This week, past and present

This week has been ridiculous.  I have been having more frequent flashbacks to where I was this week a year ago, how things happened, how I felt.  And this week has brought on its own set of things that hurt.

Last year at this time, I was headed back to the NICU after my one night at home since Owen was born.  I planned on sleeping there that night.  When I had left the day before, he was doing ok... recovering from his surgery, and they were attempting to get his lungs to inflate.  They had determined that he was having seizures, and they didn't know why.  They did not indicate any type of 'worst case scenario,'  it was just something that they would continue to investigate, and he was put on anti-seizure medication. 

When I walked in the room on this day, I knew that things had changed, without speaking to anyone.  Usually, when I walked (or wheeled) into his room, I felt hopeful... proud.  He had been flying through everything the doctors said would be so difficult, and he did it beautifully.  But this day...  he looked different, like he was done fighting so hard.  His hands and feet were so badly bruised all the way up his ankles and wrists.  It literally looked like he had been in a fight.  I immediately asked his nurse about this, as they weren't this way the day before.  She said that it happens, it wasn't uncommon.  I didn't believe her.  Later that afternoon, my husband had gone home to get some sleep, and I was about to go and take a shower at my mom's house before returning to spend the night in Owen's room.  Owen's neonatalogist (a wonderful woman) told me not to leave.  This felt like the first time all day someone had been honest with me.  I knew that it was bad... I just knew, and everyone kept telling me that all the things that were happening were "not abnormal". 

She showed me the scans of his brain.  His brain bleed had gone from a level 1 to a 2 in a very short amount of time, and that they suspected it would reach a level 3 very soon. A level 4 meant irreversible brain damage.  We had to take him off of the bypass machine so that we could stop giving him blood thinners.  His blood needed to be able to clot.  The big giant problem with this was that his lungs still couldn't inflate and he would die without the bypass machine.  They told us they would try with the ventilators, but that it was probably going to be over very soon.  I called my husband, but made the doctor tell him what was happening because I couldn't speak.  He came back to the hospital and we sat... and we waited.  We called the hospital chaplain to come and baptize him and ask for a miracle.  It didn't come.  They weened him off of the bypass machine throughout the night and increased his vents.  I literally stared so hard at his oxygen stats that I thought maybe I could change them just with my will.  We stayed the night in his room, though we couldn't hold him.  They told us we could... but that if we wanted him to have his best shot in the morning with the vents, not to.  I wish they hadn't said this.  I wish, again, they had just been real with us and said... your son is going to die tomorrow, hold him now.  That is what I wish.  We could have had more time kissing his face and touching his skin. 

Soon after the morning staff came in, his doctor came and told us it was over.  We could hold him now, and they could keep him alive on the bypass until we were ready, but that it was over.  We rearranged the furniture to accommodate the bypass machine cords, and they placed my son in my arms for the first time.  It was absolutely heart breaking.  Both Lucas and I had a chance to hold him.  We took our only family video.  Then the photographer from Now I Lay Me Down To Sleep arrived.  Then we had our families come in to say goodbye.  You would think we would want to prolong the end for as long as possible.  But we couldn't.  Despite all of the medication, he was still having small seizures in my arms.  He was so sedated he couldn't move or open his eyes.  It was just time to let him go.  It was Lucas, and Owen, and Me... some medical staff and the photographer in the end.  There was not a dry eye in the room.  We told him we loved him, that it was ok for him to go.  They turned off the machines... and then he was gone.  Our son had left this world and we were left lost.  We held him and kissed him some more.  Took lots of pictures without the tubes and the wires.  We got to see his whole face for the first time. 

I remember walking out of there, with no baby.  I remember going to the "family room"  where everyone was waiting... and seeing their faces.  We all walked out together... without Owen.  I cried on the way home... and then I went to bed, and I didn't get out.  The next days and weeks are blurry, with the exception of the funeral.  The only reason I survived was because of my husband, my family, and a wonderful therapist. 

It seems strange to miss this week a year ago.  But he was here, and he was alive, and he was real.  This was only true for 6 days.  I do miss it.  I miss having hope.  I miss talking to him and telling him about his room and his pets and his family. I miss envisioning our life together when it was all over and he got to come home.  I do not miss him suffering.  I do not miss seeing the giant machines that were needed to keep him alive.  I don't miss the alarms and the beeping and the not knowing.  But I sure do miss him.  I miss being a mom, his mom.  And that still hurts today like it did a year ago. 

I was going to write about another experience from this week... but it will have to wait.  I just don't have it in me.  I miss my son....

1st Birthday

My love,

Thank you for showing me what it is to be a parent, and how much love my heart can really hold.  I always knew I would love you, even before I knew you were coming,  but I never truly understood what kind of love that would be until you were here.  Fighting for you was the most important thing I have ever done, and I would go through every second of it again, because you are my everything.  I miss you with all of my heart and I want nothing more than to see you again.  I know that you are ok, I just wish I could say the same for me.  It is really hard being here without you.  I am doing my best because I want you to be proud of me and to tell everyone up there "that's my mom".  I will keep loving you and missing you every second of my life until I can hold you again.  I hope you're with me today.  There is no where I would rather be that with you.

With everything I have,

Happy Birthday,

Mommy

You are my sunshine, my only sunshine
You Make me Happy, when skies are gray
You'll never know dear, how much I Love You
Please don't take my sunshine away.

The Wall

I hit it today.  I knew it was there, waiting for me.  This past week was the last week of school, and I was sick with an ungodly cold and unable to take anything.  This translated into late afternoons at work and early bedtimes.  I did not stop to allow myself to go back to where I was a year ago at this time.  But I knew it was coming.  I told myself I had to wait until Saturday.  School was over on Thursday, and I had an all day training today.  I knew if I could just wait until Saturday I could sit and have the breakdown I needed.  My brain couldn't wait that long.   It all started on the drive to the training this morning.  Some silly song came on by Miley Cyrus of all people, about missing someone who wasn't there.  And that was enough.  I cried in my car knowing I'd have to turn it off and be ok the rest of the day. 

Tonight I came home, watched some tv, ate a snack.  I told my husband about "the wall" I felt like I was coming to, and it all just came crashing down.  It seemed like for a moment, we were both back in May of last year.... still crying, but for different reasons.  We talked about how then it was all the unknown, the "probably"s and the "but maybe"s.  The hope was almost as crushing as the prognosis.  We would lay in bed at night, telling each other that he was going to make it... he was going to beat the odds and fight it.  We sat and tried and tried to think about something happy about those days.  It may seems horrible that we couldn't come up with anything.  I wish I could say that his birth was a happy moment, even though it was scary.  That's not true.  I wasn't awake for his birth so I have no idea.  Was it happy to see him open his eyes?  Yes, but no.  Seeing your child laying in an incubator on so many drugs he can't move is not a happy experience regardless of the situation.  It's something we were supposed to get through to get to a happy memory,  but we never got through it.  Everything ended there.  We came to the conclusion that this is why we can't think of anything happy right now.  There were times that were hopeful and "happy" for us... but there weren't any times that were happy for Owen.  He never got to breathe.  The only time he was held by his parents, he was dying.  Right now we both agree we can't see past this.  I hope someday I can think about his time here and come up with happy things, but I don't know really.  I want to create happy things in his memory now, and hopefully he will be there with us, and he'll remember those things too, where he is.  We are having a little birthday party for him on Sunday.  I want him to be there... to see his family smile at his name.  To have a day all about him that isn't completely filled with grief. 

Planning his birthday, small event though it is, feels like someone is ripping my heart out all over again.  I hope that once the day comes, I will feel lighter, because the planning will be done and I'll just get to think about him.  I can't imagine this day ever passing without the pain I feel now, but I hear it gets easier. 

 <3  I love you my baby... I hope you are growing strong and playing and laughing with your cousin and doing all of the things that little boys should do.  I wish you were here to smash a cupcake on your birthday, so please do that in Heaven for me.  With all of my love,  Mommy. <3

Lies we Tell

Thanks Piper, for sending this to me.



My mom, she tells a lot of lies, she never did before,
but from now until she dies, she'll tell a whole lot more.

...Ask my mom how she is and because she can't explain,
she will tell a little lie because she can't describe the pain.

Ask my mom how she is, she'll say, "I'm alright"
If that's the truth then tell me, why does she cry each night?

Ask my mom how she is, she seems to cope so well,
she doesn't have a choice you see nor the strength to yell.

Ask my mom how she is, "I'm fine, I'm well, I'm coping,"
For God's sake mom, just tell the truth, just say your heart is broken.

She'll love me all her life, I loved her all of mine,
But if you ask her how she is, she'll lie and say she's fine.

I am here in heaven, I cannot hug from here,
If she lies to you don't listen, hug her and hold her near.

On the day we meet again I'll smile and I'll be bold,
I'll say, "You're lucky to get in here, Mom, with all the lies you told!"
Author Unknown 

A random mess of my thoughts

So, I was congratulating myself on the inside for how positive I was being about this pregnancy.  Not that it was all butterflies and roses, but I felt proud of my mental state.   Until last weekend.  I MISS my son.  Like I physically hurt for him.  I love this new little life inside of me, and I know that I have to separate the two if I'm going to keep my sanity.  But why can't I have them both?  Why did he die.... I just don't want it to be his first birthday.  It's too much to handle and I don't know how to make time stop.  I don't want to be a year away from him.  Other people get to keep every pregnancy... all of their children stay alive.  I would have 4 children.  Earlier in my life I might have said "shoot me" in reference to having 4 children.  But I honestly wouldn't care how poor I was or how crazy my life was if all of my children got to be here and grow up.  And Owen was so close to staying with me.  He was doing so well and beating every set of odds he was given.  Until he wasn't.  And I think that's the hardest thing to cope with now... this pregnancy is going along just fine... for now.  Until it isn't.  I don't want to think that way... I want to be positive and believe that this will be the baby that gets to stay. But I've been here before.  The journey hasn't treated me so well, positive thoughts or not.

I want this baby to be healthy so badly.  I need this baby to stay with me and show me that we can have a life outside of this tunnel of grief that we live in.  Already our hope has come back... in waves.  Some days it's harder than others, and today is a hard day.  I don't know if it's just that we're back into May... and I think about where I was at this time last year.  They told me there wasn't much hope, and I hoped anyway.  I cried everyday... but I still hoped too. I was on bed rest, and I talked to Owen every night before I went to sleep, and I told him how many more days he had to stay in so that they could do the EXIT surgery and give him the best chance he could have.  He listened... I know he did.  More than 1 doctor told me they thought there was no way I was making it to May 24th... I had too much fluid, too much stress, and was already dilated.  Owen and I didn't care what they said, and we made it anyway.  It hurts to know that he was still moving around and having a heyday in my belly a year ago.  He didn't know the hurt and the pain that our world would bring yet.  He was just swimming around, happy as a clam, and I miss him there.  I worry about the memories it will bring back when this baby starts kicking, and at the same time I can't wait for it either.

Carrying a rainbow baby is a very.... special... experience.  There is so much hope and so much sadness all mixed in together, and I am glad for it.  I am glad to know my heart can hold them both, even if it hurts like hell... because they are my whole life.