The Big Questions

Tonight I had the pleasure of going to my bimonthly safe place.  That comfy hug that waits for me on the calendar- my healing place.  I get a little nervous sometimes when the conversation borders on religion, and today it was right in my face.
I used to think it made me uncomfortable because I wanted so badly to correct people or to explain why what they were saying wasn'

http://www.amazon.com/Cojo-Grief-David-Kauffman/dp/B000YAADKI

t or couldn't be true.  Especially if it's someone of my own faith or talking about my religion.  But tonight I realized that those things were easier to acknowledge than my own doubt and my own questions.
No one likes being wrong.  Do I believe that we are all right when it comes to religion?  No.  Does that mean I need to convince everyone else that I am right? No also.  And do I ever wonder if it's all hooey?  Yes.  How could I know what truth is if I never ask if it could be wrong?
After college (as I did after high school) I thought I had arrived.  What a long and arduous journey of questioning and researching, praying and reading, discussing and pondering I had been on.  And here I was on the other side- better for all my struggling and searching.
Then Samantha died.  I am glad I had supportive friends and family and a faith community and spiritual direction.  But this time I know better.  I know I won't arrive until the day I die.  So this has inspired me to pick up something my mom bought me that I have hidden on a shelf in my house and deep in my heart.
Cojournal- companion on the journey series- Grief the journey through loss.  It is a journal and CD.  Many times when I have asked God how He comforts me, music has come to mind.  As a musician this ought to be just what I need, and in the past was a little too intrusive.  I didn't sing at all for weeks, maybe months, after Samantha died.  It was hard to sing at all.  Or allow music to touch me.
Well Samantha and Hannah's birthday has officially passed and it is my official season of grief.  Soon it will be March 12 and I will be amazed and horrified that it's been 4 years.  So I take this time to work through my grief in a new way.
Asking the questions my heart truly wonders.  Allowing my heart to be honest with God about my doubt and fear.  Those hard questions that I am just now, rounding the corner of year four, can really ask, knock and seek.

Mother's Day 2013 without my daughter Samantha or my baby, Jordan

Flowers from DH

I had a wonderful Mother's Day spending time with my mom and my daughters.  I got to laugh and relax and receive a lot of love and give a lot of love.

Today for some reason it hit me.  Every once in a while I think to myself "remember when your daughter died?"  It was always there in my heart and then it just hits me in the face.  

I can't help imagining how different I would feel if Jordan were here.  I am so grateful for my daughters and my heart aches for the little 3 year old shadow next to Hannah and the little bundle in my arms.  

Incredible quilt from Aunt Lynn

I am so blessed to have a family that can appreciate how important it is to for my sweet daughter to be remembered.  My DH's aunt sent us this amazing quilt.  I haven't gotten the gear to hang it yet but I can't wait.  I find it so comforting.

I also got this drawing for myself.  A friend of mine is an artist and I found this piece so comforting.  The prayer is the end of the Hail Holy Queen.  I love how the light is a direct line from heaven shielding her from the rain/tears.  There are many things I love about it.

Samantha and Jordan were with me yesterday.  I wish they were here and I want so much to hold them and feel my family is complete.  I know I won't feel that way till I get to heaven.  Which has prompted me to get to confession many times.

I watched this video today and it made me so happy and sad.  Sad for myself and others who suffer the loss of a child or infertility but so happy that we can comfort each other and feel the understanding and love of a community that lives in "our world".

Three years ago I was reeling from the death of my daughter Samantha.  Two years ago I was dizzy.  A year ago I was still.  And now I am still standing.

This weekend is my sisters' baby shower.  She is expecting twins- and the truth is I am ecstatic- when I think about my new nieces.  But when events in her life reming me of mine- sometimes the memories are painful.  I am assuming she may read this at some point (Hi, Sissy) so I won't say too much about it.  But I am hoping that by talking about Samantha, writing about her and going ahead and crying I will be able to focus on the joy and challenges that my sister is and will be going through.

I don't come here very often, but when I do, I still love to see Samantha's little face and name on the screen.   I like to read my memories of her.  I like having somewhere I can go when I want to think about her and not feel alone.

Happy Birthday Samantha and Hannah!

It's just so fun to type that title and see it.  I finally found a way to acknowledge Samantha's Birthday as we celebrate Hannah's.  I ordered this on Etsy and so it was customized just the way I wanted it.  This even prompted a friend and a family member to bring me flowers to the party- I was so touched!

 I had already bought some flowers to honor her- lilies of course- yellow this time.  I also added some greenery for the baby we lost in August (and the yellow).

 I set out Samantha's Scrapbook and Hannah's baby book so people could flip through them.

We also did a balloon release.  I think I ordered these for her first birthday?  I could have been some other event, in any case I love having them and someday I will order more as we release more balloons for each year she would have been.

 This year was much easier than years past- I managed to enjoy Hannah's birthday more than ever before.  I still feel a little surprised sometimes when I realize we will have to celebrate another birthday witout her.  I miss her so much and I still love her as much as ever.  I got to visit the cemetery on her birthday with my husband and just remember what a beautiful little life she was.

Rainbow Angel Baby

Last week at this time I was thinking about how I would announce that we were expecting a new addition sometime in April.  I was thinking of using this picture to announce on Facebook, we decided to wait since we were only 4 weeks along.  We had told our family and closest friends because we were so excited.  Then on Wednesday I started getting ancy and took several home pregnancy tests to reassure myself- negative tests.  On Thursday I started bleeding and had my blood taken.  On Friday I was told my HCG was below 5.  Which meant I was having an early miscarriage.
I am still processing this loss.  It feels so much like when we lost Samantha.  And so different.
I'm not sure what to say about it and I'm still a little scared to be honest with myself about my feelings about it. 
I spent only 4 days knowing I was pregnant. But they were 4 joyful, hope-filled days.  They were excited days and scared days and days of planning.
I want to give him/her a name so I can talk about her, write about her, acknowledge her.  I guess I'll just give it some time.
In the meantime, it hurts tremendously to imagine Samantha hugging her baby sister in heaven.  I hope that all I've learned about grieving can help me be honest with myself and others and begin this new healing process.

The Twins Baby Shower- Ch. 6 The Third Trimester

There are many things about my pregnancy and birth of the twins, and their lives in the hospital, that I never really processed because I had babies that needed feeding and a 2 year old that needed me to keep it together.  Sometimes I wish I had seen a counselor (if I had the time or energy) to cry and be real about how I really felt deep inside.  I was a zombie.  Sleep deprivation is a big factor but so was trauma.
You know how when something is really upsetting sometimes you wait till you get home to cry.  Well, I never got home.
I held it all in for that glorious day- that heavenly and triumphant day when my two babies were with me out of the hospital sitting on the couch together.  I was going to cry and cry with joy that now I could stop being afraid and sad.  I would be whole again.
But that day never came and many compartments of that box never got opened.  Reading this book has opened another compartment.  The day of the twins' diaper shower.
It was like there was this horrible elephant in the room.  I don't know if anyone else felt it or not.  My sister and friends asked me many times if I even wanted to still have the shower, since I was supposed to still be pregnant, but the babies were at the hospital instead.
I felt that I could use a little celebration.  I mean, there was something to celebrate, right?  My babies were born!  That's a congratulations, right?  We had pictures of the babies going in a slide show, and we oogled all the adorable little twin clothes.  The only reason I wanted a shower (since it was my second pregnancy anyway) was that I was super-stressed about double diapers.  I was hoping a nice big stack of diapers would make me feel a little bit more ready  to handle them.
I was terrified of taking care of two babies since the day of the ultrasound.  Then when they were born early and I knew I was going to be pumping around the clock in addition to caring for two newborns who needed extra care, I was really terrified.
So here I was looking for some encouragement from friends and family to get me through the most difficult thing I had ever delt with.  The problem is, what do you say to someone with twins in the NICU?  "Congrats" doesnt quite feel right. "I'm so sorry" doesn't really fit the bill either.
I guess what I was hoping for is- you're doing great!  You can do this!
I don't really remember what people said, just that no one ever said, "How are you handling this?" and I didn't have the sense at the time to say I needed a cheerleader.
No one could have known how much pain I was in.  Having them there was a great show of love and support.
Mostly everyone acted like it was a regular shower.  I suppose that is what I should have expected. I got the little break from reality that I wanted.  But when everyone left, it was back to reality.
In a way I just wanted to scream- I wish I was still pregnant!  I miss my babies!  I can't believe this is happening to me.  I wish that this was my "grieving the times I was apart from my babies in the NICU" blog.  Or my "preemie recovery and support" blog.  I wish this was my "learn from my mistakes with twins" blog.
I miss Samantha.  I wish she was here.  I love her so much.

Hannah's first trip to the beach

This weekend I had the huge blessing and surprise of getting to go to South Padre Island with my family and my parents.  I have been wanting to go (I always want to go) especially since last fall when the "fog" began to lift.
It was a little strange feeling so happy and not seeing the shadow.  I didn't feel the empty space at first.  Then Saturday night we went to mass and the reading was the story of Jesus healing the hemoraging woman and the young girl.  There also happened to be twin baby boys sitting in front of us and a baptism, which didn't help.
Mark 5:21 This was the Gospel reading.  It is full of hope.  And yet for me it is hard to hear.  During the hour that I waited to hear back from the surgeons about how severe Samantha's condition was, I called upon this reading to comfort and encourage myself.  I reached and and touched Jesus' cloak.  I implored him to save my daughter as he saved the young girl in the story.  In my heart I trusted through my fear that he would protect her and take care of her.  Even though I know he did in the most important sense take care of her, I was shocked and devastated when he didn't heal her body as I had asked.
Why not my daughter?  I can't help still asking even 2 years and 3 months later.
In South Padre, the next day bright and early I was blessed with a beautiful morning on the beach.  There was some fussing and crying from Samantha's twin, Hannah, now 2 and 5 months, but after a while we played in the waves.
I sat in the sand right where the waves were kissing the beach.  She sat on my lap facing me with her sweet head on my chest and arms around me.  We just sat like that holding each other for a long time.  Her beautiful hair was sticking together in perfect brown curls and her face was covered with sand.  The morning light glowed behind her like a halo.  Her sweet little body felt so safe and warm in my arms.  I began to cry, thinking of my little angel I'll never hold like that.
The waves gently lapped in and out, then got stronger and pushed me to the side then pulled me back.  I allowed them to move me as I cradled Hannah's body.  Then came a bigger wave and knocked me over.  Then it tried to suck me out.  It's power made me think of that moment I was brought to yesterday.
That moment when my baby was seriously sick and there wasn't anything I could do but cling to her and to hope, as I did to Hannah's body as the waves hit me.  I imagined the sea pulling my sweet Samantha from my arms.  Me, helpless against it's power, yet grasping and reaching desperately.
I didn't exaclty let go, but succumbed to it.

Reading "Pregnancy after a Loss" Ch. 1

No, I am not pregnant, but there is still a possibility that maybe someday.  Plus this book has a lot of good stuff to work out just in case.
The first chapter is called the search for answers.  There are so many things that went unanswered about our premature labor and birth and about the death of our baby.
I always assume that the reason I went into labor is because I was having twins.  I was measuring full term and PTL is more common with twins.  The book talks about the postpartum visit and how that can be very healing because it can answer some of the what ifs.  Her doctor actually told her "There was absolutely nothing you did to cause your baby's death".  What I would have given to hear that from my OB or from my baby's neonatologist.
Or even that there was nothing I did to cause myself to go into preterm labor.  I guess there really isn't any way to know, but it would have been comforting to hear.  Let me tell you about my post-partum visit.  Keep in mind this was before Samantha passed away but after she had been transferred to St. David's main.  I was recovering from a C/S, going between hospitals to see my babies, pumping every 3 hours for about 30 minutes at a time and somehow trying see my husband and 2 yo daughter in between.
This is a doctor whom I chose because the practice had been recommended (I couldn't get into the practice of the doctor who she actually recommended) and I had heard that he was a really great surgeon.  After all that I went through to find a doctor in College Station, when we moved to Austin I was done "doctor shopping".  It was way too stressful and I was already 26 weeks with twins and a previous C/S so I was thinking I wouldn't have a lot of options.  Well he was an older man, not really friendly or chatty but I did find out that his daughter knew a brother of mine.
And it was always quick.  I was in and out and that was fine.  All the aches and pains I complained about he said were normal.  He measured me and said I was great.  I had no complications through my first pregnancy (except for my baby being breech) and there were no red flags here.
So after the babies were born when I was in the hospital, Im not sure if he ever came to check on me.  He didn't actually deliver the babies as he was  not on call at the time.  I don't even know the name of the doctor who actually did it.  I once passed him in the hall of the hospital as I was going as fast as I could from my PP room to the NICU to see my babies.  He said "Wow, you are getting around well."  I nearly hit him.
And when I went in for my postpartum I was in a total fog of stress, trauma and sleep depravation.  As I was waiting in the exam room, a nurse came and said, "Where are they?".  What?  She was looking for my twin babies.  I explained, holding back tears, that they were in the hospital.
Then when the doctor came in I really thought it was my chance to talk.  He thought it would be the same in and out we always had.  I knew he wasn't into "people with birth plans" and "with all their lists".  (I didn't tell him that was me.)  I tried to ask him why it happened and all I could get was that they could never know.  The more questions I asked about exercise, diet, medicine, activity, the more he blew me off, as if it was silly to even ask.
Eventually he did talk about the tests that were done on the placentas, but I couldn't understand what he was saying about them.  Follow up questions got me handed a copy of the tests.  Of course I couldn't read them but at least I could look up the words later.
Then he asked me about birth control.  I told him we use NFP so we would continue to use that.  He said they love for people to have more babies.
Maybe I don't even need to say it.  I never want to see that man again.  Their office never acknowledged my trauma of PTL or acted like they cared about all the horror I was going through.  I don't even know if they know that Samantha passed away.  I don't think any of them cared.
I was already in such a haze that I could barely function, then on top of it I felt so unimportant and stupid.  I wish there had been some comfort there.
I will never again have a doctor who I am not convinced cares about me and my baby.  I spent many months following wondering, if I had a doctor who paid more attention to me, who cared about me and my babies, would he or she have noticed something that he missed?  Would someone have paid attention to all the pain I was having and maybe actually checked to see if I was dilating?
I know it doesn't matter now, except that I will not settle next time.  I want someone I feel comfortable calling in the middle of the night if I have ANY INKLING that something is wrong.  I want someone who I know will comfort me if my babies are in trouble and that will cry with me if my baby dies.
Although this book is bringing up a lot of painful memories and it is hard to thinka bout, I think it's good to write out what happened and learn from my mistakes.  Even if I can't know why I went into PTL or why Samantha contracted NEC, at least I know next time I will have a doctor who treats me with compassion.