18 Months and Counting

It isn't exactly what you would call a milestone.  But last year at this time (LYATT as I like to call it)  Alexandra and I made cupcakes and took them to the cemetery.  That wasn't practical today, but I really wanted to.  I am trying more than ever to remember the happy times with my sweet girl, including pregnancy.  What it was like to see this at the doctor's office. This ultrasound makes me feel so much less like a crazy person.  I really did have twins!  I carried them, I birthed them, I nursed them and I had the stroller!  I just didnt get to take them both home.
So on this the 18 month anniversary of the day I said goodbye to my sweet little Samantha,  I want to smile at her and say I love you.  I want to tell whoever will listen- Samantha was here.  She was and still is loved very much.

These are for a very special project for a group close to my heart.  Because it's far from where I live, I didn't join until recently maybe a month or two ago and I have been so grateful for the friendship and support I have found there.  My Healing Place is helping people at a time when they can barely go on with their lives.  This is very difficult work emotionally and physically.  Not to mention spiritually and intellectually!  They are having a luncheon in a few weeks- for more info go here.  I was so grateful to share these moments with my MIL and with the photographer.  I am so glad to have these pictures to honor Samantha.  Her scrapbook has meant a great deal to me. 
I often feel it was God who gave me that gift.  I went to a fundraiser with my mom only weeks after Samantha passed away.  There was a scrap-booking set which I wanted so much- my mom got it for me :).  The rest is history.  I knew as soon as I got it that it was for Samantha.  I had never really scrapped before so I didn't feel I knew what I was doing- but I needed something I could do for Samantha.  Something I could hold and touch and create.  I wanted to make something beautiful amid the horrific ugliness of my grief.  Everttime I went to buy paper or stickers there was a heaviness about it.  I wondered if the people at Hobby Lobby noticed I was crying.  At first I was looking for black paper.  Maybe white and gold for heaven and some little crosses.  But as I went along I found some beautiful kind of romantic paper.  This allowed me to be much more true to my hurt but also who she really was.  Her death did not define her life.  I was able to focus more on the special memories of the time I spent with her instead of saying goodbye.
This chance to add to my book and to capture where we are right now in honoring Samantha was such a gift to me.  I hope you can see how much we love her and miss her. And how this book has allowed me to share Samantha with my daughters.  They had such fun pointing out Mommy and Daddy and Sissy.  It was so therapeutic to create and so healing to look at. 
At my support group last night they asked a great question.  What did your loved one teach you?  I said "To be present for each moment"  Then she asked me "How?" Whew - what a question.  By her attentiveness and her bright eyes.  By her little cries and her nursing and her wiggling and her snuggling she gave me all these gifts and I wish I had been more present for each one.  As I write memories of her I am digging out those little treasures buried in the fog of NICU life.  But I want to make sure that I am present for all the moments I can of her sisters' lives because life is short.   Also, I am so glad to have people to share that with and to create moments like these pictures at My Healing Place.

Remembering and Missing my Girl

We have had such a hot summer.  I live near Austin and it has just been brutal.  Yesterday we had a "cold front" and it was so refreshing.  And all I could think about was how I will never share a brisk fall morning with Samantha.  I'm grateful for my family and I still enjoyed the day but I can't help that feeling of how beautiful life is and how much I wish I could have shared more of it with her.
Now these brush fires are scaring me to death.  I'm just feeling very anxious I guess and sad.
The one September I did have with Samantha was when she and Hannah were in my belly.  Actually I didn't even know at the time that I was carrying twins! 
This is from Sept 4th 2009 when I went to my first doctor appt.  I would have been about 10 weeks and totally oblivious to how my life would change forever.  It's interesting to me that last year I constantly thought about "last year at this time".  This year (the second year after Samantha's death)  I still think about 2 years ago at this time and also think about last year at this time.  On Sept 12th it will be 18 months since Samantha passed away.  Last year when it was 6 months Alexandra and I made cupcakes and we took them to the cemetery.  I think I may do something like that again.
I went to a support group last Thurs with my counselor who got me through last year.  It was around this time last year also that Alexandra got sick and was admitted to the hospital, so the change of weather also brings back some bad memories there especially since Alexandra had a fever yesterday.  It was neat to be there, I havent gone in a while, to think how much clearer things are this year and how much I have changed.  My whole perspective on life has changed, I hope for the better.
I don't want Samantha's legacy to be a broken mommy who cannot function although I barely did for some time after she died.  But now I want to honor her by showing how much I love her sisters and her daddy and hopefully choosing to follow God's path for me so that I can get to heaven to be with her again.
Her presence or her memory or something is just more with me right now than it has been recently.

A happy memory with Samantha- when I would make the trek to St. Davids to be with her it was truly a hike.  I was recovering from a c-section usually you recover for 6 weeks or so, but I didn't have time!  I drove the at least 30 min drive (trying to time it to minimize traffic) to downtown Austin.  Walk 5-10 minutes from the parking garage to the elevator then down a long hallway to the NICU where I had to sign in then find Samantha's room.  Then I still might have to wait to see her if there was no one to help me.  After a while, I got comfortable enough to stop asking.  It was really hard to get her out of the incubator because of all the wires.  After I got the hang of it I stopped asking if I could pick up my baby- I knew she needed me.  It killed me to think of her there all day all alone.  Sometimes her very sweet Grandma Susie would go and be with her.  We tried to make sure she was visited at least twice a day.  Many times Daddy came by after work.
Holding her was amazing.  It was quiet in the NICU, just the low voices of nurses and the occasional beeping of an monitor.  All I had to do at that moment was love on my girl.  I watched her make faces, I felt her squirm.  Many times I was there at her feeding time so there were times I tried to nurse her, she actually latched on pretty well but she didn't suck very well so I don't think she got much milk.  She sure was working hard though!  She loved to snuggle during Kangaroo Care.  This is the skin to skin contact they encourage with mommy to help with milk production- I was pumping for two at the time- I joined the 1,000ml club (that's for 1 day!!) and also it helps baby to recover faster.  Finally she was where she belonged.  When we did kangaroo care there was a sense of peace that I rarely experienced that that time.  I sat there with my eyes on the clock, calculating.  If I stay for just 5 more minutes I could still beat the traffic and make it to Round Rock Medical Center in time to feed Hannah then make it home for bedtime with Alexandra.  Then after 5 minutes- wait I still have to pump(which took at least 30 minutes) before I leave if I wait any longer I will catch traffic and miss Hannah's feeding time!  I could just go at the next feeding time 3 hours later after bedtime- but I need to rest so I can get up at 6 to be at the hospital again at 8 and I will be up every 3 hours pumping so really I should go.  All the while I'm snuggling my girl and squeezing each moment for love of her.  That damn clock.  I hate it!  Why is it time goes so slowly when I am waiting to hold her then it speeds past when I am holding her.  I took these with my phone.

Finally I say to myself "one, two, three" and I stand up.  One, two, three I open her incubator, one two three I start to set her down. I kiss her and kiss her and kiss her little head and tell her "I will be back as soon as I can.  I love you so much and I miss you.  You are doing great little girl just keep on healing and resting.  Soon you will be with your family."
Then the reverse trek and to Round Rock Medical Center to start all over again with Hannah.  Boy that was an exhausting time.  It's easy to not notice the pain from a c-section when your heart is breaking!  Leaving my angels at the hospital was like torture every time.  I cried and cried in the hallway of that NICU.  Cried down the elevator.  Cried walking to the parking garage.  And really cried in the car.  Then I tried to switch gears and remember that Hannah needed me too.  But she never needed me in the same way.  Samantha was recovering from surgery and was so far away.  Little Hannah was just trucking along through every milestone.
I wish I had a journal from that time so I could remember more vividly what I did each day- how many times I saw Samantha for how long.  I would like to get a copy of her medical records- since this does detail the moments of her life.  I'm glad I have the family blog to remember some of what happened.  I'm glad I have my sweet memories of Samantha even if they are all hard to remember.

Relationships

Grief is like a windshield wiper for your relationships.  Any gunk that was there just wipes away.  You see the other person for who they really are.  After my daughter's death I knew more certainly than ever in my life that my husband is the man meant for me.  His love is so pure and strong.  Whenever I am mad at him or start to think- will things ever get better?  I remember the moment we found out Samantha wasn't going to make it.  We clung to each other.  As long as he was there I felt I could make it another day.  Also, I remember that our lives are short.  I want to spend my time with him enjoying life, not arguing or complaining.
My situation was unique because I moved right because my babies were born.  I moved back to my hometown so I had that advantage, but it was difficult.  Most of the people who had been there when I announced my pregnancy and found out we were having twins were in a different city.  All the people around us were parent's friends and people from our parish where we were sort of new.  Many of my new friends didn't seem to really "get" my loss.  I was pregnant and I eventually came home with a baby.  I think to them my arms seemed full even when they were aching to hold the two babies that I gave birth to.
I had the same problem I read about in some of the other blogs responding to the hop about relationships.  There was an outpouring of support.  Until after the funeral.  Then it was just us.  I still look through my book where all the people signed in at the funeral and go through the cards I received.  I actually have one or two family members or friends who have sent cards since then.  I don't know if anyone realizes how much it still effects my everyday life.  How could they?  That's part of why I started this blog.
As far as family goes I have been abundantly blessed.  Both sides of our families have never said "get over it" or insinuated as much.  I am so very grateful that my sister talks to me about it and allows me to cry with her.  I know it's a heavy burden to hear a grown woman sob and moan.  It takes a lot of trust to share that and a lot of compassion to be willing to share that weight.
The other really difficult relationships to me are the new ones.  I just met a group of new friends and none of them know about Samantha.  I wanted so much to talk about her today during a conversation about naming babies, but I want to wait until I know them a little better.
My only advice is to be forgiving and communicate what you need.  People are not mind readers but generally they would like to give you what you need.  They just have no idea what that is.  A note, a call, an email, or having a friend talk to someone can be all it takes to get people to start or stop talking about your loss.
This can be very difficult, especially with people you aren't close to.  I like to take any opportunity that arises.  A conversation about naming children, about being pregnant, about finding out the sex of the baby, about birth.  Any chance I can share about Samantha and show how much I enjoy talking about her helps others to feel better about it.
We went to visit my mother's aunt whom we rarely see and my mom brought pictures of all her grand-kids.  So I brought my brag-book with pictures of Samantha.  I think they saw how much I needed to talk about her and it helped that they seemed to really care and wanted to know what happened.  I don't sugar coat it if I can help it.  I just try to say how much I love her and how much I miss her.

Wishing for More Pictures

Me and my twins.
Just beginning to write about Samantha's life has made her so much more real to me again.  Sometimes I feel as if I imagined the whole thing.  Yesterday we went to the cemetery to visit Samantha's "spot" as we call it for my daughter.  There was a funeral at the time which brought back all kinds of memories. At Samantha's funeral I felt as if I had to be carried from the car.  I couldnt get out of the car.  She had been dead for days and yet, here I was struggling to say good bye.  Sometimes I wish I had screamed at the funeral.  I feel like maybe it wasnt clear to all who were there just how I felt.  But I assume they knew.  I wish I had some pictures from the funeral. I just scrapped the ones from the rosary and it is so nice to see them looking beautiful and acknowleding my experiences.  I am thinking about emailing everyone I know just to see if anyone might have pics but didnt want to or forgot to tell me about them.  At the rosary I was sort of in a wierd mood.  Even though it was obviously sad- I hadnt gotten to share my daughters with anyone!  They were in the NICU and Hannah even when she came home couldn't have visitors because of the risk of getting sick.  So here I was with an opportunity to tell everyone how special Samantha was.  I told them everything about her.  Some people shared with me stories of loss- some kind of inappropriately but I tried to be compassionate.
One of the best things someone did for me was to just show up.  A very dear friend of mine came and camped out in a hotel and said- call if you need me, or come over if you want, otherwise just forget Im here.  It was a lifesaver.  And then there was the food- oh there was food everywhere.  Not only was it a comfort to know we were not alone, but it was a comfort to eat without thinking.  If I had needed to think, I probably would have starved.
Being at the cemetery is always sad and somehow wonderful.  I feel like I am with her in a special way.  "I believe in the resurrection of the body"  This is something I have said every Sunday as a part of the apostles creed and never really gave another thought to.  We are human- we are body-spirits.  So I do feel that having her body there is special to me.  I imagine her on the day of the Resurrection.  Fully glorified body revealing her true self.  I can't wait to hug her.
It's nice to see her name, even if it is on a headstone.  And nice when people want to "see" her.  No matter how hot it is, it's hard to leave.  I like having our family sort of together.  I want to say more about her life and stop talking about her death but I guess that's where I am right now.  A lady at mass recognized me and asked which was the twin and how did she die.  In a way I thought it was a little nosy- but mostly I was happy to talk about her and that someone cared enough to ask. She said- that was horrible.  I said- it is horrible.  I always want to say "but" after that.  There really is no "but" although there are "and"s.  AND I am grateful for Hannah and Alexandra.  AND I am grateful for each moment I spent with Samantha.  The lady thought she had died before birth- not that it matter so much- but it does to me.  I spend 40 days expecting to bring her home.  It's nice to have her acknowledged.  Even by someone I really don't know.

When Family Comes to Visit *warning * casket photo

These pictures are from March 14 and 15, 2010 (Samantha passed away March 12, 2010).  I can't help being reminded of this time when David's grandparents come to visit.  It seems like it never even happened.  The photos make me feel a little less crazy.  17 months ago when they were here, this is where my daughters were.  I know that may seem a little morbid but it's not meant to be.  I only want to acknowledge that my heart went to this moment today. 
I think every time family comes to visit or we go to visit family, there is a part of me that wonders- where would Samantha have sat?  Who would have held her while I held Hannah- or now chased is more like it.  It's especially hard when we see David's Grandparents, not only because it reminds me of when they came for the funeral, but also because my father in law is a twin.  I can't help imagining all the things we would have been talking about.  How to get their schedules to match, how much work it is having two toddlers.  How to make sure they both get attention and individual identities.  I would have asked her how she did it with hers and we would have that common twin mom bond that we did have for 8 months.  Now I try not to think about it.  When they come I try to think of some way to share Samantha with them.  Show them my scrapbook or some new frame I bought for one of her pictures.  I plan to invite them to go with us to the cemetery. 

It was so frustrating that so many people in our family never got to meet her.  We just never thought we would run out of time like that.  I miss her so much.  I am trying to make her a part of my life in new ways but it isn't the same and it sometimes just feels like a lie.  She doesn't feel like a part of our lives at all- it's as if I am pretending something that isn't true. It certainly doesnt seem to be true for everyone else. But I do believe in heaven and the communion of saints, so I try to remember that even if I don't like the way things are- she is still there. This picture was taken February 25, 2010.  I still don't want to believe she is gone. But it would be even worse to feel she never was. 
You were so beautiful even in death.  I remember you my sweet angel.  I miss you.  Please say a prayer for your mommy's heart to be healed.  I love you.

The Inevitable Question

We made some new friends today.  Sometimes I actually avoid meeting new people just because I know they will ask.  "How many children do you have?"  And it feels so terrible to answer two.  I know I'm not really betraying Samantha, but tell that to my stomach.  We talk about where we are from and I talk about how I was pregnant when we moved... pregnant with Hannah.  Since I'm not sure I want to get into it.  But I do want to acknowledge her.  So I just think about her and wish she was here.
I was working on a page in my scrapbook and I noticed once more my missing 16 days.  The last pictures we took of Samantha were from February 24.  I think actually we have one from March 5 but you can't see her face very well.  There were 2 weeks where she was gaining weight, nursing, taking all her food by mouth, and failing sleep tests.  Her little cheeks were filing out and her personality was emerging.  She was so alert that the nurses put a little black and white design in her crib so that she would have something to entertain her.  They moved her out of the room where she and Hannah had been by themselves, out to the spot where she had been when they first were born.  Or it may have been the spot Hannah was in right next to her.  I remember sitting with her resting on my forearms on on my lap. Her sparkling eyes were looking up at me.  We were just making faces at each other.  Just "talking".  A nurse came by and asked if we were playing googly eyes.  We were.  All this time we got to know each other, we were expecting her home any day.  I never brought a camera to the hospital except on my phone and used it very rarely.  It didnt seem like a time I would want to remember.  If I could just get her home then life could begin.  Hannah came home 2-28-10.  I really thought she would be home by March 6 the next friday.  They kept telling me that her lips turned blue when she ate and she was having trouble breathing when she ate.  I never had that problem so it was hard to be concerned or even understand why that would keep her from coming home.  When Hannah came home it was as if one day they said she was ready and the next day they were discharging her.  Naturally I was expecting a similar experience with Samantha.  Well, that's one twin lesson I did learn.  They are completely separate individuals.  So Samantha's homecoming was delayed three times.  After she passed away someone told me- thank God they didnt send her home with me. Many times I wished they had, so at least she could have come home, and Alexandra could have met her.  We could have all been together even if just for a short time.  But in my heart I don't believe she would have died.  I would never have given her rice cereal in her bottle.  I never needed to. And anyway, she would have been with her mama.  It's so hard not to believe that if her mommy had been holding her she wouldnt have gotten sick.

But I realize this is a futile and negative line of thinking.  This is the last picture I have of her.  March 5she was 4 weeks and 5 days old.  She was still only 36 weeks adjusted and it's one week before she died.  All I really mean to say is that I wish I had pictures of those 16 days.  So I try to take as many pictures as I can of my Hannah Banana.  And whenever someone asks me the inevitable question, I answer as honestly as my heart can and tell Samantha I will never forget her.

The Invisible Current

As I cope with my day to day struggles I often wonder how my grief effects my emotional state.  If I am feeling depressed or anxious I don't know if it's really caused by what is happening or if it's just the undercurrent of grief coming to the surface.  Last night I couldnt sleep. My mind was filled with thoughts of the moment the doctors came and told us Samantha wouldn't make it.  Why didnt I ask more questions?  I should have demanded that they at least try to heal her!  All the surgeon could say was "I'm sorry".  Actually she knelt beside me and had to repeat herself.  That moment is frozen in my mind.  It never ends.  I am living that moment right now- still reeling from the reality that Samantha is never coming home.
I want so much to remember the beautiful moments.  Holding her, nursing her, changing her diapers.  Bringing the car seat to her- boy that was a great day.  But each amazing moment is so bittersweet. I try to rewrite the moments that should have been beautiful.  The day she was born for starters. 
The first time I saw her I was on a hospital bed being wheeled past her incubator.  I was groggy but seeing her beautiful face made it all worth it.  I was so relieved to see her chest rise and fall.  Then to be wheeled by another beautiful face- also mine!!!  I gently caressed each precious head.  The nurses instructed me not to stroke them because it was too stimulating and would bother them, so I held my hand still on one tiny body and then the other.  Thank goodness David, my husband, had the presence of mind to snap a few pictures.


However the way I really remember it- not being able to touch them and seeing them so frail and naked, sprawled among the wires and tubes was horrifying.  I was grateful they were alive, but they did not look well.  The moments when we should have all been snuggling together on my chest, they were alone, separated from each other and me, comforted only by beeps and an occasional diaper change and temperature check.

I suppose it might make more sense to write this blog more like a story and go from beginning to end.  Since it is for me to share, I think I will just tell the parts that come to me.

The First Entry

There have been so many days I had things to say and nowhere to say them.  I thought about opening a word document but it felt too lonely.  I wanted to start a blog but it needed a title and I would have to start from the beginning which is always hard.  I want to share where I am.  I need a place to remind the world that Samantha was here.  I need a place to hear Samantha's name and say it and see it and tell stories about her and remember the time I spent with her and share pictures of her.  I need her to be a part of my life so that I can stop thinking about how she would have been a part of my life and start acknowledging how she is a part of my life.

An important way I got through that first year was with my Scrapbook.   It was something I could touch and hold and do with my memories of Samantha.  This is one of my favorite pages.




This is where she is buried at Our Lady of the Rosary Cemetery in Georgetown.  I wish I could visit her everyday.  But I hope that by starting this blog I will be able to keep her closer. 
To read our story start here.