My babies together!

So, I started working on my baby videos. I have put it off so long, Because I take so many photos it is overwhelming.

I am doing genevive first, since it seems to be a comforting activity while I am missing her (this is my tough period, the time she was actually alive). Plus of the two it is a much smaller job obviously. Anyhow while sorting out the photos look what I found!


Look that is a photo of both of my babies together! It is in the delivery room, inside the transportation unit, ready to go to the NICU. Lillian is in the back, and Genevive is closest to us. I do have a photo of me holding both of them, but this is the only photo of them actually together. Not the greatest photo, but something I was sad I didn't have. There is something about seeing them together at the same time, it makes it feel more real.

Here are a couple other favorites of Genevive on her birthday! She was such a cutie, she looked like my Alex when he was born.

Her very first photo ever! Fresh out of the belly.
Getting cleaned up a bit.

And finally a cry! I remember it was a husky gurgly cry, she was struggling to breath a lot more than Lillian. In fact a nurse held Lillian next to the operating table to see me for about ten minutes, because they were still trying to stabilize Genevive. When she was good enough, they brought her by me for just a second and then whisked them both to the NICU.

And finally here is my first look at my baby! And her first look at me, cause she opened her eyes!! After seeing Lillian, she seemed so big! But she was only 3lb 1oz.

My boy Alex

My son is 8 years old, he is also autistic. Sometimes he comes out with things that just amazes me.

This morning He came out and said "Good morning mom, today is Lillian and Genevive's birthday! But Genevive is really dead, but that's ok we can sing happy birthday to her anyway." "If she didn't die she would have lots of fun and play with Lillian's toys, and they would share. But she was sick and died, that was very upsetting"

Now he does bring her up every so often, not a lot, but every couple months he will engage a conversation about it. It definitely affected him, and he is more aware of it than we first thought. I try not to make a big deal about it around the kids, so that Lillian won't feel weighed down by her sisters death. Most of my candle lighting and things I do late at night, it seems like late at night is when I miss her most anyhow. I can't think of a time I have mentioned Genevive's birthday around him. But he remembered, I am so touched.

It is very clear, Alex misses her too. He was very excited when I was pregnant, He would tell anyone who would listen that there is TWO babies. And when they were born he would beg to visit the NICU. And while we were there he would run back and forth between the two isolettes, it was so cute! He was very upset that he couldn't hold them because of the wires.

When Genevive got sick, we made the decision to let the kids visit her before she passed away. Especially with Alex's communication problems, we felt that he needed to see what was going on to really understand. We didn't sugar coat or hide what happened. he needed to understand there was not going to be two babies anymore. He knows Genevive was sick. he knows she died and when she died she stopped moving. And he knows we buried her.

So when my brother brought him we were all in the family room, and he came up and gave Genevive a kiss. It didn't bother him at all that she was swollen and bruised. When I got overwhelmed I asked them to take Alex out of the room, but he came back in a little later after she passed away. I explained what happened and we removed all her wires and he said "can I hold my baby YET!". I sure didn't expect that, but what can I say, so I gave her to him. And he kissed her and talked to her and rubbed her hair, it was very sweet. I have to say that his presence actually helped me a bit. I was unsure at the time, but now I feel that involving him was the best thing, I think he has a good handle on death, and what happened, and he got his chance to get the same closure we needed to say goodbye.


Happy Birthday Genevive, I remembered you, and Alex did too!

Happy Birthday Genevive

Yeah, I sprawled "Happy Birthday Genevive" on my bathtub wall with Lily's bath crayons. Seemed better than lighting a candle, I am sick of lighting candles.

Tomorrow is Lily and Genevive's second birthday. Can't believe it has been two years already. What a journey.


I am back in my misery and guilt. I can't feel happy, and I feel bad because I think I should be for Lillian. Instead I am such a mix of emotions I feel like a lunatic. Yesterday I told a newly grieving mother, "It gets better, I promise". And it does, it's better this year than it was last year...... but it still isn't easy.

Tomorrow should be a day of twos! Two little girls, turning two! Two little fancy dresses and two little cakes with two little candles each. But half of those twos are missing, and it is just very unfair.

I need to get my act together, Poor Lily can't have a lunatic for a mother on each birthday.

Chatted about genevive today.

Today I had two doctors appts with an hour and a half wait in between them. I ended up chatting with a woman in the waiting room for a while. I was filling birthdays into my new 2011 planner book and she asked about my book. Every year I get a new photo planner. This is what 2011 looks like:
All my kids are getting huge aren't they! She instantly asked about Genevive up at the top. SO I explained a teeny bit about what happened. And she asked a few questions, it was nice because she didn't come across awkward at all. It was a treat for me, I have been feeling melancholy lately. This time of year sucks, the holidays, the twin's birthday, Genevive's anniversary, it feels like I am going to explode sometimes. But I am still trucking, Just thinking about what I want to do for Genevive this year.

RIP Kaiya Rae

Shock and awe has knocked me off my feet over the news of Kaiya Rae's death. On her 5 month birthday she passed away suddenly, with no good explanation. I saw her mom post just once in the cloth daipering forum and remember thinking how gorgeous Kaiya was in her siggy.

Whenever I hear of a new Angel it always affects me deeply. In a small way I relive what I went through with my Genevive, and I feel pain for the new grieving parents. It is such an unfair thing.

But every once in a while there is one that really hits home. Reading this mother's posts it is so obvious that she was totally and completely in love with her baby and enjoying motherhood every step of the way. It is so very very unfair that this baby would have to pass, no sickness, no accident, no reason, and no comfort.

And I feel useless, just some stranger across the country reading posts on the internet. I donated the last money I had in my bank account, a whopping $6.50. I feel a bit silly, but at least I tried doing something. I left a message on her facebook as well, and that is all I can do.

I know when Genevive passed away I was moved by the outpouring of support from my online friends. I hope maybe it is bringing some comfort to Kaiya's mom and dad too. I will never forget sweet baby Kaiya.

Diggin my way out of this hole.

Man, back in a slump! I feel like I am always going up and down, up and down. Now that the headstone is done I am feeling a bit empty. For so long I was working hard on the pamphlet, working hard on getting the headstone. And now all of a sudden it is all accomplished and I have nothing to DO for Genevive. I have to do something, I can't just do nothing, I have tried and I am miserable.

I spoke with our NICU social worker about this just that the other day. She has been a wonderful support during our grief journey. She suggested maybe I could make a little thing to give to parents about making memories. So they have some ideas to go by. That was my original idea when I started my pamphlet, so I do think its a wonderful idea. I have started putting a lot of thought into the best way to approach it.

I also have had a lot of fun sewing lately. I made cloth diapers for Lillian. And I started making some little Preemie size clothes to donate to the NICU this December. This project also has made me feel a bit better.

Oh and I never posted my new tattoo here. It makes me so happy. When I feel like I need to I can look down and see Genevive's actual foot, actual life size. I wish I had done it sooner. It is on the inside of my arm a little below my elbow. My husband has one to match on his upper arm, but no heart, just the foot in the wings so it is more manly, LOL.

sadness

Every night I spend a little time with Lillian before daddy sings to her and puts her to bed. Today we put on her nightgown. Practiced some words, up, down, eye, mouth, and tattoo, LOL. She loves my tattoos, and likes to rub them. And we did some tickles and raspberries and in general were very goofy. It was bliss, she is such a lovely baby. But in the end I always end up feeling a little sad, and thinking about never playing with Genevive. It makes me feel like I just can't be fully happy , and I wonder if it affects Lillian somehow.

Headstone is installed!

I need to buy more chipped marble though, I was surprised to see that a lot of it was missing, and in general her grave was a grown over mess. Sad, since I had it so pretty last time. The temporary headstone I made last year was broken into 5 pieces, that was a bit sad, I had hoped it would be ok so I could bring it home. Here are some photos. I will take better ones Wednesday or Thursday when I get over there to put down more chipped marble.

So first we had to find the temporary stone, that is how overgrown it was. We dug out the pieces and moved as much of the chipped marble as we could out of the way.

Then Eddy and my brother Bill dug out a hole for the stone.



Here is the new stone, Isn't it just lovely! I truly adore it. It is really heavy, I can't even lift it a tiny bit. It is a lot bigger than I expected, the photo doesn't really show how big it is. It is a lot bigger than she was in real life, LOL.
They had to put it in and take it out a couple times to fix the size of the hole.
Big gap in photos here, because I was sitting on the ground fixing the rocks and dirt as best as I could.
My mom bought the little flower holders and the flowers. Purple for Genevive!

So here it is! I am upset we had to leave it looking this way, but I really hadn't expected so much of the marble to be gone. It will look so pretty when I redecorate it this week though.

Here is my headstone crew.... My step dad Dennis, my mom Robin, my niece Olivia, My brother in law Chris holding Lily, My sister Mel, my husband Eddy, me and my brother Billy. Alex refused to get in the photo, so we had him take the picture. Wish we had moved that stroller, LOL. I appreciate the support, and I am glad some family was there. It is nice to know that they think of Genevive. And Kudos to everyone it was so hot, and there is no shade at the grave and no wind at all, on the way home the bank thermometer said 101 degrees.

Now that it is done, I feel a mix of emotions. I am glad it is done, I was worried having the headstone in my van for a couple months, I Didn't want anything to happen to it. However I also feel sad, this was my last big thing. Now there is nothing left I can do for Genevive. I feel like I am done parenting her. Seems odd to even think of parenting a dead baby, but I still feel like she is mine and I am supposed to provide for her. But now I am done providing for her, so what am I left with? I can light a candle a couple times a year, but it just doesn't feel like enough for me. I guess I will have to find a new way to continue my grief.

Mini rant about heaven

Now I will say upfront I am an athiest. I don't believe in god, heaven, hell, ghosts, spirits, angels etc. I just can't wrap my mind around something I can't see I guess. I have no idea what happens when you die, and no idea what happened to my daughter. To me she is just gone, and should be remembered.

In grief this is a tough spot to be in, It seems everyone turns to their particular religious beliefs for comfort. I don't have that. When my daughter died I got a lot of religous types of comments, offers of prayers, people saying I will see her again someday. They never bothered me since it was people's kind thoughts that mattered. Though they don't offer me much comfort either, I don't believe I will see Genevive again someday. If it turns out I am wrong, that would be lovely. That is kind of how I see it, When I die I will figure out what happens, maybe I will go to heaven, maybe I will become a spirit, maybe I will just cease to be and that doesn't sound to bad either.

On the other hand though, I refer to my daughter as an angel, it's a lovely representation. And my husband is catholic so I respect his belief that Genevive is in heaven.

One thing that really makes me angry though is when people represent my daughter running around in heaven, eating cake and chatting with other angels and what not. To me she is my baby, forever 16 days old, forever sleeping and drinking milk. If there is a heaven why would she be older? The whole idea of her talking and walking just really sends chills down my spine. I can't see her any other way than the little baby I cuddled. I don't know if this is a stupid thing to harp on about, but it really does bug me a lot.

The one other thing that really does make me so angry is when people say she belongs with the lord. The lord took her back to him etc. She belongs to me, and my arms is the best place for my babies, no one will ever convince me otherwise.

So anyhow I just wanted to reflect on that a bit. I on no way have an issue with religious people, I respect all religions and peoples right to worship how they choose. And I enjoy when people offer me prayers, I think it is a kind thing to do. But if my daughter is an angel, she is a baby one, sleeping in a nice cushy bassinet.

Twin sorrow.

I spent some time today in the multiples forum I frequented while pregnant. It was neat to see the babies who are toddlers now and read up on everyone. But it made me feel very sad.

I should have two babies, and be posting cute photos, and giving out awesome advice on how to handle twins. I am angry at how many of the moms there complain about how hard it is to have twins. I think its way harder not to, but I guess I am glad they don't realize that.

I am a mom of twins too.


On another note, it has been a while since I have stayed up all teary eyed missing Genevive. I miss her every day of course, but then sometimes it is just so painful its all consuming. But that is happening less lately. Maybe I am moving forward in my life, but I sure feel guilty about that. She isn't on my mind 24 hours a day anymore, I feel like that isn't right. I am not sure how grief is supposed to go later on. I am worried I might start forgetting things. eh, I am rambling.

I am in such a slump. I have hardly done anything in weeks. Online or offline. I am still here, just don't have much to say. I miss Genevive, and I feel very discontent lately. I can't even find a good picture for this post. Blah

Important tips for medical personnel in dealing with grieving parents

Not the most creative name is it? But it gets the point across. Here is the pamphlet I made for my hospital presentation. This project has brought me great peace in Genevive's death. I guess I feel like it isn't all for nothing. I got awesome responses from hospital personnel. And I have to say personally I am very proud of it!! Here is a PDF file for anyone who wants to See my pamphlet.

Important tips for medical personnel in dealing with grieving parents

Of course feel free to save, print, share whatever you want with it. It is my hope that this will be distributed to hospitals that deal with early infant death.

I plan to make a website to publish it on soon. And eventually get some nice copies of it printed to mail out to some more hospitals. Local hospitals in my area already have copies of it.

And Please I am always looking for feedback and suggestions.

Women and Infants

I love my hospital, I had my son there and of course I had my twins there. I watched them nurse Lillian to health and of course I lost Genevive there.

I never realized what an amazing place Women and infants was until that happened. They were wonderful at coaching us when Genevive passed away. And amazing at putting up with us the rest of Lillian's NICU stay. Because I sure was a paranoid difficult Mom. I am not sure what happened, we lost her and a switch in my head flicked. Now I knew a baby could die and my entire approach was different in the NICU. I wanted to be hands on, I wanted to take every opportunity I could to do anything and everything, because you never know. In an instant Lily could have died too.

I felt the hospital was very accommodating to this need. And also went out of their way in other aspects too. The heading doctor on the team came and talked to me every morning when I came in, just to let me know Lily was doing fantastic. We only ever saw them before when there was a big issue. We still see her to this day at the followup clinic. I also got a lot more reassurance from the nurse practitioners as well. Lillian's primary nurse just seemed to understand me, we fit together very well. She let me be hands on and walked me through stuff, instead of just doing it herself, which certainly would have been faster. Anyhow I am rambling.

The point of this post is I am excited I go to volunteer services today!! Now I already did a presentation at the hospital. I spoke about our experience and presented my pamphlet. That got such an awesome response. I was invited to be on a new committee that was forming on palliative (end of life) care in the NICU. I really enjoy being on the committee, it is my way of healing from Genevive's death. Through my experience I can help other parents who find themselves in our situation.

We are also planning to have me do my presentation again sometime in the fall, but 6 times in a couple weeks period at different break times so that more hospital personnel can come. And I guess for this kind of presentation they get some sort of credit for going.

And we decided that since I am in and out a lot, and likely to do more. I need to go have my tb testing done and stuff like that and get a badge, woo! So when I walk in security won't look at me sideways.

Hey tomorrow I will post my pamphlet in case anyone here is interesting in reading it. Or even sending a copy to their local hospital *wink*

Isn't it funny

I always feel like I read all these clever bloggers and I am not clever at all. Everytime I want to say something important and make it sound important and poetic, I sit here staring at the screen like an idiot.
Anyways, I just wanted to say Happy mothers day to all the Angel moms out there. Some of you have other kids, some of you don't. But you are all mothers to the most special babies.

Feeling a little guilty.

I read a lot of other angel moms blogs. And belong to a couple of forums. And a lot of comments are made about visiting the cemetery. And a lot of photos are posted of the cemetery. I rarely visit Genevive's grave. I usually do on big milestones, like 6 months, 1 year, and christmas I did. And I did a couple days after she passed away. But I never leave the cemetery feeling peaceful, It never feels like it helps me.

When we went on the 6 month anniversary we redecorated the whole thing. I did find that to be helpful, and enjoyed myself. I do know a lot of it is was that I am very bothered by the headstone. But now we have one and it will be installed soon, I hope that helps me a bit.

In the back of my head though I wonder if that makes me a bad mom. Or I wonder of other people will think I don't care about her because I don't visit her every week. The thing is I feel closer to her by holding her little blood stained gown or rubbing her little hand imprint than I do looking at the mound of dirt.

P.S. That is a photo of Genevive's casket I took from the car window as we were leaving. I just really felt it was a beautiful sight. Her casket was just so lovely with the little cherubs on it. And the snow and the flowers all made it look so quiet and peaceful and represented how pure and innocent she was so well.

Boy it's been a while

Feels like an eternity. We moved to a new house!! But my computer also broke, and between moving and everything else, it took me a good long time to get it fixed. But it is fixed now, and I can stop stealing my husbands. I am so happy to be back in action.

I have had a lot of thoughts I wish I could have typed about in this blog. But they come and go. The move went well, I was both sad and happy to leave behind the nursery we painted for the twins. We worked so hard on it, and it was a lovely happy room. But I was avoiding going in there as much as I could, because it made me think of days when I was planning for two babies.

I also noticed in the chaos of moving the 14th of March had slipped right by. It was the 17th before I noticed. It was odd not dwelling on Genevive's death on the 14th like I do every month. A relief as well, though I sure did notice on April 14th. It's not that I didn't think of her, it just wasn't any more than I do every other normal day.

Her stuff is now in the new house on the top of the shelf I keep my photos on. It makes me happy there, I think its a pretty setup. I will take a photo of it when I get a chance.

What an awesome poem. It says exactly how I feel.

A Mother's Grief


You ask me how I'm feeling,
but do you really want to know?

The moment I try telling you
You say you have to go

How can I tell you,
what it's been like for me

I am haunted, I am broken
By things that you don't see

You ask me how I'm holding up,
but do you really care?

The second I try to speak my heart,
You start squirming in your chair.

Because I am so lonely,
you see, no one comes around,

I'll take the words I want to say
And quietly choke them down.

Everyone avoids me now,
Because they don't know what to say

They tell me I'll be there for you,
then turn and walk away.

Call me if you need me,
that's what everybody said,

But how can I call you and scream into the phone,
My God, my child is dead?

No one will let me
say the words I need to say

Why does a mothers grief
scare everyone away?

I am tired of pretending
as my heart pounds in my chest,

I say things to make you comfortable,
but my soul finds no rest.

How can I tell you things
that are too sad to be told,

of the helplessness of holding a child
who in your arms grows cold?

Maybe you can tell me,
How should one behave,

who's had to follow their child's casket,
watched it perched above a grave?

You cannot imagine
what it was like for me that day

to place a final kiss upon that box,
and have to turn and walk away.

If you really love me,
and I believe you do,

if you really want to help me,
here is what I need from you.

Sit down beside me,
reach out and take my hand,

Say "My friend, I've come to listen,
I want to understand."

Just hold my hand and listen
that's all you need to do,

And if by chance I shed a tear,
it's alright if you do too.

By: Kelly Cummings

FINALLY

Well, things have been difficult lately. My uncle Steve passed away last week. He died of cancer, and I was there for the last 4 days, it was very tough to watch. Very different from Genevive's death experience. In a way I think the death of a baby is better, even though that sounds funny. When she passed away we were able to do her bath, take photos, do hand prints and casts. Lots of little things like that. With my uncle all we could do was watch and when he was gone hold his hand and rub his head. I am not sure why, I felt there should be more that can be done, but there wasn't. I am just rambling, I am so upset. I love my uncle, and I am so sad to see how much my dad is suffering.

On a different note we finally got the email about the headstone. It is done and ready to be shipped. Isn't it breathtaking!!

Taking a moment to post

I have been so preoccupied lately with Lillian. She is having some severe allergy issues and we are working with the allergist and GI to figure out what my poor baby can eat.

I have been thinking about Genevive though. I wonder if she would have had allergies too? I don't think so, she was a good eater and she loved to eat. Lily struggled with eating from day 1 in the NICU. At one point I was worried because genevive was eating the breastmilk just as fast as I could pump it, and I was afraid there would be none for Lillian when she started feeds.

In the grieving world I made a huge accomplishment recently. Since a few months after genevive's death I had the idea to make a pamphlet for parents losing a baby. I felt so lost that day, I knew I wanted to do stuff, but had no idea what to do. I have been jotting down notes and brainstorms and ideas as they come to me. Well I was asked to speak at the hospital about our loss. What helped what didn't, things like that. So I took all my notes and made a pamphlet for the nurses and doctors on how to help guide us through that day. It went awesome. The hospital media center printed and cut and stapled it for me. The meeting was fantastic, people asked a lot of questions, and I got an awesome response about the pamphlet. SO I will be refining it a bit, and distributing copies to other hospitals. It is very satisfying to me, that Genevive's death can help other people. Then at least I know some good came out of it.

One year ago at this time...

One year ago today I watched my daughter die in my arms. I couldn't fix it, I couldn't save her. I have struggled along for a year. I have watched Lillian grow and felt the pangs of something that is missing. I have gone through milestones and holidays, I survived her birthday. But this pain and sadness enveloped me more and more as this day approached. I work hard to make sure she isn't forgotten, and to help others who are going through the pain of losing a child. But now this day has come, how can I help me myself. I am angry, it is unfair, why my baby? I am sure I will make it through somehow, I have no choice after all. I will hold onto the fact that I am lucky. How lucky I had such a special spunky, active little preemie. And how grateful I am that she is no longer in pain.

I wonder if she means anything to other people. I wonder if her story has made any difference whatsoever, or if my fear of her being forgotten has just turned me into a crackpot.

Perhaps for today everyone can pretend I haven't turned into a lunatic. Say my daughters name, don't ask me to get over it, don't tell me to look at Lillian, don't tell me she is in a better place. I would love to hear a memory, or that she was cute, be outraged with me, I don't know. I miss her, I feel it, and today I am unable to pretend that everything is ok.

A new year

Everyone seems to have a profound post about the new year. Lots of nice resolutions and well wishing. I have none, I am glad 2009 is over, and There is now way this year could possibly be as bad. I think other new angel moms can say it with me, Thank god this year is behind us. Now how do we handle the next? Now I can't say I lost my daughter this year, it makes it sound so less important. I don't like that.

I lost my daughter last year......