him. I can't tell him that I love him and I can't read him stories or hold him close to me. And this is why my heart is broken.

Failure

Anyone who knows me would agree that I don't really do "failure"... at least not in my academic or professional life. But it feels like in my personal life, failure is all I know. My body has failed me twice in miscarrying two pregnancies. The first time I was so naive... I really didn't even think about it as a possibility- as I said, not used to failure. So that first miscarriage hit me really hard. The second one I anticipated. It still upset me, but I did not hold much hope that it would last, and it didn't. Then my body failed me once again... I tried with everything I had to get pregnant again, and could not for a year and a half. Life just felt like a black hole of failure as a woman and as a wife.

Then came Owen. When I got that positive pregnancy test, I was determined not to fail. I started taking progesterone just like the doctor said, and low and behold, I made it through the first trimester. I was still scared every day that I would lose this baby, and I was thankful for every week I made it past, and every dr appointment where I got to hear his wonderful heartbeat. I started dangerously thinking... this could work, we might actually take a baby home. That is how I thought my whole pregnancy... "This might actually work!" I never got the naivete back... I never felt blissfully ignorant. I thought... maybe after I reach viability I can stop worrying so much. And at exactly 24 weeks and 1 day, I found out Owen had CDH and very possibly might not live. It was like the universe slapping me in the face and saying "see? you are a failure".

The end of my pregnancy is somewhat blurry to me now... I don't know how I survived that long knowing that he could (and probably would, according to many doctors) die after he was born. I feel like I have been grieving his loss for so long, but I always had this hope that maybe I deserved this miracle... maybe we would be on the other side of those statistics. Again... failure. I was unable to keep my baby safe, unable to protect him. The only thing I know in my heart that I did right, was to let him go when we did. He was in pain and I know that we had to let him go.

Now that he is gone I feel like I don't have anything to "live" for. I'm not saying I want to die, I just don't have a reason to do things. While I was pregnant, I had to keep going, for him... there was no other choice.. I had to do the best that I could for him. After he was born and was in the NICU... I had to be strong and I had to believe... for him. I held it together until they told me we had run out of options... and even then I left the room so he couldn't hear me cry. I didn't lose it in front of my son until he had left this Earth.

Now, what do I do? Why should I eat or go out or really do anything? I feel like I keep screwing everything up and like I'm letting people down because I just can't get it together. I try and tell myself I need to go about my life for him, so that he'll be proud of me... but it gets harder to believe it the longer I am without him. He was my source of strength and now he is gone and I feel like I'm broken and I don't know how to do anything but fail.

And... not but

Lucas & I have started on a new journey in that we have applied to become certified to adopt. I know that my babylost friends can understand, but I feel like maybe I should explain to those who have never felt the pain of losing a child. I miss Owen with all of my heart... he was my everything, and now he is gone. This terrible thing has happened, and (yes, "and"... not "but") I still want a family. I have wanted a baby for over 3 years... it was all I thought about for 3 years and I believed that all of my hopes had been answered with Owen, and in the happiness that he brought me, they were answered, but cut unimaginably short.

There is no "replacing" Owen... and I feel like some believe that is what we are trying to do... and that is unreal to me. No one else will ever be Owen. The decision to adopt has come after many many tears and discussions and much grief. The tears and the discussions and the grief are also far from over. People have told me that I need "time to grieve" the loss of my baby, and while time is a friend to me, grieving is not something that just stops one day. It is not as though, in a year, or two years, I will suddenly be done grieving. There will always be times when someone asks me how many children I have, or every Christmas and holiday, or every family photo, that I will be grieving. And even with all of this pain and the hurt, I cannot stop my want for a child that gets to stay with me. And the happiness that having a child will bring me, will never take away the pain that I feel over losing my baby or the immense love that I feel for him. I imagine that they will exist together. There has not been a minute of my life since finding out I was carrying Owen that I have ceased to think about him. I do not imagine that there ever will be. And I still want a family. And I still want the hope of bringing happiness into our lives at some point in the future. And and and... never but. I will never leave him behind... he will be with me always.

Letters

Sweet baby,

I just want to tell you I love you and I wish you were here. I am trying really hard to get better. I think you played a song for me today and I loved it. I want to teach you to read and buy you school supplies for kindergarten. I want you to be here. I think that you are leading us towards helping another baby. I hope that is what you want us to do. I really miss you. I sleep with your blanket every night and it makes me remember holding you. I would give anything to hold you again. And to kiss you all over and touch your nose. I guess I don't really have anything new to say. I just needed to say I love you so much.

With all of my heart,

Mommy


My baby,

I hope you were looking down on us yesterday. We picked out those songs especially for you. The last one was your daddy's and my wedding song, and now it will be a song for our family. I hope you saw how many people came to say goodbye to you and how many lives you impacted. You are so amazing. I still miss you terribly. Your daddy and I are coming to visit your grave today. I know you're not there, but maybe you could stop by and look in on us. Your daddy is being so strong and I am so in love with him. You looked just like him, you know? Except you had my ears. I will miss your little face and your little chubby body for as long as I live. I would do anything if I could hold you again. It just wasn't even close to being long enough. I wanted to see you go to kindergarten and graduate high school and college and get married and have babies of your own. Six days just doesn't even come close. I am trying to be strong and make you proud... it's really hard. My feelings for you are overwhelming. I know you wouldn't want me to be sad all the time, I just don't know any other way to be right now. I will spend the rest of my life trying to be worthy of calling myself your mommy. Keep on laughing and playing up in heaven. That is how I will try and think about you. I love you for always.

With all of my heart,

Mommy


I hope you are getting used to everything up there. I am not used to everything down here. I feel like we are just waiting for you to come home and it's really hard to understand that you won't be doing that. Maybe you were listening in on your daddy and I talking last night, but we talked about our future and having more children. I hope that that is ok with you, and even makes you a little happy. You would be a big brother... and I promise you we will tell them all about you and how brave you were. Part of me feels like I never want to have another baby because you were supposed to be my baby... I was ok if you were the only one. The other part of me feels like that's not how my life or your daddy's life is supposed to go. I think we're supposed to have children. I hope that you agree with that. I want you to know that we will never be able to replace you or the love that we feel for you. You are our first baby and our son and I can't even explain how my heart feels about you. It is going to take a long time, maybe even my entire life until I see you again, to not feel this sadness anymore. You are not causing this sadness, just the loss of you. You brought me more happiness than I ever knew existed in this world. Seeing your eyes and having you grab my finger are two of the happiest moments I think I'll ever feel. I fell in love with you so fast, and I hope that you fell in love with me. I was in love with you long before we met though, and I remember singing to you in the car while you were safe in my belly. I wonder if you remember that too. I will play you songs and sing for you forever, so I hope that you are listening in sometimes. You are the most precious thing in this world to me and I need you to know that. Say hello to everyone up there, and I hope they're taking good care of you. Love you forever and always.

With all my heart,

Mommy

Back to "normal"????

It seems like one of the most unfair things about losing Owen, is that our day to day lives haven't changed. Everything is the same it was before, except for us. We are sad and broken, but nothing else is different. We make plans, we see movies, we are still "childless". It feels like my entire world should be ripped apart and nothing should be recognizable, because how could the world that I live in stay in tact when such an unthinkable thing has happened? My son is dead. I cry over his pictures and I try to remember what it feels like to touch him, but he is not here. Why has the world not gone out of its orbit? But it hasn't... "life," or some twisted version of life, goes on... every day it just keeps going. People have asked me if I'm ready to get back to "normal"... meaning going back to work as the school year starts soon, and I just don't know how to answer that question. I don't believe there will ever be a normalcy about my life again. Normal would be for me to be exhausted from middle of the night feedings, not exhausted because I can't sleep because I'm thinking about my lost baby. I guess my new version of normal is this...ready to cry at any moment, envying other people with their children, and treasuring my too-short time with my son. I believe I just have to learn how to live without being a whole person. A part of me will always be missing and there is no way to fix it. I know in my heart that I am meant to be a mother to a child who can stay with me, and I therefore know that someday I will be, but I just know that Owen has taken a piece of my heart and my soul to Heaven with him, and I won't get it back until I see him again. There is no "normal" about this.

Anger

Anger is an absolutely overpowering emotion. I am so angry right now that my head feels like it will explode. I want my baby, I NEED my baby, I need to know him and touch him and kiss him and teach him things and for him to know that he is my everything. I don't know what to do with myself and I feel like I am losing my mind. I can't comprehend what has happened and that I will never see him again... EVER. My sweet faced little boy is gone from me forever and I just want to be with him and for him to be with me. If I could just have him back I would hold him and never let go. Why has this happened to us and why is he gone. He could have made it if just this or just that and nothing that we did MATTERS... none of it matters... not the magnesium sulfate and not the steroids and not the EXIT procedure and not the ECMO and the months and months of tests and MRIs and ultrasounds and worry and praying to SOMEONE, SOMEWHERE to just let us have our son. NONE OF IT FUCKING MATTERED and I'm so angry and feel so alone and empty and I would give ANYTHING in this world to just hold him again and to tell him how much I need him and to ask too much of him to be brave and stay with me a little longer.

How can he be gone, just gone. I can't breathe it hurts so badly. I just want someone to make the hurt and the pain and the missing him better, I want someone to hand me my healthy son and tell me this was all a nightmare and I can take him home and love him like I'm supposed to. I'm supposed to love him and protect him and I can't because he is gone and I am here. I don't want life to be over but I fear that it is.

6 days

Wondering if people on the street
can look into my eyes
and see that I have nothing left
I have given everything I could give
and was given 6 days in return
How could this possibly be even

All of my love and all of my heart
have been sacrificed
and I got to be a mother for 6 days
Two diaper changes
15 minutes of holding
A handful of kisses
One glimpse of royal blue eyes
And too much pain

I fell in love in 6 days
and now I am broken into pieces
My everything and my sunshine
has been taken away
All I have left are empty arms
An empty belly
And a heart full of love that can never be given

Fireworks

This weekend was particularly difficult, and I don't think I expected it. First, I had my 6 week postpartum doctor visit, and it is very hard to go back to the doctors office where I got to see Owen (via ultrasound) and hear his wonderful heartbeat and know that all of that is gone. I also had to see my least favorite doctor of the practice, and he told me I should wait at least a year to try for another baby. I don't know that he's wrong, I just don't like people who don't know me telling me what to do. He told me that if I got pregnant any sooner I would be nervous during the pregnancy. I actually laughed out loud, because if he knew me he would have known that I would be nervous regardless, and there is no magical time line that will cure me of my anxiety issues.

Lucas and I went to Tucson for 4th of July and for his grandpa's 90th birthday celebration. I kind of expected that seeing lots of family might be hard for me, but I didn't expect the tears to come at the fireworks show. As I looked around at the hundreds of people at the fair grounds with their babies, I just started getting so angry that Owen wasn't there for his first 4th of July. I pictured his sweet face in my head and imagined the cute flag outfit that I would have dressed him in. This image stuck with me the whole night and I cried all the way through the fireworks finale. I hope that he looked in on me and saw the fireworks from heaven.

I did pretty well at Grandpa's party and was feeling a little proud of myself, until it was time to take family pictures. The picture of all of the other great-grand children with their great grandpa proved too much for me to handle. I miss Owen so much I can't even stand it and it's so unfair that he wasn't there to be with his family. I should have been able to show off my beautiful son to everyone, and instead I carry around pictures of him in my purse so I can remind myself that he was real when I'm by myself. All of my strength dissolved and I cried for an hour.

Sometimes I just can't wrap my head around the fact that all of this actually happened to me. How could such a horrible thing actually have happened. He was here and he was mine and now he's gone and I can't ever hold him again. I try and close my eyes and remember exactly how it felt to hold him and to kiss his face because I'm so afraid that I'll forget. It hurts to talk about him but I think it hurts more to gloss over it all like it didn't happen. I don't know... sometimes it is nice to act like my old self, but sometimes I want to remember him out loud and tell people about him. He was my world and now that world is gone and it hurts.

I miss you baby :(